theotherme
04-07-2009, 04:29 PM
Hello out there, fellow sufferers!
I stumbled upon this message board the other day while researching fibromyalgia (which I do somewhat obsessively), and spent about two hours reading your comments. It is indeed comforting to know that I am not the lone sufferer of this blasted condition.
I am a 52-year-old mother of two residing in the Atlanta area. My symptoms first appeared about 18 years ago, and have come and gone with varying intensity since then. I can trace the onset of my fibromyalgia back to a time when I developed a staph/strep infection in my IUD. The IUD was immediately pulled and I was put on a heavy course of antibiotics, but shortly afterwards I had a sudden onslaught of symptoms: chills, backache, pelvic pain, leg pain, blurry vision, flu-like symptoms... My gynecologist initially suspected Pelvic Inflammatory Disease, but this diagnosis was later dismissed. I am now convinced that I have fibromyalgia.
I'm not one of those who goes running to doctors; on the contrary, I have a healthy skepticism about modern medicine. This is a bit of a paradox, since my father was a doctor and my mother was a science teacher. Interestingly enough, both of my parents, despite their scientific training and knowledge, always held the belief that most cures can be found in the natural world around us, and that the best recourse is usually to "listen to the body" and allow it to heal itself. Because I was raised this way, I have not sought a confirmation that fibromyalgia is indeed what I have. However, I did have a number of tests run many years ago, and the only thing that came back positive was my RA factor. I have also been tested for Lyme disease (negative). All of my other blood work has always been normal. I was eventually sent to a rheumatologist/immunologist, who gave me some materials to read on fibromyalgia and seemed pretty certain that's what I had.
It is very comforting to find that every single item on my long list of aches and pains has been experienced by somebody out there in cyberspace. I'll spare you the full list (although I have at one time or another experienced about 90% of the items on most fibromyalgia checklists). My symptoms flare up and die down, but are never fully gone. At the moment I'm doing pretty well -- my main complaints are intermittent chills, leg pain, Achilles tendinitis and foot pain, and itchy and burning skin. That's not too bad, considering that there have been times when it seemed there wasn't a part of me that didn't ache.
I don't take anything for my fibromyalgia, except an occasional painkiller and lots of vitamins, minerals, and supplements. I try to control it with exercise, and this works like a charm. I am awaiting the warm summer months, because I always seem better when the weather is nice. Of course this could also be because I'm a teacher, so I'm on vacation, and therefore stress-free, during the summer.
I have one question that I have not found the answer to anywhere. I suppose the reason I can't find an answer is that there isn't one... but I'm baffled that no one is even asking the question. Here goes:
It appears that fibromylagia is on the rise in the US, and indeed around the world. What might be the explanation for this? I know that there is a possible connection between fibromyalgia (and other auto-immune disorders) and environmental toxins -- does this explain the increase in cases?
I'd love to hear from some of you directly, and would especially love to hear what methods you use to keep your fibromyalgia in check -- especially any methods that don't involve heavy doses of medicines that have lots of unpleasant side effects.
Nice to "meet" you all! Keep your chins up!
I stumbled upon this message board the other day while researching fibromyalgia (which I do somewhat obsessively), and spent about two hours reading your comments. It is indeed comforting to know that I am not the lone sufferer of this blasted condition.
I am a 52-year-old mother of two residing in the Atlanta area. My symptoms first appeared about 18 years ago, and have come and gone with varying intensity since then. I can trace the onset of my fibromyalgia back to a time when I developed a staph/strep infection in my IUD. The IUD was immediately pulled and I was put on a heavy course of antibiotics, but shortly afterwards I had a sudden onslaught of symptoms: chills, backache, pelvic pain, leg pain, blurry vision, flu-like symptoms... My gynecologist initially suspected Pelvic Inflammatory Disease, but this diagnosis was later dismissed. I am now convinced that I have fibromyalgia.
I'm not one of those who goes running to doctors; on the contrary, I have a healthy skepticism about modern medicine. This is a bit of a paradox, since my father was a doctor and my mother was a science teacher. Interestingly enough, both of my parents, despite their scientific training and knowledge, always held the belief that most cures can be found in the natural world around us, and that the best recourse is usually to "listen to the body" and allow it to heal itself. Because I was raised this way, I have not sought a confirmation that fibromyalgia is indeed what I have. However, I did have a number of tests run many years ago, and the only thing that came back positive was my RA factor. I have also been tested for Lyme disease (negative). All of my other blood work has always been normal. I was eventually sent to a rheumatologist/immunologist, who gave me some materials to read on fibromyalgia and seemed pretty certain that's what I had.
