We all really, really want to get better. Many of us have moved mountains in our attempts to do so.
Everyone wants to get well, and if you asked anyone with chronic fatigue syndrome and/or fibromyalgia the one thing they wanted in their life, it would probably simply be to be healthy again. Most people would say they would do anything to be healthy again, and, in fact, people often invest uncountable hours and enormous amounts of money trying to get better.
Carol Lefelt’s recent blog, however, probably explained many long time ME/CFS patients mindset perfectly. Her initial optimism that she would get well was replaced, after 15 years of mostly fruitless trying, by a mindset that more expects failure than success. The doctor’s office that was a source of hope and possibility in the beginning became more of a disappointment waiting to happen in the end. How could it be otherwise?
What Stops You?
The question this blog asks is what stops you in your fight to get better? It suggests that everybody gets stopped somewhere. Whether it’s due to money considerations, disappointments from the past, access to physicians or beliefs about what kind of illness you have, everybody gets stopped at some point. Nobody (or almost nobody) tries everything.
Given enough time all of us probably get stopped at some point.
It doesn’t suggest that anyone should try everything or anyone should try anything. It doesn’t suggest that it’s not entirely appropriate to stop looking. It simply tries to identify what stops you from looking?
It also acknowledges that it’s probably not true that most of us would do anything to get better. I would stop at asking my family for more money for instance. I wouldn’t try a high risk treatment that might make me worse. I know I should be trying supplements, but I hate spending money on them even though I can afford them now.
The belief that nothing will probably will ever REALLY work, even though I know people who have gotten well doing things I haven’t tried yet, stops me. Despite the fact that I haven’t seen an ME/CFS expert for almost 15 years, I know it’s not going to work out. It’s not logical; it’s something I decided at some point. On some level I’ve basically given up…
These are some of the things that have stopped me.
Reasons for Stopping
Resignation – I’ve tried so many things that didn’t work, the chances are low that I’ll find anything that does work. It might happen for someone else but not for me. I’m pretty much a lost cause.
Cost – I don’t have the money, I’m not willing to go into (more) debt, and I’m not going to ask anyone for it.
After my last treatment caused relapse, I think I would be happier and healthier if I just abstained for awhile
Bad Experiences in the Past – bad side effects from past treatments make me leery about trying new ones, even if there’s little chance that they would cause the same effects.
Stress – I’ve had enough of getting my hopes up and getting them crushed again. It’s probably not going to work out anyway, so why try? I would rather just be at peace.
Certainty About What’s Wrong – I know what’s wrong with me and therefore I know some treatments will not work so why try them? Joey Tuan knew his disease was virally mediated. Because of that he closed off an option that ended up working for him for years. What are you so sure about that could, without your realizing it, be keeping you from trying something that works?
I’m Not Giving Up My Pleasures (when I have so few left.) – Diets probably fit in here. Why give up one of the few pleasures I have with this grotesque diet (that probably won’t work). Pacing does as well.
If anyone found out I tried this loo-loo of a treatment I would never hear the end of it
It’s too Weird – people will laugh, get angry or complain when I try this doozy of a treatment – so I’m not going to try it.
It’s Too Much Trouble or Work – I’m too tired to take on learning enough about something to really try it. I feel like I need to know the inns and outs of treatment to take it on and I’m too tired to do that.
Lack of Support – If I had some more support, I know I’d give ‘X’ a shot. I just don’t want to take it on alone.
Too Sick – I’m too sick to travel and I’m probably too sick to try anything that might make me worse (and most things make me worse.)
My Doctor Didn’t Recommend It – Unless a doctor recommends it I’m not trying it.
My Doctor Did Recommend It – I would never really given anything a try my loser of a doctor would recommend.
It Needs More Study – Unless it’s been studied in clinical trials, I’m not going to try it.
Somebody Reported X Treatment Effected Them Badly – Why risk that happening to me? Better to be safe.
It’s Not Enough – I’m really sick. Why would these dinky little treatments (yoga, pacing, the right types of ‘exercise’, diet changes, etc.) really work on somebody as sick as me? I need a drug and I’ll wait until I get one.
I’m Too Old to Recover – Carol’s sudden recognition that ‘Wow’, I’m actually seventy’ clearly included an interpretation that maybe she just can’t expect really good health at age seventy anyway. This is despite the fact that there are plenty of seventy-year olds tramping up and down golf courses, and travelling the world. My father, for instance, has lifted weights well into his eighties. Yet, when we say ’70’ a certain picture arises and that picture doesn’t generally include abundant health.
I Want to Get off the Treatment Merry Go Round and Just Live My Life- Pat Sonnet said it well “There is something very liberating, however, in not being focused on the outcome of a treatment but being focused instead on living the life I have in ways that bring me the most satisfaction.” That, of course, implies you can’t have both, and indeed it’s difficult not to get wrapped up in the obsession of whether this treatment is going to work.
???
What Has Stopped You From Trying to Get Better?
I am 62 have been sick for 5 1/2 years. Unfortunately, I have gotten worse over that time. I’m fortunate that I have the money to pay for the out of pocket health costs – although not insignificant.
For me, it seems like it just takes more energy than its worth to travel to see another doctor, spend more money, etc. Is it really going to help? Is it worth the cost to my health? I don’t want to spend the rest of my life, and my limited energy chasing small leads.
I too, am reluctant to try diet changes because food (and wine) are two of my remaining pleasures. (Even though I have also gained 25 lbs with no change in my food intake!) When I try to lose it, it doesn’t work – plans I have used in the past with success.
I guess I’m just discouraged about trying yet another thing. Meanwhile, I know I’m doing too much and find it really difficult to do the pacing and resting I should be doing. Like right now!
Don’t know about anyone else. But Pacing is very important. and how expensive can that be. Just common sense. I can always tell when I have already hit the wall. Now I am trying to learn to know before I hit it. I also am able to do exercises. Prone and some Yoga at least 3 30 min a day. I know peoplw that can’t walk that can do exercises in bed-so don’t even go there with me!!!
Mostly stretching. Everything. If I do too much I back off of the time the next day.
Stress and too much stimulation from outside bothers me the most.
I have quit trying new meds. I do try new vitamins and am on a Gluten free diet.
Really the simple changes have helped me the most. Gluten free is not a hard diet to stay on.
Eat small meal only at night-you will sleep betterI mean very small.
I have to have Protein. Not red meat -but Protien chicken , fish.
If I do take a med I take the smallest amount possible.
I don’t think I have ever really given up.
Just now take a few steps back and say I don’t have to have that tests at this moment. I will wait a few days or weeks. Carole
I try to pace as much as I possibly can; however, it is not true that pacing doesn’t cost anything. Actually really doing it right would cost quite a bit if, like me, you live alone and don’t have anyone to help with the things that absolutely have to be done…..the only way to get that kind of help, and thus be able to truly pace would be to PAY someone to do them, and I can’t afford that……also if you are on SSDI, when they want something else done, you have to do it almost immediately. There is no way to pace that stuff, and not doing it can cost getting a disability check, which is my income. You might think that since disability is only reviewed every few years, setting aside pacing temporarily for the process is not a big deal, but it is actually HUGE. I last went thru the re-eval process over a year ago and I have not recovered from it yet.
Ditto with the pacing and resting – right now :).
I feel much the same way, although I have tried various diet changes and supplements and have been doing better lately. Of course, I don’t know if it is what I am eating and taking, or would be better anyway, because I’ve learned to pace myself, etc.
I did contact two well known ME/CFS doctors. One office required an application and tests, but never got back to me. The other I sent a letter to, and he tried to call me, but I was never able to get in touch. So this was discouraging. I used to be tenacious, but no longer….
Sometimes it is tough to complete things we want to do. I’ve often thought of going to some of the better known ME/CFS clinics but never seem to get around to it. Maybe this will get me going. Maybe not.
