Looking back,…what would YOU have done differently to improve your life with ME/CFS?
The Community Reports
when you get it right
you pass it on… Gary Snyder
We probably all have those head-slap moments when ask ourselves (later) “What was I thinking”? In the second blog in the Community Reports series we ask “If you knew what you know now, what would you have done differently in the course of your ME/CFS?”.
The Community Reports series mines the depth and experience of the ME/CFS community to get ideas that can help newbies, relative newbies and even longtime patients feel better in their daily lives. We plough through the answers each blog brings and produce a Community Report that will hopefully help us all learn from the mistakes and wins of others in the community. The reports can be found in the Community Reports section of the website and will updated as more people post to them.
So……onto the question..
“If you knew what you know now, what would you have done differently in the course of your ME/CFS/FM?”
A report summing up your responses will be produced.
Rest, rest and more rest. Now I understand about adrenaline surges (hfme.org/adrenalinesurgetips.htm), many of which got me through numerous unsuitable activities when I was first ill. I wish I’d understood about them then, and that pushing through an activity would lower my “baseline” and lead to a deterioration in my health.
1-I would have looked into Social Security Disability much sooner. As it was, pride kept me waiting and then it took almost another year to find a good attorney, do all the paperwork, be rejected the first time and re-submit.
2-I would also say “no” much more often and not try to meet everyone else’s expectations.
3-I would come to terms with my needs and listen to my body instead of other people’s plans and ideas for me. I am not being selfish to put me first.
Since I am a perfectionist and a “control-freak” and it has been very difficult for me to give up any perceived control I may have over this disease. However, I discovered in doing so (letting go of some, not all), I have gained more control and much less stress.
That was one of my major unforced errors. I should have looked into it far earlier.
I owned my own business. When I first became sick-I figured we would figure it out, find the right doctor, find the right medicine…..get well. I hired others to take my place in the store as well as take my salary for 6 1/2 years while trying to get a diagnosis (all the while getting worse). When we finally realized I might not ever be able to return to work it was too late. Soc Sec required that you have made at least $400 per year for 4 straight years in the past 10 years. I had not taken a paycheck for almost 7 years and so I was ineligible for disability or SSI (which became very important when my husband retired at 69 years old, but I was only 56). We are both having to pay for COBRA insurance through his former employer and we can barely survive because of the cost. We have hired attorneys twice and the outcome is the same. I have been bedridden for almost 9 years and haven’t driven a car for 12 years as my short term memory had become so severe I was getting lost in my own little Mississippi town.
In 1988 my GP asked me if my symptoms were to do with pre-menstrual syndrome! I was so angry that I deliberately walked the 15 minute walk back home instead of getting the bus even though I was exhausted by the trip there. I remember thinking “Well, if I’m not sick, I can and will walk home”. If I had known then what I know now, I wouldn’t have done that. It was the start of severe ME! If only my GP’s advice was to go home and rest. If only…….
Oh, I think about this all the time!!! I would not have tried to continue to work, I would not have listened to STUPID docs to “exercise” it away, I would have seen a CFS doc immediately, (didnt know Klimas exsited) and not after 2 years. Would not have spent my life savings on Dr. Cheney, (bless his heart). I worked in a hospital and not one doc knew anything about CFS, and could not refer me to anyone. I was on my own for research. Oh geez, I could go on and on!
MJ
I imagine that the ‘pushing too hard’, trying to hang onto our past lives, not listened to our bodies more, not spent so much money (I saw Dr Cheney as well but I wasn’t there long enough to spend my life savings…I did spend all my money but it wasn’t that much 🙂 )
Hi – Are you in NORTH CAROLINA? I need to find a new doctor to oversee my health with CFS/ME. Can you tell me where Dr Klimas is?
I did not get a chance to see Dr Cheney before he stopped practicing. I am seeing Dr Flechas in Hendersonville. Wonderful doctor and takes insurance! But he is probably going to retire. Thank you for any recommendations!!!
Dr. Klimas and the other doctors in her practice can be found in Miami and Ft. Lauderdale, Fl.
https://www.nova.edu/nim/clinic/index.html
I would have stopped everything stopped watching all the negative news, anxiety-provoking programs that I loved 100% would have stopped going to the casino and partying all night long, and pushing myself past exhaustion when doing all my hobbies that I loved.
Dr. Klimas is in southern Florida and has at least 3 doctors practicing with her.
I would have found a better doctor, completely stopped everything, and contacted my super fund about a possible claim. Instead, I listened to my now ex-doctor, collapsed and became bedbound, too sick to apply to my superfine in time to get a payout (they have time limitations), and 5 years on, and mostly housebound.
Ouch!
I would have done a couple of things differently.
(1) A Different College – I might not have gone to the college I went to (UCSC) since it was in the middle of the woods and I wonder if I picked something up there. That’s pretty personal to me though and I wouldn’t expect anyone to avoid colleges in the woods 🙂
(2) Rest – I would have rested more. It’s taken me decades to learn how important frequent rest breaks are. I never thought they would make much of a difference but they do…
(3) ) More Landmark – I would continue on with the EST/Landmark Education work, I did it for 10 years about 2 years after coming down with ME/CFS in my early twenties. The program – which is focused on increasing vitality – was a huge stress reducer and the tools it provided helped get me out of bed. Alas I was not nearly well and still unable to exercise but the mindfulness aspects of it were a big help. After about 10 years in I stopped it for about 20 years and recently went back and am experiencing large benefits again (and still can’t exercise much :(). In a disorder without many really good treatment options (I tried them all when I first came down with ME/CFS)….these things can be really helpful.
(4) Been More Careful With My Health – I would not have pushed it with the incident that lead to my ME/CFS…I was traveling from Santa Cruz to Los Angeles on a short break from school when I started feeling nauseous. I contemplated turning around and remember thinking how incredible this was happening now. I pushed on and later found fumes were pouring into the engine compartment (and car) from a spark plug had come undone. I made it to LA OK, got the problem fixed, and then crashed a couple of weeks later (after another exhaust problem (lol) with the car). My MCS started shortly thereafter and became a huge issue…(It has been receding the past couple of years).
(5) Finances/Education – I loved environmental sciences but if I’d known this would last 30 years and take such a financial toll on my family I would have focused on a major that involved sedentary work and would have brought me some money..I don’t regret the money I spent on ME/CFS but I do regret not having much money to spend and the toll on my family….plus god knows what’s going to happen when I get too old to work…
(6)Been More Careful with My Health II – I would have taken my van to a mechanic to purge the air conditioning gas rather than doing it myself – this in retrospect, given how cheap, I later found it was to do this, for me to attempt this. Money was really tight though, and relying on someone else’s knowledge, I pulled the tube only to have the gas explode, literally explode right into my face. My MCS ratcheted up dramatically; it probably took me a year or so to recover from that.
(7) Been More Patient – I would have been more patient – I was astounded to hear Dr. Klimas say you need to stay on a diet for at least 6 weeks to see if it has any effect. .. but I recently read the story of a young child who’s severe arthritis only began to turn around after 6 weeks of a gluten free diet…He eventually fully recovered.
(8) Been More Proactive – I would have kept on trying different supplements – I gave up on supplements for 15 years because of reactions I was getting (after getting energy boosts (lol) and because of cost. I recently tried probiotics to find they were very helpful with my burgeoning gut problems…I’m sure others would be helpful as well.
Ask and insist to have my medical file each time that i go to see the doctor. Because, i will know immediately that the doctor never check which virus make me in the trouble when all my right articulations on my body was burning, jam , not move , zero movement for 3-4 days before some medications help to relieved the paralyzed episode of all my right side. Niw i will able to have all my file and when , in the next 4 years after, the doctors probably might be take me in serious with all the symptoms begin to appeared and for now 17 years laters i’m again in the battle to proof that i’m really sick.
If they which virus other than check a blood red cell , i think that it will be more facilitate for us and study more efficient. The years pass and the exam was not the good. It very expensive to do not the good exam!
Its a fight in hole black
Its terrible, we need money to pay our bill .
I was also in a hospital when i worked in my life, nobody listened me.
I would not have spent $10,000 on alternative medicine (in 1988 dollars). Except for Feldenkrais bodywork, which actually helped the pain. Everything else, acupuncture, homeopathy, Chinese herbs, regular herbs, bunch of other stuff were a vast waste of money and did squat. I would have tried to walk more, though it’s tricky. But I’m in my 60s now and the effects of deconditioning mean I may wind up in a wheelchair full time.
I too would not have spent the first two years trying hard to exercise as much as I could–I had exercised all my life (it struck me very late, at 74!), and that had included recovering from heart surgery when I was 71–it had worked just fine then, why would it not work again? But it didn’t… Now I do much less, but feel a bit better–but still desperately miss being able to take long walks, ride my bike freely, etc. etc. It has taken me years to adapt to such a low activity life, and I am still not really adapted–still hoping one day to be able to forget about my car and just walk… Chris
This is a tough question, Cort! I can only say I would have fought harder and longer, and worked on keeping in touch with many patients around the country. I said one prayer in the beginning, in that I asked God to help me and if I could help one person suffer less than I did, I would ‘accept’ this illness and disability. I had one address book stolen and one fell out of my purse somewhere, so I lost contact with co-sufferers that I had grown to love. Staying in communication with friends during this disability is crucial, it can change lives. I would have ignored disbelief, ridicule (because of the name) and I would have had more courage. Yet, I truly believe I did the best I could in my personal situation. Anyone who survives this suffers loss of such magnitude it is mind-blowing, so each day has to be a new beginning. Gratitude for what I do have needs to be in the forefront of my mind. Thanks, to all.
Thanks for reminding me that I have other very important things to be thankful for. (My 3 children)
I wouldn`t have worked so long and pushed myself beyond my limits.
I would not have listened to the doctors and followed a graded exercise programme.
I should have pushed for more help and support from my doctor.
I should have read and learnt more about this illness but then I did not have access to the internet.
What a great question
Realized early on that I was sick and needed to just rest rest and rest some more and not engaged into push and crashing
I would not have gone to any doctor who did not have an interest in CFS
Would not have exercised except in small small increments
Would have understood the difference between energy and adrenal energy
Would have taken sleep meds much much much earlier and made that a priorit
I just had a friend who had the flu for two months – when I tried to tell her to be careful – she really didn’t want to hear it. Our societies attitudes perpetuate this illness.
Carol
I was lucky to, after a couple of years at Kaiser and seeing other doctors (this was in late 70’s when CFS was not CFS :)) with no idea of ME/CFS, to find alternative based doctors who knew of the illness. Unfortunately, they were no help :)….
