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Welcome & Introduce yourself to the Fibromyalgia/CFS Forum!
Hello and welcome to the Fibromyalgia/CFS forum on MedHelp. This forum is a place for people to come and share experiences with FMS and CFS. Some of you may have a diagnosis from your doctor, some of you may be seeking an answer for undiagnosed symptoms and some of you may be a relative or friend of one who is suffering. This is a great place to learn more and to gain support from others who suffer as well.
In addition to the community here, MedHelp also offers tools to help you and your doctor in your road to wellness. Fibromyalgia and CFS can be so intricate and can have so many different symptoms. Due to this, it is very helpful that MedHelp offers health trackers for us to utilize. We can track our progress and especially our flare ups. Below are just a few trackers that I find useful.
• CFS/FMS Tracker - http://www.medhelp.org/land/health-trackers
• Pain Tracker - http://www.medhelp.org/land/pain-tracker
• Mood Tracker - http://www.medhelp.org/land/mood-tracker
• Weight Tracker - http://www.medhelp.org/land/track-weight-loss
MedHelp also offers a plethora of “encyclopedia style” information available through the Health Topics tab at the top of the page. If you follow the links below you can learn more about Fibromyalgia and CFS, both topics of which are available on MedHelp.
http://www.medhelp.org/medical-information/show/124/Fibromyalgia
http://www.medhelp.org/medical-information/show/636?section_id=27670#sec_27670
I urge you to introduce yourself below and tell us a little about what brought you to the Fibromyalgia/CFS Forum. Again, welcome to MedHelp and the Fibromyalgia/CFS forum!
Sincerely,
Your Community Leader,
Dustybrown
In addition to the community here, MedHelp also offers tools to help you and your doctor in your road to wellness. Fibromyalgia and CFS can be so intricate and can have so many different symptoms. Due to this, it is very helpful that MedHelp offers health trackers for us to utilize. We can track our progress and especially our flare ups. Below are just a few trackers that I find useful.
• CFS/FMS Tracker - http://www.medhelp.org/land/health-trackers
• Pain Tracker - http://www.medhelp.org/land/pain-tracker
• Mood Tracker - http://www.medhelp.org/land/mood-tracker
• Weight Tracker - http://www.medhelp.org/land/track-weight-loss
MedHelp also offers a plethora of “encyclopedia style” information available through the Health Topics tab at the top of the page. If you follow the links below you can learn more about Fibromyalgia and CFS, both topics of which are available on MedHelp.
http://www.medhelp.org/medical-information/show/124/Fibromyalgia
http://www.medhelp.org/medical-information/show/636?section_id=27670#sec_27670
I urge you to introduce yourself below and tell us a little about what brought you to the Fibromyalgia/CFS Forum. Again, welcome to MedHelp and the Fibromyalgia/CFS forum!
Sincerely,
Your Community Leader,
Dustybrown
Hi all, i would be most grateful if anyone could help with my queries. After extensive testing including Brain mri, chest ct, lumber, thoracic and cervical mri and recently emg/ncv which all showed negative results i have been diagnosed with fibromyalgia/conversion/somatization disorder. My symptoms include unilateral weakness, twitching and cramps. the weakness started in the lfet leg and now is in left hand and arm. I also have tremor in left hand and arm. Last night half of my head went numb and left arm all the way to left pinky finger was numb and stiff. This sounds very different form other people who are experiencing fibro. I would just like some reassurance. I am terrified it is ALS/MND or another horrible neurological illness. However have seen a neurologist 3 times and he is convinced every time he carrys out a neurological examination that have no underlying neurological illness.