I am 68, have had the syndrome for 12 years, and will never give up hope entirely that I will get better. I do not consider myself “old”, though other people may, but I doubt it as I look younger, or at least that’s what I’m told. I have many active friends my age, so do not expect to blame age for much. It is my experience that people who say they feel old are usually ill.
You are SO right! It’s about energy. We have exhausted so much energy running from one doctor to another, only to leave the visit sorely disappointed. And it’s about energy when it comes time to choose cooking a meal or eating a bowl of ice cream instead. And it’s about energy keeping up with all the med check visits so that our prescriptions can be refilled. It takes more energy than I have just to maintain. There is none leftover to get better…….if better can be found!
I do not like to say all that is wrong with me as my brain is listening – then acts accordingly.
I meditate and focus on positives I am alive, I can see, I can feel, I can smell, I can love the planet and view everything as a miracle. Yes, the symptoms overwhelm me that is when I meditate the most.
I have spent too much on natural cures that despite my mind being convinced it would work did not.
What helps me:
Hot water bottle
The best I have sampled bed and pillows
My Tens machine
Keeping muscles warm esp after exherstion
Meditation
Hypnotherapy whilst positive coping techniques discussed by the hypnotherapist ( a medical prof., to do this)
Whatever helps me get a sleep be it gp meds, natural meds I need sleep!
Sunshine natural vit D producer!
Understanding circle from GP to family friends even if it becomes a small circle!
Encouragement – to just get out and see the world
What has not helped:
Stress
Worry
Not being taken seriously at GP appointments
Relationship changes eg partner can not cope with condition
being told that if I take 20 kinds of vitamins minerals I will be cured – then not so feel a failure
Reading that if I eat this and that and this and that and this and that – I will be cured and not! so feel a failure!
Being told to do aerobics repetative movements cause flare up in FMS so feel lazy! though I do what I can and dont give up.
Being told “it is an all over pain condition that one is sensitive to pain” this is the worst comment from medical people I have heard… I have had a radical hysterectomy & was up the same day at hospital making my bed and on home release was able to do what I could – I did not need all the meds offered inc morphene but did have some when under anesthetic. I have had stitches in my gums due to gums being dug out due to lumps, I did not need extra needles or meds. etc etc So.. saying I am sensitive to pain is crap. I have pain at tender points with their aches and pains and some associated symptoms like IBS etc
Once I had my blood cells assessed by a New Zealand expert he showed my red blood cells where too flat and reproduced these faulty cells all the time, when these cells try to get through small capillaries they have trouble and in those areas (tender points) we get pain, when those cells carry oxygen lower than in other people with healthy cells we get tired. When those cells go to the brain we feel under par compared to healthy people. But our country do not assess this. We are told certain drugs will help, drugs promoted by the companies that supply them – money machines. Dumbing numbing drugs that do not cure.
I won the first court case in UK and set presidence that Fibromyalgia Syndrome post traumatic or gradual have clinical findings being set pressure on tender points and a history of associated symptoms over time etc I proved that Fibromyalgia has causations, mine being an accident that triggered it – I was healthy prior. This was accepted in the courts despite it being taken directly by the defence to Appeal – that lost. Achieving a pay out that only covered the wage I lost to retirement yes plus interest does not take away problems – my Husband had affair and left me, he went bankrupt when I was legally separated as I was still married I was told one day before divorce that I had to pay my husbands VAT Tax owing over 100 thousand as he had gone bankrupt after spending all moneys on his woman and luxuries! He was bouyant before leaving. I had given him half of assets too before he left and got an agreement signed by matrimonial solicitor – yet they had no chance against the crown VAT Inland Rev I had their bailiffs ready to take my home I had faught so hard to keep.
So no, money does not cure all! You still get hassle one way or another.
To conclude take care, be informed, love yourself, you are still a wonderful creation x
Having sleep issues have a good mattress and foundation.melatonin for sleep most of the meds I cant or won’t take . dr wants me on drugs and I don’t want to No clear guidance have to wing it on my own. Have to depend on friends generosity for cast out gym equipment don’t have money for chiropractic treatments. Dr said if I don’t stop medical marihuana use which is eaten drank and used in massage oil she won’t treat me so prejudiced physicians. The weather
I was too tired to read your entire blog so I just skimmed it. Did you mention what might be the most obvious?
I AM SIMPLY TOO TIRED TO KEEP TRYING!
Seriously, I enjoy your blog. Thank you for all your info and the dialog you bring to the table.
Wow. Thank you for sharing this! I sometimes feel like this internal struggle is a bigger battle than the actual disease. *Sometimes.*
I battle the need to never give up on myself vs the need to be happy/content/grateful where I am in the present. The times I’ve really been most content, and happiest, is letting the be happy/content in the present side win. Letting go of the blogging, researching and living online, accepting I must live within constraints. I still check out the headlines(how I ended up here). But I can’t “live it” as I did in the past.
Another area that kinda bugs me, that I’d be curious to hear other’s points of view, is re disability. I think some of the crap I’ve put myself through was so I could say “see, I’ve tried ALL these things! I really AM sick!”
You may be trying to fill other peoples expectations. I have learned -it doesn’t matter what they think. You know your body and what it can do. I don’t let my family and friends push me into anything anymore..
I do miss things I want to do with my Grandchildren-but try to do what I can-has to be something really important to them.I just don’t stay as long at the events. If I can’t go I tell them.
You don’t have to please anyone but yourself. Don’t feel guilty about taking what you need.
Carole
All of the above…I have lived with this for 28 years now…raised two kids who got sick with CFS/ME) in their teens too. Had a husband who needed a heart transplant. (I think all our illness is somehow related!)
Anyways, the list of things/treatments we have tried goes around the block. Most of them
did not help in a significant way.
Now I have entered into a new phase of having increasingly longer regular unexplained fevers. Related to the CFS/ME ? Waiting to see an infectious diseases specialist incase it does have some other diagnosis.
Over the years I find my desire to help my kids motivated my research. Sometimes I shut down for 6mths -1 year because of burnout but then I start reading and looking again.
I am with the.. if i do not see reams of tests that prove it works.. no thanks.. did my time of taking so many pills I rattled when I walked and none of em did anything useful.. and in fact made things worse in most cases.. so try something new ?? Let me see the stats and I will think about it
I ‘rattled when I walked’; it’s good to get a laugh Esta. After so many failures you demand something more solid – makes sense 🙂
I ‘rattled when I walked’; it’s good to get a laugh Esta. After so many failures you demand something more solid – makes sense 🙂
after 10+ years and reaching 70 too, and now caring for a husband with dementia, I am resigned to living like this for the rest of my life. Rheumy says he can’t find a physical cause for my latest pain –so what’s new? I’m too tired to fight any more.
Many of the ones you mentioned: all out-of-pocket cost, bad past experiences, lack of support (& understanding), resignation (a fruitless pattern emerges from past attempts), stress, aging.
Some you didn’t mention: memory to follow through (remembering what the doctor said to do, after paying to get the advice); habitual lack of ability to express my symptoms properly to a doctor (these are both actually part of bad past and current experiences); having been dismissed by so-called best doctors (“she’s the best in her field!”) … hmm okay.
I’m thinking of going back to the doctor that took me from bedridden to working a 40 hr week job with a good company in a period of about 2 years. I seem to be needing whatever he did again. Family says it probably wasn’t him… hmm okay.
hi beth:
can you share more info abt the dr who got you from bedbound to working again?
tx, lisa
Wow! If you made that much improvement with that doctor, I’d try it again if I were you. Yes, your family knows you well, but can they really tell why you improved so much?
no money and way too ill, weak, exhausted to push on after 16yrs. of this TORTUROUS illness after trying so much and getting nowhere but only WORSE! THE MORE I PUSH, THE SICKER I GET! thats why!
For me it was simply being sick of trying things that simply didn’t work. I was so frustrated with people telling me that THIS or THAT will work, that’s why I am sick – and then it never works.