I would have tried very, very small exercise programs as well…
Hello, in connection to resting and particularly resting when unwell, have a virus, infection etc I have this thought to share…
Growing up in the UK, I was surrounded by horses. My dad was a horse vet and my mum trained people and horses to jump.
The horse world still had it’s connections to common sense and wisdom then (1970’s).
I remember someone saying never exercise a horse who has a virus because they may never get better.
Remembering this recently, Aug 2019, I thought I’d check out what’s going on in the horse world now.
I found a website called Equilis and was asking about equine influenza.
They have very sensible advice; for every day of a raised temperature the horse needs a week off exercise.
Maybe we should go and see a vet, rather than a doctor.
Tracey Anne
I would have accepted my illness and found a way to reduce the stress in my life. It is easier said than done but in my case, I believe it would have made a huge difference.
I would have changed my preferred method of health care….denial! I would have not continued to work work work until I no longer could. I would I would have seen a functional med dr sooner ( I had already been seeing 2 of the top CFS docs since first became ill in 2011 — I was one of the lucky ones..).
Noelle: I am very curious as to what the FM doctor did for you. And also what the top CFS docs told you. Are you still sick? Or have you recovered? It recovered, what has worked for you?
I would have done Tick-Borne Illness testing right at the start and in the States not Canada. Both of my adult kids are recovering from what was diagnosed as ME/CFS (by one of Canada’s top ME/CFS MD’s) by being treated aggressively for Lyme and co-infections. My daughter is 80% and my son about 50%. That’s coming up from bed-ridden. We are still treating and still progressing.
Susan: as a Canadian CFS patient with a severely ill adult daughter I am very interest in the name and location of the doctor that treated you. Thx!
Susan, I would also like to know who tested your kids for tick-borne – I don’t mind to go in the States. Since being back in Canada, I have never seen such delusional medical practitioners. They will not acknowledge that I have ME – even if I have all the documentation from the States.
When I first got ill with a virus ten years ago, I was left so weak that I could not stand for more than two minutes, my GP was adamant that I was suffering from depression and he put me on anti-depressants.
I wish I followed my instinct (knowing that this had nothing to do with depression) and not followed this ill advise.
Because of this bad advise, I lost two years in my initial illness when it is crucial to follow the advice of what others have mentioned above…resting as much as possible and starting on strengthening supplements and/or methylation protocol and/or anti-virals. All these are much more effective if started right away.
Instead, I just kept getting worse since these anti-depressants were of no help at all. Some even had adverse effects on me.
I started anti-virals 10 years into my illness and they helped me get out of bed daily. I went off them a year later, and found myself back in bed, unable to get up except to use toilet and try to scramble together enough food. So I feel it is never too late to try this treatment.
I would ask for more help, listen to my body when it told me to stop and move to where a helpful doctor practiced if at all possible. I finally did so and my quality of life ( including a 90% reduction in chronic migraines) has improved, I can go for short walks, shower myself, drive again etc. and while I still have a long way to go, I had forgotten how good it feels not to be in pain all the time and barely able to move.
I would have started coffee enemas much earlier. They may be controversial, but I and another beloved friend are feeling better than ever since starting these. Plus, I look my age now instead of twenty year older! :). Just saying that is a nice perk
I woul
If any if you or those you know have chronic migraines, I suggest trying the protocol in this book: “Heal Your Headache: The 1.2.3. Program” by David Buchholz, M.D. He is a Johns Hopkins doctor dealing with the toughest chronic headache cases for the last twenty years. Helped to change my life!!
If you have chronic migraines or headaches check out the protocol in “Heal your headache: the 1 2 3 program for taking care of your pain”by David buchholz, M.D.
That’s interesting. I began an antiviral program with Dr. Pridgen about 4 years ago. It really helped my Fibro, but did nothing for my ME/CFS.
Excellent question.
Difficult to answer as in my case it was more than 10 years before I had an ME/CFS diagnosis – not that I feel that is satisfactory in explaining what happened.
As with previous posts I would not have tried to continue as if nothing was wrong. I’d started off working life in an ultimately unsuitable occupation and had returned to education as a mature student so I probably already felt ‘behind’ my peers.
Regardless I should have recognised that something was obviously not right and taken as much time out as needed. Its easy when young to assume that life is short and it’s some sort of race. But in the context of a whole lifetime (and decades of illness) a year out is nothing. So you’re a few years ‘behind’ – so what! Don’t let anyone else live your life for you.
Having said that I still find it difficult to follow my own advice even with 20/20 hindsight. I wish I could convince myself that its not necessary to fill every moment of every day with ‘doing’.
I’m not a very good mindfulness student I’m afraid.
Gee, I see a pattern we all experienced! i can relate to all of this! Especially the “depression” diagnosis. I hope we can spare someone from these horrowers by putting ourselves out there and sharing. Bless you all and the internet! Keep up the good work Cort, and a donation is coming your way! lol
Thanks Mary…That reminds me – If I’d known this would last 30 plus years I would have made finances a priority early on..and readjusted my educational goals. I’ll put that in my answer up top.
Seeing Dr Cheney was the only time I got sustained symptom treatment. If I had seen him sooner, he could have helped me sooner. It was very hard to admit I was so sick that I needed such a specialist as he is. No regrets with him. Maybe that is aided by the visits being mainly covered by my job’s health coverage for out-of-network doctor and my persistent husband who got them to understand the doc was truly with me and only me for 7 solid hours, not just a quick hello. Now, I do not have that kind of insurance coverage, nor that husband.
Given my massive problems with sleep, I would have followed out the one piece of advice I skipped from the doctor who diagnosed me — to get a baseline (start of illness, I was already sleeping too much) sleep study. When I stopped sleeping at all, I might have had some clues of what went on in the early years when I slept so very much and could always sleep more.
What I wonder so much is if it taking a sick leave as soon as I got the diagnosis would have made any difference in this very long run. The doctor who diagnosed me said there was no evidence (and probably was not then) that quitting work would make me better. He was clear on setting limits and priorites, 1, 2, 3 and then stop, do no more. He told me to stop my exercise class if work was my top priority. I did, and it let me get to work every day. I was cut in half on the day this disease began. Could I have recovered, or not fallen to my present low levels had I stopped early on? The other side is that I was doing one of the most interesting projects of my career, using all my life energy on it. The project came to an end, was put in practice, a success. I think back on that period of work with great satisfaction, a one-time chance for me. Had the option of ‘drop everything and rest’ been presented to me, would I have done it? Even now I do not know the probabilities of that working, versus the disease just taking its course.
Otherwise my regrets are pointed toward the medical community who could not help me much at all. I yearned for the knowledgeable care I got when alleries and asthma entered my life. Now I am on pretty much on my own and wishing for wise advice.
I should have mentioned that Dr. Cheney got me out of bed! Want to give credit where it is due, and he was a champion in assiting with disability letters. At the time he was a lifesaver and the first to validate I had CFS. I just saw him too long considering my finances.
1) Fired some doctors earlier in the game,
2) Hired a good lawyer and fought harder for the “75% of total income for life” long term disability due to me from my then employer AstraZeneca (thanks Big Pharma).
3) Pursued Lyme disease regardless of the negative Western Blot test
4) Stopped working sooner
5) Gone back to the ridiculous doctors who tried to prescribe antidepressants when I clearly DO NOT HAVE DEPRESSION!
6) Questioned the white powder on my clothes and shoes each day after working in an open format hearing aid and ear mold factory as a technical audiologist, and where at least 3/100 employees became chronically ill, 2 with ME/CFS that I am aware of.
7) Taken legal steps to insure that I owned the charitable arm of the super successful benefit mountain bike event I worked so hard to develop, so that it would still be benefitting ME/CFS research.
I totally agree with #2. I too should have hired good lawyers right away in my long term disability case. I ended up losing this much needed income on stupid technicalities.
So did I. In fact, I lost the entire opportunity…
Claudia:
I, too, won my disability lawsuit – only to lose it (so to speak) to the attorneys – all after a 3 year battle that nearly destroyed me both mentally and physically. I worked for GE/Martin-Marietta/Lockheed Martin (ownership changes). They were great, but their insurer (Cigna) insisted that FM was a psychological illness and therefore only paid my disability benefits for 2 years as a result. Nice, huh?
I too was denied LTD until I hired an attorney who got 50% of the meager settlement I ended up with. Sad that I worked in the medical field for almost 30 years, paid premiums for my LTD, had a doctor who said I couldn’t work, but still was denied because their doctor said I could work.
Ah, so many, unfortunately. #1 would be taking the low dose medication prescribed for helping with sleep early in my illness. Left it several years to late, and left wondering now what might have been.
I had a similar experience with a drug for parasites…It seemed to be working really well but I was having side effects. My doctor was aghast that I stopped and when I picked it up again (I think I picked up the same drug again (lol)) it didn’t have the same effect.
I wish I had known that the push/crash cycle was damaging! I wouldn’t have kept working at my demanding job (elementary school teacher) while sick. Twice I recovered and when I went back to work the first cold I caught from a student started a new bout. I have not yet recovered from the last onset 4 years ago.
I wish I had gotten diagnosed earlier. Even though I was experiencing long (7 months the first round) bouts of extreme ‘chronic fatigue’, I knew that CFS was a black hole, medically. Since none of my doctors mentioned it as a possible cause, I sure wasn’t going to bring it up. And so for nearly 2 years I was undiagnosed, bedridden for months,then pushing and crashing wildly, while unbelieving doctors told me to just get some exercise. I was a person who biked to work, swam daily in the ocean (and Cort, this is Santa Cruz, so you know how cold the water is here), hiked and backpacked in the High Sierra, etc. A physician friend out of town suggested I look online at the CDC definition of CFS, and that started the chase for diagnosis and treatments.
I wish I had asked for help from friends when I was at my lowest. I was used to being the ‘giver’ always, bringing dinners to sick friends or new parents, covering yard duty at work for colleagues going through poor health, and so on. When the tables were turned and I needed the help and was relegated to bed or the house for months, I didn’t ask. People don’t read minds.
I wish I had allowed myself more fun. My husband and I didn’t take a vacation for 4 years. Money is tight, and I kept waiting until I was healthy again, since vacationing to me means hiking, biking and swimming. Last summer we went back to Catalina, and while my husband exercised vigorously, I made sketches and soaked in the scenery. My brief swim every day was worth all the gold in the world to me. Granted, I was too weak to make that trip for several years, but I bet we could’ve done it sooner. And my wonderful caregiver husband needed it just as much as I did.
