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Thread: Fibromyalgia

  1. #21
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    I'm one of the very few people properly diagnosed (or as properly as you can be seems as how it is by a process of elimination of everything else) with Fibro by the rheumatologist consultant, who managed to get rid of it. Haven't been bothered by Fibro for about 4 years now. In my case it started with the physical stress and insomnia caused by undiagnosed severe anemia on an already compromised heart and circulatory system. In amongst a load of long term diabetic complications. Although exahusted couldn't sleep for more than an hour without waking abruptly out of a dream. Sems this is a symptom of anemia. This had went on for months before I went to the GP about it. My fault entirely.

    The burning and electric shock pain of Fibro is the same as that experienced by diabetic with painful neuropathy. So was very familiar with it and understood how it worked, so it didn't worry me about something simister or dubious going on.if you know what I mean. . Just as well as I'm not allowed any of the drugs used for it eg Amitrypt or Preg or Duloxetine. etc!

    Think anyone experiencing nerve pain for the first time must get a real fright. At one point the slightest stress used to set my arms and legs instantly on fire, and I was very easily stressed at that point as I hadn't slept properly for months. The muscle stiffness was severe, and exhausion was bad, albeit the anemia played a part in that as well.

    After doing a lot of research on effects of sleep deprivation on Fibro ,felt if I could improve that part some of the symptoms might improve. And have read on the Fibro forum many (although not all) who manage to get a few decent nights sleep feel a bit better for a time. So I took a natural seratonin supplement 5-htp (can't be taken if on antidepressants which most pain meds for Fibro or diabetic nerve pain actually are) did all the stretching exercises advised by the fibro nurse, and dealt with the nerve pain using distraction tecniques. Found if I simply waved my arms while singing a song or reciting soemhting when the burnign started the pain wasn't severe and was bearable. Nothing intially helped the muscle stiffness or aching.

    It was basically a leap of faith , but as I wasn't worrying aobut the condition , my sleep hours gradually icreased from 1 hour to 90 mins, then 2 hours then 3 , then 5. After jsut a month my Fibro symptoms ahd improved . After about 5 months I was free of them all and haven't been bothered since thankfully.

    It's an awful condition,and I read the longer you have it, the less chance there is of a full recovery. Certainly in my case I think the sleep deprivation was the main cause of it. Read about an experiment they carried out on a group of US healthy young athletes. They wakened them every time they entered the resorative sleep pattern over several days and everyone of them developed Fibro symptoms. eg burning pain, muscle stiffness and cognitive problems.

    Hope you improve soon Susie.

  2. #22
    Senior Member susieboots's Avatar
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    Hi seriouslyfedup. Fascinating reading, and so happy to hear you have managed at least to cure the fibro part of your health issues. Sadly, as you say I am unable to take the serotonin supplement.

    Similarly, I constantly try exercising every day, I also walk down the farm road, a distance of approx. 50 metres from my bungalow. This takes quite a while because I have to keep stopping, and lean on my crutch or a fence. Although this is difficult, I enjoy meeting people for a chat if anyone is about.

    It is very difficult to try to build up my muscles, they are so wasted in my back and legs, and they don't support me very well. My condition was brought on my suffering viral encephalitis and my immune system is severely compromised, My ANA (anti nuclear antibodies) test was very high, and subsequent blood tests remain high.

    My question is, does the serotonin supplement lower the ANA?

  3. #23
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    Amitriptyline seems to be very popular for FB. It helps with sleep and muscle probs.

  4. #24
    Senior Member susieboots's Avatar
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    Hi wobble, Amitryptline has been suggested, but on my file it says I had an allergic reaction, so they have not prescribed. I have no idea of any reaction, must have been a very long time ago.

  5. #25
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    Quote Originally Posted by susieboots View Post
    Hi seriouslyfedup. Fascinating reading, and so happy to hear you have managed at least to cure the fibro part of your health issues. Sadly, as you say I am unable to take the serotonin supplement.

    Similarly, I constantly try exercising every day, I also walk down the farm road, a distance of approx. 50 metres from my bungalow. This takes quite a while because I have to keep stopping, and lean on my crutch or a fence. Although this is difficult, I enjoy meeting people for a chat if anyone is about.

    It is very difficult to try to build up my muscles, they are so wasted in my back and legs, and they don't support me very well. My condition was brought on my suffering viral encephalitis and my immune system is severely compromised, My ANA (anti nuclear antibodies) test was very high, and subsequent blood tests remain high.

    My question is, does the serotonin supplement lower the ANA?
    Sorry don't know Susie, but would doubt it somehow. I tested negative for Lupus , just raised ESR rate , think that's just general inflammation.The only time antibodieshave been mentioned with me was when the hospital lab was having probs hetting a blood match before I had an operation. But don't know what they were.

    They kept coming back for more and more blood samples from me to send off for matching, my haemoglobin levels before the op were 12 but after it were down at 8.5 , so don't think they gave me any in the end.

    Think part of the key to me getting rid of it was I didn't have it for very long overall, so my muscles and tendons didn't get long enough to shorten with not being used. I had a great response with Amitryptiline (except for the dry motuh sympoms you often get with it) for diabetic nerve pain years ago, but not allowed it now, even for a day due to heart arrythmia etc. Got a crazy heartbeat. lol. We got Amitryptiline from the vet many years ago for one of our dogs when she had bone cancer in the front leg. Helped her pain for a short time.

    Only other person I've really heard of getting rid of it or a huge improvement was the young woman on the same programme as Cardiff Lady. The one who was now training for going up Killimanjaro. But they didn't really explain how she had managed it unfortunatley.

  6. #26
    Senior Member susieboots's Avatar
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    Well I have now started my new meds - Pregabellin, and I actually feel some relief, which I never did with Gabapentin.

  7. #27
    Senior Member susieboots's Avatar
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    DW you are spot on. My titer was 1:950. Maybe I need a further test,

    As I said earlier, I feel some light relief painwise, since starting the Pregabellin, however, I have the most horrendous headache. I looked at the leaflet, and sure enough, it is one of the possible side effects. What to do? suffer headache or severe muscle pain? Will give it one week only, and if headache continues, back to the Doc instead of waiting until 22nd Jul. As you see, it is 3.45 a.m and I can't sleep due to the headache.

  8. #28
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    Sometimes the side effects of medication they use for nerve pain are as bad or worse than the conditon itself. Have you tried Duloxetine, (Cymbalta) it's also an anti depressant but like they found with Amitryptiline is effective in relieving pain in both Fibro, and diabetic nerve pain now ? Also has side effects (I couldn't take it ) but everyones' affected differently.

  9. #29
    Senior Member susieboots's Avatar
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    Hi SFU, no not tried Cymbalta. I wonder if it is in the same group of meds as those I have tried. Anyway, headache gone now, so will persevere with the Pregabellin, and see how it goes.

    Hope you have a great day

  10. #30
    Senior Member acheron's Avatar
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    Hi Susie it was cymbalta what I had with the gabapentine and the combination worked better for me but had to stop because of gut
    it's an anti depressant drug xx

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