Why do I feel so WONDERFUL? Seriously, WTH

Discussion in 'Fibromyalgia Main Forum' started by romanshopper, Jul 8, 2009.

  1. romanshopper

    romanshopper New Member

    I have been dx. with fibro for a long time. I also have severe nerve damage in one foot extremely bad. Surgery could not fix it.

    I do not work but am not on disability - my husband works and we make do, I just never wanted to file. I'd say in the past several years I have maybe 2 good days a week but I've never been symptom free. I take pain pills - ultram mainly, but have lyrica I take at times when it is really bad. Sometimes, no matter what, I just can't walk. My feet KILL me, esp. the 'bad' one.

    Ok, so here's the deal. I've never been one to be allergic to much - Crocs, strangely enough. Some types of adhesives.

    Ok, earlier this month, I had a severe allergic reaction to........something. We don't know what but I broke out in huge painful hives. Went to hospital, they gave me a steroid shot and a steroid pack.

    Next day, hives were going down - but fibro WAS GONE.

    2 weeks later - broke out in hives again, even worse. Back to doc, another steriod shot, another steroid pack.

    I have not had one symptom of fibro ALL MONTH long.

    So just - wth?
    I didn't think that steriods HELPED fibro, but man I feel great. My stupid FOOT doesn't even hurt. Of course after getting the hives really bad, I discovered that a lot of my foot pain in the past has maybe been allergy related?? I have noticed at times when I could not walk that I'd have hard, red painful sometimes itchy spots on my feet and they'd be swollen. I could never show the doc because then they'd be gone when I got there to the doctor. That happened with these hives but for the first time (because it happened so extremely on my palms and soles) I can see that these red spots - ARE hives on my feet!

    Any ideas? I figured out LONG ago that no one but me is going to ever try to figure this stuff out no matter how much I pay them.
  2. isiselixir

    isiselixir New Member

    it's gotta be the steroids!
  3. romanshopper

    romanshopper New Member

    well... I KNOW - it has to be - but WHY?
    They are not supposed to help fibro!
    It isn't supposed to be an 'inflammatory' disease!

    It's so weird - it makes me wonder if I've been misdiagnosed!
    I know I don't have rhumatoid. I was checked for that.
  4. gapsych

    gapsych New Member

    This is what my rheumy told me when my symptoms disappeared for a week after a steroid shot for bursitis of the hip, the only time I have received cortisol.

    I told my doctor and she said that while FM is not an inflammatory disease, cortisol it does seem to help. However, when I asked if it should be taken on a regular basis she said the risks outweigh the benefits especially if you have an allergic reaction in the future and it can damage your adrenal glands as it makes them stop producing cortisol if you are not deficient. You end up in worse shape in the long run.

    I asked her why this helped and she said they do not really know. It could be an indetectable amount of inflammation.t But it is a known fact that this happens. I also have had the tests and no descernable inflammation in my body.

    Some people also experience the same thing with antibiotics which can also reduce inflammation.

    I don't think you have been misdiagnosed unless some other blood tests do show inflammation. But I am not a doctor.

    Confused? So am I, LOL!!


    I guess i
  5. romanshopper

    romanshopper New Member

    I've got an appt. with an allergist/immunologist. I hope he can help.

    I'm thinking....I've got some hidden allergy or auto-immune stuff going on that is just now getting so bad as to jump out and bite me.

    See, I've had such painful red hard spots on my feet before - they'd say it was the nerves or the swelling - and it was swelling - but just recently discovered that taking a zyrtec made them go away - so that has to be allergy related!

    Well, as far as I am concerned if they don't want to give them to me every day, they can give me one a couple or few times a year so I can enjoy my life a bit more. Right? I mean, come ON!
  6. PVLady

    PVLady New Member

    I went through years of hives and can give you a couple of hints that may help. When they break out try a Alka Seltzer. Secondly, Claritin is excellent for hives.

    The Alka Seltzer was suggested by a allergy specialist and it does help but Claritin is excellent. When I tried Benadryl it made the hives worse.
  7. AuntTammie

    AuntTammie New Member

    Interesting to know about the alka seltzer....as to the other things, I have had the opposite reaction....I take generic claritin regularly for allergies, but it doesn't help my hives....benedryl works great when I have hives....don't like the sleepy/lightheaded side effect, though, so maybe next time I will try alka seltzer

    I wonder if you are allergic to one of the additives in bendryl (like the coloring or stabilizers)....or you could actually be allergic to the main ingredient - my mom is.....anyway I would bet that an allergy to something in there is why it makes your hives worse
  8. lonna1

    lonna1 New Member

    Similar situation here. Have been diagnosed with F/M, RA and C/F. Went to the doctor about 5 weeks ago because I could not handle the pain anymore. He put me on Prednisone which has steroid in it. Now I feel FANTASTIC. The pain is gone. I can do every thing that I could do about 15 years ago. He thinks that I have osteo-arthritis in all of my joints and are(were)inflamed. I am 75 years old and feel WONDERFUL.
  9. Debra49659

    Debra49659 New Member

    Romanshopper, one of the first things my doctor did was give me a weeks worth of steroids. Apparently there is a condition that can mimic many fibro symptoms. I wish I could remember what it was called...