Santa Cruz Stephanie! What a place that was for me. I feel in love with nature, had some ecstatic experiences and fell apart…You were really something – that water is freezing!
I had a somewhat similar experience with doctors; in the 80’s when CFS started getting some publicity I took a look at it and stayed away….I knew I had it but the news was so dismal that I purposefully stayed away and happily kept on my steady diet of push-crash, push-crash 🙂
I got sick in 1985-86 and I saw Dr. Cheney immediately as well as a local immunologist. I continued to see Dr. Cheney for well over a decade, and during that time he took my insurance. On my last appointment I remember putting a huge amount on a credit card, and it took me by surprise! That was my last appointment. I’ve seen Dr. Klimas during the last few years, and in the interim had a doctor I felt good about.
I have to give myself a break on this topic. I did the absolute best I could with the information I had, and to this day I continue to do the same. I honestly don’t think I would have done things differently after being diagnosed.
Before being diagnosed there is one major thing I wouldn’t have done had I understood the ramifications. I worked as a consultant for Nasa and aerospace companies for many years on the space shuttle program, and was exposed to a lot of carcinogens, radiation and toxins. A headhunter tracked me down for the this position, and the money was through the roof. It was while working on this project that I became immediately severely sick, and never recovered.
But to go back and try to pick out things I ‘Woulda Coulda, Shoulda’ done differently is not productive to me. I continue to go forward and try to do the absolute best I can with the information that’s available.
For people newly diagnosed though, I would agree with some of the others in suggesting they rest and not try to ‘Achieve, accomplish and push forward.’ It seems many of us were extreme Type A overachievers. I was. Pushing yourself when newly sick is only going to increase symptoms, and delay chances of recovery IMO.
Also, to get their diet right immediately. To give up all sugar, all processed foods, and all junkfood. To start eating organic fruits and vegetables, and high quality hormone free organic meat. To carefully supplement with high quality supplements, not stuff from Walmart, Costco etc…Many of those vitamins and supplements are being formulated in China. Even if the bottle says ‘distributed from San Diego, Ca’, it doesn’t mean it’s American. Buy from Whole Foods or your local health food store.
And to concern yourself as little as possible with friends, family members etc…who don’t understand or are not supportive of your illness. Take care of yourself and try and get the best help you can afford. And research and read as much as possible.
Best,
Questus
I would have given up sugar more religiously… I think I always had gut problems and they’re alot worse now. I would have tried to nip that in bud with probiotics, fermented foods and no sugar. (I cut down my sugar alot but more would have been better.)
I agree that arguing with family, friends about this illness or comparing yourself to them is an utter dead end.
does agave syrup count as sugar?
honey?
stevia?
xylitol?
Thank you for this fantastically helpful topic
So far as I know agave and honey does and stevia and xylitol do not but I would look further.
Oooo! Yes! That’s a good one. That not all supplements are created equal, and that often you get what you pay for.
Not necessarily! Consumerlab test supplements by different companies, to make sure they have what they say they have, and nothing dangerous added. The best supplements are not always the expensive ones.
I would stop working and do everything i can to stop overactive sympathetic nervous system activity.
I would not have followed the advice of ignorant and bullying doctors, such as Push Through, Take these anti-depressants, Do Neurofeedback, Take hormone replacements.
I would have consulted a Lyme Literate Medical Doctor, even after testing negative for Lyme Disease. I cannot emphasize how important this is. Even if you do not have Lyme Disease, an LLMD may be better able to get to the root causes of your illness than many other specialists.
I would not have ‘locked in’ to a well-known CFIDS/ME specialist who was kind and sympathetic but never gave me appropriate testing or treatment.
I would not have spent thousands of dollars on expensive supplements such as transfer factor, mushroom extracts, vitamin injections, etc.
I would have searched the Healing Well website and the LymeNet Forum for information.
Definitely a push towards more Lyme testing in several posts…That’s interesting..
also — i would have consulted this website! Thank you, Cort.
🙂
I would never have engaged in the Teitelbaum protocol,in particular the sleeping medication(Klonopin and gabapentin) that only makes your brain chemically dependent and annihilates the spiritual aspect of dreaming,and the hormonal replacement therapy(testosterone,DHEA,melatonin)that shuts down your endocrine system even further.After 5 years it is virtually impossible to reverse all of these changes.
But most of all,I would never have pushed my body or mind one inch beyond their boundaries in order to keep recognition from friends,family etc. I know for sure that it’s because of the cumulative effect of these transgressions that my illness has worsened.
If I could do it all over again,I’d go “natural only” and rather die than go chemical.
Klonopin and Gabapentin were the worst two drugs I was ever given. Don’t go there! I became Suicidal on Gabapentin and was then given several psychiatric drugs to ‘cure’ a drug-induced side effect! I now have Protracted Acute Withdrawal Syndrome and Drug-induced Dystonia in addition to ME and Fibromyalgia! I wish I had stayed away from doctors and trusted my own instincts.
Altered my stressful career and lifestyle. Stopped getting all immunizations. Started water aerobics as my primary exercise routine.
I would have listened to Incline Village survivor Erik Johnson sooner. That alone would have saved me years of pain and misery, and a lot of money. For those who don’t know, Erik served as a prototype for the syndrome and by utilizing evidence that has yet to be investigated, he went from being severely ill to a recovery so dramatic that he was able to climb Mt. Whitney…..ten times. I will tell you something else: anyone who tries to minimize this is NOT looking out for the interests of patients.
What Jeri said. See the website, including her testimony.
Which website – got the URL?
http://www.cfsuntied.com/videosvictims.html
I would have never done one interview with out it being called ME at all times and asked to read the definition before they use the CDC definition which does not descibe my disease.
I would have given up trying to do things for almost two years when it was clear that I was getting worse and worse, and I would have stopped the medicines that was making the situation worse earlier than after four years of illness.
many things I did right, like looking for specialized doctors instead of general ones after finding on the internet about ME, one year into the illness, and after the first specialist (immunologist) spent half an hour telling me how that was incurable and that I should NOT apply for social security and go to a psychiatrist, giving up all hope on western medicine and concentrating on alternative therapies.
Hi All,
I would have avoided the visits to the shrink…after a time he said I didn’t need to be seeing him and that something must be going on with my health other than mental health. Back in 1985, there wasn’t really anyone to do anything…guess I could have saved a bunch of co-pays. I had a bad flu bug while there was black mold in my bedroom closet from a roof leak that the management company didn’t have the money to fix until after they sued the roofing company…joy! I just never got all the way better…and gradually other symptoms arrived. I had to research on my own for awhile, and as tests showed nutritional deficiencies I used appropriate supplements and paced my activities…regained my life to a large degree and continued to work as an urban transit bus driver for 35 years…until last October…another viral infection left me bedridden for almost 3 months…my SSD just got approved and I am processing my Disability Pension this month. It was not the way I had planned to finish up, but I will embrace the possibilities. I would have changed my diet back then of course. For some reason we are very susceptible to having our Autonomic Nervous System go nuts with subsequent infections or major stressors. I am climbing out of the hole again, but at 57 it is taking its sweet time.
In some ways, I feel like there wasn’t much i could have done differently due to the lack of knowledge available to us at the time I was diagnosed. That was around 1999 or 2000 only AFTER I had to go through some cervical spines surgery that didnt correct the horrific pain I was having.
Then again….I could have been a lot more assertive and demanding of the physicians I was seeing.
From Facebook
Noreen Masi Everitt wrote: “Don’t go on meds… None of them worked & made my life worse… Change environment, living area..Have allergy tests done & move if you can.. made a huge difference. Go more natural, in both food, nutrution and physicians. Chiropractor works best for me.. also physical therapy actually helped quite a bit.”
Fro Kathleen Weber on Facebook
Listened to the advice of people who had seen this “thing” before. Listened to their advice. Of course we were trained not to listen to it by society. If you were a reading child you could come across things that no one should have listened to.
I would have sorted out my diet immediately and not tried to cheat my body. This is the only thing that has made any real difference in terms of curing myself. Rest obviously helps but that and other advised things only make symptoms a bit easier, diet is the key to controlling the condition.
Please tell me what is the best diet to follow
From Joy Kelly on Facebook – https://www.facebook.com/groups/2379871070/permalink/10151531716751071/
This is very interesting. The thing I would do differently is to do 3 years ago what I am trying to do now- stop trying to keep up with other people, discard all expectations, get rid of activities that don’t sustain me, and distance myself from people who don’t help. In other words, wake up to the fact that I have a serious disabling illness that needs a drastic change in lifestyle.
Just one more thing I should have done. I should have told my specialist at age 33 that I had chickenpox at age 26. I forgot, thinking there was no connection. MC
I would have had my titres measured for vaccination requirements at my college. I never would have gotten the MMR or Flu Vaccination the second time around.
I would not have gone back again and again to the same nasty doctor, that after I begged her to please tell me what was wrong with me, why was I so sick, sent me to a psychiatrist…when I go see her now the smirk on her face when she asks me ” ok, what can I DO FOR YOU I just want to smack her in the face. Actually, when I have an issue that I know a doctor can actually see, such as a bladder infection or an injury, I go to extended care. I have so many bad doctors I just don’t have the energy right now try to find a new one because I know in my area there just aren’t any ME literate doctors. Recently I’ve been researching Lyme. I live in Virginia as a child and was bitten by many ticks, and got very sick a few times. Of course, that would mean I have Chronic Lyme, something most doctors don’t even recognise. And because I live in Southen California, there is less of a chance that this diagnoses would be persued. If I knew now what I now now about my push/crash I know I would have rested more, but I wouldn’t have had much of a life being that I’ve been sick most of my life..now I don’t have a choice, because it doesn’t take much to cause me to crash.
After finally being diagnosed, I would have realized earlier how important the protocol of the Bruce Campbell course and information site http://www.cfidsshelfhelp.org was going to be to my improvement. I followed much of his advice, but have after 6 years discovered that it all seems to work to my benefit.
I would have used my pulse monitor earlier to see what was happening when I felt short of breath and when. Working to 60% of my maximum pulse rate keeps me from crashing. Stopping, sitting, or just slowing down keeps me safely active as per Dr. Klimas and Connie Sol via the ME-CFScommunity.com videos.
Flat rests in particular work for me. Sometimes only 5 minutes of lying down in a darkened room on my back with my eyes shut works well for me. My eyes open when I am ready and and I roll over and get up refreshed.
I would have considered nutrition earlier. Currently I make my own soya yogurt and the live cultures have made a great deal of difference to my gut health and now my increasing energy over the last 6 months.
To be honest, it has taken me years to get enough insight on how I could best manage this illness.
