Searching for cause & hoping to find others

@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 ❤️

@tin555 here are my symptoms right now and previously because they have changed and are changing all the time:
Had interstitial cystitis about 15 years ago , recently had it again.
Had chronic sinus infections and over a year of continuous antibiotics then went away .
Feet and shoulder pain that have gone away.
Pelvic pain has gone away.
Ankle stiffness.
Chronic Migraines
Headaches
Extreme back of eye pain
TMJ (recently had dental procedure 17 days and it was aggravated and pain hasn’t gone away so I’m asking muscle relaxant, Tylenol and ibuprofen everyday for this right now.
Lower back pain that radiates to the right hip (recently and for quite awhile.
Pain from bottom of feet to hips.
IBS
GERD
SLEEP apnea
High blood pressure
Insomnia (forever)
Chronic diarrhea
Fatty liver
Kidney stones (many many times), 4 surgeries have passed hundreds recently had 3 on left 1 on right kidney.
High triglycerides
Nerve pain on upper thighs and hip pain .
Cold sores
Eczema or something like that that causes extreme itchiness on scalp and shoulders, ear.
Anxiety
Severe depression
I’m sure i’ve left some things out. I’ve seen many in this group that have so much more than me.
Peace and love.

@hraka13
hello Betty. I am Australian and went on a cruise. I got swine flu (pig flu) . I was on life support for four weeks and hospital for three months. (12 years ago)
That was the first time I had spasmed muscles. I was not diagnosed with Fibomyalgia until some years later.
Christine

@tin555 here are my symptoms right now and previously because they have changed and are changing all the time:
Had interstitial cystitis about 15 years ago , recently had it again.
Had chronic sinus infections and over a year of continuous antibiotics then went away .
Feet and shoulder pain that have gone away.
Pelvic pain has gone away.
Ankle stiffness.
Chronic Migraines
Headaches
Extreme back of eye pain
TMJ (recently had dental procedure 17 days and it was aggravated and pain hasn’t gone away so I’m asking muscle relaxant, Tylenol and ibuprofen everyday for this right now.
Lower back pain that radiates to the right hip (recently and for quite awhile.
Pain from bottom of feet to hips.
IBS
GERD
SLEEP apnea
High blood pressure
Insomnia (forever)
Chronic diarrhea
Fatty liver
Kidney stones (many many times), 4 surgeries have passed hundreds recently had 3 on left 1 on right kidney.
High triglycerides
Nerve pain on upper thighs and hip pain .
Cold sores
Eczema or something like that that causes extreme itchiness on scalp and shoulders, ear.
Anxiety
Severe depression
I’m sure i’ve left some things out. I’ve seen many in this group that have so much more than me.
Peace and love.

@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 ❤️