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

Have your ME/CFS and/or FM Symptoms Gotten Better or Worse Since You First Became Ill?

  • Much better

    Votes: 3 3.7%
  • Moderately better

    Votes: 7 8.5%
  • Somewhat better

    Votes: 6 7.3%
  • No change

    Votes: 1 1.2%
  • Somewhat worse

    Votes: 6 7.3%
  • Moderately worse

    Votes: 12 14.6%
  • Much worse

    Votes: 47 57.3%

  • Total voters
    82

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Put aside anything else going on - including aging (lol) if you can - aside. Also discount how badly or well you feel now. If you were in really in bad shape when you first got ill you might say your symptoms are a lot better even if you're still feeling lousy.

The question is -in relation to that baseline when you first got ill - how are your ME/CFS and/or FM symptoms doing now?
 

Janet C

New Member
I feel fortunate: thanks to careful work at pacing and low-dose naltrexone, I am back to about 40-50% of pre-illness function. Definitely better than the 20-30-% I struggled at for years.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I feel fortunate: thanks to careful work at pacing and low-dose naltrexone, I am back to about 40-50% of pre-illness function. Definitely better than the 20-30-% I struggled at for years.
How effective was LDN for you? Did it work right away and how low did you start?
 

dee

Active Member
i tried LDN and it worked overnight, however, 2 months later it stopped working just as soon as it started! i was feeling so good i thought it would be our CURE but when it stopped working, i'm at square one again and i FEEL AWFUL again!!!
will there ever be ANY hope for us?
 

mary avery

New Member
I have had periods of health that lasted for very long times in the beginning, like close to a year! Over the years those remissions have gotten shorter and shorter, until now maybe I get a week two or three times a year, but my body is too weak to enjoy it anymore.A trip to PT (soaking and moving in warm water and tens unit) puts me down for two days twice a week. I shop for food on the way home because I won't be able to get there otherwise. I rely on help from family for housekeeping mostly. My life is pretty minimal. I sent my doc a study for LDN, hoping for some relief, but he said he wouldn't take it seriously without a peer review. Pretty sure that's what I sent him. Docs in Wa state are not much help in my experience. Haven't gotten diagnosed for ME, but I'm sure that's what it is- since 1989.
 

Joy S

New Member
How effective was LDN for you? Did it work right away and how low did you start?
LDN has saved me as well. Janet pretty much summarizes where I'm at regarding pacing and functionality. I started at 3.0 and am now at 9.0 (4.5 twice daily). I've been on it for over 6 yrs. It started working immediately for me & I've never had any negative side-effects.
Joy
 

Pacie

New Member
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.
 

Katie

Active Member
Over the years (15) I have slowly (sometimes rapidly) gotten worse. The past five years have been pretty bad but I'm levelling out again but that just means I'm back to 30% of my normal health.
I've tried LDN and low dose methadone and both times I was extremely sick for weeks. My doctor thought I had a long drawn out flu as he had never seen anyone react so much from such a low dose of medication. But the nausea and vomiting happened with both meds and for as long as I was on them. Unfortunately (or fortunately?) they took all the pain away, wow I felt great when I wasn't hanging my head over the toilet! My sensitivities to all medication has increased. Cymbalta has worked best for my pain even though I felt nauseated for a few weeks when I started, pushed myself through as I had no vomiting with cymbalta. I'm only on 30 mg as 60 mg does make me quite ill.
I've tried everything under the sun over the years, meds, alternative meds and therapies. Cymbalta is my friend but after a couple years (or less) meds don't seem to work as well, then what? Well I'll worry about that then, if it happens.
 

Cintia

New Member
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
 
Put aside anything else going on - including aging (lol) if you can - aside. Also discount how badly or well you feel now. If you were in really in bad shape when you first got ill you might say your symptoms are a lot better even if you're still feeling lousy.

The question is -in relation to that baseline when you first got ill - how are your ME/CFS and/or FM symptoms doing now?
When I first got ill, 6 1/2 years ago, I had a bad flu like onset that lasted a few days. After that I got better but never felt well again as I had before getting sick. Now I feel sick most of the time, especially if I push myself to do anything extra. I became ill at age 56 and now I am 63. At 56 I was in pretty good shape and exercised regularly. Since then I have gained 28 lbs, can't exercise other than walk short distances on level ground. I have had to curtail my travel and other social activities. Even going to the grocery store wipes me out. I am an extrovert living an introvert's life. I've gotten used to it, but its a tremendous loss. My 63-4 year old classmates are out skiing and golfing while I am lying on the couch - this is not "normal aging". I try to pace myself but I guess I would rather try to do things I want to do, like travel and feel sick, than not do anything but feel a little better.
 

