Poll Have Your ME/CFS and/or FM symptoms gotten better or worse since you first became ill?

[Suella Postles]

My symptoms are much much better and often non-existent if I stay within my heart rte parameters and "energy-envelope". The pacing skills that I learned in Bruce Campbell's CFIDSSelfhelp.org The textbook and support that the class grouping gives each other have given me the self-understanding to improve the amount of activity I can undertake safely. I may never recover fully, but an extremely grateful to be able to live a life where I find it easy to experience joy and mentally generate contentment.
Suella

 

[Carrie Conley]

I dont know if mine has gotten better or if I have just learned to push through it and live with the pain. My bad days seem to be less, but then again is it because I have learned to live with it and push on or what. Its a mystery. lol

 

[Telula]

I seem to have had this for most if not all my life (runs in my family and the further down in generations the worse and more plentiful it gets). I had numerous infections as a child and all throughout childhood I had what doctors would label "growing pains" that were far worse than anything anyone in my school experienced during the same ages. Then insomnia as early as 8 or 9 hitting a peak at 11 along with many other symptoms. My illness pattern seems to follow: huge spike of worsening of symptoms then a more steady worsening for a bit then a plateau, rinse and repeat. Also I keep getting new or accompanying symptoms and/or diagnoses as the years go on such as TMJ, some sort of horrendous chronic pain similar (or is undiagnosed) RSD, etc.

 

[San Diego]

Holy crap. 76.8% worse. Thats discouraging.

In my case, I was made worse by:
1. lack of understanding by both doctors and me
2. misdiagnoses
3. ill-advised treatments
4. desire to "beat" ME by pushing, which was the single worst thing I did

I have to wonder, though, if the natural progression is a worsening over time, even if we pace like crazy.
Now, if you'll excuse me, I'm going to rush back to my chamber of denial.

 

[AnneVA]

I was diagnosed in Jan. 1991 by my PMD, an internist. I realize now how awesome that doctor was! In all the years since, I gained additional symptoms and lost functionality. I had a HUGE life, and gradually was forced to eject pieces of it with the goal of being able to continue working and support myself. I was being treated symptomatically, but overall kept feeling worse. I went to see Dr. David Bell because of his work on POTS, since that was my most troubling symptom. He described findings that about 5% of patients have a continuous downward path and that I appeared to be one of them. He said that he had had some successes with giving saline infusions daily, but that there were also extreme risks with sepsis. My own doctor was unwilling to take on those risks. I get an occasional infusion at an Urgent Care center when I feel my worst, and that helps enormously!!! For about 24 hours. Then I urinate all that fluid out. About 10 years ago, I was no longer able to work , even with flexible hours and an understanding employer. I'm convinced I won't have any spontaneous episodes of feeling better unless and until there is a new treatment or a <gasp> cure. My life is pretty tiny now, but at least I've accepted it.

my daughter (dx of EDS/POTS/NMH and meets criteria for CFS) is better since starting saline infusions 2 1/2 years ago. Multiple meds and herbs started a year prior helped somewhat but when the summer heat hit, they were not as effective. Then she did an iv trial for 2 weeks of saline 2x/week. Her improvement was dramatic. She now has a port and has been accessing it herself for over 2 years. No infection as she has a very sterile technique and refuses to let any health care professional touch it. The saline infusions are being tweaked and she is trying 1000ml every 5 to 7 days. She had been doing 1500ml 2 to 3x/wk. This new schedule may change with the summer heat. That said, she is not cured. She still needs to pace herself and stay hydrated. She still has flares. Still on meds to help her retain fluid and to raise her blood pressure. Going gluten and dairy free has helped a lot with gut issues.

The standard response from many POTS dr.'s is..... no port, PICC line.... too risky. But, that wall is starting to crumble and more dr.s are willing to order regular saline iv's thru infusion centers, home health, etc. It is a very, very viable alternative.

 

[San Diego]

my daughter (dx of EDS/POTS/NMH and meets criteria for CFS) is better since starting saline infusions 2 1/2 years ago. Multiple meds and herbs started a year prior helped somewhat but when the summer heat hit, they were not as effective. Then she did an iv trial for 2 weeks of saline 2x/week. Her improvement was dramatic. She now has a port and has been accessing it herself for over 2 years. No infection as she has a very sterile technique and refuses to let any health care professional touch it. The saline infusions are being tweaked and she is trying 1000ml every 5 to 7 days. She had been doing 1500ml 2 to 3x/wk. This new schedule may change with the summer heat. That said, she is not cured. She still needs to pace herself and stay hydrated. She still has flares. Still on meds to help her retain fluid and to raise her blood pressure. Going gluten and dairy free has helped a lot with gut issues.

The standard response from many POTS dr.'s is..... no port, PICC line.... too risky. But, that wall is starting to crumble and more dr.s are willing to order regular saline iv's thru infusion centers, home health, etc. It is a very, very viable alternative.

Hi Anne.

If you don't mind, I have a few questions.

1. Do you have any good reference articles that I can take to my doctor? I can't believe how difficult it is to get a doc to Rx saline. Clearly they don't comprehend the suffering or loss of viability.