Any feedback would be most appreciated
Any feedback would be most appreciated
I was diagnosed 3 yrs. ago with Fibromyalgia.I hut for a few year's before that. I went through pure hell trying to find out what was wrong with me.I had to change doctors four times to finally get one who believed I was sick and hurt so bad. Now here I am! I really need some support by people who suffer like me. I'm on lyrica and tarazadone to help me sleep at night.I'm 33 and have two active boys and a very active husband. I try my best to keep up. Sometimes I find it hard to get out of bed sometimes the pain and muscle spasms are so bad. Every day is a struggle. I'm making it and I hope that I can here from anyone on here what meds really help you so I can maybe suggest it to my doctors for the pain.So I can live more of an active life with my family.Thanks
hello everyone,
i'm possibly newly diagnosed with fibro - i guess i'll know for sure in a few weeks.
anyway i'm basically a pretty healthy 24 year old female, or at least i was until July 2009, when i suddenly came down with a mystery viral-infection in my neck and spine. they never figured out what it was, but from that time until Oct 2010 i had high fevers every 3 weeks like clockwork, problems with my skin and hair, suddenly gained a lot of weight, etc. I thought it could be lymes or a thyroid prob but all tests came back normal and no diagnosis was ever made. On October 29th 2010 the cycle abruptly stopped, and was replaced by severe naseua, vomitting and upper right abdominal pain. after 6 months of "normal" test results, they took out my gallbladder, which hadn't been functioning at all for some reason.
For two blissful weeks in May 2011 I felt good again! Until...
At first I thoguht i just had a UTI bc i had to urinate frequently and had some mild flank pain, but soon i developed severe fatigue, to the point where i was falling asleep in public, and a chronic sore throat. The family doc prescribed some antibiotics, but within in a week i had developed severe pain in my hips, to the point that i could not walk. Soon i was having trouble moving the left side of my body, and was experiencing severe pain in joints throughout my body and muscles tenderness, especially in my arms.
Since the sore throat had persisted, the doc ordered an ultrasound of my neck - they identified two nodules, 0.7 mm and 0.5 mm, on my thryoid. we have to wait 3 months to do a biopsy. TSH levels are all normal. my symptoms were still persisting and even getting worse. lately i've been extremely moody and depressed over it, and so so so tired. the only silver lining is that I've dropped 15 pounds since May (even tho i've been eating more ice cream and chocolate than i have in years) and keep losing more...although if it keeps up i might start to get worried.
i was referred to a rheumatologist, who ordered extensive bloodwork, all came back good. soooo he says let's see if it's fibro. he prescribed savella (apparently it wont interact with my other prescriptions like adderol) and said to call him in a week, and if it is fibro that in two weeks i should start to feel better. that was yesterday.
i don't know much about fibro, so i'm hoping to learn a lot from all of you!
i'm possibly newly diagnosed with fibro - i guess i'll know for sure in a few weeks.
anyway i'm basically a pretty healthy 24 year old female, or at least i was until July 2009, when i suddenly came down with a mystery viral-infection in my neck and spine. they never figured out what it was, but from that time until Oct 2010 i had high fevers every 3 weeks like clockwork, problems with my skin and hair, suddenly gained a lot of weight, etc. I thought it could be lymes or a thyroid prob but all tests came back normal and no diagnosis was ever made. On October 29th 2010 the cycle abruptly stopped, and was replaced by severe naseua, vomitting and upper right abdominal pain. after 6 months of "normal" test results, they took out my gallbladder, which hadn't been functioning at all for some reason.
For two blissful weeks in May 2011 I felt good again! Until...
At first I thoguht i just had a UTI bc i had to urinate frequently and had some mild flank pain, but soon i developed severe fatigue, to the point where i was falling asleep in public, and a chronic sore throat. The family doc prescribed some antibiotics, but within in a week i had developed severe pain in my hips, to the point that i could not walk. Soon i was having trouble moving the left side of my body, and was experiencing severe pain in joints throughout my body and muscles tenderness, especially in my arms.