In the end, I didn’t just get sick of pouring my financial resources down the drain, but I got sick of being dissappointed.
So I started questioning people harder, and it was clear to me that nobody really knew what they were doing or could explain to me WHY I was sick, and what was causing ALL THE SYMPTOMS. Their advice was piecemeal at best!
That’s why I gave up, was happier to just try to live with it as best as I could.
It was only when I got ‘scary sick’, when things were much worse, that I got desperate enough to do something again – and of course, I was still too skeptical to seek help, so I did the research first hand which then led to my recovery.
Even know all these years later, I get frustrated at people’s lack of logic and symptom only treatments. My dream is that over the years, as more and more evidence accumulates that the medical community will finally have no choice but adopt a more effective multi-lateral approaches and that government funding becomes available for orthomolecular support.
yes, I too am worried about getting scary sick…so want to have a few ducks in a row if that should happen…my family nurse practioner is very open to my needs…suggests supplements, but doesn’t push….also go to a new young psychatrist who is very open and works w/ both prescrps and supplements…
the 2 antidepressants I’m on to increase saratonin for sure is helping…
now trying Rhodeolia …I think the liquid form may be helping…
neurologist has not given up on me….but I may give up on her…however, I take Savella that she encouraged me to take and it has been a huge help w/ the FM…
pacing seems to be the most important of anything….
so, I hope to keep up w/ these 3 medical support systems AND a rhumatologist who didn’t have much to offer, but I’m hoping will be there if anything gets worse…
2 years ago I really thought I was starting dementia….went to be tested now 2 years in a row and definately have mild to significant cognitive impariment….
but has not gotten any worse by a year later…so they don’t think it’s dementia related, but of course don’t know for sure so they will keep testing…and will go on a dementia med if they suggest…otherwise again pacing the most impt.
when I went to the rhumatologist…I had a lot of testing done that day…had a younger friend drive me…starting to learn how to ask for help…but when at the end of the day, I finally saw him….he was very caring & said he thought could be a virus…but by then was too tired to remember to ask him if he would try
some antivirals on me…may pursue again…I have not given up, just sometimes need to get some momentum between consultations…
I try to keep a rough calendar of any changes, getting better or worse from something…could not keep a regular journal if I had to…I’m 62….husband has heart & lung problems….we sold our 85 yr. old family business because we could no longer keep up…we have many blessings…and I will continue to pursue more possibilities…and cope in the meantime…Judy
I was hit with this over 20 years ago.
I have stuck with my first specialist, Dr. Susan Levine in New York. Her Cal/mag B complex drip is a huge help. If you can get a drip, get one. You’ll feel like Popeye after spinach, at least for a week — you’ll remember what it’s like to be well.
Dr. Michael Chieken in Chestnut Hill Pa — introduced me to the allergy/low glycemic, sleep hygiene management scheme.
I live within limits, take additional prescription strength vitamins and experiment with supplements — all the while knowing they are a palliative, not a cure. Ditto yoga, acupuncture, mild exercise and other modalities.
What I absolutely have NO TROUBLE WITH is giving up sugar, starch and staying on a super low carbohydrate diet. I experimented recently with tiny amounts of sugar — organic cane, honey and agave. Tiny amounts and it made me exhausted in a way that I haven’t been in years, except after exertion. I stayed like that till my next drip.
If you can’t keep away from the sugar and carbs, then you must like being sick.
I had to give up wine — fungal and yeast + brain fog and gut issues.
I have learned to love other things and activities.
Above all — limit computer time, and stay away from focusing on the illness.
The more I focus on the “well” aspects of life and outside interests, the smaller the illness becomes.
I usually don’t ever comment on blogs anymore, but I’m always puzzled in my Dr’s office to hear people moan and groan, and still steadfastly defend their right to eat junk.
I don’t expect cure — just management.
I eat healthy but I do have a sweet tooth and really struggle to give it up entirely and definitely do not like being sick. I don’t feel any worse from having a bit of a sugar in my diet and it gives me so much pleasure. If i had a definite reaction to it it might be easier to battle the cravings.
Oh and to add when I tried to go very low carb and give up all starch, I felt awful. Persevered for a month and then had to reintroduce some starch, we are all different. What works for one may not for another. Obviously a diet high in processed foods, sugar and bad fats is not good but apart from that we have to find a way that suits our body.
I just blogged above, but forgot to mention diet…I so agree….fortunately I have been off of sugar foods most of my adult life…I have just about every symptom that folks have w/ this EXCEPT HEADACHES and I attribute that to my sugar free diet, also MSG free and generally low gluten & low carb as much as possible…really see the difference when I eat something I shouldn’t…so yes, there is more to life than food…please consider trying!! Judy
I’m not giving up, by any means, but I am definitely limited in what I can try because of lack of money. I don’t have the ability to borrow or even get a credit card, because I’m already living on such a small amount my most basic needs aren’t even covered.
I also am extremely sensitive to many things and have had very bad reactions and permanent worsening from some of the things I have tried. So, I would be hesitant to try something else that would be likely to cause more problems, but if the potential benefit were good enough and the risks relatively low, I would still try something new.
Also, I only manage the energy to get to the Dr or to see how my body will react to something new every so often. I have to space things I try way apart from each other.
Another big issue in trying something new is not being able to find a Dr who understands my illnesses and will allow me to try different things. I will try things regardless of what a Dr says, if I can get them without needing a Dr and if I think they will help, but a lot of things require a prescription or lab work, etc first so if I can’t get a Dr to get on board, I’m out of luck.
Oh and also, some of the things that might help my ME/CFS will make some of my other illnesses worse, so I can’t try them for that reason.
How about waiting 15 minutes in a serene comfy waiting room, then when called in to a cold uncomfortable room to wait an hour to see one of the best CFS doctors in town where by then all I want to do is go home. We then spend 15 min together where I’m told my blood test results show X,Y,z & I say yea that matches my symtems I told. You I had. I leave in a fog, don’t remember much of anything else. Month later won’t renew medicine as was suppose to get blood test 1st .ok my bad- get the blood test done- call back 1week later- say will call back & after many calls to Drs. Office still no call bk from the Dr. I know they’re busy but it’s always something. So I’m now working with a Dr that specializes in bioidenticle hormones. & sugar, glutenute free & dairy free diet . Muscles don ache, but am weaker from limited diet. Don’t know how long I can go w/I birthday cake ice cream. It’s been over a week ugh !
Like anncavan I vascillate between just living with it and being pro active. Right now I’m giving LDN a try and just got off of a month of being gluten free – never felt worse doing that! Cort, I think all you’ve done by not going the supplement route is saved yourself a potfull of money. I’m getting very cynical about diet, supplements and such. Just saw a 20/20 program about a lady who has eaten nothing but French fries since she was 6 or so and her doctor says she’s perfectly healthy and she’s now in law school. Living in CO, I see folks in their 70’s or 80’s , even 90’s, being very active – I don’t think we should ever give up but try to have acceptance for what is while on a sensible search.
Lack of money ie poverty stops me.
Exhaustion.
Little money now.
Experience.
Lack of faith that anything will work.
No doctor now to order tests to see what’s wrong.
Exhaustion.
Tired of treatments it don’t work
I just want to get on with my life
This disease is still poorly understood
Since a crash destroys in a snap all the good that antiviral drugs or diet or supplements or whatever else has brought you, and since pacing seems the best way to avoid a crash, what stops me from trying everything is my feeling that pacing is, really, THE way to handle this illness. Were I to have all the money in the world to try all treatments available, pacing would still come first. I would use the money not to travel to see doctors, but to stay home, rest and be rid of all stress.
I recently turned 70. I now realize that though I wasn’t diagnosed until I was 50, I have suffered from CS/ME since I was 25. It forced me to stop teaching at 52. I was anxious to try “anything” as I was so tired of being ill, and of being told it was “all in my head”…to just “find a hobby”!