And how much I personally was contributing to my problems by inadvertently creating push-crash situations in my physical, emotional, sensory and mental spheres.
Whilst I regret that this understanding has taken me so long, I feel gratitude that I have this level of personal understanding. It is water under the bridge now and I need to celebrate the improvements I have been able to make.
Thanks Suella, I believe, much to my regret, that doing this kind of stuff is the most effective for me :).
Is the soy yogurt difficult to make? I’d love to give it a shot. (How about rice yogurt or almond milk yogurt or coconut?)
I would have paid more attention to the early symptoms and sought more information, rather than let more symptoms accrue, which made it so much harder to reverse my illness. Ashok Gupta and Annie Hopper brought me the ultimate answers and complete health, but there were other sources online that I missed, partly through confusion but also through a kind of denial in the early stages.
The main thing that comes to mind after having been ill since 2009: I wish I would have stopped and allowed myself to be sick. Instead I pushed through and showed up in my classroom and taught anyway. Today I believe that it made me sicker, but I was so brain fogged at the time that it never occurred to me to take off the rest of the semester. I was lucky and was diagnosed by a me/cfs specialist a year after the initial virus took me down. I shake my head at myself now thinking back on it. When I fell into my second big relapse a good friend of mine told me on the phone: “Sometimes you have to fall into the arms of illness and just allow yourself to be sick.” I never forgot that line.
I’d apply for disability in the first couple of years after I knew this wasn’t a “take a few herbs, eat right and kick a persistent virus” illness. I was very fortunate in the early years to have some circumstances that helped me stay more well than others: I got a fairly early diagnosis (w/in a year) because there was a alt-medicine focused MD working with a nutritionist here in my city at the time focusing on CFS and Fibro. I had also been laid off so wasn’t working full time and had/have some money to fall back on. Knowing about pacing from that doc, doing/taking other things they recommended and such and not having to work full time helped me not overdo it in the early years and is probably why I am still a moderate case. But, it also made me think I shouldn’t apply for disability – I figured it was a waste of time and wouldn’t get it and I had assets. But, 12 years later, that doc is long gone and I’m going to get a new real diagnosis (when I mentioned applying for disability now, my GP acted like she and I have never discussed it; I changed doctors). Now, I have to travel to Dr. Lapp (closest choice – might try Klimas if convinced to) to even get a bleeping diagnosis and the tests to then devote a lot of energy toward that, and at a time when I’m having to do some more care taking of a parent. So, don’t feel guilty even if you have means to sort of support yourself.
And, don’t allow yourself to become deconditioned even if it’s hard to pay for what’s working for you (for me it was Pilates classes; I was able to do them regularly even w/ CFS but slacked off when prices jumped and haven’t gotten that muscle tone back). Classes are cheaper these days, but I’m so out of shape it’s hard to make myself go.
Cort, I also attended UCSC and studied environmental studies, class of 1983, super doer, very active in all ways. Vaccinations for a trip to Nepal in 1989 triggered my CFS and chronic Epstein Barr virus. If I had known this would happen, I would have skipped the vaccinations or split them up so I didn’t have them all at once. My immune system was compromised. I was diagnosed with CFS in 1994 after having two wee sons. Then the push/crash cycle happened all through their growing up.
I wish I had seen Dr. Petersen or Cheney in the early 1990s when I had a chance and they would have accepted me as a patient. I wish I had not given up on treatment options in 2004, because at that point a Dr. in Sacramento diagnosed me with chronic reactivated Epstein Barr virus, and said all I could do was “Wait”. I had spent so much money on acupuncture, homeopathy, herbs, Dr. Jay Goldstein in Anaheim, Dr. Jesse Stoff in AZ (who helped me! Then he stopped practicing), Dr. Kogelnik, reiki, energy work, etc. that I just gave up on everything and decided not to spend any more money. I did not do any research online or talk to any other CFIDS patients for years, until very recently. I feel that I wasted a lot of years not doing research, as the Internet was exploding and wonderful folks like you were networking and sharing information about your experiences. That was a big surprise to me.
I am about to have a 3 hour consult with Dr. Teitelbaum. If anyone has advice in advance of my appointment next month, please get in touch with me. Blessings to you all, and best wishes for a speedy recovery.
Cathy
Good luck Cathy with your consult..Please let us know how it went…Another UCSC alumni! I sure loved that place…
I tried everything I could and avoided (finally) regular doctors who were downright insulting.
I’ve had ME/CFS since 1995 and it’s gotten much worse, despite everything I’ve tried. The only thing I can think of is if I had known I would have had to stop working (yes, I worked for about 18 years after Dx), I would have paid for LTD insurance and started preparing my case for a SS disability. There just wasn’t anything available at the time so I went to many alternative practitioners. If something didn’t work, I’d just try something else.
In the first place, Cort, Any Mandated State Employee Vaccinations would have been done in my Private Primary Care Physicians office. I was too easy to please and when I was told they had to give me this Td Booster, I went as expected. That got me into this mess.
So, now I stay on top of all treatments, monitor all my symptoms and journal everything. I do not let any physician go more than a year and then re-assess: “am I better with this doc, or worse”. Then I continually seek the physicians who I can afford, and are working to help me manage to have a better QoL. So far, little is working because the doctors in this community do not care, about women, chronic improvement, or any attempt to learn the science enough to actually help. I stay with the Docs whom have proven themselves and accept the realities of this pathology.
Many say I know “too much” and that I should not tell the docs, it intimidates them? I disagree with this philosophy. I get all my labs, tests and physicians notes on a regular basis. I analyze them and question everything the doctor’s attempt. If they want my respect, they will know more than I do about this disease. If they are insulted, so be it. As well as anyone who thinks if I look well to them, I should fit into a mold of their choosing. Malarkey to all of them. This is a nasty beast with a nature as devastating to an individual’s humanity as all the preferred chronic diseases. It is a disgrace that people have suffered for 30 years. If they can’t accept what I know, they will never accept what my life is like. So I do my own research and adaptations and learn everything I can from those who have suffered longer than I. I will withdraw from the know-it-all friends and family who have the answers but will not read or understand the nature of this beast.
I would have believed myself – that I am really sick and not lazy/crazy. I would not have pushed so hard and stayed away from all mainstream medicine and drugs. Mostly, I would have gone on a no sugar, low-glycemic, mostly raw, organic, gluten-free diet with lots of vegetable juices daily.
After reading everyones’ replies, I realize this is helpful, but we can’t change a thing about the past. I am alive, thank God. I have fought for too long to get the message out about M.E., and hope that governmental changes will happen soon. I remember the great fear that possessed my children, and how I tried to play down any and everything to keep them afloat. I couldn’t help the insidious weight gain, then losses. I am blessed to have had the Ampligen, but still have many questions concerning it. After suffering influenza for six weeks, with two rounds of heavy duty antibiotics, I know my systems seem prone to reverting back to symptoms of earlier years, yet no fear. And for all the mistakes I made……’Stupid is as stupid does’—–Forest Gump. I will not ever again waste my time arguing in the E.R. Those new docs need to hear me say, “Obviously you have not practiced medicine long enough to learn your best baseline of info is what the patient has said.” Then get up, leave, and not look back. I have been laughed at, smirked at, yelled at, given Dilaudid when asking for Imitrex, etc,all etc. Had a serious fall, with almost sterile casserole dish lacerating my knee. I noticed it would not bleed. Once again, in the E.R., and was given a tetanus injection, even when I said I only cut it on pyrex (out of the oven).I had a huge rash and illness feeling hit me. The scar now resembles a small smile. Sometimes the patient does know best. If I ever return to nursing, I will listen more and always let the patients know that they have an advocate, not an adversary. Return to nursing, wait, I never left nursing, just changed communications and handled a fax and laptop from bed. God bless all the Medical Professionals with M.E.—-they know who they are!
Everything I have done right is based on deep mining of data and research. Every mistake I have made came because I trusted others. Others, whether people hawking cures or doctors hawking cures, have agendas. They are careless. They self select data. They don’t do enough research. They make mistakes. Some of the mistakes endanger patient health. I’ve learned that I have the intelligence to figure things out, by blending instinct/intuition with unflagging research. If I had been as careful from the start, and understood the basic mendacity inherent in most people (either they want to sell you something or want to be heroes) I wouldn’t have made some of the mistakes I made. Trust nobody but yourself. Listen to the inner voice. Then research, and make that research very thorough.
Firstly I’d take a Tardis back to the mid 1960’s and would have chosen to ‘garden’ organically. In truth I was only 4 or 5 when I first started to enjoy my own little plot and especially growing roses and sweetpeas. I remember clearly the (probably OP based) greenfly spray which I was allowed to use with abandon, it’s liquid trickling down my young arms as well of course breathing it in by mouth. Was that the trigger? The Camel’s hair? I don’t know but I suspect it.
Having then developed what I now know to be ME back in 1970, it’s difficult to say what I would or could have done differently as I wasn’t diagnosed until 1990. Thereafter I would have avoided our local ‘CFS Clinic’ which I was too naive to realise was a psyche run thing..and wouldn’t have taken part in their ‘research’ (undergoing possibly detrimental experiments using polio vaccine etc). I wouldn’t have tried HRT (in the vain hope it might replicate my pregnancy remissions) as I feel it had a very unwelcome affect on the general downward trajectory of my health, and I would have run in the opposite direction from the doctors who thoguht they knew best during my bad relapse of 2004.
But more recently I would admit to myself that the ME body is on a self destruct course and that if you develop any new allergies then you must LISTEN to your body. Remove (don’t live with) any new allergens because trying to live with them and thinking you can beat them is a prescription for hell.
Hi All,
I’ve just read all the replies and there seems to be a common thread. Most people are mentioning some variation of the notion that continuing to work, or attempt to live a semi-normal life or “push” through the illness in the early stages eventually lead to a demise or prevented recovery from occuring. I’ve been sick for 16 months following a flu vaccine. I’ve personally spoken to Dr. Hyde (I live in Ontario), Dr. Bell, and Dr. Lapp and all of them said that quitting work or going on disability and just “resting” until the illness passed was a horrible idea and would not speed up recovery, and may even prevent it in some people. My illness can be described as moderate (predominant fatigue, weakness, cognitive issues, pain) although I can really make a case for a more severe illness, I just don’t.
The truth is, they told me that this disease is going to do what it is going to to do despite your lifestyle choices. Obviously don’t run a marathon or push all the way to exhaustion, but I’m just not sure, and neither are the experts if bed rest and checking out of life is the right approach to this illness.