    I had no reaction to the steroids which meant that I did not have whatever it was that he was checking for...I what to say it was a arthritic condition but I am just not sure.

    I hope that you can continue to take a low dose treatment. I'm so jealous:)

  10. mysticbrit

    mysticbrit New Member

    Each time I've been put on prednisone (sp?) my pain has all but disappeared. This shouldn't happen with FM. I've told every doctor I've ever seen that this happens and they assured me that I was WRONG. It was just a coincidence.

    Some day the medical professionals with figure out exactly what FM really is and then perhaps we'll get some answers. In the meantime just enjoy the pain-free moments.

  11. Jayna

    Jayna New Member

    Within a couple of days of going on it (twice, several years apart) I felt amazing! I could walk more, eat better, was pain free, focussed.... got a lot done and felt almost completely fibro-free as I tapered up and tapered down over several months. It gave me a window to get caught up on a lot of life adjustments.

    Unfortunately, it made my CFS worse. The relapse after coming off was long and hard, and probably contributed to my current liver issues.
  12. Empower

    Empower New Member

    Its the steroids
  13. richvank

    richvank New Member

    Hi, all.

    As I mentioned a while back, Dr. David Gregg has suggested that fibro is caused by a herpes family virus in the brain/nervous system. The viruses cannot be attacked by the immune system in the neurons, which is why herpes simplex and herpes zoster (varicella zoster) viruses hang out there. Dr. Gregg suggests that the pain occurs because the viruses propagate and come out of the axons of the neurons. Then the immune system detects them and attacks them. The resulting inflammation produces the pain.

    Your observation that steroids decrease the symptoms would be consistent with this hypothesis, because elevated steroids suppress the immune system and hence, suppress inflammation.

    I would still be interested to hear from more people who have tried L-lysine for fibro. Dr. Gregg suggests a dosage of 6 grams per day for as long as symptoms last. Raising the ratio of lysine to arginine in the body is known to suppress at least some types of herpes family viruses.

    Best regards,

  14. Empower

    Empower New Member

    Very interesting

    My husband takes L Lysine for cold sores - maybe I got from him
  15. Mikie

    Mikie Moderator

    First, no one really knows for sure just what FMS is and what causes it. It could have multiple causes or there could be subsets of patients, with different manifestations of FMS. Some may be helped by steroids, even though FMS is not thought to be an inflammatory illness. Many of us feel better when we take OTC NSAIDS, which reduce inflammation.

    Most people do have a degree of inflammation in their bodies. For us, any inflammation my be just enough to tip us into a flare as our bodies are struggling with the other symptoms of our illness.

    I am awaiting surgery on my knee, probably for a torn meniscus, on the 21st. In the meantime, the doc gave me a cortisone shot in the knee to reduce the inflammation. It will help with the surgery and make me more comfortable until then. Even though there isn't much of the steroid in the shot, and it tends to stay in the joint and not go systemic, I have felt better since the injection. My knee is still very, very painful, so it can't be because of reduction of pain. It must be the reduction of inflammation in the joint. Reduction of inflammation should help with the pain but because I work on my feet and have a little bathroom redo project I'm working on, I don't think the poor knee has a chance until it is fixed. Actually, I guess it does feel a bit less painful. We tend to forget pain once it is eased.

    I'm not a big fan of steroids but they have helped me with costo chondritis and with a neuroma in my foot.

    In any case, I'm glad you feel better.

    Love, Mikie
  16. Debra49659

    Debra49659 New Member

    It is concerning the disorder that I mentioned in an above post.


    I was tested for this even though I did not fit in the age group...it does explain why some people may experience a huge relief of symptoms.

  17. leslie1104

    leslie1104 New Member

    My doctor and I are now in the process of trying to find out if I have Fibromyalgia. She's taken me off of Celebrex and Cymbalta and she has started me on Prednisone. She has done this in order to rule out PMR - which is Poly Myalgia Rheumatica (?sp). She said if that is what it is, I would feel better automatically. Hope this info. helps you out. By the way, I don't feel better and will probably call her back tomorrow.

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