Does Anyone Really Get Better?

Discussion in 'Fibromyalgia Main Forum' started by cressida, May 29, 2006.

  1. cressida

    cressida New Member

    I've tried everything imaginable, from drugs to natural remedies and even though some drugs seems to help temporarily, I cannot tolerate the side effects. I also have a low tolerance to just about anything. I have spent thousands of dollars trying to alleviate this, and I am so worn out.

    It also doesn't help that my b/f of 10 years doesn't 'believe in it' so I don't get much emotional support. My supervisor at work also doesn't believe it, although he's had to accept the diagnosis and my part-time disability.

    I keep reading how things like more exercise are supposed to help and that people have been cured, but one walk around the block causes one week's worth of EXTRA pain and it's hard to get motivated on that.

    I have an appointment with my Psych. this aft, and so far he has prescribed me so many different drugs and I will once again get a prescription for something else, which will probably not work. He's starting to believe that I'm not giving anything a chance, but I am, and I'm just overwhelmed.

    I am so exasperated, and wonder what other people have done that has REALLY helped (for more than a week or so).

  2. bunnyfluff

    bunnyfluff Member

    and I have gotten worse again. So, hard for me to say. I think there are periods of great remissions. Maybe for some there are very long periods, or their bodies heal. I think it depends on what caused your problems, how much damage was done to begin with, etc.

    I was able to ride my bike for years, for example, sometimes for up to 10 miles, then suddenly- WHAM!, it caused me severe migraines and malaise and I would feel like vomiting for 2 days afterward if I went 1 mile.

    I gave up trying to figure it out. I just keep switching things up to treat whatever happens next- LOL!

    Best of health to you!
  3. usanagirl

    usanagirl New Member

    Since Oct 2005, I've faithfully been on an aggressive nutritional supplement program. I struggled with headaches in the beginning, but pushed through body desperately needed the detox. The alternative...medication, was not an option that I was willing to re-visit.

    If you believe you can get better, you will get better!

    Soft hugs,
  4. Marta608

    Marta608 Member

    .... but I can't stop trying.

    Sometimes I think I'd be better off if I could just find a way to accept it, then I read about someone taking something that's helping them and I get back to the health food store. It's a big cycle and I now have the equivelent of my own health food store in my cupboard and refrigerator. I do know I feel somehow better when I'm trying than when I've given up.

    Hang in there with me.


  5. diva42597

    diva42597 New Member

    I am one of the few who do not take prescription medications for the most part on here and I have improved imensely in the past three years. I take tylenol pm for sleep and tylenol extra strenth and use ben gay/icy hot patches for pain. If I'm in severe pain I use ultracet. For the most part, though the key is exercise. Now the problem is not keeping up with the exercise regimen, it's starting it. Because as you said one walk around the block is a week of additional pain. This is true. For the first week or two you ARE in agony, but after about a month of DAILY exercise you start feeling better than you have in years. Try it, but stop before you hurt yourself

    ANNXYZ New Member

    but it was one small step at a time. When I first becane ill , I was frequently confined to bed . It took me ten years to get an accurate diagnosis ( LYME!) .

    Even though I had lyme and did not know it , I did get over chronic EBV and do not have to stay in bed anymore .

    I am not a med professional, so I can only make personal observations , most based on what I have seen in others I personally know, and from the posts I have read here for a
    few years.

    YES PEOPLE DO IMPROVE! Often the process makes you feel much worse , because the underlying reason for many ( if not all ) is infections caused by pathogens . When you kill these off by taking supplements that fire up your immune system , you make interferon , which makes you feel MORE FLUEY or achey and fatigued . Second the pathogens die off in your bloodstream and add to the malaise . My belief is that most of us have to feel worse before getting better .

    I am on ABX for lyme . It has been hell, but somedays I think I see light at the end of the tunnel - a glimpse .

