Does Fibro keep getting worse over time?

Discussion in 'Fibromyalgia Main Forum' started by IgotYou, Aug 4, 2003.

  1. IgotYou

    IgotYou New Member

    I just got on here recently and I must say you guys are the best source of information I've found. But I'm also noticing that I'm not dealing with as severe of symptoms as some of you are. I have, however, noticed a slow progression to more severity through the ups and downs and am wondering if it just continually gets worse or if it levels off at some point. I know some people get better, but are they few and far between? What's awaiting in the REAL world? I'm a fighter, so will that increase my odds of getting better or at least not getting worse?
  2. Kathryn

    Kathryn New Member

    but I find that I will have periods of near "normal" health, interspersed by periods of moderate to intense discomfort. We are all affected differently, so it is quite possible that you are in the midst of a flare. With luck, and rest, you should be able to get through this and again experience an easing of your symptoms. You need to learn to space yourself and in time you will learn what you are able to do without putting yourself at risk. Good luck!
    Kate
  3. ozgran

    ozgran New Member

    I can't answer your question with any degree of knowledge. All I can say is that I make myself worse overdoing it. Am just coming out of a flare after overdoing things and those things were simple activities which would never have affected me once. I am still learning what level I should push myself to. Becomes very frustrating at times. Love Ozgran
  4. marcus1243

    marcus1243 New Member

    But in my case, I would say that it's changed rather than progressed. I (normally) have a lot less pain than I used to (I think the brain ignores some of it after a while) and the dizziness and neurological symptoms are somewhat reduced too. But I have a lot more fatigue/weariness than I used to, and a lot less muscle endurance. It does seem that there is a long-term toll on your body. That said, I'm still clinging to the hope that none of the damage is irreversible and that a remission might still be possible.
    Best wishes,
    marcus
  5. shoshi68

    shoshi68 New Member

    I feel better after i get through the flare, but i think that i feel better compared to the ick of a flare. Saw my DR, she said that it's about coping and learning how to live with this. I guess better is very personal to each situation.

    edited for spelling& grammar- the fog...[This Message was Edited on 08/05/2003]
  6. donna13210

    donna13210 Member

    .....over the years. And I thought I was feeling bad 5 or 7 years ago! Hah! If I only knew then, what I know now.

    Is the FMS progressing or do I feel worse because of inactivity, muscle atrophy and weight gain? Hard to say. Maybe a combination of both. Did I fall and sprain my foot badly a few months ago because of the Fibro or because my muscles are getting weaker by the day? Don't know for sure.

    The only advice I can give is to KEEP MOVING. If you can
    exercise at all, please keep doing it! The more stiff I become, the less I move. What's in the future? A cane? A walker?

    I was planning a trip to the museum in Wash DC and found myself wondering if I could a reserve a WHEELCHAIR because I knew my legs and back couldn't handle all that walking. My god, a WHEELCHAIR?? I felt like crying. So I just didn't go on the trip.

    Do you have a good Fibro doctor? You can get a list on this website or post a message asking for one in your area.

    Don't mean to be condenscending (sp?) just trying to help. I TRULY hope you don't continue to get worse. I wouldn't wish that on anyone.

    Take care!


  7. pam_d

    pam_d New Member

    ...and I'm definitely speaking only for myself here, based on my own experience & from the research I've done, but I believe that fibro gets worse & better based upon how much you can reduce the underlying factors (Dr. Devon Starlanyl calls them "perpetuating factors") that aggravate fibro for you. And those factors can be different in different people. I have had fibro for 4 years. Just found out this year I had food allergies/"leaky gut" syndrome----once I started to treat those issues, my fibro symptoms started to get better. My fibro isn't gone, definitely not, but it bothers me a lot less these days. For other people here, they find out they had a hidden thyroid problem not showing up on standard testing that, once treated, helps them feel better----doesn't take fibro away, doesn't cure it, but helps the symptoms feel better. And there are a host of other underlying issues folks here have learned about that they started to suspect made their fibro worse----the hard part is finding out what aggravates your particular "brand" of fibro (because we are all different in how it affects us, despite similarities), and what steps can be taken to feel better. THIS BOARD IS GREAT FOR THAT!! I first learned about "leaky gut" syndrome here, started researching it, went to a local allergist who knew about it & about food issues, got tested, and now, several months later, I'm doing better. I give a lot of credit to board members here who helped educate me, & to my great allergist who figured out what was wrong. So---I'm glad you are here, because you'll learn tons of great information, and you'll learn to consider lots of possibilities & options in how to live with this diagnosis better. Continue to be a fighter, AND a detective! I think we all have to be with this!