Who knows –
Interesting Thomas…it is a bit of a dilemma isn’t it…Push too hard and you’re really going to get whacked and yet you don’t want to stop. I find work to be something of a refuge from ME/CFS and I think it in general is a refuge…a place to put everything else aside for awhile and just concentrate. Finding the middle ground, though, can be difficult particularly with work since it’s often full time or nothing. What a shame there’s no place to for many people to put their skills to use.
Dr. Clauw says the same thing, by the way, he’s apparently had many patients who got worse on disability…
I think finding a way to be engaged in something that takes us out of this illness is important. I have some ideas in that area….
I agree. I think trying to live a somewhat regular life but also addressing what you need to manage this illness is the right call. I understand that for the unlucky few that is not possible and complete rest is what is required. But for the rest of us we just need to keep living and searching for recovery. Just for some background I am 33 years old. I have “only” been sick for 16 months with ME/CFS (ME only according to my skype interviews with Dr. Hyde), although I suffered from IBS my entire life (bad but not nearly as bad as ME). I can’t even begin to think about living with this for as long as you guys have so I’m still hopefull for full or near full recovery – but I guess time will tell on that one. My biggest problem at the moment is cognitive issues and that gross “spaced out” and “drunk” feeling. and it seems to be getting worse – which is not the symptom you want deteriorating! Like who cares if I get some joint pain, I just want my brain to clear! Oy vey.
Best of luck everyone and keep hope alive.
I can’t accept that pushing through doesn’t worsen the condition. All that does is make me much less trusting of the doctors you’ve mentioned. And it goes against what Klimas and the Pacific Fatigue Lab folks and others are doing around pacing and avoiding crashes due to overexertion.
When I did too much, I got worse and worse and worse. When I did less, I got better. Every single time.
Checking out of life in ways that aren’t necessary would be a bad move, but avoiding crashes and straining seem very clearly to be key. I’ve been told by my well-informed exercise physiologist that I should never be doing anything that feels “somewhat difficult,” and I think that’s excellent advise based on my experiences so far.
Bed rest and “checking out of life” would be a terrible idea if one were capable of more. I would never advocate that someone leave work if that person were capable of working. Unfortunately for me, I reached a point several years ago where I was capable of virtually nothing. I have been mostly bedridden for years despite my best efforts. I agree, Cort, that being engaged in something is critical. I look forward to your thoughts on this issue. I have not found myself capable of anything other than survival in a long time. I know that goals and engagements would be extremely helpful, but how does one do that when every day seems a struggle for survival? This is a question I ask myself daily.
What would I recommend?
Do not trust anybody who says: “I know the cause of ME/CFS.”
I’ve would have got rid of stressors in my life and not been in an abusive relationship for 3 years
The biggest stressor of them all – an abusive relationship? It certainly ranks up there. Congratulations for getting out of that relationship; not always an easy thing to do…
Thanks! I’ve only just got out…the best stressor is yet to come: to say that I want a divorce…just wondering how to go about it now 😉
Gosh, what a far-ranging question…
1. I would have saved a lot of money each month in the last job I had. I found out I’m able to live just fine on 1/3rd of what I had been making. But I didn’t see that I was wasting money, and I didn’t know I’d need it later. Of course it never occurred to me that I would become unable to work.
2. I wish I had seen an ME/CFS specialist sooner. I was diagnosed with fibromyalgia in 2003 and pushed through four more years of work, as my physical and mental health declined. In 2006 I was finally diagnosed with CFS at a Fibro and Fatigue clinic. I was so ill, yet still unable to accept how profoundly. Only when I was fired in 2007 was I able to collapse, rest and finally accept that neither my body, nor my mind was able to function anywhere near the way they used to. Age 54 felt like at least 80.
3. I wouldn’t have spent a nickel seeing a neurologist.
4. I would have spent less time in a panic about having to live under a bridge if I had known my disability claim would be approved after 3.5 years.
Thanks to all who have responded. I’d also be interested in things people did that they were glad they did.
Some more replies from Facebook;
Joy Kelly – This is very interesting. The thing I would do differently is to do 3 years ago what I am trying to do now- stop trying to keep up with other people, discard all expectations, get rid of activities that don’t sustain me, and distance myself from people who don’t help. In other words, wake up to the fact that I have a serious disabling illness that needs a drastic change in lifestyle.
Yesterday at 3:18pm · Like · 3
Emmy C Effess – I’d love to go back (8 years) and NOT take pain meds for “quality of life” – it sounded great back then, now I feel it wrecked my body.
Yesterday at 8:02pm · Like · 1
Lily Stanley – Medically I don’t think there is anything I could do differently. I would have handled the kids better. Oh, I would have gotten on Paxil earlier. My depression almost destroyed my family and did destroy my relationship with my daughter.
21 hours ago · Like
Connie Faast – I would not have pushed myself so hard to keep going, now I know that probably made me worse. The worse I felt the more I pushed. I had begun to doubt myself when my GP could or would not look out side his surgery world to help me find what was wrong. I had been telling my GP for years something else was wrong. You need to follow your heart and gut feellings. Knowing what I know now I would have dumped my closed minded GP a long time ago.
6 hours ago · Like · 2
Erik Johnson- I would have done exactly what I did do.
“Stagger” back out of Dr Cheney’s office and over to my camper to escape the mold. And sit there, feeling much better… and look over through the falling snow at Dr Cheney’s office and ask myself..
“Why won’t he look into the mold?”
But I suppose that I would have not been nearly so passive about ‘asking’ as I had been back in 1985, knowing what I know now.
Check your thyroid if you have had fatigue issues from an early age. I have been slim for most of my life and was diagnosed with hypothyroidism at an early age of 22. You don’t have to be full figured to have thyroid issues. I believe it was my trigger for CFS/FM which I’ve had since I was 35 and I am now 53.
When I was 41 a Doctor diagnosed me with Hashimoto’s which is an autoimmune thyroid disease. There is an antibody test here in the U.S. for Hashimoto’s. There are other basic tests for the thyroid like TSH, T-4 and T-3.
Mary Shomon, a lay person on the subject of Thyroid problems has a website that explains symptoms and the antibody test. http://thyroid.about.com Here in the U.S. there are no treatments for Hashimoto’s but Selenium is highly recommended by natural Doctors. My thyroid is destroyed so I am dependant on medication for my T-4
and T-3 levels.
I was also diagnosed with high blood pressure when I was 22. I am now consulting a nephrologist for anwers about my unstable blood pressure. It is high one day and low the next. I recently received the diagnosis of Orthostatic hypotension too from another Doc. If I find anything out that may help this group, I will update the info. with Cort.
When your finances and energy permists keep searching for answers. Put together all of the clues from your medical history and keep consulting as many Doctors as you can. Never give up. Take one day at a time or take one minute at a time…. As far as learning from my mistakes go… I wish that I stopped listening to the doubters a lot sooner. I am sick, even if I don’t look sick. Thanks for the support Cort, and thanks, fellow sufferers for your empathy.
More from Facebook
Rita Gacon – I WOULD NOT HAVE STRUGGLED TO GET OUT OF BED THE FIRST MONDAY OF SEPTEMBER 1977, WHEN I WOKE PARALYSED. B U T…. I had a three year old toddler running round a three storey building unsupervised, the ground floor being a restaurant, so I HAD TO TRY TO MOVE. BIG MISTAKE. If I had not, and staff had come to search for me, I might have beEn hospitalised and had forced BEDrest on DayS 1-2-3-4-5-6-7-8-….and recovered. After all, all the patients in the Royal Free Hospital outbreak did, and the staff did NOT. A. MELVIN RAMSAY. 1986. NEVER NEGLECT THE FLU !!!!
3 hours ago · Like
Michael Evison – I wouldn’t have taken any notice of anything published by A4ME & the MEA or the NHS ME/CFS services who are cruelly deceiving millions of ME sufferers over the seriousness of their condition. Beyond that we are powerless against such corrupt government backed medical health systems that have hoodwinked the world into believing that ME is a lifestyle choice and not an open ended life destroying illness with no help available, unlike every other health condition other than neurological conditions who they choose to ignore on financial grounds
More From Facebook
Kyle Davies – I’ve not read the article, but it seems like a tough question to me. We have conditions here that conventional healthcare doesn’t understand (through no fault of their own) and so advice, guidance and treatment options are coming from a foundation tha…See More
4 hours ago · Like
Lou Smith – I’d have pushed for specialist help much sooner if I’d known what difference it could make…… also that it was possible to be referred.
This is such a valuable thing to put together. There seem to be so many similarities and common threads. I’m not sure how many of these things I would have taken to heart and how many I would still have had to learn for myself, but there are many things I wish I had known sooner.
I would have realized that if I was still getting worse, it meant I was still doing too much.
I would have made the connection that the terrible burning/discomfort in my spine/head was triggered by too much mental activity, and known what to do to prevent it.
I would have realized how many of my worst symptoms were really PEM, and that I was in a constant state of overdoing it. I would have known that many of the symptoms I thought were constant and inevitable were really within my control to prevent.
I would have listened to my body more, and respected it when it needed to rest. I definitely would not have kept going when it was screaming at me to stop. I would have left my job far, far sooner. I would have worried less about trying to appear “normal” for friends and family.
I would have realized that there is a level of illness where even reading, watching TV, talking to a friend, etc. is far too much, and tried to accept that just because I want to do something badly doesn’t always mean I should.
I wouldn’t have wasted a second seeing doctor after doctor who were not specialists in ME/CFS, especially at the beginning when I was so desperately ill and every trip took so much out of me. I would have realized that most doctors are not willing to explore outside of the narrow list of things they are very familiar with. I would have realized that the extra stress of having people refuse to help me or judge me or blame me just made things vastly worse.
I would have found a sympathetic and supportive doctor right away.
I would have approached anyone claiming to have a treatment for this illness with skepticism, particularly if they claimed it would work for a majority of patients, or could cure people fully.
I would have trusted my instincts and not tried so hard to push exercise, etc. just to please my doctors.
I would have fought harder against the diagnosis of depression, and would not have gone near antidepressants. Many of them triggered symptoms that have never resolved.
I would have read the Canadian Consensus Criteria earlier.
I would have have bought a heart rate monitor and blood pressure cuff sooner.
I would have contacted the CCAC right away and set up home care assistance.
I would have realized that ME/CFS is a spectrum that can shift, rather than something you can have a “mild case” of. I would have known that anyone can become bed ridden, and that it can happen so very fast. I would have been more careful with my health rather than assuming that because I wasn’t too bad for a while that would be the case forever.
