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.
Hi all,
I've been a member of this website but never had the energy to post something (ironic!), but want to share my experience partly just to share, partly to see if anyone has helpful ideas, and partly because maybe my experience could be helpful to others in fodder for commiserating.
So I was a healthy and energetic young person, just ran the boston marathon in 2006. Went to live and meditate in Thailand for a year, which I loved, and I also contracted: pinworms, hookworms, blood borne protozoan parasites, tapeworms, amoebas (which led to dysentery) and some other illnesses. I didn't feel too well, needless to say. After 6 months back in the states with unsuccessful self treatment with herbs I got the nuclear option of some heavy western drugs that killed all that stuff.
Afterwards I didn't feel much better and had some near death experience where I thankfully did not die (obviously). My body was so tired I couldn't walk or think and was barely alive for a period of time.
Lots of alternative healers and some good eating, I recovered somewhat over the next 5 years despite having intense chronic tiredness and IBS (lots of diarrhea and severe nausea most of the time).
About 3 years ago the nausea seemed to magically fade to having it about once a month now as opposed to all day every day. Very happy about that, however I developed severe pain in every muscle and joint in my body (a new symptom at the time) that worsens after activity (like my hands hurt typing this and will ache more after). Living at 5600 ft high in Colorado seemed to worsen my symptoms a lot. Now back at sea level I still sleep poorly and have lots of pain, but the nausea is infrequent and I feel a lot more energy to do things, but, sadly, its so painful to do things I am not active almost at all.
So I'm curious if anyone out there relates or has reflections on this life experience. One thing a fellow sufferer mentioned recently was a pattern of people with CFS he knows having a tendency to hold themselves to high standards. I certainly have a habit of perfectionism and self criticism that has been getting better over the years but still present. So I've been trying to relax that. No results physically so far but I suppose its a win win since my mind will be lighter even if it doesn't help my body.
Otherwise I try to eat well, walk a little each day even if its just going to the bathroom, and acupuncture helped, but I ran out of money for it. I feel that my recently acquired 40hr/wk job is killing my body and soul and mind due to the high level of pain it causes and having no energy left to have any life of my own. So thinking about disability or a part time job with room and board I know of, but feeling grief to lose my apartment and current lifestyle.
Thanks for reading!
p.s. I've seen a ton of doctors and never has it helped with these symptoms. Although I was positive for epstein barr without ever having an identified bout of mono, so that could be something. otherwise all test results normal. I've tried a lot of herbs and supplements but the only one that helped kept me awake all night (it was called fibro response supplement).
I've been a member of this website but never had the energy to post something (ironic!), but want to share my experience partly just to share, partly to see if anyone has helpful ideas, and partly because maybe my experience could be helpful to others in fodder for commiserating.
So I was a healthy and energetic young person, just ran the boston marathon in 2006. Went to live and meditate in Thailand for a year, which I loved, and I also contracted: pinworms, hookworms, blood borne protozoan parasites, tapeworms, amoebas (which led to dysentery) and some other illnesses. I didn't feel too well, needless to say. After 6 months back in the states with unsuccessful self treatment with herbs I got the nuclear option of some heavy western drugs that killed all that stuff.
Afterwards I didn't feel much better and had some near death experience where I thankfully did not die (obviously). My body was so tired I couldn't walk or think and was barely alive for a period of time.
Lots of alternative healers and some good eating, I recovered somewhat over the next 5 years despite having intense chronic tiredness and IBS (lots of diarrhea and severe nausea most of the time).
About 3 years ago the nausea seemed to magically fade to having it about once a month now as opposed to all day every day. Very happy about that, however I developed severe pain in every muscle and joint in my body (a new symptom at the time) that worsens after activity (like my hands hurt typing this and will ache more after). Living at 5600 ft high in Colorado seemed to worsen my symptoms a lot. Now back at sea level I still sleep poorly and have lots of pain, but the nausea is infrequent and I feel a lot more energy to do things, but, sadly, its so painful to do things I am not active almost at all.
So I'm curious if anyone out there relates or has reflections on this life experience. One thing a fellow sufferer mentioned recently was a pattern of people with CFS he knows having a tendency to hold themselves to high standards. I certainly have a habit of perfectionism and self criticism that has been getting better over the years but still present. So I've been trying to relax that. No results physically so far but I suppose its a win win since my mind will be lighter even if it doesn't help my body.
Otherwise I try to eat well, walk a little each day even if its just going to the bathroom, and acupuncture helped, but I ran out of money for it. I feel that my recently acquired 40hr/wk job is killing my body and soul and mind due to the high level of pain it causes and having no energy left to have any life of my own. So thinking about disability or a part time job with room and board I know of, but feeling grief to lose my apartment and current lifestyle.
Thanks for reading!
p.s. I've seen a ton of doctors and never has it helped with these symptoms. Although I was positive for epstein barr without ever having an identified bout of mono, so that could be something. otherwise all test results normal. I've tried a lot of herbs and supplements but the only one that helped kept me awake all night (it was called fibro response supplement).
It's interesting the altitude made things worse for you. We traveled to AZ over Christmas, and when we were in the Grand Canyon area, I woke in the middle of the night with intense pain, enough that I was crying out. It was like an entire body contraction. I wondered if it was in part because of the altitude.
Sorry your current schedule is so difficult. :( That's hard.
(I don't have any words of wisdom or insight but just wanted to say hi and welcome. :) )
Please don't blame yourself for any of this. It's not your fault, not because you are a bit of a perfectionist or are self-critical (who isnt?).
Your symptoms (if they are fibro related) will change with time and may even lessen, so don't lose hope. You might want to try some of the drugs used for fibro because herbs probably are too weak to have much effect on the pain. There are quite a few to try. Check out a list from fibronetnews website.
Regarding disability: you may want to contact a good local lawyer (make sure he/she has done a lot of cases and ask about the success rate). Ask about how you build a case. Certainly you need to be seen for fibro on an ongoing basis by docs (you'll have to try some meds).
Since you're young, you may want to try going to your local state vocational rehab office and trying out some types of work that may be better for you.
I recommend a website (google this: Bruce Campbell's self-help chronic fatigue course). You have to learn pacing, moderating your life to what your body will let you do.
Keep posting!