Since the sore throat had persisted, the doc ordered an ultrasound of my neck - they identified two nodules, 0.7 mm and 0.5 mm, on my thryoid. we have to wait 3 months to do a biopsy. TSH levels are all normal. my symptoms were still persisting and even getting worse. lately i've been extremely moody and depressed over it, and so so so tired. the only silver lining is that I've dropped 15 pounds since May (even tho i've been eating more ice cream and chocolate than i have in years) and keep losing more...although if it keeps up i might start to get worried.
i was referred to a rheumatologist, who ordered extensive bloodwork, all came back good. soooo he says let's see if it's fibro. he prescribed savella (apparently it wont interact with my other prescriptions like adderol) and said to call him in a week, and if it is fibro that in two weeks i should start to feel better. that was yesterday.
i don't know much about fibro, so i'm hoping to learn a lot from all of you!
hi! i've had what i am assumming is fibromyalgia for about 11 1/2 years. i've been on the adrenal insufficiency board, but it looks like that problem might be going away for me. i started out having headaches when i was pregnant with my daughter who will be 12 in sept. they lasted for about a month and went away--but after she was born, they came back when she was around 3 months old and took up permanent residence. my neck was also very difficult to get into any comfortable position. i quite often woke up with headaches, but a darvocet and an excedrine in the morning took care of it and i was good for the rest of the day. i had had an irritable baldder for almost 10 years before that, and would occassionally wake up feeling like i had been run over by a truck. i also would get occassional days where i felt like i had lead running through my veins. i didn't have very much drive, either.
i knew my sister had daily headaches i thought that would be so awful to have a headache every day. one day, when i was talking about my various symptoms that would come and go, she told me that she thought i had fibromyalgia and told me that she had been diagnosed with it---she just had not told anyone in the family. i remember thinking that if i did have it----i didn't have it nearly as bad as she did. over time, i gradually started aching in odd and end places, my neck, my heels, my legs, tendonitis in my elbow, etc. i gradually started taking the darvocet for the aching, so the headaches were not as bad because they didn't get a chance to kick in because i had already taken darvocet for the aches. in december of one year i was up to 100 darvocet in a month.
i had an bonus baby when i was 40. she ended up being an emergency c-section, the darvocet wasn't enough for me, so they gave me vicodin--and i discovered that one of them wasn't enough--so the doc allowed me to take two. i have a pretty high pain tolerance and usually would not finish pain killers when they were given to me. 3 weeks after delivery, i went into such a bad flare! my legs were hurting so bad i was in tears. the doc had me come in to check things out and he switched me to norco so i wouldn't get to much acetaminophin. i have never been able to get off of the norco since. my daughter will be 8 in october. i have gradually needed more pain medication over time----and can really tell when the air pressure is changing. hazy skies give me a dull headache that won't go away regardless of what i take. a storm front moving in will make my arms ache---most of my pain is in my legs and my neck and upper shoulders. i have had carpal tunnel surgery on both wrists, but a weather change will make them hurt and cramp---just like they did before surgery. when my knees ache, it is almost unbearable. i think it is just tendonitis, but i have had arthroscopic surgery for arthritis on one knee.
my bones hurt to press on them, my feet heve been quite painful on the bottoms at times, i have arthritis in my fingers and my feet. i also am gettin a little bit of neuropathy that comes for a few months and then disappears.
i went to a rheumatologist who told me that if i had fibromyalgia i shouldn't be taking pain killers---but he offered me no other suggestions. he had a whole bunch of blood work drawn---but i left there in tears and never went back. i went to a neurologist who didn't even listen to have of my symptoms---i had written them down--he told me that he thought i had restless legs and that he thought i was addicted to pain killers---he didn't even know how many i was taking!!! i was too intimidated by him to tell him that i knew what restless legs were and that this was not it---besides, you don't get it in your neck and arms i was also mortified that he said i was addicted to pain killers---so i went home and didn't take anything. i was dying by 11pm and my husband told me i should take something. the pain had gotten so out of control that i hurt in places that didn't normally hurt and it took me hours to get the pain back under control---plus, i had to take more medication than normal to get it under control.
the pharmacist told me that they knew who the people with drug problems were---and that i wasn't one of them. my orthoped told me he knew how much i was taking. i was so mad about that whole experience---so i never went back----he told me that i had a "touch" of fibromyalgia.
