Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Remission is very possible. Here are my non-secrets of how I achieved a about a 90% remission for about 15 years living a normal life.
First off I became a vegetarian because everything that I ate my body acted as if it was allergic to it. As soon as food touched my mouth, something would happen whether it be pain or something else. This went on for years after a bout with mono around age 20 or so.
I tried massive doses of vitamins vitamins, diet change, and whatever else was around at the time (early 80's). The only thing that felt good was fasting for 2-3 days at a time. I went from doctor to doctor all of them very frustrated with me when I couldn't describe my pain. I basically hurt everywhere Dr's could not understand how to treat body pain that wasn't localized to one area. Of course blood tests came back normal all the time as they do today. At this point they all said it was psychological based, but I knew otherwise.
So how did I achieve a remission about 8-10 years later? Basically none of the above treatments had any effect. The body reactions just slowly eased up on it's own, no rhyme or reason. It wasn't as if any treatment helped me other than my own body had showed some mercy.
After Fibro had eased up my life then became stressful, got married had a child, started a business etc. I still experienced some low level Fibro related issues like still reacting to food and some feet pain, yet nothing like it was prior. My life was just basically NORMAL. No flares, just little anomalies that I accepted as being part of my body functioning. After 15 years of marriage, stress etc still no sign of fibro returning.
At some point in time around 2008 I noticed my body changing. Fibro started to return gradually and I just didn't make the mental connection. No major life changes, no abnormal levels of stress, it just kept getting worse and worse each year. Maybe it was the excessive amount of exercising? Who knows? I tried herbs and and various other stuff that would help a little for a month then stop. Little by little over a several year span I had to stop all of my stretching, exercising, hiking etc. In 2009 I had to give up my business.
Fibro originally showed it's ugly face after getting mononucleosis. I'm not sure why it mostly left or why it's back again. All i can say it's pure hell this time around and every little thing I do makes it worse. Diet, vitamins, snake oil cures do not help. Lots of meds at times controls some of the pain and that's only when I'm laying down which encompasses 10 hours of my day.
During remission, I was an exercise fanatic within the time span of several years prior to the fibro returning. I'm wondering if that's what triggered its return. So I'm one of the rare people with hopes for another remission... hope. I'm just not sure how likely my hope is. I don't believe there is any one magic cure and I'm certain for me that it stems from having an overactive central nervous system. Somehow I think one of the causes lies in the bacteria in my gut. I have no way to prove it other than reading theories based on the same assumption. I stopped trying to figure it all out and I can't afford to go doctor shopping. As long as I have a doctor prescribing me drugs to dull the pain I'm content, or at least I make myself believe so.
I'm 56 now and waiting for another remission. If it doesn't happen at some point in time ( before money runs out) my plan will be to take trip to the Grand Canyon and see what it's like to fly in my car. Until then I'll have hope.
Remission is rare, then again they say about 10% of us males get Fibro. Will I beat the odds and get some quality life back or did I already pass go and get my get out of Fibro free card?
First off I became a vegetarian because everything that I ate my body acted as if it was allergic to it. As soon as food touched my mouth, something would happen whether it be pain or something else. This went on for years after a bout with mono around age 20 or so.
I tried massive doses of vitamins vitamins, diet change, and whatever else was around at the time (early 80's). The only thing that felt good was fasting for 2-3 days at a time. I went from doctor to doctor all of them very frustrated with me when I couldn't describe my pain. I basically hurt everywhere Dr's could not understand how to treat body pain that wasn't localized to one area. Of course blood tests came back normal all the time as they do today. At this point they all said it was psychological based, but I knew otherwise.
So how did I achieve a remission about 8-10 years later? Basically none of the above treatments had any effect. The body reactions just slowly eased up on it's own, no rhyme or reason. It wasn't as if any treatment helped me other than my own body had showed some mercy.
After Fibro had eased up my life then became stressful, got married had a child, started a business etc. I still experienced some low level Fibro related issues like still reacting to food and some feet pain, yet nothing like it was prior. My life was just basically NORMAL. No flares, just little anomalies that I accepted as being part of my body functioning. After 15 years of marriage, stress etc still no sign of fibro returning.