I would have referred people to this site much sooner, so that they can understand what this disease is and does to folks who have it. I was finally diagnosed in 2002 after a car accident through me into a very bad episode, after wandering around in the dark really since i had a very nasty case of mono in the late sixties and kept falling into “the hole of exhaustion”. I would not have listened to people who told me “but you look great” (in other words: not much can be wrong with you), but listened to what my body was telling me. I would not have felt ashamed or stupid for not being able to process information after more than two sentences of instruction, or for not remembering names, events etc. i would have been so much kinder to myself had i understood what was going on as i have these last several years. I’m so grateful for sites like yours, Cort, thank you!
I would have not engaged in Olympic level denial for the first two years of my illness. After getting the strangest “flu” of my life, when I tried to go back to my ballet classes (after maybe 2 weeks off) I could barely get through the class. Somehow I just brushed that off as being “out of shape” (after 2 weeks?!) I kept trying to get back in shape by working out harder, wondering a little bit why it made me feel ill to do so, but figuring I just needed to keep at it. And all the little things that would wipe me out that shouldn’t: I just ignored it. This was at the time I was applying to medical school and my main focus was whether I’d get in or not. I did get in and off I went. I diagnosed myself finally. Why? I wasn’t even thinking about myself. I was curious about this illness “CFS” that I’d met a few people who claimed to have. Ashamed to say I was skeptical (yes, I’d heard all the nonsense about “yuppie flu”). So I read a book about it, and was amazed. It described exactly what I’d been going through! So, if my affected acquaintances were crazy, then so was I!
If only I had bothered to care about/for myself when I first got ill, maybe it could have been nipped in the bud? I’ve talked to multiple folks who had done just that, gotten IgG infusions in the first year and were fine afterwards. Twenty years on, I wonder if it’s possible to find a “cure” or if there is permanent damage.
I meant “IVIG” not IgG. Sorry.
When I was first diagnosed with the disease in 1995, I refused to accept the medical doctor’s information of “there is no cure.” Not only is there a cure, but the symptoms can be calmed and treated while the cure is being implemented…all without dangerous drugs. I wanted to kill myself many times, or did not care if I died while I was suffering from that wretched disease. You can check out my story, and learn how to heal and be free of that nightmare by clicking on the links below to my Blogsite.
I wish you all the best,
Alethea
http://ordinaryevil.wordpress.com/2012/08/28/chronic-fatigue-syndrome-the-disease-from-hell-and-for-some-rooted-in-child-sexual-abuse/
http://ordinaryevil.wordpress.com/about-chronic-fatigue-immune-dysfunction-syndrome/
Thank you so much to all thise who have commented on this thread. I cane across it as I have post-viral fatigue like symptoms after contracting COVID-19. Your stories, and others I have heard similar, have helped convince me I need to rest and not try to “push through.” Thank you x a million!
*those
*came
Good! You may hold the key to ME/CFS. Studies are starting up to study post-COVID 19 patients. We hope that finally the money will be available to understand this disease. Good luck!
I was able to rest when neccessary, even stay in bed without even reading for 3 weeks at a time, and it started receding over a 15 year period……so that today It is enough to stop and lie down for 1-3 hours as soon as I feel tired, weak etc…and never push on regardless.
What I would have done differently was NEVER to say around me that I had chronic fatigue syndrome—usual reponse was, ‘well I’m tired too’….and just say that I was suffering from the consequences of a viral disease…true…, rather like Federer had!! but much more permanent, perhaps because much less fit when I caught it!.
10 years with this condition; moving from nearly bed bound to much much better, but not (yet) well enough to lead a life. Personal lessons:
(1) Anticipate that this health challenge evolves over time – e.g. Cort’s example of MCS. Err on the side of preventive caution rather than blaze attitude toward problems/dimensions of the condition you do not have.
(2) This one is new for me personally: move from (a) positioning yourself for recovery, to (b) proactively going after recovery. I started with (a) putting in place the obvious conditions for recovery and waited, and waited. I improved, then got worse. Now I am on (b), which means – if recovery is not coming – pushing harder, pushing differently, pushing creatively, keeping the content of (a) a live question. I hope the difference is coming through here. Two years ago, I would have said: look I am balancing rest with activity systematically and with discipline, my mental health is outstanding, my medical oversight is led by Nancy Klimas. What more can I do other than keep at it? Now I see that as not enough. The new approach might not work, but it seems to me more compelling (so long as one doesn’t put too much pressure on oneself)
(3) I find this v important; for me a big source of past errors of judgement: Be super- strategic when good moments come. A personal example: a moment lasting ten minute in 2011 summer when I felt closer to a normal person than I had done since 2003. It is tempting to relax one’s guard here, let go, indulge, wake up the next morning and be naughty – delay the first rest, push too hard etc. So understandable for anybody under enormous & exhausting pressure. But not a good idea. Rather these are moments to take massive action. They are best seen – and of course this is a self motivating exaggeration, as escape hatches. Moment not for slacking off but for greater discipline with rest, meditation etc. It may even be helpful to treat these moments as one treats a dip – crank up activity management etc.
(4) If you don’t have a scientific background, make a very coherent decision about how you will approach medical research. My background is music and philosophy and I decided to spend no time at all on reading medical papers. This has costs and benefits.
Main benefit: spending precious time on what I love or what slowly takes my life or career forward.
Costs – in the UK, I have had to use charisma rather than comprehensive medical knowledge to tell off and dismiss doctors uninitiated in this condition. And I cannot dialogue proactively with specialists and myself suggest solutions. A bad miss: a combination of listening to one’s body and medical knowledge is powerful.
Yet, knowingly, I have chosen this path. Because I refuse to invest 50% of my time into reading medical papers.
(5) Stand guard about what you expose yourself to. I mean this at every level. Ruthlessly remove taxing and stressful situations. If a doctor is useless, take immediate action. Walk out politely. Right there and then. Don’t wait for them to finish their sentence!
(6) Prepare for confrontation with bureaucracy as though it were a part time job. At least for periods. See this not as intrusion, but as reality – and expect it.
(7) This one doesn’t quite count, because it is one I have done from the beginning. But I will still mention it. Take massive distance, psychological distance, from the injustices around this condition. For instance, my own analysis is that much that happens, or doesn’t happen, is in good part a product of the compartmentalisation of knowledge in our society. It is knowledge that plenty of objective things go wrong in the bodies of people with this health challenge. But it isn’t public knowledge. It isn’t indeed knowledge that has filtered through to the institutions which ought to be in possession of that knowledge. That may be terribly damaging and significant, but it is not interesting. It may well be helpful to take proactive steps to address this problem, but it doesn’t necessarily warrant terminal fury and moral outrage (unless these things happen to motivate you successfully to make a contribution to the cause)
(8) Finally (a) balance acceptance with refusal to accept, (b) find some ways to be connected to life even when you are cut off from it; I call this “seeing heaven from hell”, (c) don’t take (b) further than is right for you – for instance toward a spiritualised meaning of why this is happening to you. (d) Laugh. (e) Love.
I knew something was wrong right away even though I have the progressive from of the disease. What I would not have done is wasted so much time and money searching for help. I didn’t realize that local doctors would be so useless and condescending. I would not have taken so many medications, especially antidepressants and I would not have had a needless liver biopsy that caused months of terrible pain. I would not have taken it when my sister-in-law told me that my problem was excercise even after I tried to explain things to her.
I would have taken a prolonged and complete rest. I would have insisted on help with my young children. I would have taken antibiotics immediately and for a long time. (Doxycycline finally got me out of bed.)
I would have never obediently gone to the psychiatrist and taken the lithium he prescribed but did not monitor. When I insisted on a blood test to assess the levels I was told that the sample was ‘taken in the wrong tube and no good’. It felt like lava running through my veins when I was startled. And that damn dog barking across the street startled me awake all day long.I would have confronted the owner sooner. So I could rest.
It’s been a long fight. I wish that airport monitor had fallen on me instead of that young boy.
Will our obits read ”…from ME/CFS”?
I would have applied for disability benefits sooner. I kept thinking I was going to get better and I just got worse. When I finally did apply, the person at the Social Security office asked me why I waited so long. I told her I hoped I was going to get better. Maybe that helped me get approved on the first try?
I would also have insisted that my spouse learn about the disease. I tried but failed in that attempt. Subsequently we are no longer together.
It seems most agree that in hindsight, if we took care of ourselves at onset we wouldn’t be so bad off now. Like many of you, I didn’t have a choice. I had 3 kids, aged 7, 5 and 3, a husband and a home to take care of.
My sister and her live in boyfriend also came down with CFS/ME. First my sister, then a month later, me and then her bf. Although they both worked, they spent a lot of time sleeping, especially sleeping the weekends away. They got somewhat better, whereas I didn’t.
This was back in ’87 when very little was known about this dreaded disease.. People were calling it the Yuppie Flu and doctors thought you were either a malingerer or depressed. How they come to those conclusions when you’re 100% well for a lifetime and then WHAM, deathly ill. I can remember the minute I got sick.
My first 3 years were horrible. I then started to see a pattern emerge. When I would get some energy, I’d do as much as I could re neglected housework,… and I was putting myself in a crash each time. After I realized this, I was more cautious of the energy I was using up.
Still, to this day, I’m pretty bad off. I was introduced to pacing last March and even though I was having more good days, I was still crashing quite a bit. My CFS/ME specialist told me I have to live within my limits, even if it means saying no to others re running errands or doing things for them that you know will make you sicker. It’s either disappoint them or spend a few more days/weeks trying to recover. It’s a hard lesson but one that has to be learned. I have a lot more to learn as many stressors keep me crashing regularly.
It took me 25 years to get a GP to send me for a formal diagnosis and now I’m in a lengthy fight for disability payments, even though I surpass the criteria of a person with a disability. I just want others to know that they (CPP, ODSP, insurance companies) will try their best to wear you down so you back off. Most of us will get discouraged after the initial filing is denied. Some will continue until the first appeal and then figure nothing will come of fighting another appeal. Nothing can be further than the truth. They prey on the sick and hope they will give up.
So, my advice is to remember you are #1–take good care of yourself and stand up for your rights!
If I knew then what I know now…
I would not have spent lots of money on complimentary therapies.
I would have made a point of taking regular short rests throughout the day instead of relying on evenings and weekends.
I would have been better about avoiding stressful situations.
I would not have made the effort to stay later at social events for fear of being seen as unsociable, I would have made my apologies and left so that I could always get an early-ish night.
I would have based my choice of supplements on science and research instead of random anecdotes.