i have gotten progressively worse over the years and fatigue has become a big problem for me. i take vyvanse to keep from falling asleep--but i'm still shot way eaqrlier in the day than i need to be---especially since i still have children at home. i am alllowed 4 norco and 4 soma a day--which i usually take with 1/2 of a caffeine pill. i take alot of aspirin and i take baclofen at night and whatever else i can to help me get to sleep.
i did try savella---and i was actually able to cut back just a little on my pain meds--but i can't afford it until we get insurance again. i am wondering if lyrica might work for me any better than the savella. cymbalta did nothing for me.
i know i need to improve my diet and get some regular exercise--i'm just not quite sure how to go about doing either one. i'm realistic enough to realize that this is probably never going to go away---but i do believe i can make it somewhat better---please tell me i'm not fooling myself here.
i knew my sister had daily headaches i thought that would be so awful to have a headache every day. one day, when i was talking about my various symptoms that would come and go, she told me that she thought i had fibromyalgia and told me that she had been diagnosed with it---she just had not told anyone in the family. i remember thinking that if i did have it----i didn't have it nearly as bad as she did. over time, i gradually started aching in odd and end places, my neck, my heels, my legs, tendonitis in my elbow, etc. i gradually started taking the darvocet for the aching, so the headaches were not as bad because they didn't get a chance to kick in because i had already taken darvocet for the aches. in december of one year i was up to 100 darvocet in a month.
i had an bonus baby when i was 40. she ended up being an emergency c-section, the darvocet wasn't enough for me, so they gave me vicodin--and i discovered that one of them wasn't enough--so the doc allowed me to take two. i have a pretty high pain tolerance and usually would not finish pain killers when they were given to me. 3 weeks after delivery, i went into such a bad flare! my legs were hurting so bad i was in tears. the doc had me come in to check things out and he switched me to norco so i wouldn't get to much acetaminophin. i have never been able to get off of the norco since. my daughter will be 8 in october. i have gradually needed more pain medication over time----and can really tell when the air pressure is changing. hazy skies give me a dull headache that won't go away regardless of what i take. a storm front moving in will make my arms ache---most of my pain is in my legs and my neck and upper shoulders. i have had carpal tunnel surgery on both wrists, but a weather change will make them hurt and cramp---just like they did before surgery. when my knees ache, it is almost unbearable. i think it is just tendonitis, but i have had arthroscopic surgery for arthritis on one knee.
my bones hurt to press on them, my feet heve been quite painful on the bottoms at times, i have arthritis in my fingers and my feet. i also am gettin a little bit of neuropathy that comes for a few months and then disappears.
i went to a rheumatologist who told me that if i had fibromyalgia i shouldn't be taking pain killers---but he offered me no other suggestions. he had a whole bunch of blood work drawn---but i left there in tears and never went back. i went to a neurologist who didn't even listen to have of my symptoms---i had written them down--he told me that he thought i had restless legs and that he thought i was addicted to pain killers---he didn't even know how many i was taking!!! i was too intimidated by him to tell him that i knew what restless legs were and that this was not it---besides, you don't get it in your neck and arms i was also mortified that he said i was addicted to pain killers---so i went home and didn't take anything. i was dying by 11pm and my husband told me i should take something. the pain had gotten so out of control that i hurt in places that didn't normally hurt and it took me hours to get the pain back under control---plus, i had to take more medication than normal to get it under control.
the pharmacist told me that they knew who the people with drug problems were---and that i wasn't one of them. my orthoped told me he knew how much i was taking. i was so mad about that whole experience---so i never went back----he told me that i had a "touch" of fibromyalgia.
i have gotten progressively worse over the years and fatigue has become a big problem for me. i take vyvanse to keep from falling asleep--but i'm still shot way eaqrlier in the day than i need to be---especially since i still have children at home. i am alllowed 4 norco and 4 soma a day--which i usually take with 1/2 of a caffeine pill. i take alot of aspirin and i take baclofen at night and whatever else i can to help me get to sleep.
i did try savella---and i was actually able to cut back just a little on my pain meds--but i can't afford it until we get insurance again. i am wondering if lyrica might work for me any better than the savella. cymbalta did nothing for me.
i know i need to improve my diet and get some regular exercise--i'm just not quite sure how to go about doing either one. i'm realistic enough to realize that this is probably never going to go away---but i do believe i can make it somewhat better---please tell me i'm not fooling myself here.