2. Did your daughter start with home health, or an infusion center. Somehow I have a belief that an infusion center would have better sterile techniques.

3. What activities can your daughter do now that she couldn't do prior to saline?

4. Was insurance coverage an issue, or did POTS/dysautonomia diagnosis assure coverage.

Thanks so much!

 

[AnneVA]

Hi Anne.

If you don't mind, I have a few questions.

1. Do you have any good reference articles that I can take to my doctor? I can't believe how difficult it is to get a doc to Rx saline. Clearly they don't comprehend the suffering or loss of viability.

2. Did your daughter start with home health, or an infusion center. Somehow I have a belief that an infusion center would have better sterile techniques.

3. What activities can your daughter do now that she couldn't do prior to saline?

4. Was insurance coverage an issue, or did POTS/dysautonomia diagnosis assure coverage.

Thanks so much!

#1 In support of Saline therapy Vanderbilt has an autonomic clinic and they are doing research on this. Keep educating or move on to find someone who will help. There may be a risk of infection but without the saline, my girl would never have gotten any type of income stream. Risk vs. benefit. DR.'s need to see how incapacitating this is and that lying down thru life to avoid the possibility of an infection is a very tough choice to be forced into. They don't deny cancer patients ports, etc.

How to talk to your dr.

#2 Her POTS dr. ordered an at home saline trial using a home health nurse that came in and set up a peripheral IV line. She did that for 2 weeks, twice a week. The results were so positive that he then ordered a continuation. Because of the EDS dx, her veins would not be able to have multiple sticks every week so a port was placed and she learned to access it herself. When a nurse has tried to access the port (maybe 3 times?), she has been appalled at what she considers a poor sterile technique. She has a high standard. The last ER visit she had, the nurse gave her the gear and she accessed herself.

For a doctor that is skeptical, asking for a trial at an infusion center may help reassure them that it will be safe and at the same time, they will see the impact it has on you whether it's minimal or significant. 1x/week may not be enough. From our experience, a minimum of 2x/week would be a good trial.

#3 2 1/2 years ago, she was plodding thru her last year of high school (home school). Very symptomatic and doing most work lying down on days she could think. Exercise (EDS/joints) could take hours/day as she had to poke along and not push. After she started saline, she had the mental clarity and stamina to finish off her schoolwork. Exercise went more easily and she ended up joining a local gym to continue her PTherapist approved exercises. She started taking some evening art classes in town. She has been able to engage in life more. Last year she opened up her own art studio and gift shop in town but that was too stressful and closed it after 7 months, just prior to hip surgery. She has 3 part time income streams now. (1st was her art, then a pet sitting/house sitting job and now a vet tech job.) The most recent is her first real job as a vet tech at a local clinic. It is pushing her, though, and she is napping more. She is in the process of finding her limit.

#4 Insurance has not been a problem. She has dx codes on her saline prescription of EDS/POTS/NMH/Hypovolemia. That is the buzz word if you are talking to someone. Not dehydrated so much as hypovolemic.

 

[San Diego]

Awesome, @AnneVA. Great references that I will use with my (next) doctor. I really appreciate your in depth explanations! Glad to hear your daughter is doing so much better.

 

[TigerLilea]

I'm much worse today than I was 24 years ago. Menopause slammed my CFS really hard and I've never bounced back to where I was five years ago. I feel half dead most days now.

 

[TigerLilea]

What has worsened is my outlook. Despite all the research, I've resigned myself to a life no longer lived, but merely endured. I guess that's a step toward acceptance, which is important. I still fight and try different approaches, but no longer expect a miracle.

After having CFS now for 24 years, I have also resigned myself to this being my life, if you can call this a life. Some days it feels like existing.

 

[Julie G]

got ill at 15. I could have a normal life by then but would just feel abnormally exhausted at the end of the day. It has worsened very graduately sine then. Now I'm 29 and can barely work an hour a day

Cinta, I'm so very sorry to read you have this at such a young age. I was fortunate to have 35 years of normal activity. Thank goodness we have the Internet now. We're not as isolated as we could be. And information is easily available even if progress toward effective and reliable treatments is slow. I hope you have a strong and supportive family.

 

[Julie G]

My answer of "somewhat worse" is based on my medication regimen. I am grateful for my doc. He has provided meds to reduce my pain significantly over the last ten years. However, tolerance happens. Meds are only one part of my plan to increase optimal health. Diet....absolutely necessary. Exercise......absolutely necessary. My therapist.....cannot live without her. As a 51 year old wife, mother and woman, keeping my balance and not deviating off "the plan".....has become the biggest and most exhausting job for me. I will not give up. I am blessed with a loving family. I have health insurance. I have a great team of doc's. I have read many many stories of women who do not have support and it saddens me. Fibro was certainly not in my plan. It changed what I thought my future was going to be but I cannot let it define the rest of my life. Yes I have been mad and sad and felt defeated. Pain is exhausting. It is my emotional well being that I can be in control of. It is what saves me. I am sorry for everyone suffering. I pray everyday. There is power in prayer. I am not one to ever post and likely will continue to just read after this but please take a little comfort in knowing somebody out there is praying for all of you. Thank you for this site full of promising changes. Be well all.

