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Can you trace your illness back to about 1980? I'd like to know how many people here can trace the start of their illness back roughly 30 years. Even if you weren't diagnosed until more recent than that.
Can you trace your illness back to about 1980?
- Thread starter Stormyskye
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1984 here, so a little late. Diagnosed 1990.
(I think I was probably born predisposed though.)
(I think I was probably born predisposed though.)
First full on flare in 1980 after a really nasty case of Mono. Didn't get a dx until this last December though.
@ anne I'm absolutely positive that I was not only born predisposed, but inherited this from my mom who's been at varying levels of ill my whole life.
@ anne I'm absolutely positive that I was not only born predisposed, but inherited this from my mom who's been at varying levels of ill my whole life.
My CFS hit me like a bulldozer in fall of 1977.
All my mono tests were negative, but my father (pathologist) said 75% of my red blood cells were "abnormal."
All my mono tests were negative, but my father (pathologist) said 75% of my red blood cells were "abnormal."
G
Generational
It runs in my family. Grandma from like 1950, mom in 1977 after historectomy. There is a coUsin and an uncle with lupus. I was fine until 1999 when I started teaching. Every year I caught a bug and every year I lost more and more function. Oh, and every year I had some really strange symptom that the docs could not figure out (grins)
It runs in my family. Grandma from like 1950, mom in 1977 after historectomy. There is a coUsin and an uncle with lupus. I was fine until 1999 when I started teaching. Every year I caught a bug and every year I lost more and more function. Oh, and every year I had some really strange symptom that the docs could not figure out (grins)
I got CFS
in 87. Positive monspot test, chicken pox and abnormal liver test all at once. My whole family living with me at the time then also got CFS within a 2month period.
in 87. Positive monspot test, chicken pox and abnormal liver test all at once. My whole family living with me at the time then also got CFS within a 2month period.
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Interesting....
George, are your Grandma and Mom still with us?
George, are your Grandma and Mom still with us?
Around August 1980 I had 2 weeks of severe & debilitating back pain (that's all I remember).
Started therapy with a chiropractor (saw him for 20+ years).
He would treat all my severe headaches, back, hip, shoulder, neck, knee pain etc. He was even helpful when I had gallstones ie clearing out my congested liver, adrenals etc.
The new chiropractor (who I eventually discontinued when that therapy was ineffectual) claimed my problems were stress, chronic inflammation & a few other things I can't remember.
So I have been "unwell" & in pain since 1980 perhaps I had FM (& now possibly CFS) from then?
Officially diagnosed with FM in May 2006.
Is 1980 somehow significant?
Started therapy with a chiropractor (saw him for 20+ years).
He would treat all my severe headaches, back, hip, shoulder, neck, knee pain etc. He was even helpful when I had gallstones ie clearing out my congested liver, adrenals etc.
The new chiropractor (who I eventually discontinued when that therapy was ineffectual) claimed my problems were stress, chronic inflammation & a few other things I can't remember.
So I have been "unwell" & in pain since 1980 perhaps I had FM (& now possibly CFS) from then?
Officially diagnosed with FM in May 2006.
Is 1980 somehow significant?
I really crashed in 1982. When I finally found a doctor who didn't tell me there was "nothing wrong," he said it looked like I had some sort of long-term viral infection that wasn't mono. My fatigue, though, started in 1974 with my first pregnancy, but it just felt like fatigue. The other symptoms from 82 were debilitating.
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I'm just curious as to how many of us are left. 1980 or so was the Incline Village mess. While that was the outbreak that made the news, there were others. If you've survived this so called non-progressive illness for 30 yeas or so, you're doing something right. So, Kudos to all the long timers!
So now that I know you're out there, can you give me a really short recap of what you've used for treatment? Not all the details, just if you've used diet, or herbs or what. I'd appreciate it.
I'll start. I used diet (mostly raw alkaline foods) and herbs. No meds, can't take them. Managed to put it all into remission for a few years. I've lost a little ground with that and am having body temp issues at this point. I'm freezing.
So now that I know you're out there, can you give me a really short recap of what you've used for treatment? Not all the details, just if you've used diet, or herbs or what. I'd appreciate it.
I'll start. I used diet (mostly raw alkaline foods) and herbs. No meds, can't take them. Managed to put it all into remission for a few years. I've lost a little ground with that and am having body temp issues at this point. I'm freezing.
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My approach is very low tech 
In the past I've done well with homeopathy and had some short term gains with HBOT (for detox).
I avoid chemicals as much as possible (that includes eating organic), and no grains or dairy...helps in my case with inflammation and brain fog to avoid those.
Therapeutic grade probiotics, ferments for extra probiotics and fish oil are the only supplements I'm taking. No meds.
What I'm doing seems to stop me from sliding backwards but I'm not moving forwards either. Looking into a couple of new things to try this year.
In the past I've done well with homeopathy and had some short term gains with HBOT (for detox).
I avoid chemicals as much as possible (that includes eating organic), and no grains or dairy...helps in my case with inflammation and brain fog to avoid those.
Therapeutic grade probiotics, ferments for extra probiotics and fish oil are the only supplements I'm taking. No meds.
What I'm doing seems to stop me from sliding backwards but I'm not moving forwards either. Looking into a couple of new things to try this year.
*Antibiotics (courses of up to 6 weeks at a go, repeatedly) have been the single most helpful thing I've ever done and continue to be helpful.
*Alprazolam has also been very useful for sleep.
*Hysterectomy/oophorectomy (endometriosis) also coincided with improvement in health.
*Anti-malarials (not the new ones which are actually effective against malaria, the old ones) used during a traveling remission and felt they helped, too, but not sure.