I have not been diagnosed with Fibro or CFS. My doctor did do the 11 point test and ruled it out. I have taken a couple Fibro questionnaires on the web, and scored high on them. I honestly have no clue as to what is going on with me. Before I even get into that, I do have to say, I have had a very low tolerance to pain, since I was a little girl.
Throughout my life, I have been being treated for depression and anxiety. Also throughout the years, you don't know how many times I have been to a doctor with something wrong, just to hear them say, " Oh, you have depression and anxiety " as if the illness, or what ever is all in my mind! So that was the answer to my headaches, along with being treated for IBS, and for the reason for my low tolerance to pain.
Approximately 3 years ago I went to the doctor for severe leg pain, and was diagnosed with sciatica. An MRI showed 3 compressed discs with the nerve being pinched in one.
After that things seemed to go down hill fast. I am just going to list what is happening.
1. Sever headache & facial pain, especially when I first wake up. I have to take my lyrica, and either 2 aspirin or if it is so bad, 1 vicodine. Sit there and massage my neck, jaw, cheeks, temples, and meditate for at least 15 minutes before I can even get out of the bed
2. I can't clean my house, just walking to the kitchen from my room, causes pain in my legs, and back. If I am doing dishes, I can wash a few, then have to go sit down for a few minutes, then go back to them. It takes me forever to do anything, and I will end up needing to take vicodine to be able to clean, then again later, because I will be in so much pain because of cleaning.
3. Fatique, I have no energy. My sleep patterns are all messed up. Sometimes I can't sleep and will be up all night, other times, I am ready to fall asleep early in the evening. But even if I go to sleep at a good time, and get a full 8 hours of sleep, ( a new symptom I have been having for the past 2 months ) I find myself nodding off. Usually this happens when I am doing something quiet. I have nodded off sitting up in bed watching tv, sitting at the comp doing whatever, even playing games that keep my interest, in the bathtub and folding my laundry. Some days I nod off 4 or 5 times, lasting any where from a few seconds, to an hour. I have to go to a sleep center in 2 weeks to see if they can help find out what is going on, Doctor thinks, sleep apnea and Narcolepsy.
4. I get leg and foot cramps. Plus I feel like someone is inserting an IV needle in the top of my foot or hand. ( IV's are painful to me ) I also get hot spots, usually in my leg. Where all of a sudden it feels like I had a real hot heating pad put on me. I will also get a sudden pain in my leg, feels as if a bone snapped in half, but that pain is gone as quick as it came on. These do not happen all at once.
5. For the last few months I have had problems with my right leg, and both feet swelling. Right now my right leg is twice the size of the other one, and has been that way for over a week. I asked my doctor what could be causing this, and he said he had no idea. Maybe too much salt. This comes and goes, but this is the longest it has lasted.
6. For a while my left eye kept twitching, that lasted for about a month, then stopped. But occasionally my eyes feel like someone shoves a toothpick in them. Again, a sudden pain, that ends just as fast.
7. Sometimes I get pains shooting down my leg, from my knee to my foot. Sometimes from my elbow to my fingers. Along with the pain in my arm, I sometimes feel like it is numb.
8. I have gained about 100 lbs in the last 3 years. I figured it was due to lack of being able to move around pain free ( so of course, I was not as active as I used to be ) and then I thought some of these symptoms were caused by the weight gain.
9. Now I am drooling. I am constantly wiping the corners of my mouth where the drool is coming out. I also have been choking on food a lot lately. Sometimes I will be chewing, and a little crumb seems to be sucked down my windpipe before I even start to swallow it.
I am sure there are things I am forgetting. All I know, is I am so tired of feeling this way, and not knowing what is wrong with me. I am tired of having to take this test or that test, and still not getting answers. I am tired of doctors thinking this is all in my head. I honestly don't know where to turn any more.