Cort – I can’t thank you enough for your science/research blogs. It has helped me decide/justify my choice of supplements and has made a HUGE difference. You have also explained stuff that was all chinese to me before, such as aspects of the immune system.
I became ill in the ’80s and was told by doctors repeatedly that there was nothing wrong with me, so I stopped mentioning my symptoms. As it turned out that was a good decision. I did not see doctors for years, other than for routine issues. Later, when my health continued deteriorating I saw specialist after specialist. I am now trapped in a cycle of always searching for someone to help me, and always having my hopes dashed, as well as having my finances depleted.
If I could do it all over again I would have pretty much avoided MDs, I would not have spent thousands of dollars on alternative therapies either. I would have avoided acupuncturists, chiropractors, reflexologists, “energy healers,” etc. I am normally a highly rational and scientifically minded person but desperation drove me to consider all sorts of useless and expensive treatments.
I would never have seen MDs who refuse to accept insurance or require a contract for services.
I would have avoided most supplements, especially the costly ones.
I would have listened to my instincts more, and not taken so many off-label-use pharmaceuticals. Very few drugs have ever helped but many have caused serious set-backs.
I would not have taken antibiotics and herbs for years in the treatment of possible Lyme. They did nothing but destroy my gut flora.
I would have seen a psychiatrist much sooner. Like everyone I was angry that my Internist was constantly trying to blame depression for my symptoms. So I gave in, and with much resentment went for one extremely costly visit, and received a diagnosis of depression. (Of course I was depressed, I was mostly bedridden by that time!) As it turned out, however, that one diagnosis finally resulted in my receiving Social Security Disability. I had massive amounts of documentation for numerous doctors, but it was that one diagnosis–major depression–upon which the disability was granted.
I would have moved back to my home city, near family, when I was still capable of travel. Now I am isolated, except for my partner, and in much need of the support my family would have provided.
Most importantly, especially in the early years, I would not have constantly pushed myself to the breaking point.
1. I wouldn’t have gone swimming in that warm pond/swimming hole at age 5; I’ve always wondered if I picked something up there, as IBS started around that time.
2. I wouldn’t have adopted a feral kitty at age 7; ME/CFS symptoms started after that.
3. I’d have told someone I was having trouble running and keeping up with the other kids and kept telling them.
4. I wouldn’t have taken those anti-biotics for acne as a teen and for pharyngitis and sinus infections from early childhood into my 20s (I continued having those issues but caught on to stop the antibiotics).
5. I wouldn’t have taken all those steroids for allergic reactions and chemical exposures.
6. I wouldn’t have pushed myself to be in shape because my ex-husband would like at me about house breathless I would become when we were hiking because I was so obviously out of shape.
7. I would have left my ex-husband because I didn’t need the stress he brought into my life.
8. I would have gotten help coping with a lifetime of having people treat me like a hypochondriac and the stress of being disbelieved, and also of the stress associated with having to work so hard to be accommodated because of chemical sensitivities. I feel like I have had to fight so hard just for the right to exist most of my life.
9. I would have patted myself on my back more often for knowing, despite protests that I appeared healthy, that I needed to care for my body and for at least eating well and resting, though I would have rested more.
10. I would have stopped having thoughts that my body was failing me somehow sooner; fact is, my body has worked damn hard to keep me alive.
11. I wouldn’t have taken all those ibuprophen and migraine meds… they really didn’t help anyway.
12. I wouldn’t have taken Vit D.
Heck, I just looked at Mary’s comments above and I should have just written “Ditto Mary Virginia.” Except, while I didn’t see doctors for a while, I don’t regret seeing a doctor again and not because being treated helped me. The only reason I started seeing a doctor again is because I knew I was going down hill fast. I had no idea how long I’d last but I knew I needed a medical record of that descent and so for seven years I was the most compliant patient on the planet trying every treatment my doctor recommended only to have them either do nothing or cause serious side effects.
And maybe I would have quit my job 3 years after seeing the doctor who finally diagnosed me, as it was at that time he told me I needed to work only part time. But who would pay the mortgage? How would I afford health insurance? In this culture, you have to work until you are almost dead.
Aged 8 I would have got support from a GP and contacted one of the ME charities.
I would have refused to go into psychiatric unit as 17 year old and contacted one of the youth charities at the time. 15 years in psychiatric care to only be told I have a neurological problem they can’t help me with was a waste of my teenage years and did me far more harm than good.
I would never have agreed to the CBT or GET offered at the local center as it took me from being mobile to totally bed bound.
I wouldn’t have found a way of getting rid of people who wernt supportive from my life earlier.
I would have argued far earlier about ME and not CFS being the same illness when the criteria for them are so different and the effects of severe ME are so much more damaging than ‘fatigue’…. Paralysis, distorted Bowles, double incontinence, not being able to sit up without passing out, not being able to tolerate any noise, or light or movement… These are all part of ME and something that CBT and GET can’t help, and makes worse… Rest, total rest makes them better…
Seriously, the one thing that would have saved me so much pain and fatigue would have been to “CRY” a whole lot less. Now, I know how quickly we have likely all slid into depression from having our lives stripped away. But, if so, I would have stressed a whole lot less and been more accepting of it, making the best of a bad day.
Again, we didn’t know what would lie ahead of us did we? Stress seems to have added so much increased pain and fatigue, PEM, constant sinusitis, etc. I now deal with so many additional problems. Severe sweating always. OI…little itchy pinhead rash all over my body that never stops itching. Scalp dermatitis…..burning lips and mouth intermittently……too much acid in my body….PH imbalance….numerous allergies including all gluten and dairy. Vision problems, blurring….burning…weight gain from sedentary lifestyle and meds. The list goes on, on, & on. I would have given myself to God much sooner….
I didn’t know. So it goes peeps………Here is the “ZEN” thing….lol
Brenda Elliott
I have seen my health issues as a journey and I have been fortunate to find many helpful practitioners along the way. These were not “specialists” in fact the few I did see were not helpful at all. My regular D.O., psychiatrist, therapists and a variety of physical therapists, and movement specialists were helpful at the time and place when I encountered them. The primary element that each was willing to look at new research as I discovered it and supported various avenues of treatment. I consider myself very lucky to have their emotional support. After many years I began to see that for me I learned to pay attention to what was occuring in my life and “follow the bread crumbs”, since the next step in my healing journey seemed to be via an unexpected experience of finding a book, TV show, radio show or a chance personal encounter that provided me with my “next direction”. I started believing that “the next best thing” was going to show up for me in this random serendipitous way. And that is how it often happened. I also learned over time that my dark valleys would be followed by new upward movement and became more patient with myslef. I believe our healing journey’s are unique and personal and we all do the very best we can,as we can! Have compassion for yourself and watch for the bread crumbs or as Oprah says, the “aha moments” of sudden realization, inspiration, insight, and recognition.
I would have educated myself better regarding lab test results, followed up on why my C-RP test and ESR were not normal. I would have switched from a doctor who kept telling me that I was tired and in pain because I was overweight and who ignored those lab tests for 2 years. (Luckily she was out sick when I needed care and I saw a different doc who immediately noted the previous lab test, ordered more, suspected I had 2 auto-immune disorders, referred me to a Rheumatologist, and got me on the road to be being officially diagnosed with 2 A.I. disorders, FM, and CFS). I would not have spent year and years being taken advantage of at work and being over-worked and stressed beyond comprehension. I would have taken advantage of the mental health care that Kaiser offered and worked to improve my confidence and self-esteem so that I could have left that job I hated for over 10 yrs and that was killing me slowly. I would have paid more attention to myself and taken good care of myself physically and emotionally both before and after my diagnoses.
Had acute chronic fatigue in 2007. Bedridden for many months and I am normally a highly active person.
It took me 3 years to fully recover and I was able to work full-time again for 7 years. Initially went to a GP for a few visits as it was very obvious that the avenue was not the way to go. Very dumbed down health care. Better term – abuse care.
Very quickly I found a acupuncturist(by chance)who turned out to be extremely skilled, genuinely very caring and because of her way, bodies communicate with her. Great advantage. Hence the fast recovery rate for an acute illness. Also to get the mitochondria cells sparking well-again the body needs sunshine and nature. I am now outside on a sun-lounge just before dawn everyday to sink in the the rising energy of the sun and the rhythm of nature. I also come out mid morning and the afternoon and sun bake for just a short time so as not to burn. In between I sit under under a patio so I have the breeze and nature around me. It’s really making a difference in a short time. Winter I will do much less but be in nature as much as possible. Oxygen Drops are good also. Good diet is essential and watching for weight gain. The discipline with food is very important.
2017 ten year later down again with chronic fatigue. It means I did such a good job last time I get to do more work. Great! Many would have come across articles on the internet suggesting CF is a spiritual illness. Yes indeed it is. Hence the necessity for acupuncture and kineseology to help with the physical symptoms and past life and ancestral trauma release. These options are expensive and long term for awhile but you get your life back. Round one was was clearing for my female lineage on my Fathers side and round two I am clearing for the female line on my Mothers side. Hopefully wont take longer than 3 years again.
Good luck with healing everyone and rest rest rest. At the very least work with a Kineseologist.
Lyn
As the mother of a -12 year old who came down with severe ME, I am writing. He is too ill to write, now age 25.
A diagnosis of Lyme disease was a false and very expensive road for us, both financially and the effects of three years of IV antibiotics.
Finally a diagnosis of MECFS six years in. A blood clot and thoracic outlet syndrome led to a recommended rib surgery. Regret that too, and the physical therapy that was prescribed.
Made nothing better and made him worse. I wish I hadn’t let the facile assumptions of others that they “knew” better and that he wasn’t really sick, not hurt so badly.
I would have not tried to keep working, albeit part-time. I did three years, damaging myself all the way. There was, of course, a money problem, but I should have tried harder to sort that, and less hard trying to hold on to my life. As so many have said, rest, and more rest.
I should have tried to find a doctor who even acknowledged that M.E. was real. I have never met one who had any knowledge of the condition or who offered treatments. I’ve read a lot, but that doesn’t substitute for having someone who knows what you’re talking about.
Can I just add the one clever thing I did do? About three years before the mother of all relapses in 1997, I took out income insurance! Not for a lot, but enough to keep me going after I hit the wall. Kudos to the insurance company for sticking with me.