*Cannabis was helpful at the end of my remission but is no longer.
In the beginning I tried a lot of supp.s and diet changes and and and... nada, zip, zilch.
After a looooong, slooowww recovery, during a remission of symptoms and a return to 85 functioning (with crashes and flares), I was almost spectacularly careless with my health (poor sleep, lousy but tasty diet) and I thrived.
Ok, ok, I thrived and crashed and thrived and crashed... but I'm pretty sure there was some thriving in there too!
*Alprazolam has also been very useful for sleep.
*Hysterectomy/oophorectomy (endometriosis) also coincided with improvement in health.
*Anti-malarials (not the new ones which are actually effective against malaria, the old ones) used during a traveling remission and felt they helped, too, but not sure.
*Cannabis was helpful at the end of my remission but is no longer.
In the beginning I tried a lot of supp.s and diet changes and and and... nada, zip, zilch.
After a looooong, slooowww recovery, during a remission of symptoms and a return to 85 functioning (with crashes and flares), I was almost spectacularly careless with my health (poor sleep, lousy but tasty diet) and I thrived.
Ok, ok, I thrived and crashed and thrived and crashed... but I'm pretty sure there was some thriving in there too!
Nutritional supplements have made the biggest difference for me. Hasn't made me well, but it's made me better. And I'll take better.
Acupuncture for pain has worked either very well or not at all depending on who was doing it. The one (and only ) day that I've had with zero pain that I can remember after 1980 was after an acupuncture session. At the time I was too broke to continue.
A strict GFCF diet has had HUGE effects on my gut issues and emotional stuff. Nary an anxiety attack since.
Acupuncture for pain has worked either very well or not at all depending on who was doing it. The one (and only ) day that I've had with zero pain that I can remember after 1980 was after an acupuncture session. At the time I was too broke to continue.
A strict GFCF diet has had HUGE effects on my gut issues and emotional stuff. Nary an anxiety attack since.
I have my medical records from birth to age 21...we sent off for them a few years ago and I was surprised to find out when I tested positive for mono...July, 1981...I just went and looked it up.
My mom took me to the doctor, even ER several times and they tested me at the ER but guess what...we were never told I was positive for mono...that was the summer between 7 and 8th grades...I was 13! This was in California. I thought my parents might have tried to hide it from me but they didn't know and so I never got treated or was told it was okay to rest...
SJ
My mom took me to the doctor, even ER several times and they tested me at the ER but guess what...we were never told I was positive for mono...that was the summer between 7 and 8th grades...I was 13! This was in California. I thought my parents might have tried to hide it from me but they didn't know and so I never got treated or was told it was okay to rest...
SJ
My first time was in 1984/85. I pulled out of it with the help of a medical doctor/nutritionist. It simmered on the burner,but didn't get out of hand until I was exposed to chemicals and stains in 2004. By 2005, I was desperately struggling. 2006/2007 were desperate years trying to work. By May 2007, I had to take a sabbatical. With high doses of Vitamin C in the fall of October 2007, I was able to start to come around. Then the Fibro and Fatigue Center caused my heart atack and that was it. Now I am totally disabled in severe cardiac heart failure. But it all started in 1984. I worked in a building that had many people dying from cases of cancer. It was so out of the norm, that our union had the building investigated. Supposedly there were normal levels of asbestos. I worked in other buildings, but that building made me sick as soon as I walked in the doors. I had a rare twin twin transfusion pregnancy when I was in the building. I ended up losing the twins and nearly dying in 2001. It took me many many months to come back from that experience. My organs all shut down from experimental procedures that killed the twins and had me on a cooling blanket wit pneumonia and severe sepsis.
G
Thanks for asking
Grandma was diagnosed with, I kid you not, (grins) "dropsy" in 1953. "To many kids", the doctor said, It just plum wore her out. (she did have 8). Grams was tired all the time, laid around, got headaches, sore throats and finally died of throat cancer in 87.
Mom never recovered from a hysterectomy in 77. She kept trying to go back to work and would manage for a few months then just had to give it up. She had headaches, light sensitivity, achy and sore like she had just "done spring cleaning". Mom developed Lymphoma in 87 and died in 91. She was 47.
Grandma was diagnosed with, I kid you not, (grins) "dropsy" in 1953. "To many kids", the doctor said, It just plum wore her out. (she did have 8). Grams was tired all the time, laid around, got headaches, sore throats and finally died of throat cancer in 87.
Mom never recovered from a hysterectomy in 77. She kept trying to go back to work and would manage for a few months then just had to give it up. She had headaches, light sensitivity, achy and sore like she had just "done spring cleaning". Mom developed Lymphoma in 87 and died in 91. She was 47.
G
Thanks Koan
That was a really sweet thing to say Koan than you.
It's been 19 years and I've gotten use to the ideal that I can't call her and tell her what's up. The first 10 though I was mad(both foaming at the mouth kind as well as the angry kind (grins))
I turn 47 on Feb 2 this year.(in a slightly twisted bit of thinking) I figure every year from here on out is a gift.
That was a really sweet thing to say Koan than you.
It's been 19 years and I've gotten use to the ideal that I can't call her and tell her what's up. The first 10 though I was mad(both foaming at the mouth kind as well as the angry kind (grins))
I turn 47 on Feb 2 this year.(in a slightly twisted bit of thinking) I figure every year from here on out is a gift.
Yeah, George, I know other people who lost a parent early and they feel the same way when they cross that threshold and usually they have less cause. Maybe we would all be better off if we understood that every year is a gift - we just don't always know the number of the bus that just missed us.
peace to you and the real george
peace to you and the real george