Throughout my life, I have been being treated for depression and anxiety. Also throughout the years, you don't know how many times I have been to a doctor with something wrong, just to hear them say, " Oh, you have depression and anxiety " as if the illness, or what ever is all in my mind! So that was the answer to my headaches, along with being treated for IBS, and for the reason for my low tolerance to pain.
Approximately 3 years ago I went to the doctor for severe leg pain, and was diagnosed with sciatica. An MRI showed 3 compressed discs with the nerve being pinched in one.
After that things seemed to go down hill fast. I am just going to list what is happening.
1. Sever headache & facial pain, especially when I first wake up. I have to take my lyrica, and either 2 aspirin or if it is so bad, 1 vicodine. Sit there and massage my neck, jaw, cheeks, temples, and meditate for at least 15 minutes before I can even get out of the bed
2. I can't clean my house, just walking to the kitchen from my room, causes pain in my legs, and back. If I am doing dishes, I can wash a few, then have to go sit down for a few minutes, then go back to them. It takes me forever to do anything, and I will end up needing to take vicodine to be able to clean, then again later, because I will be in so much pain because of cleaning.
3. Fatique, I have no energy. My sleep patterns are all messed up. Sometimes I can't sleep and will be up all night, other times, I am ready to fall asleep early in the evening. But even if I go to sleep at a good time, and get a full 8 hours of sleep, ( a new symptom I have been having for the past 2 months ) I find myself nodding off. Usually this happens when I am doing something quiet. I have nodded off sitting up in bed watching tv, sitting at the comp doing whatever, even playing games that keep my interest, in the bathtub and folding my laundry. Some days I nod off 4 or 5 times, lasting any where from a few seconds, to an hour. I have to go to a sleep center in 2 weeks to see if they can help find out what is going on, Doctor thinks, sleep apnea and Narcolepsy.
4. I get leg and foot cramps. Plus I feel like someone is inserting an IV needle in the top of my foot or hand. ( IV's are painful to me ) I also get hot spots, usually in my leg. Where all of a sudden it feels like I had a real hot heating pad put on me. I will also get a sudden pain in my leg, feels as if a bone snapped in half, but that pain is gone as quick as it came on. These do not happen all at once.
5. For the last few months I have had problems with my right leg, and both feet swelling. Right now my right leg is twice the size of the other one, and has been that way for over a week. I asked my doctor what could be causing this, and he said he had no idea. Maybe too much salt. This comes and goes, but this is the longest it has lasted.
6. For a while my left eye kept twitching, that lasted for about a month, then stopped. But occasionally my eyes feel like someone shoves a toothpick in them. Again, a sudden pain, that ends just as fast.
7. Sometimes I get pains shooting down my leg, from my knee to my foot. Sometimes from my elbow to my fingers. Along with the pain in my arm, I sometimes feel like it is numb.
8. I have gained about 100 lbs in the last 3 years. I figured it was due to lack of being able to move around pain free ( so of course, I was not as active as I used to be ) and then I thought some of these symptoms were caused by the weight gain.
9. Now I am drooling. I am constantly wiping the corners of my mouth where the drool is coming out. I also have been choking on food a lot lately. Sometimes I will be chewing, and a little crumb seems to be sucked down my windpipe before I even start to swallow it.
I am sure there are things I am forgetting. All I know, is I am so tired of feeling this way, and not knowing what is wrong with me. I am tired of having to take this test or that test, and still not getting answers. I am tired of doctors thinking this is all in my head. I honestly don't know where to turn any more.
Hello~Well, my suspicions were confirmed today, I had an Epstein Barr blood draw a few days ago, and it came back super high. It is not mono though as other factors are not present, but, the doctor did say it was the beginning of CFS. I have suspected Fibro or CFS for many months now as I have almost every symptom, from the nagging aches and pains to the sore throat that I have had off and on now for over 3 months; now it is confirmed. I am actually relieved, I know now that I am not going nuts and that all my horrible pains and such are not in my head.
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