I’m now at a point where I am unwilling to try any more “stuff” because my gut has been protesting for years! What’s the point in attempting to get a little better when the side effects of stomach pain and diarrhea prevent you from leaving home?
The two most frustrating parts of ME (to me anyway) are the inability to make plans, and a non-functioning brain. I do have some good days and when I do I am enormously thankful. Guess that’s what keeps me going…the thinking it could be so much worse!!
Those of you who have family support are truly blessed…
Depression. When I’m depressed – which is quite often since my depression is somewhat treatment resistant – I just lose the will to do anything more but exist. But when my depression is better, I make plans, I set goals for how I’m going to make changes, etc. I am convinced my gut is involved and I want to work on that. I also have us a corner of the house that had a leak and I want to get it checked for mold. But I don’t know whether I’m well enough to tolerate workmen in the house. That would be an absolute nightmare. I have extremely bad sensory overstimulation problems.
I’m also too sick to travel to see any of the CFS experts, so I can’t benefit from any of their expertise, and the doctors here are halfway clueless.
Also, I have been sick for 4 years and have pretty much been on a downward slope since then so that Adds to the sense of hopelessness.
I also react to extremely small doses of drugs so I’m leery of trying new supplements or medications or whatever.
I live alone and I have a person hired to help me a few hours a week, but I don’t feel like I have the support to do something like undertake a trip to Charlotte or New York or Salt Lake or Miami or wherever. I am in the middle of the United States, which seems to be the desert for CFS docs.
oh, don’t give up on anti depressants…your family dr. can work with that….just tell him/her you need a very low dose!…and keep trying to you get one or 2 that helps…you can’t tell overnight…
I sure know what you mean though by the travel…to specialty docs…I can’t make those trips either…
and the overstimulation is a big deal for me too…hang in there!
My most recent help has been discovering Chronic Fatigue Syndrome: A Treatment Guide only available on a free download of Kindle from Amazon. I had not used e books, so was skeptical….but well worth the $4.00 or so they charged…written esp. for someone like me who has limited cognitive ablilties….
spelling too. :>)..Cort can you repeat the URL for this????? Judy
Here was an email from someone
“After all these years and so many different treatments, I still think the most unusual thing I’ve tried is the cobra venom injections three times daily for about nine months. I researched that thoroughly before trying it! Even that had good science behind it as it was originally developed by Dr. Norman Hass (spelling?) for the treatment of people who came down with polio and many people I knew with post-polio syndrome were experiencing many of the same symptoms I was at the time. ”
Cobra venom!
and let’s not forget leeches.
And Bee Stings
What if we could go back in time and ask people who had MS or other undiscovered conditions why they stopped trying to get better? Your article’s title makes it sound like we are responsible for our failure to get “better”. It’s true that there are some small ways to ameliorate the symptoms of MS but would you really have said at that earlier point in time that sufferers of MS should have kept trying to find their own cure? Knowing what you do now about MS, do you think anything they could have tried would have made them better? Or do you believe as I do that they suffer from an attack on the body that was debilitating and would be so no matter what they tried to do to cope?
You didn’t say “What stops you from trying anything to FEEL better.” You said “… What stops you from trying to GET better.” That’s a different subject. Getting better would imply having found a cure. Attempting to feel better is something I think we all do all the time, even if it means we lay our head down and just… rest.
I am 60 and I had sudden onset at 36 yrs old. I may not see the cause of CFS discovered in my lifetime. I do not want to be a guinea pig any longer, not to mention my brain is so tired of struggling. I feel better than I did the first ten years (which were awful) and have settled into a disabled state that is acceptable because I am far better off than many disabled persons. Since I am no longer in the critical stage, and with pacing have an acceptable level of discomfort, I have decided to go on living my life within the constraints CFS places on me until they have something concrete for me to try based on discovery of the core cause of CFS.
Your articles always make me think, and I seldom comment, but I wanted to add my two cents about this today. Thanks for your work on our behalf.
I am 64. Nothing magical is coming down the pike that will be explored, understood, have a catalyst or inhibitor discovered test it for years clear the fda and have it on the shelves for me any time soon. I have lost enough weight to feel comfortable with my size. I continue to have other health issues which may be corollary or may not. Right now my living situation is too expensive to my illness to maintain. I live in a rural area and must travel. My short term plan is to move to a city where an appointment or airport is a cab or bus ride away.
Long term. I am only interested in minimizing my physical, emotional and scheduling needs to maximize my enjoyable life. I can usually reach the place where I am able to do some light thing every other day. Add another day right after and I have to pay. Realistic planning, elimination of the urge to work as if I were my old self, and monitoring myself for my status is what my future looks like. I can live with that. If something comes along that eases a symptom as has for me a couple of times then I am grateful. I am not searching the web or looking under rocks anymore.
I’m 65 and have had fibro for 23 years (but who’s counting, LOL). It has varied from nearly unbearable pain at times to only one almost pain-free week (recently!) in two decades that left me remembering what that it was like before this disorder, which I had forgotten. I still try a new supplement occasionally, based on research I read, currently COQ10 and a probiotic. Who knows. I have not “stopped trying to get better” but I’ve tempered my treatment expectations a lot. I expect I will have fibro pain and symptoms for the duration. I’m pretty sure that any new treatments, systemic meds, will also produce adverse effects that I, personally, would probably find unacceptable. For most orphan illnesses, if something actually worked, it would be on a front page. The presence of a huge number of “remedies” and varied “successes” mentioned here and elsewhere convince me that, like many complex medical problems, this one probably has numerous subtypes. One would speculate that they might have various etiologies and require different responses. I’m not angry or depressed other than the transient feelings I associate with fibro. One of my goals has been to keep my illness from my father (unfortunately recently deceased, but I did it) and my 87 y.o. mother, so far so good. My wife has heard too much, though, like spouses of anyone with chronic pain. When things get bad, I think of the zen folks’ saying, “chop wood, carry water”. And since we only pass by once, better get what you can out if it.
All of the above stops me from getting better. Mostly it is the financial cost of the many, many treatments available that would vastly improve my quality of life.
It drives me nuts (more than I am already) that if I could but afford these treatments I may be able to return to the workforce as a tax paying citizen, again. But no. Because I cannot work, I cannot afford these treatments. What is not covered by my health care plan (meds only basically), is unattainable.
So I continue to suffer, and endure. One does the best with what one has.
Despite all this, my outlook in life is not bleak. Nor even overly negative. It is what it is. There is no point railing against what I cannot change.
I used to think if only I had the money, having had money then no money for no reason of my own, I thought I would be much better with – no worries (I had different ones) best treatments (I paid and got no joy) best of this and that (wasted) best foods (yummy but no effect) back to no money (symptoms the same)
We are all on a journey to find what is best for us but we can enjoy the here and now by viewing everything as a miracle and loving ourselves as a wonderful human being x costs nothing, meditation relaxes our mind and bodies.
I don’t really try to get better. What I do is to try and maintain what improvement I have already gained.
I have always enjoyed food and cooking and now search for recipes that have no sugar, gluten, soy, eggs, dairy or any foods that I cannot tolerate (They are many.). My gut seems to be the cause of many of my problems. When its better, I’m better and when it’s not then I’m not well or can’t sleep.
I have had ME for 14 years and I am gradually better. I don’t have any expectations of ‘a cure’ in my life time. My focus is on doing my pacing/meditation 4 times a day wherever I am, eating plain food, keeping up my walking and enjoying what activities that I can. Long ago my doctor told me to lie down and meditate before or after any activity and I stick to that. I can walk 10 to 15 minutes but longer if I do my shopping slowly. My muscles are weak so in one year I have gone from doing 3 arm exercises 2 times every other day to 5 exercises 10 times every other day. I admit to sometimes not doing the exercises for a month or not keeping up my walking but I always return to them eventually.
Don’t forget to LIVE through it. No matter our health, we still get this one – and only one – kick at the can. HAMMER IT!