It is very comforting to find that every single item on my long list of aches and pains has been experienced by somebody out there in cyberspace. I'll spare you the full list (although I have at one time or another experienced about 90% of the items on most fibromyalgia checklists). My symptoms flare up and die down, but are never fully gone. At the moment I'm doing pretty well -- my main complaints are intermittent chills, leg pain, Achilles tendinitis and foot pain, and itchy and burning skin. That's not too bad, considering that there have been times when it seemed there wasn't a part of me that didn't ache.
I don't take anything for my fibromyalgia, except an occasional painkiller and lots of vitamins, minerals, and supplements. I try to control it with exercise, and this works like a charm. I am awaiting the warm summer months, because I always seem better when the weather is nice. Of course this could also be because I'm a teacher, so I'm on vacation, and therefore stress-free, during the summer.
I have one question that I have not found the answer to anywhere. I suppose the reason I can't find an answer is that there isn't one... but I'm baffled that no one is even asking the question. Here goes:
It appears that fibromylagia is on the rise in the US, and indeed around the world. What might be the explanation for this? I know that there is a possible connection between fibromyalgia (and other auto-immune disorders) and environmental toxins -- does this explain the increase in cases?
I'd love to hear from some of you directly, and would especially love to hear what methods you use to keep your fibromyalgia in check -- especially any methods that don't involve heavy doses of medicines that have lots of unpleasant side effects.
Nice to "meet" you all! Keep your chins up!
Sponsor
sophie56
04-07-2009, 06:48 PM
Hi. theotherme and welcome. This isn't related to any questions you asked but I noticed we are the same age and in the same profession. Do you not have extreme fatigue? There are days I literally cannot work or that it takes everything in me not to pass out right at my desk. I go to bed the minute I get home. How do you exercise? I want to but my exercise at the moment all I do is pray I can drive home and make it to the bed. I admire people who can move forward with this dreadful beast.
It seems to be getting the upper hand on me.
It seems to be getting the upper hand on me.
theotherme
04-07-2009, 07:32 PM
Hello! You are the first person who has responded to my message, so great to hear from you! Yes, there are many days when I feel completely defeated by my symptoms, and wish I could just roll over and stay in bed. I guess what keeps me going is that I know my students -- and my own children -- need me. I also believe firmly in "mind over matter," so I'm absolutely DETERMINED not to let this illness get the better of me. As far as exercise goes, I spent most of my youth swimming, so that's my number one exercise. I recently joined a health club, and I walk on the treadmill almost every day, take a Pilates-Yoga class once a week, and swim every other day. I find the hot tub and steam room very relaxing, and my symptoms feel better after I'm surrounded by all that heat. What are your main symptoms, and how do you fight them?
sophie56
04-07-2009, 10:01 PM
Hi again. I have severe aching, burning under the skin all over my entire body...that and the fatigue are the worst. I have sleeping problems at night even though I am dead tired. I also have severe anxiety and stress. I'm not sure the anxiety is fibro related but it often shows up with firo. I haven't been able to dAo much about the pain so far.I have gone to many doctors without a lot of help. My counselor helps more than anyone. He gave me provigil which is suspose to help with fatigue but I just got it today so don't know if it works yet or not. I am seeing a pain management doctor the 14th of April. I hope he can help.
Sophie 56
Sophie 56
MizSpentyouth2
04-07-2009, 11:35 PM
Hello and Welcome the otherme,
Some of the things you are doing on your own already are the most beneficial the warm heat does awesome for me, my PCP is a strong believer of the pool I need to get back to it. I have not been able to continue working though. I miss it I was managing a gym I take relefan, lexapro,wellbutrinxl,protonix,loratab,sk ellaxin,lunesta 3 , percoset for breakthrough pain. also mega vitamin d fish and flaxseed oil. I also go to the pain clinic every 6 weeks for trigger point injuections and every 4 months for epidurals. It keeps it manageable But I hate that I have to take all these meds. If I did take all that was prescribed I would be a zombie. There are days sometimes weeks when I feel good then out of nowhere FM rears its ugly head. The fatigue is the worst for me at present, also the brain fog . Sorry to ramble on so much.. Glad you found us there is much wisdom here , these boards have truly been a gift
Huggies
Miz
Some of the things you are doing on your own already are the most beneficial the warm heat does awesome for me, my PCP is a strong believer of the pool I need to get back to it. I have not been able to continue working though. I miss it I was managing a gym I take relefan, lexapro,wellbutrinxl,protonix,loratab,sk ellaxin,lunesta 3 , percoset for breakthrough pain. also mega vitamin d fish and flaxseed oil. I also go to the pain clinic every 6 weeks for trigger point injuections and every 4 months for epidurals. It keeps it manageable But I hate that I have to take all these meds. If I did take all that was prescribed I would be a zombie. There are days sometimes weeks when I feel good then out of nowhere FM rears its ugly head. The fatigue is the worst for me at present, also the brain fog . Sorry to ramble on so much.. Glad you found us there is much wisdom here , these boards have truly been a gift
Huggies
Miz
theotherme
04-08-2009, 10:22 AM
Wow! It's tragic that with all you are doing to control your symptoms, they are still severe enough to prevent you from working! The pool really does work wonders for me, although it's always difficult to take the initial plunge because my body doesn't regulate temperature very well... but once I'm in, I'm great. If you say you're my age, I'm wondering how long you have been suffering? For me, it feels like most of my life. Like all of us, I'd give absolutely anything to feel the way I felt at 25... or to just feel "normal." Oh well, I guess it's not our destiny! Keep fighting back! Maybe someday soon someone will come up with a "magic" cure!