Hi, Missy, My faith is also what keeps me going. It's a long story, but in my smaller life, I have more time to pray and--thanks to the internet--reach out to people. I'm really grateful for the Internet. I'm in a national support group for Physically Challenged Christians called the Physically Challenged/Overcomers Ministry. It's on Facebook. Anyone seeking faith-based support is welcome to visit the website anytime. There's a lot of Scripture and other resources for dealing with chronic, debilitating, and terminal illness. That's how I found out about this great website. I'm really grateful for these updates in research and the comments and feedback from other people with this illness specifically.Thanks for sharing.

 

[Hari]

Starting 2000, the symptoms gradually became worst until 2009, I did completely lost my ability to work.
After I started aggressive natural dietary supplement program, my symptoms started to alleviate gradually. By the end of 2014 I had no pains. Now dealing with CFS, exercise intolerance combined with PEM (post exertion malaise).

I must say symptoms became much better or even non existent most of the days. They appear after a over exertion physically or emotionally.

 

[dee]

mine changed. sometimes exertion has NOTHING to do with it now! I can relax OR some little movement or excitement, either way I PAY! however its GUARENTEED AGONY if I do anything that gets my heart pumping! its sort of knowing this HORRIBLE illness will always be with me! PLEASE GOD NO!!!

I think its now attacked my brain worse though and noticed if I sneeze or someone upsets me, my MEMORY goes!!! heads always living in a strange bubble/encasement. :>(

 

[November Girl]

Over the past 40 years, I have had every possible symptom on the ICC or CCC lists. I may have been at one extreme such as unable to sleep, then at another point I was sleeping all the time. I was at my worst during the 1990's with improvement at a snail's pace beginning around 2000.
I switched seizure meds to Lamotrogine/lamictal about 8 years ago, which improved pain levels and neurological functions immensely. Four years ago, I began seeing Dr. Rey at NOVA. I have improved at a more rapid pace since then, but am not healthy enough for even part time work.

 

[Reen]

I was an extreme fibro case as per my rheumatologist.
I also have CHRONIC MYOFASCIAL PAIN. (CMP) I was bed ridden for just over one year when newly diagnosed.
I am better now- which I truly never ever thought would happen.
(From bed ridden to using a wheel chair, progressed to a cane. I no longer use those.)
I am more active over this past year and a half than I've been since I had to quit my job in 1999.
I can participate in life again!
I am by no means cured, healed , or "normal" but am extremely happy to be more functional. I do feel at this time I am re gaining my life.

 

[Cort]

I was an extreme fibro case as per my rheumatologist.
I also have CHRONIC MYOFASCIAL PAIN. (CMP) I was bed ridden for just over one year when newly diagnosed.
I am better now- which I truly never ever thought would happen.
(From bed ridden to using a wheel chair, progressed to a cane. I no longer use those.)
I am more active over this past year and a half than I've been since I had to quit my job in 1999.
I can participate in life again!
I am by no means cured, healed , or "normal" but am extremely happy to be more functional. I do feel at this time I am re gaining my life.

Congratulations Reen...Can you say what made the difference for you?

 

[Snow Leopard]

Worse - including new symptoms - constant eye pain, deterioration of eye sight etc. (to clarify, I've had ME since my youth, and had excellent vision for many years, but my eyes started declining at the age of 30)

 

[Cort]

Worse - including new symptoms - constant eye pain, deterioration of eye sight etc. (to clarify, I've had ME since my youth, and had excellent vision for many years, but my eyes started declining at the age of 30)

Ouch...Nothing they can tie that too? Dry eyes (Sjogren's?)

Only a biopsy can definitively diagnose Sjogren's by the way. Lauren Stiles had every test done - they were all negative - but her biopsy showed that she had it and then IVIG helped her.

 

[Snow Leopard]

Ouch...Nothing they can tie that too? Dry eyes (Sjogren's?)

Only a biopsy can definitively diagnose Sjogren's by the way. Lauren Stiles had every test done - they were all negative - but her biopsy showed that she had it and then IVIG helped her.

I am thinking something else... But still along the lines of autoimmune illness - also given that my rapid onset matched that of an acute autoimmune syndrome like GBS (triggered by vaccination - severe lower limb weakness, difficulty swallowing etc - I've never had any of the common infectious triggers such as EBV, CMV, RRV, Q Fever etc). Not strictly Myasthenia Gravis either, but perhaps related?

I had an unusually prolonged adverse effect (3 weeks - supposed to wear off after 1 day) of the eye drops used to dilate the eyes for imaging - muscarinic receptor antagonists.

I remember the Scheibenbogen study.
http://www.ncbi.nlm.nih.gov/pubmed/26399744
M3 muscarinic receptors play a key role in Ciliary muscle contraction (lots of studies implicating the muscarnic receptors...)
https://en.wikipedia.org/wiki/Ciliary_muscle

I wonder?