    Welcome Hugs,
    Pam
  8. Dadto3

    Dadto3 New Member

    All the doctors I have ck with say it doesn't get worse but then again I am still waiting for remission or maybe right now is remission for me. The only thing I can say is that i do agree with the person who said maybe it is a degree of overdoing it that is pushing you. I personally can understand that one because I still try to do everything like I used to. I was actually diagnosed in Jan 02 but mine I believe is hereditary and they are just now figuring it out. I had juvenile arthritis and then bursitis as a teen then I ended up with alot of pain and even swelling in my hands but not until I started having numb sensations and restless leg syndrom did they actually figure it out.
  9. MarieTourond

    MarieTourond New Member

    she did not think so.......But I find that I don't have even about one third of what I read on here. Am not bragging or anything, but was wondering is there are different stages of FM????? Cuz the only parts that hurt, when they do is my shoulders, where I feel like someone about 500lbs are standing on my shoulders and I go very weak, have chest pains, head spins and cannot go on, have to sit and rest for about half hour. That is the only symptom that I think I have unless you call the cracking of my right jaw a form of it too.
    Maybe there is mild, medium and strong stages of this DD. Don't know. Just a thought.
    I don't take and meds like mentioned in a lot of the posts as cannot afford to. Found that I can over come some of the tiredness, another symptom of course, by listening to music and dancing around the house, I guess it is mind over matter.......it is the only way I can do it cause of not taking meds for FM, for osteoporosis arthritis yes.
    Oh yes sure do have the foggy brain though.
    Lee:)

    [This Message was Edited on 08/07/2003]
  10. Myth

    Myth New Member

    Yes. For me it has been a slow but obvious progreession for the worst. year by year I find i can do less, think less and work less. I have points where I am worse than normal- call them flares I suppose. But you begin to realize normal is a lot worse than normal was a few years back and those times when it is bad get real bad. If FMS is to be classified as an autoimmune disorder then, yes, it is progressive as they all are. Maybe this is just the case with me, perhaps I have not leveled off (if that is so I sure hope I do soon). I have heard of people going into remission, but never met one and certainly have not come close myself. I don't even know what 'pain free' means anymore but I have learned what 'debilitating pain' means. I can say this though, some people seem to level off and some peoples symptoms never get severe- I am not sure why( perhaps their treatment, or enviroment or something). As for myself and my dad we are getting worse. My decline was slow and I coped with the new symptoms before other ones cropped up, and leanred to manage each new level of pain and fatigue as best as I can. My dad got FMS later and his decline was faster- he has rather caught up to me in symptoms and severity of symptoms. I have had FMS symptoms since I was a kid, my dad's seems to have been triggered by an illness when he was in his thirties. Some symptoms are rare and only a small precentage of us ever get them, some are almost madtatory. There seems to be many patterns, it is hard to say what is typical.
    Myth
  11. Mikie

    Mikie Moderator

    Some get better, some get worse, and some level out. People who get better are usually more optimistic and are using different types of treatments which are helping them.

    My FMS is so much better from the Guai treatment, but the CFIDS has kind of leveled out. I am working hard on the CFIDS so I can return to work.

    Love, Mikie
  12. IgotYou

    IgotYou New Member

    I appreciate the feedback. I'm definitely more motivated to push past the pain and keep exercising and searching for ways to reduce whatever is irritating my system. I don't want to get worse - this is bad enough! There's a comfort in knowledge, and I think that having answers reduces the stress that aggravates the disease. Anyway, being able to hear from all of you makes me feel so much better inside - not so weird and alone and scared. You've given me back that feeling that I'm normal. Thank you!
  13. deenapooh

    deenapooh New Member

    When my doctor walked in the first time she asked my age, 26, (now 27) and said oh FM will go away in 10 years, she said this very matter of factly like she was an expert, before even examining me.
  14. toots2

    toots2 New Member

    Not for me although I do have some very bad days. Actually, since I retired I think I have more better days than others. I am saying this now but watch, I'll have a big flare and feel horrible. I think what works for me is pacing myself. I do not overdo at all, and I have a wonderful, loving husband that helps me constantly. My children are grown but I do have grandchildren that we are with a lot. I realize now because of the myofascial pain syndrome, I cannot exercise without feeling pain. I kept wondering whyI could not exercise like other people but after reading about trigger points and myofascial pain, I now understand. I still have many responsibilities as I take care of my father and other elderly relatives too but I think life is much better than when I was first dx. probably due to pain meds too and doing very little physical exertion. Toots
  15. libra55

    libra55 New Member

    Overall I feel my fibro has become worse over time. The main factor is that I have gained quite a lot of weight because of the fibro. I am probably about 100 pounds overweight. It is a vicious cycle. The more inactive I am, the heavier I become and the weaker my muscles get. The heavier I am the less I want to move. I really feel for the people who said they had to get wheelchairs to go to Six Flags and the Washington Museums because quite frankly I would probably have to get one too. I have taken my kids to the water parks and Six Flags, and I am so exhausted afterwards I crash for days. I asked the rheumy if it was this bad because of my weight and he said it was an exacerbating factor but I would probably still have the fibro even if I was skinny, I just wouldn't suffer so much with it.

    Good wishes to you,
    Michelle