theotherme
theotherme
theotherme
04-08-2009, 11:42 AM
I'm SURE your anxiety is fibro-related! I used to be known for remaining calm even in stressful situations... but ever since I've had this "beast" I have intermittent "meltdowns" and "flip-out" sessions. It makes me sad that my own children will never know the former CALM me. I've had fibro since shortly after the birth of my first child, who is now 20. What a drag! I totally relate to the aching and burning under the skin sensations. I have those pretty much all the time... but ever since I have known what they are, and no longer worry that I have some dreadful terminal illness, I can handle them better.
Glojer
04-08-2009, 05:33 PM
Hi theotherme, welcome to the boards.
My opinion of why fibro is being diagnosed more often. I think doctors are becoming more aware of the disease, especially from the pharmaceutical companies. That may sound a little cynical but it is also a good thing. At least docs now will diagnose fibro instead of saying we are just getting older or even worse we suffer from depression. Fibromyalgia is a legitimate disease on it's own but like you mentioned there are so many overlap diseases and problems it is very difficult to get things under control. Much less to get diagnosed and treated for all the other problems.
I have Auto Immune Issues (don't you like that word 'issue') that need to be treated in order for me to know which is fibro and which is autoimmune. My thyroid for one, I really have worse symptoms when it is off into it's hypo stage. I also have joint pain from connective tissue disease and myofacial pain. My problems with fibro have always been the fact that I can't fall asleep or stay asleep if I do fall asleep. Then I have the drawing up tight sore and aching muscles. I use a muscle relaxer for that and exercise, that helps the most. I do take Ambien for sleep can't do without that.
I take my vitamins and exercise and try to eat better, especially stay away from sugar and all that seems to help a great deal. Having a good attitude is also very important, in my opinion.
I relate to having the kids and the stress and working and all that goes along with it. I am now 60yr.s old and I so remember those days. Hang in there, seems like you have a lot going on, but still can handle it.
Another opinion on why fibro is being diagnosed more, women are getting better health care these days when they insist on it. More women docs for us to go to who listen, and younger docs who are being better educated to listen and to treat womens complaints. Also as patients we are better educated in a way to talk to our docs and insist on better care.
Glojer
My opinion of why fibro is being diagnosed more often. I think doctors are becoming more aware of the disease, especially from the pharmaceutical companies. That may sound a little cynical but it is also a good thing. At least docs now will diagnose fibro instead of saying we are just getting older or even worse we suffer from depression. Fibromyalgia is a legitimate disease on it's own but like you mentioned there are so many overlap diseases and problems it is very difficult to get things under control. Much less to get diagnosed and treated for all the other problems.
I have Auto Immune Issues (don't you like that word 'issue') that need to be treated in order for me to know which is fibro and which is autoimmune. My thyroid for one, I really have worse symptoms when it is off into it's hypo stage. I also have joint pain from connective tissue disease and myofacial pain. My problems with fibro have always been the fact that I can't fall asleep or stay asleep if I do fall asleep. Then I have the drawing up tight sore and aching muscles. I use a muscle relaxer for that and exercise, that helps the most. I do take Ambien for sleep can't do without that.
I take my vitamins and exercise and try to eat better, especially stay away from sugar and all that seems to help a great deal. Having a good attitude is also very important, in my opinion.
I relate to having the kids and the stress and working and all that goes along with it. I am now 60yr.s old and I so remember those days. Hang in there, seems like you have a lot going on, but still can handle it.
Another opinion on why fibro is being diagnosed more, women are getting better health care these days when they insist on it. More women docs for us to go to who listen, and younger docs who are being better educated to listen and to treat womens complaints. Also as patients we are better educated in a way to talk to our docs and insist on better care.
Glojer