+1
I was diagnosed with this 40 years ago after being sick with a virus. Nothing has really changed except the name and there are a lot more of us!
Chronic illness causes a grief cycle to occur. There are stages..usually 4 but everyone grieves in their own way. Stage 1 is disbelief: The doc must have missed something..I should try another and more tests. The next two involves looking for solutions, treatments, trying things,etc. I am and have been in stage 4: Accepting and continueing to live. I am luckier than some..I do have my life!
Over the years my illness has gotten better…then worse. When I first went on disability and moved to the ocean, I felt great..no stress from working! Then I took a part time job doing nursing support for the V.A. and I have been in a chronic ‘flare’ ever since. I rest lots and accept the days I can’t do anything.
The one thing that really helps me is range of motion stretching and exercise. I do this every morning before I start my day. It helps me to stretch these muscles which seem to be so tight after being in bed for the night. I also keep a hand weight and “foot peddler” next to where I sit to relax or watch tv. Swimming really helps too as long as I don’t ‘over-do’
Pacing, as others have noted, is the best way to go. But remember…this illness ‘cycles’ meaning if you do not feel well for a time…you will feel better soon. This helps me “give in” to the fatigue and pain when I need to.
I have helped run a support group online for 15 years and once I was ‘accused’ of not being ‘proactive’ in pursueing ‘cures’. I have tried some in stage 2 & 3. But because of expense, lack of proof that it works, and the fear some of this could make me sicker, I have chosen my path and it works for me. Believe me…in 40 years I have heard of some strange ‘cures’, treatments, etc. I am 64 now and accept my limitations.
If I had made the choice to not move forward 40 years ago…I would have missed out on so much living! This is not the life I had imagined..but it is good ! If I tried a protocol or drug that made me sicker, as many have, I may not have had that choice to be happy!
Everyone with these illnesses (ME,CFIDS,FMS and several others) deserve a purple heart for dealing with what they are. I hope that a ‘cure’ or at least an effective treatment comes along. Take good care of your bodies, though, for when that day comes along you will want to be ready for it! Gentle hugs!
Lack of information. Where doctors should be the ones to provide it, they often don’t or are completely misinformed and their treatments make you worse.
Also, not everybody has access to information or the ability to digest it. Because of money, the fact that they are to sick, lack of education, the cognitive disfunction that is part of the disease, and language problems (believe it or not, not everybody speaks English!).
It is terrible that the burden should be on patients to try and get healthy!
What a great article, Cort! This is a topic that I have been pondering for years, and you definitely hit upon many of the reasons that seem to be responsible for people not being open to the idea of trying mold avoidance (the treatment that Joey Tuan postponed considering but eventually was helped by) or related treatments such as detox (coffee enemas, anyone?).
Another issue that I sometimes hear relates to the difference between “getting better” (meaning improving) and “getting well” (meaning totally recovering). I’ve heard virtually no cases of people who have been very sick for a long time with this illness who have permanently and totally recovered, to the point where they have no symptoms left and never get any symptoms ever again. A substantial number of people that I’ve interviewed have improved a whole lot from that level and length of illness though, to the point that they say that life feels totally worth living again. So I think the idea that “I can’t get totally well” or “That won’t make me totally well” also might be added to your list.
Another thing that I hear as a reason for not pursuing avoidance is, “I don’t believe that mold is ‘the cause’ of this illness.” But even if mold is just a trigger for symptoms that are due to “something else” does not mean that avoiding mold is not worthwhile. This dynamic could be applicable to other treatments too — such as gluten avoidance or candida control or supplementing folate.
Thanks again for an excellent article.
Lisa Petrison, Ph.D.
Paradigm Change
http://www.paradigmchange.me
Yes, I think our belief systems get in the way quite a bit. I imagine a lot of people think well, mold is not it for me – not really having any idea whether that’s true or not – it just doesn’t seem like it’s it…
Mold avoidance is not really endorsed by many physicians – its not a specific part of their protocols; it really comes from the patients that have improved so far as I can tell. That adds another burden to it. I don’t know if much research is done but we don’t hear much about that either .We like to hear first from people who are in positions of authority.
I think that our belief systems limit us in a variety of ways. Of course they also protect us too.
I didn’t believe that mold had anything to do with my illness either, even after I learned a bit about it and believed it could be a factor for others. I spent all of 2007 posting on ProHealth, focusing on antivirals and methylation supplements and totally ignoring Erik’s comments about mold in terms of my own situation. So I am very empathetic to others who don’t think that mold is it for them either.
There are an increasing number of really good doctors with strong backgrounds who now believe that mold is an important factor in this illness, or maybe even at the root of it. Joseph Brewer, Dave Ou, Keith Berndtson and Neil Nathan come to mind. So things are changing.
What we really need is now more study into this topic, so that we can see what we are dealing with. For instance, I spent a good bit of time talking with Linda Tannenbaum of Open Medicine Institute this summer about doing a study looking at whether living in a moldy home is a risk factor for the disease, but in the end it seemed that they still see mold as really low on their list of priorities.
Perhaps soon that will change. It certainly feels like that is where the momentum is going.
Here’s the proposal that I prepared for OMI. Thoughts from anyone interested would be appreciated.
http://www.paradigmchange.me/contact-form/ermi-study-proposal.pdf
Best,
Lisa (lisapetrison at yahoo)
Thank you for this great article. I really enjoyed reading all the comments as I always learn so much from the readers who post here.
If I tell you that I’ve never taken a medication, well none prescribed by a doctor, you might assume I have not been trying to get better. I do use homeopathics though and have found them very helpful for certain symptoms. The worst symptom for me since the beginning has been vertigo and a constant feeling of being off balance. I was told about a product called Vertigoheel made by Heel Inc. and it has been a lifesaver. It doesn’t work instantly but within a few days the worst wobbles were settling down and after several weeks I didn’t feel as if I was ready to tip over into an attack.
The first period of use was at the beginning of this illness in 2000 and within several months I was able to discontinue. I still had a weird off balance feeling over the years but no attacks. Then last November I attended a loud and busy birthday party (the very first time I’d been out for a social event in 13 years) and I woke that night with a major vertigo attack, so I started the Vertigoheel that night and slowly it started to work its magic again. I’m still feeling shaky most days but it’s slowly improving.
I also gave up gluten 3 years ago and that has made a world of difference for my tummy issues, which are now gone. A few weeks ago I started craving carrots for some reason so we’ve added steamed carrots to our diet and I feel better from eating them (no idea why). When I crave protein, I eat some and when I crave carbs, I eat some. This seems to work for me. We also bought a new bed (our mattress was 20 years old! and I’m sleeping better now).
So I guess I could say I haven’t given up trying to get better (or feel better as someone else mentioned). Thanks for listening to my long-winded recital. I don’t usually post here as it makes my brain fog worse to concentrate but I was determined this time to write a note to thank everyone for all their good information and helpful advice and maybe pass along something that might be helpful to another. My best wishes for everyone on this rocky journey.
I believe I had no choice, but to keep looking for things/ways that would make my life at least bearable. My ME/CFS was so severe, that it would have been impossible for me to go on living in this way; nauseated beyond belief, anxiety/depression, pain, insomnia and utter and complete exhaustion. For myself, and my children, I had to find answers, or I wouldn’t be here today. Fortunately, through my own research I did find things/ways that have helped me; after almost 30 years with ME/CFS, I’m not cured, but I definitely do have a life.
I now listen to my own body. I don’t push myself and I go at my own pace. I’ve learned to accept my gifts/talents and also my limitations. I don’t go against the grain of who I am. I believe trying to be somebody I was not, greatly contributed to the development of my autoimmune/neuroimmune illness ME/CFS. I give my body the things it needs to restore itself, and to calm it down; I am no longer “running-on-empty”.
One of my favourite quotes:
“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.”
