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Searching for cause & hoping to find others
Fibromyalgia | Last Active: 1 day ago | Replies (26)Comment receiving replies
I've heard other people suspect vaccinations, but from what I understand it's caused from extreme stress. This could be from an illness (which you had), car accident, trauma, etc. For along time I thought it was caused by black mold. I was diagnosed in my late 20s after being severely sick with black mold and almost dying. I had met 3 other people who had fibromyalgia and also had gotten sick with black mold. After having it for so many years, I'm in my mid 40s now, I realized that my trauma and ptsd actually played a much larger role and the black mold just jump started the fire. I also think that the pain can intensify because of emotional responses, at least it does for me. The Psychiatrist prescribes the same medication for pstd as a Doctor prescribes for fibromyalgia, so I really think emotional responses can play a huge part. I take low doses of gabapentin to calm the fight or flight response in my body.
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@heise006, thank you for saying this. There’s so much negativity around vaccines, most of it false.
tin555, fibromyalgia is a recently “discovered” syndrome and there’s still a lot not known. When I was diagnosed around 1994, the testing was to see if you have anything else and, if you didn’t, it was fibromyalgia. I was about 32 when I was diagnosed snd, based on my last symptoms, my doctor said I’d probably had it since I was at least 19, or 1981. I was just thankful to have someone believe me and not tell me it was all in my head.
It most often is caused by physical trauma and affects women more than me. However, I didn’t have one thing I could point to before I was 19. I was active, didn’t drive (still don’t) so walked or biked or bussed everywhere. I’d have plenty of bike accidents but none really bad until 1984. Even that one, though, didn’t cause any breakage or tears. Sometimes there is no one thing we can point to. It’s what makes this so hard to live with. We don’t know why.
Another problem is that we don’t all have the same symptoms. I know people - women - who can’t function because they’re exhausted or in pain - or both. Maybe it’s because I’ve had it so long that I’m not that way. I’m in constant pain and discomfort. I’m tire a lot, even when I sleep 9 hours. But I am so “used to it” that it’s just part of my life. I do wish I could find some drug its treatment that would make it all better. However, I self medicated for so many years that even pain killers scare me. (As one woman said in an NA meeting, “I can become addicted tho a glass of water”.)
There is a lot of info available online. There is a foundation now that researches the syndrome. There are support groups online. The most important is to be your own advocate. Maybe ask to go to a pain clinic. Mild yoga and swimming helps. Bicycle riding is suggested, but not running or jogging (impact aerobics can cause us more pain).
We don’t have to suffer in silence anymore. When it first was diagnosed I would hear people say it was a made-up disease. Those people weren’t living with what were. It took tears for it to be an accepted diagnosis. Let me say again, don’t suffer in silence. Educate yourself. Talk to your doctor. Ask about alternative treatments. And good luck ❤️