Julie

Member
Put aside anything else going on - including aging (lol) if you can - aside. Also discount how badly or well you feel now. If you were in really in bad shape when you first got ill you might say your symptoms are a lot better even if you're still feeling lousy.

The question is -in relation to that baseline when you first got ill - how are your ME/CFS and/or FM symptoms doing now?
Not a fair question. In some ways I am better but some ways worse.
 

Janet C

New Member
How effective was LDN for you? Did it work right away and how low did you start?
I started in May 2014, at 1.5 mg - no effect, good or bad. After 3 weeks, went up to 3 mg - again, no effect. After 3 weeks, went up to 4.5 mg and felt maybe an occasional glimmer of improvement. After 3 weeks, I went up to 6, and bingo! much better energy, consistently for none months now. Not a cure, but a really helpful treatment: on a good day, I feel like 50% of my old self. I still have some lower energy days, and occasional crashes, but not nearly as low or as long as before. Very pleased.
 

Linda B

Active Member
After reading this I need to go to the recovery stories section to balance out the depressive feeling now coming over me. Like one of the responders, my daughter became ill at 13, that was six years ago. She had an extreme flu/virus which laid her in bed for weeks shivering under blankets in 30degrees Fahrenheit (that's hot) and she functions at a very simple level even now. So you could say she is 'better' now that at onset but I am despondent about her future. Sigh! But hang in there...that's all you can do! Getting well seems harder than winning the lottery!
 

Katherine

New Member
After being formally diagnosed 4/14 at Neuro Immune Institute in Miami, I am now back to 40% of healthy me. I started seeing real improvement at 4 mos and and have continued to improve. My brain is making more progress than the bod; I want to do more than I have in years but PEM/ POTS is restricting me, but I can do more than I've been able to do in 5 years. Pacing was non issue when I was bedridden, now I forget to stop before I hit the wall and pay the price.
Started with 3mg LDN, now up to 9mg in the am, Famciclovir 250mg 2x a day, Fludrocortisone, and many supplements, including Inosine, potassium, methyl B12, methyl folate, Liposomal Gultathione and lots of electrolytes. I also follow a low carb diet and maintain a healthy gut.
I am able to get dressed for the office and work for 2-3 hours a day, definitely improving.
 

fdotx

Well-Known Member
I am definitely on a downward trend and it seems to have become noticible about a year and a half ago around age 60. Lately I feel as if my overall functioning is down to 20 although I can still get energy spurts and feel very well. Janet and Katherine, you're the first I've known of anyone going over 4.5 of LDN. I've been on it about 18 months at various dosages. It's never done a thing for my fatigue but it might be having a slight effect on the achiness from the fibro. I still get the days where I feel like I'm sick with the flu which is different from feeling well but being achy. Not really a game changer for me though - maybe I'll up the dose....
 

LondonPots

Active Member
I think my condition is the same - what's changed is how I manage it. If I ate and behaved in the same way as when I started, I would undoubtedly return to the same old severity of symptoms. I know this because whenever I have to step out of my fairly rigid self-care at all, I do relapse to some extent. I am probably far less inflamed and dehydrated now than I was then, though, which helps, and I manage my Reactive Hypoglycemia and Histamine Intolerance better. I'm still functioning at a pretty low level, all the same.
 

San Diego

Well-Known Member
You could say I'm better, but it's only because of extreme pacing. One false move and I'm right back to bed bound and seriously ill. I now make it to my sofa most days, but do nothing except self-care.

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.
 

San Diego

Well-Known Member
Started with 3mg LDN, now up to 9mg in the am, Famciclovir 250mg 2x a day, Fludrocortisone, and many supplements, including Inosine, potassium, methyl B12, methyl folate, Liposomal Gultathione and lots of electrolytes. I also follow a low carb diet and maintain a healthy gut.
May I ask what prompted the increase in your LDN dose? I have been on 4.5 for over a year and don't notice any benefit.
 

Missy

New Member
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.
 

Missy

New Member
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.
 

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