Henry David Thoreau
Yes, you’re in a definite category – you’re so ill or in so much pain that you really must keep searching. I think a lot of people are not in that category but a subset is. Thanks for bringing that up.
All this searching has left me with a severe anxiety disorder which cripples me more than the CFS. No medication seems to work as I react funny to everything. I constantantly think what is wrong with me, what could be wrong with me and what can make me better. I am scared stiff to get worse, feel helpless and afraid.
Its awful!
I do have the belief that if I stop searching it means I give up and I will die. Very black and white thinking , I know.
To learn a middle way,be in the present and enjoy what I have seems near impossible but I am trying.
I believe coming to a place of acceptance away from fear will be the biggest life lesson for me.
So thank you every one for writing your thoughts on this subject.
xxx
Hopelessness.
Things that initially stopped me from trying:
1. Unable to find a doctor to take me seriously – they all said there was nothing wrong.
2. No success with all the alternative therapies (acupuncture etc) and supplements I could think of. Although I now know there are way more supplements than I originally thought.
Instead I concentrated on trying to save as much money as I could so that I would have enough to live on until retirement age should my health pack in completely.
Things that made me start trying again:
1. My health packed in completely and stopped me from working before I’d managed to save enough.
2. Found a doctor that took me seriously and got a diagnosis, although they couldn’t actually prescribe any treatments.
3. Became informed about the illness I was trying to fight (thank you Health Rising!)
4. Found a supplement that made a small difference, which encouraged me to try others as a result of being more informed.
I am now working 2 days a week. It’s progress that keeps me trying.
I think stress is a big reason for me to take a break from trying things. I’m already doing a lot and taking a lot of supplements every day. I need a break sometimes.
Also, finances play a part. And getting burned out from having my hopes raised and then dashed plays a part.
And I like the idea of just living the life I have and enjoying what I can enjoy.
In spite of having this illness for almost 25 years, I still feel like I will get well some day. I feel like my body naturally tends to wellness. Some day it will get the upper hand over whatever this is.
Oops, it’s almost 24 years for me. Bad math skills strike!
What Stops You From Trying To Get Better? An ME/CFS and Fibromyalgia Community Report
I am very angry to read this .
I am not going to search for a non existent cure just to fulfill someone elses idea of what i should do or take advice from experts who forced me into exercise and into a relapse.
I am more well than my sister and able to do more she is severely ill and i can tell you she is trying her best .
A major reason, that I will never give up trying, to at least validate my case of ME/CFS is the fear of not being believed about my illness as I enter my senior years. The thought, that one day, I will be under somebody’s control (other than my own) In a hospital, or long-term care senior’s facility.scares me to death.
One of my greatest fears as I age is not being in control of, and monitoring my own case of ME/CFS. I have sensitivities to prescriptions meds and even if I can tolerate one, it is in a much smaller dose than the average person, I have learned how to suppress my own immune system through trial and error and a combination of supplements, antihistamines, pacing etc, which has led to a great improvement in my ME/CFS. I haven’t been under a doctor’s care in years. I gave up on them out of sheer frustration because of a lack of understanding of my condition.
I fear that some day because of old age and/or injury, some ‘know-it-all” medical professional will start pumping large doses of this, or that prescription medication into me treating me, like one of the masses, and not an individual with an autoimmune/neuroimmune illness. I fear being treated like the majority of older people that can take a dozen different “pharma” drugs, or be injected with vaccines (eg flu shot) with no adverse effects. For me to do so would lead to unbearable activation of my immune system and worsening of my condition. My ME/CFS symptoms would become unendurable. This is why I will never give up looking for answers and validation of ME/CFS. It’s the fear of not being believed one day, when I can’t advocate for myself.
That is such a scary thought. I see what you mean.
I live on my own (no help with essential tasks), have loads of credit card debt from past crashes (how the doctor’s bills and utilities got paid during those times) that I must work to try and pay, and I’m over-extending myself just doing the bare minimum to maintain this.
I don’t have energy to research this and I don’t have access to me/cfs specialists (even if I did, I couldn’t afford them).
I don’t have energy to find/maintain a better job.
Every time I’ve tried to push myself to do something (get my degree, ect.) it leaves me worse off for having completed it.
Anything that makes me feel better short term seems to be masking my symptoms so that I over-step my energy envelope and relapse.
I won’t ask my family for more money…for too many reasons to list here.
I won’t ask friends for money because I’m too afraid to lose them when they eventually get fed up with having such insignificant returns on their investment.
I pace exercise (well, did till I couldn’t any longer…and still do when I feel reckless and rebellious…the payback for half an hour is about 3 days), I diet, …in the first 3yrs of this, it used to help. It still helps on a maintenance level, I guess. I know not keeping to it makes me feel worse so, I keep to. My best day this year was for a few hours after I was put on a week’s worth of bed rest for a cellulitis infection in my arm. I can’t afford to rest that much normally; the bills have got to get paid…but, it was nice to learn that some gains could still be made.
This is a fascinating topic, and one question that I’ve been pondering since it was first asked. I went through several layers to be really honest with myself.
Like many others, finances play a big part now. Yes, various treatments can help, for me acupuncture is one. But it doesn’t cure the fibro, the effect wears off after about 2-3 months, a bit longer when I follow through with home exercises such as QiGong. I’ll start off with good intentions, but then I crash and get off my routine, and it would involve starting all over again, both energetically and financially. Last winter my husband and I signed up for Tae Chi classes and I wasn’t able to finish them.
Life has really hit my family with several whammies, too, which makes perseverance more difficult. There’s an expression I can relate to…”A mother is an happy as her unhappiest child”. It’s difficult to separate from that bond. Also, I’m from the northeast and weather has been a huge challenge, too. Lately I’m functioning significantly below what I call my baseline, and I guess I’d say I’m just getting weary of it all.
And to be perfectly honest, I often feel that by being at home I’m like a ‘sitting-duck’ for requests from others, even if it’s as simple as wanting my time for a chat. I’ve improved from my initial ‘crash’ in 2005, but I’m not the person physically, or even cognitively, that I was before that. One problem I sometimes have is getting the words together in my mind to come out my mouth. My husband does understand all this. I look better than I am, so I don’t think others fully appreciate the toll these things can take on me so it’s additional effort to attempt some sort of control over boundaries and what I know I need to do for myself. I should add that I’m 63, starting to have what actually are some minor physical issues related to aging. I didn’t have a career that I can go back to, so it’s hard for me to envision what life would be like if I was suddenly well. On better days I’ve looked into volunteering, but then two days later I need my husband to go with me to food shop. It’s difficult to have the hope for the future I had when I was younger. Perhaps I’ll feel better about all of this in the Spring! I often have dreams of when I was a child and would just run and run. My brother is a runner and I’d love the freedom of being able to do that again.
To sum up, I think what’s stopping me from trying to get better is being let down much too often already. I’ve lost that hope that someday I’ll be back to ‘normal’ again if I find the right cure. It’s more adapting to a new reality. Perhaps that’s the healthiest attitude. Be easy on myself and take each day as it comes.
THIS kinda stuff discourages me: http://guardianlv.com/2014/02/fibromyalgia-and-mecfs-labeled-mental-and-behavioral-disorders-by-who/
If ‘real’ science dismisses us…what can possibly help those of us who are at the end of our lives?
This is why, I have always said, that unless you can unravel the mystery of your individual case of ME/CFS on your own, you will wait an eternity for answers to come from the medical establishment.
Signed a thirty year sufferer of ME/CFS
There is no solution for ME. I have try a lot to get better. Looking back, I would advise anyone to just minimize time and engery to stabbing in finding a cure. Take a rest, use a good vitamin supplement with all substances, pace yourself, combat infections and stay away from doctors and psychologists who do not know this disease and believe in it. Do not waste any energy on unbelieving relatives or friends. Try to accept that you can no longer do what you like. Stay as active as possible. Do breathing exercises and meditation for relaxation. Do only participate in scientific research studies. Keep hope of improvement but know that you probably will never get better. Rule out any other possible diseases.