At some point in time around 2008 I noticed my body changing. Fibro started to return gradually and I just didn't make the mental connection. No major life changes, no abnormal levels of stress, it just kept getting worse and worse each year. Maybe it was the excessive amount of exercising? Who knows? I tried herbs and and various other stuff that would help a little for a month then stop. Little by little over a several year span I had to stop all of my stretching, exercising, hiking etc. In 2009 I had to give up my business.
Fibro originally showed it's ugly face after getting mononucleosis. I'm not sure why it mostly left or why it's back again. All i can say it's pure hell this time around and every little thing I do makes it worse. Diet, vitamins, snake oil cures do not help. Lots of meds at times controls some of the pain and that's only when I'm laying down which encompasses 10 hours of my day.
During remission, I was an exercise fanatic within the time span of several years prior to the fibro returning. I'm wondering if that's what triggered its return. So I'm one of the rare people with hopes for another remission... hope. I'm just not sure how likely my hope is. I don't believe there is any one magic cure and I'm certain for me that it stems from having an overactive central nervous system. Somehow I think one of the causes lies in the bacteria in my gut. I have no way to prove it other than reading theories based on the same assumption. I stopped trying to figure it all out and I can't afford to go doctor shopping. As long as I have a doctor prescribing me drugs to dull the pain I'm content, or at least I make myself believe so.
I'm 56 now and waiting for another remission. If it doesn't happen at some point in time ( before money runs out) my plan will be to take trip to the Grand Canyon and see what it's like to fly in my car. Until then I'll have hope.
Remission is rare, then again they say about 10% of us males get Fibro. Will I beat the odds and get some quality life back or did I already pass go and get my get out of Fibro free card?
I was living with my girlfriend to whom the relationship was not the healthiest. She was someone who refused to talk about any problems, extremely closed down like it was talking to a wall never getting a response. It's not just us men that most women complain about being closed down. At least I was strong enough to leave and have since moved into a dear friends home.
The Grand Canyon trip is reserved for when money runs out and my hope has dried up. At 56 I feel that at least I have lived my life for the most part. The other factor is bad genes and I watch how my dads body is just falling apart at 81. My body is following in his footsteps except at a faster pace. Now I'm in know way suicidal, merely just stating the facts. I just don't want to live in a suffering state, I have no fear of death, just suffering.
Years ago I was a hospice volunteer who had the unique ability to act as a cross-over guide. I was able to communicate with people who couldn't talk, lead people to their loved ones who passed. I've had many experiences on this level. Death is the easy part. Living with fibro is shear torture. I find myself anxious ridden a lot of the time and hate that I must spend at least 10 hours of every day lying down.
I guess this turned int a ramble here. I'm just not a happy camper. I'm a very grateful person for all that I do have and for my supportive friends and family. And so I await for remission once again. Until then I just try to mask the pain by medication and various herbs, racetams, and whatever else that can dull the general anxiety and pain.
I'm still trying to figure out the lesson to be learned? All I can say is that for me, fibro just magically eased up the last time around. I honestly do not believe there is a magic cure or a method of solving fibro.... for ME. It was luck the last time around and it will be luck again if it happens this time around.
could you perhaps move to a state with more liberal benefits? Here in northern California, you can get on a subsidized housing or senior housing wait list, you can go to a free clinic or community clinic and get a record of your medical problems and apply for disability. why not?
Friend me privately and I will tell you about communities near me and what they offer. I hate to hear you so down. I know how useless you must feel when you can't work, but, with support, you can live a good life.
More and more doctors and clinics are refusing to treat pain patients. I don't have the money to outlay to maybe be treated by a so called "pain management" doctor. I'll stick with what I have until my doctor leaves. It's a game of Russian Roulette. If I seriously need medical help I'll just go to the emergency room, not that anything will be done anyways. I went to the ER about a year ago with chest pains which turned out to be severe anxiety. My doctor wanted me to see a cardiologist in his clinic which is impossible if you have little means to pay for it.
I'm sure this is a familiar story to many of you out there. We keep going on the best we can until we no longer can.
Voc rehab could start you with establishing a paper trail. Also any disability resource organization in your state might help you. Please don't do a Thelma & Louise. Life is short but precious. Maybe you will feel differently about things. Hope so.