    BTW, if you have not had an IGENEX lyme test ( the best )
    please consider . MANY (!) of us here are finding our disease involves lyme , and NO pain med or supp will usually fix this w/o ABX . I have suffered ten years
    and I fear many others ( esp those w/ horrible pain )
    are also infected w/ lyme unknowingly .

    I would seriously consider getting tested for infections and starting there : CMV, EBV , lyme .

    The earlier comments about repairing the detox system and boosting immune function seem accurate to me . I firmly
    agree. But the price to wellness so far , has been feeling worse for a while. Most of the supplements that helped me initially made me feel instantly worse :
    chlorella , colostrum , Colloidal silver , samento ,
    etc ..

    Same with drugs . With ABX or antivirals , you have die off for at least a few weeks and feel worse .

    I doubt too many who improve here made progress w/o
    first feeling worse .

    Things I FREQUENTLY read about that seem to help w/ FM :
    VIT B 12 shots , magnesium , B complex vitamins ,
    fish oil or essential fatty acids, DEEP sleep ,
    effexor , guai ( for many ) .

    I wish you the best , just keep in mind that MANY people DO make REAL progress , even if they do not get totally cured .
  7. mollystwin

    mollystwin New Member

    I'm going to FFC in Detroit for one month and feel better already. I take a lot of supplements and eat only whole foods, no sugar or processed foods. I don't have anything complicated like Lyme though, so my dr thinks I'll be in remission soon.
  8. kholmes

    kholmes New Member

    Many people, like me, improve and then relapse because they tend to overdo when remission occurs. Some worsen.
    But many people do improve dramatically, and there is a tendency for those who get better to no longer spend time on this website.
    Also, please read my post on Stephen from the documentary film, I REMEMBER ME. If he can get his life back, I think there is hope for anybody.
  9. julieisfree05

    julieisfree05 New Member

    I had FM/CFIDS for 13 years, and last year my neurologist started me on Xyrem.

    Today my symptoms are virtually GONE!

    See my posts "Xyrem saved my life" for more information about it..

    - julie (is free!)

    Freedom is NOT free! - Unknown
  10. JewelRA

    JewelRA New Member

    I wish I could tell you something helpful, but i am in the same boat. It has been less than a year for me, and I, too, have spent thousands and tried so many different things. The only thing that helps me at all is treating the symptoms - i.e. pain pills, muscle relaxers, sleeping pills, heating pads, etc. And that is only temporary and partial, at best.

    I, too, am beyond EXHAUSTED with trying to figure out this DD and what will help. I want to give up so badly. But my children and dh don't let me. LOL.

    All I can tell you is, you are not alone, and keep putting one foot in front of the other. Keep trying. Keep praying. Don't give up.
  11. yagottalaff

    yagottalaff New Member

    From what I have read over the last 20 years living with CFIDS is that 1/3 of the patients get well, 1/3 improve somewhat, but are never truly well, and 1/3 do not improve at all. I have tried almost everthing natural and unnatural, and I am in the latter group. But I do keep trying, for better or worse.

    Sometimes I think I should adhere to the philosphy which appears on a button: "Now that I've give up hope I feel better." Meaning, accept your situation and be grateful for your life, however it is. "Hope" implies future tense; are we not happier living in the now?
  12. labrat

    labrat New Member

    I have had CFS since Jan 2003, had to quit work for about a year and a half and just rest, worked part time for a year, and have returned to full time work just last month.

    So far so good, the fatigue and brain fog have not returned like when I first got sick. I am much better than two or three years ago.

    What helped me the most was rest and reducing the medications I was taking for insomnia and depression/anxiety.

  13. ohmygoodness

    ohmygoodness New Member

    Boy when I am better (not perfect not pre fibro)it's great. When I am not it isn't. Tonight I am not, I hope to be again by the end of the summer as I plan to make this a "work on me" summer not a take some more masters classes etc. You have to embrace better and remember it and know that you can get it back sometimes. I am "OK when I am better and "fine" when I am really wants to know how I really feel, it's too depressing. Good luck.

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