I have had ME for 30 years, triggered by Coxsackie virus in early 1980s (I was lucky to be diagnosed by consultant neurologist and was offered different immunotherapies to begin with). I have been severely ill and describe myself now as moderate with severe dips. We are hard-wired, surely, to want to get better from any physical illness, no one would want to remain ill, and I spent the first decade of my illness seeking treatment. Therapies I tried ranged from plasma exchange, ACTH injections, anti-virals to yeast-free diets and IV magnesium and vitamin C. However, at some point, I realised there was no magic bullet and I learned to live with what I had. You don’t consciously stop ‘trying to get better’, you simply can’t spend every waking hour pursuing yet *another* treatment that is likely to disappoint. And the expense and energy of pursuing therapies also, of course, come into it. I think many of us with ME end up in a place of pacing and resting and treating symptoms. My goal these days is to stay as stable as possible, and avoid anything that could risk my getting any worse. I think, though, for those who remain unremittingly severe/bedridden, constantly searching for that miracle cure is probably more urgent.
• wish I could just click like on peoples comments have read so many helpful ones and ones where I admired the person sending messages, ones where I just sympathised etc •
What stops me from trying to get better?
When I was still quite ill, I was less concerned about side affects but mostly about the cost of treatment. I had gotten ill in university and never made earned money. I wanted to do Gammaglobulin IVs as recommended by Dr. De Meirleir, but had big concerns about asking my parents about the $13k this would cost. I lived in Germany back then where health insurance covers usually everything, but they didn’t cover this off label use of Gammaglobulins. My family’s tradition of being frugal and the German consciousness of, “health care should be free” nearly stopped me from trying it.
I journaled a lot about the decision, however, and what helped me to finally decide to invest in my health were my thoughts on the question: “What is the cost of not trying the treatment?” I realized that I would miss out on the chance of getting better. I would not be able to work, which in and by itself would cost about $30k-$100k in lost wages each year, depending on how much I would be able to work again.
The treatment didn’t actually help. Still, I am glad I tried it because the risk of spending $13k and not seeing improvement i can better live with than not having spent the $13k for the treatment and having missed out on the possibility to get better and make a living again.
Today, five years later, I’m fortunately fully functional and happy again. However, my body is still only at 70% which I notice especially when i don’t stick to my strict lifestyle, little daily helpers (smartphone, lists etc.), self-care regime and diet restrictions.
Now, possible side effects play a much bigger role. The reason I didn’t do stem cell treatment when it was in vogue or GcMAF a couple of years ago is that I’ve heard that–even though some people improve greatly–some people got worse.
Treatments that I have no hesitancy to try are little tweaks to my lifestyle or a new mind/body technique. I enjoy the process of conducting little experiments and the cost and risk of side effects is low.
I also just invested $500 in a treatment with nutritional supplements that Erica Verillo, author of my favorite ME/CFS treatment book, recommended to me. I believe the risk of side-effects to be low, so–even though I drag my feet a little about investing my time into trying these things–I do it because the possible benefit very much outweighs the health risks.
Perhaps, if ME/CFS received the kind of research money that HIV got ( and still gets ) we wouldn’t be having this conversation at all. Sad.
Been coping with my ME/CFS for 24 years now. Just finished a two year treatment plan of Valcyte that has become less effective during that time.
The past few months have been close to giving up because the Valcyte was $750 US per month after the insurance covered the other 75%. Can’t keep taking it…
Decided to start over from the beginning. Found a young doctor that thinks outside the box and have started retesting everything. The past 24 years has spread my testing and treatments across dozens of facilities and practitioners. Going to go through everything in one place – who knows? Maybe we missed something along the way?
Best wishes to all my friends and friends I don’t know yet with horrible disease!
What stopped me from trying? Pain meds/psych meds prescribed for ME/CFS.
I had to quit working over 10 years ago. An interesting note is two of my coworkers aslo came down with CFS?? I looked at a lot of cures and tried many. My conclusion is there isn’t a “cure”. My goal has become to be as heatly as possible. I have lost weight, eating heathy and going to weight watchers. I go to a massage therapist and family therapist every two weeks. I do take many supplements also. At 65 I may be the most heatly since basic training but I still have CFS that keeps me home resting more than out doing. Leaning to listen to my body has been the hardest of all treatments. I sure would like to be “cured” but I have little hope?
I had to quit working over 10 years ago. An interesting note is two of my coworkers aslo came down with CFS?? I looked at a lot of cures and tried many. My conclusion is there isn’t a “cure”. My goal has become to be as heatly as possible. I have lost weight, eating heathy and going to weight watchjers. I go to a massage therapist and family therapist every two weeks. I do take many supplements also. At 65 I may be the most heatly since basic training but I still have CFS that keeps me home resting more than out doing. Leaning to listen to my body has been the hardest of all treatments. I sure would like to be “cured” but I have little hope?
“Pacing and rest” works best though there seems to be a continual negative response from those including, family, friends, doctors, employers, etc; who simply do not understand the conditions of Fibromyalgia/CFS/Me. Not only is it tiring to be tired, more importantly its tiring to be part of the population who is thought of as lazy, or crazy when asking specific medical questions relating to our conditions without ever getting the real answers if any at all.
At this point the professionals say everything is normal on paper. I’m told: It’s all in my head & to go get some biologic or other meds that will help. Those temporary ‘bandaids’ further complicate my entire body systems and other related conditions. Past experiences with severe side effects propelled self determination to eliminate harsh medications, detox the body, and since ‘everything’ appears normal, I’m convinced something has been missed whereas the only treatments that have worked are ‘uncovered’ such as naturalists, homeopathic, combinations of acupuncture, or alternative forms of effective treatment. Options are not many when affordability is basically non-existent.
While the blood/circulatory system is the pipeline for the entire body as a whole, with combined conditions that are “immune” related such as psoriasis, arthritis, CFS/Fibro/Me it is mind boggling to me why the plethora of evidence is still being ignored by western medicine, insurance, or otherwise regarding the treatments that do work, yet do not feed into the big pharma box. Outside thinking? I’m not willing to take medications that would set my body back years regardless of the percentage of or lack of functioning that the world dictates should exist. It’s my body, I have to live in it. Doing research and connecting the dots that include IBS (gut) Without genetic/DNA testing to find the markers that can identify the underlying cause is what I’m after…The Cellular aspects of RNA damages from medications are being overlooked.
The myriad of testings which obviously are only ‘surface’ testings that do not get to the underlying factors relating to blood/brain/barriers, HPA axis’, immune system regulatory connections, DNA/RNA etc. Without specialists in the field the medical maze goes on and on. This journey of health has gone on over 25 years, so now accepting that I do what I can when I can how I can…which are all in comparison to what used to come easily, that now takes alot of work in all regard.
When one must rest before and after any level of physical exertion being told to exercise, or perhaps do, do, and do more than is actually possible, it just reminds me that my body reacts, over-sensitively, and or goes on shut down when attempting to do the things that people without such conditions are able to do. Then there is also the ‘barometric pressure’ or weather changes that also impact the ‘over-sensitive’ body and we all know that there’s nothing we can do about that.
What stops me?
Slows me down is more like it…
I have to work to sustain myself. I maintain an apartment, my car, food, supplements. If I overdo, I am in big trouble, even crashing so bad at one point I could not work for over two years. So my approach this time is a lot more cautious, working enough to pay the basics and keep my supplements going. Occasionally I add new things to my protocol to try to improve my life. It would be a dream come true to add even two more hours a week to my work week, meaning a little more income, more well-being, maybe some savings and an increased sense of security.
Increased function and improvement for one area means something else imbalanced lately. It is such a challenge to try things “on the run,” still functioning daily and weekly
Overall, I am slowly progressing. That is the upside for sure!