My MECFS started when I got sick with severe viral infection (mono I think) way back in 1956.So I have been dealing with this for eons. One thing that I am noticing more lately is that back then doctors looked at their patients, listened to them with caring interest.Right from the start doctors told me I was sick.The tests weren’t sophisticated enough to indicate illness, but as one doctor told me looking at my normal blood test and shaking his head with concern in his eyes “From nothing comes nothing.The tests are wrong.” These doctors didn’t have modern pharma drugs but they did what they could for me using what they had…common sense (ie don’t push, listen to your body)good “old fashion” nutrition, penicillin for the many illnesses I seemed to catch etc. My mother was an RN whose training had included a year of daily instruction from a woman from Sweden licensed in Swedish massage!(How lucky was I)
Then came the Psychology boom.Pharma developed antidepressants. And Prednisone became the wonder drug. AND that is what I would do differently. I spent 5 days in a hospital because my blood wouldn’t clot. The doctor who kept increasing my prednisone meant well but I learned not to accept a doctor’s prescription without doing my own research.
In 1970 I connected with a brilliant doctor who spent 16 years doing clinical studies and carefully supporting me medically.In 1986 he diagnosed CFS.
In addition to my chart (which he gave me when he retired) I have additional extensive workups re:B and T cells, EBV, HHV6, etc from infectious disease specialist from Mass General.
And yet, and this is what really bugs me, current doctors are not interested in looking at these blood tests (consistent over 30 years plus) or giving me credit for knowing what works for me and what doesn’t. And the younger, the newer the doctors are, the more they think they know and the less they acknowledge the patient’s input.
I feel for younger people who don’t have the experience of a medical profession that wasn’t steeped in psychology as the default for difficult to diagnose cases. Or who weren’t reimburse from insurances for prescription written even when the drug is totally inappropriate.
And the other thing I would do differently is guard every shred of my energy as if it were gold and I was Fort Knox. I spent ie. squandered energy that I needed for myself helping others, coworkers, family members who took my help but turned their backs when I needed help.Fortunately others stepped in to help me, because you really do get back what you put out there. But I would have been much more judicious and steadfast in how I expended my energy!
So these are my words to the wise: Do your own research about everything suggested to you, even by the “experts”.Expend your energy very judiciously, no matter who or what is making a claim on it. And trust in your own judgement, only you live in your body!
First of all I wouldn’t have pushed it – I kept trying to be normal and go on with my life SO hard, for two years, if I had stopped then and there when the extreme exhaustion set in, maybe things would have been different. In hindsight the only thing I would have done differently: I would have tested for Epstein Barr and Lyme right away, but I knew nothing of bites (there was a bite 5 months before falling ill) and actually the tests came out positive for Epstein Barr, but the extremely xenophobic monster doctor I saw downplayed it and just insulted me for 30 minutes, referred me to the psychiatric hospital and threatened me in case I was planning to ask for benefits (I wasn’t). This happened in 2006, I could get hold of that paper again in 2016, and it was there all along, reactivated Epstein Barr. Had I known at the time, I would have acted differently. 8 years of my life gone because of an asshole xenophobic immunologist at the Charite’ Hospital in Berlin, who had it in for immigrants. It makes one think.
I spent 10,000 dollars of my money to get stem cell treatment which I was told would cure me.
it did nothing. so now I am trying to pay it back as I borrowed it.
this is from a holistic doctor who pretends to know it all
I would have ignored the psychologist who encouraged me to try GET. Ithe set me back 10 years at least. I would also not have tried to study for a degree in didn’t need. It was a vanity project and set me back the NEXT 10 years. I’ve just had 10 days of feeling healthy. The first in 22 years. Sadly they’re now gone, but I’m optimistic about the future.
I’d have gone on Disability immediately on diagnosis, when I had two supportive specialists, and not tried to finish university much less work two jobs while i got sicker and sicker for the next 10 years.
I’d have saved EVERY piece of paper – test result, referral letter, job evaluation – that might support my case for late disability application.
I thought I was invincible, very athletic, working, back in school to finish a degree that I really wanted and having a very full social life. I had a huge difficult saying ‘no’ this is too much. I thought I could do it all, until my body started to give me signs. I brushed off the sleepless nights on peri-menopausal, I brushed off the nausea by having my gallbladder removed – that stopped the throwing up, but not the nausea. I had steroid injections for pain which provoked Cushing’s – I was looking for a quick fix – I needed to get back to work and have a life. I just had gotten married and it was just a really bad time to be sick, so I got worst. I was getting sicker and sicker. Then I was diagnosed with EBV at 45+ yrs/old – this is when my PCP told me about Dr. Klimas. It didn’t take long for Dr. Klimas to run some tests and tell me exactly what was doing with me. I flunked the tilt test badly and the blood work also confirmed that I had ME. Again, wanting the quick fix – Dr. Klimas was starting to do the Ampligen trials, she would’ve liked to follow me a bit more before accepting that I go on Ampligen but I wanted a quick fix and rather than having it done in FL – I went to Charlotte, NC – big mistake, they were not prepare to handle what Ampligen did to my body. My journey with ME has been one mistake after another, because I wanted to be fixed ‘now’ well 10+ years later – I’m still not fixed, I’m not bedridden but I can not do much in a day, pretty much housebound. Minimal day things that we take for granted i.e.: like doing grocery, is a nightmare for me, having to debate if I take a walk, I’ll have no energy left to take a bath or make myself a quick dinner. Knowing what I know now…. I would’ve pay close attention when my body was telling me to slow down, rather than being there for everyone and putting my own health on the shelf. Now those people are gone and I am alone trying to put myself back together. Knowing what I know now – I would’ve take those signs seriously and put my health first, learn to say ‘no’ maybe it would not have progressed as quickly as it did.
1) I would have taken it easy as soon as I got ill, rather than pushing and pushing for years.
2) I would have been less cynical about approaches I couldn’t explain, especially the Lightning Process which it took me 16 years to do and changed my life.
3) I would have cleaned up my diet and environment.
4) I would have fixed my sleep using good, consistent bedtimes and blue blocking glasses and natural remedies, rather than rely on pharmaceuticals.
5) I would have bought a FIR sauna 17 years ago!
A FIR sauna! Isn’t that something
What is a FIR sauna?
It’s a sauna which used infrared heat instead of radiant heat – it allows you to sweat more at a lower temperature.
Lie down and stay down.
I would have stopped pushing myself!! Even while on the sick from work I was still answering calls and emails from work (I was a teacher in a school for pupils with severe learning difficulties and / or autism). I succumbed to the pressures to try a ‘phased’ return which, deep down I knew, was way beyond my body’s capabilities!!
I think I was constantly chasing the pre-illness me for the first 3 years of illness. Trying to maintain a high stress career along with being the family problem solver (a role I have had since a young age).
The grieving process for the ‘Me’ that was, along with all of the hopes, dreams and ambitions that I held, didn’t even begin until the point I was dismissed from work on capability due to ill health grounds! Effectively, I was retired off onto my teachers pension at the age of 36!
That grieving process is ESSENTIAL to coping with M.E /CFS, especially when it changes so many aspects of your life. Oddly, I coped well with the significant loss of mobility due to pain and energy reserves. I look at my electric wheelchair as something that enables me to do more rather than a sign of what I can’t do. However, the loss of my career and ability to work took several years to come to terms with.
Take time to adapt. Stop pushing. Rest, rest some more, then rest again!!
Great advice Nic! Thanks.
Listened to my body. I had for years what I would describe a “functioning CFS” meaning I could still work but was permanently exhausted and slept a lot at weekends to recover. My body was screaming at me to rest but I continued a stressful job and pushed myself through exercise and social events. Eventually I had a total collapse about 18 months ago and can no longer work and am often bedridden. I wish I’d rested when my body was telling me to!!
I wish I had not been in denial for so long, I didn’t really know it was ME/CFS and so was blindly hopeful and kept pushing through everything. I stayed in a very stressful and demanding job full-time trying to progress in life and keep up with everyone else. I also wasn’t careful enough with my money, delayed sorting out benefits (ore denial), or stress levels which has definitely worsened my health and situation overall. Burnout due to ME/CFS is not much fun but I must say deep acceptance has be incredibly healing and good place to start.
Hello All,
I’m just diagnosed with FM, while some tests are still coming in. I suspected Lupus although the rheumatologist says he doesn’t think so. This after trying to get my GP to help me find a solution after years of being told it’s “in my head”, my depression/anxiety, peri-menopause. However, now after stumbling onto this, I am wondering if I perhaps may have CFS/ME as well, as so many of your stories ring true.
For much of my life I’ve always been athletic and in great shape, however, I’ve had mono at 16, chicken pox twice, tonsillitis constantly as a child until a tonsillectomy at age 17. I lived on penicillin up until that point. Later in life shingles, eczema, nose and mouth ulcers, etc. My god do I get laid out flat when I get a simple cold, and the flu even worse. I’ve had multiple trauma via a car accident, surgeries, much physical/emotional PTSD trauma old and new.
Over the past eleven years, especially the last four, I’ve increasingly become even more exhausted, entire body in pain, breathless, heart flutters, etc. Being bedridden for weeks, months, only being able to accomplish everything I’ve neglected in a rare 1-3 days burst of energy. Sadly, then back exhausted trying to recover. Wash. Rinse. Repeat. I’m a perfectionist and “push, push, push” to use your words, through everything – on fumes until I crash. I have had no one to replace me at work so am always having no choice to rest, on-call 24/7, very stressful jobs at times in a somewhat unsupportive/ not fully comprehending of my health issues environment. Eventually my body gives out completely and I am useless.
I’m grateful to mainly have had a work from home job for 22 years where I could handle most things from bed if necessary. Unfortunately that’s coming to an end within the next 6 months as the company is selling out. They consider me an independent contractor, so I have nothing to show financially or benefits wise. Luckily I have great healthcare on my own. I’m terrified at what’s to come, at 50 years of age, being that my health is getting worse and now I will soon be without work and possibly my home as it’s linked with my work. I have very little put by because I don’t make very much due to getting more “perks” considered as stipend.
Any and all thoughts and advice are welcome! I wish you all the best of health, peace and happiness! ??
I’ve developed M.E. and chronic widespread pain following Covid 19 infection 2 years ago and I’ve been to the gates of hell. I cannot believe such an horrific, debilitating, life changing illness has been ignored for decades. I honestly cannot believe it. I am horrified beyond words to discover the history of this illness. The comments have had an immediate impact, as Ive realised I am currently thinking and doing everything that you are all saying you would not do if you knew what you know now. So I am going to take all of this on board and change my mindset and approach to recovery. I am also experiencing all the negative, unsupportive attitudes from all around and again I will take all of your advice on how I think and respond to all of that too. Thank you all for your pearls of wisdom, sadly gained through your years of sufferings, they have been invaluable. I wish you all the very best.
Thanks, Donna for your compassion and understanding and good luck with your journey! May it be a short one 🙂