My symptoms still read like a classic ICC profile, but are definitely less intense. It is possible to improve, to enjoy a high quality of life, and to never give up hope – but will I get better? Will I be “normal” again, or always this “new” normL I finally am at peace living? Unknowns…. But life is good!
Glad to hear it Natalie…Being a peace where we are is so important. I love that life is good! That’s very good! 🙂
What made me give up? After years of chronic pain, losing my job ,becoming disabled, Losing my independence, losing my fiance, my home, nope none of that, I was at a Dr’s appointment one day that I literally had to drag myself too, I was on opioids the Chronic pain, nerve pills, for the chronic stress,Sleeping pills for lack of sleep along with whatever else was prescribed. Back to the point I was telling my Doctor My neck was in so much pain, I had previously had Whiplash from a car accident..I don’t know what you know about whiplash? all I knew before I got it was it was supposedly a extremely painful condition that medically couldn’t be proved so in the tv shows I used to watch they would pull some maneuver or other in the court room to make the Plaintiff unthinkingly move his head therefor proving he never had Whiplash.
I myself did have whiplash and no one to sue as the perpetrators were illegal immigrants with no insurance anyway back to my point about whiplash as someone who had it I can honestly tell you it is one of the most painful conditions someone could ever experience. and as I was explaining this constant pain to me my Doctor said, Quote: Rita, you know what my neck hurts right now to but I’m at work the bottom line is You need to go home.. grieve for your old life, and then except it ..and move on …because bottom line it will never be as it was before… this is your life for now on…DEAL with it!!.Okay granted she may have had a point but she crushed whatever hope I had left that day. I went home forever change by her words echoing though my mind over and over I became deeply depressed..I lost my fight…It was over two years before I went back to a Doctor..I didn’t try to find new doctors my Spirit was crushed. I stayed in the house and stopped living, I gave up…
I decided to go all-out scientific
Not jump on hype etc n stay v sceptical of treatments.
Figure out my predisposing factors to date (posture, diet, chronic lifelong fear n stress started aged 7 (soon 37), ACEs, accident, surgeries, back-to-back antibiotics for suspected UTIs)
That said, it took nrly 5 years to request medical history n figure this all out since diagnosis feb 2014 when i stopped working
Iv improved last 8 months. While there are some monies i can tap into, the idea is for it to b used to celebrate my recovery n fund retraining
I went paleo-keto, heroic doses vit c, pacing, sleep hygiene, basic suppliments, gentle stretch exercises.
I was horse riding 30min a wk n managed to handle a 5mile walk along the banks of clay reservoir bed due to the local drought last oct.
Xmas caused relapse nawty foods lapsed discipline etc
Im climbing back up again. I now eat salad, protein, nuts, dark choc n fruit. Sleep 1am to 9am, horse ride 30min/wk, walk to shop daily, sit in local park when warm, meditate, reduced my technology n thinking time, being in ‘real world’ more.
Im improving posture, realised my breathing is sub par (too fast) tongue posture also inhibiting airsupply.
As my posture improves n muscles finally learning to relax, iv had memories, emotions come back and even personality integration! Alongside an improvement in symptoms and negative thoughts.
Im doing CBT for my ACEs, not the me/cfs but they seem to b connected.
My guess is that cos i grew up depressed n scared, i developed an insecure hunch, grinded teeth, became self neglectful etc which caused constantly tense muscles, tense thoughts, bad adaption to stress, esp bullying at school n work
So that when the environmental factors that caused my depression ceased, i was still carrying the accumulation of baggage.
A strict paleo-keto diet got me better by 1/3rd functioning last oct.
Im now sensing that if i sort my baggage n posture etc out thatll be at least another 3rd from progress ive made last 2mnths
Forgot to add;
Fear of being bullied, fear of others, fear of future, fear of not coping has stopped me my whole life doing what i wanted to degree i stopped asking myself what i wanted n needed
It is this n lack of knowledge (solved as n when i could research over many years) that meant i kept my hope alive, but also stopped myself from trying 100% all-out
So i dabbled with diet thinking id done REALLY good for cutting out gluten n coffee n tea! Lols!
It took going keto for a few mnths to sort me out.
I resensitised my insulin response
I improved gut microbiome n leaky gut n candida issues.
Its a tough diet, but i couldnt even cook an omelette (thanx microwave)
I managed by living on stir-fry homemade from scratch, no fancy shop sauces or rice or noodles. All grains, all cow dairy n all forms of sugar had to go
Before last aug 2019, id been as scared to succeed as id been to fail.
I clda wasted 2 less years!
Diet n sleep gave me the stronger baseline to launch the rest of my recovery journey. I was previously too weak to relive my childhood stuff
PEM now affects me for a day-1wk typically. Im staying well within my energy envelope to reinvest every scrap into healing, life is life n unexpected things occur that trigger me still. Im tweaking n improving as i can while maintaining everything thats helped to date. Im day 4 of ANSrewire. And will b doing hypnotherapy program that has also had 80% success rate.
To me, this is an illness of stress be it physical mental or emotional n we have to eliminate all sources.
After a while, i realised all this research ive done has also been stressful (inc 2days) i seem to b addicted to using my brain too much xD
Ive been doing alexander technique to teach me correct RELAXED mindful posture 7mnths now n i feel so much better for it ?
Congratulations Kim! Thanks for sharing that. It sounds like you’re on the right track )
I became ill in 2009 (diagnosed in 2011) and the first three years were hell. I grieved what I’d lost, learned to pace and was doing really well – still restricted, but managing to live life a bit too.
In 2015 I became ill with Non Hodgkin’s Lymphoma and was treated with a chemotherapy regime including Rituximab (you may have heard of trials of this drug for ME CFS). The chemotherapy actually put my ME into remission for 9 months, but came back with a bang not long after the chemo ended. Back to pacing, back to doing well – and as a bonus, clear of cancer too!
Move to the end of 2017 to present, and I have been in the worse health ever!!! On average, I am now 70% bedbound, and if I’m lucky, I will have perhaps 3 days in a months where I feel somewhere like ‘well’ for me.
I feel as though I am stuck in a rut and don’t know where to turn. I have been simply too ill to even get to my GP to discuss this, and quite literally have now given up to be honest!! My next statement may seem dramatic, and although I am fed up of it all, I can honestly say I am not depressed. However, I am now wondering WHY did I even fight the cancer?? Perhaps I should have let things come to a natural end.
I know the cancer treatments which saved my life have also had a drastic impact on my overall health – I believe this is why I am now mostly bedbound and feeling ghastly. Had I realised how bad this would be, I would have refused treatment. It simply was not a fight worth undertaking. Yes, I survived – but there seems no end to the suffering.
I expect noone has the energy to read all the comments thus far but just in case…
After 10 years of illness and unemployment I feel I can’t ask people for anymore money for treatments. I also find I am neglecting other checks to save money for ME such as cancer checks. I have maintained a paleo type diet exercise and pacing but was on a nutritious diet before I got ME. I have officially had ME for 10yrs but think I have had it in some form or another since age 5.
I have taken loads of supplements. I found at most, they would increase my capacity by 10% initially but their helpfulness diminishes overtime. I am losing interest in supplements.
I am tired of practicioners now too.
I am tired of them suggesting a supplement that they happen to remember another patent saying was helpful earlier that day and honestly thinking that my time and money was well spent hearing that.
I found keeping on top of diet, SIBO and parasites very effective to keep my guts in perfect working order.
Sometimes glutathione has been effecfive. Ozone and other antibiotic and antiviral types agents for a mycoplasma infection very effective. Artesunate for a yeast infection in the blood very effecfive. Then removing heavy metals somewhat helpful. Tryptophan and GABA for sleep, anxiety and tension headaches. Most supplements generally unhelpful but sometimes a little bit helpful. Bodywork such as chiropractor a little bit helpful. Exercises with weights are a bit helpful. Mould and radiation removable has been unhelpful. After all that still I am unemployable and would be destitute without my husband whose my angel.