Fibromyalgia

Posted by janasr @janasr, Jan 8, 2012

I had a complete hysterectomy about 6 mos ago. Never could get off the pain meds because of aching all over like the flu. DR’s are treating me for fibromyalgia. Would like to meet some people who are going through some of the same stuff. No one here seems to understand how debilitating this is. The constant pain and knowing that it will never go away completely is very depressing.

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

My total hysterectomy has caused me bone pain that led to ruptured back discs, and I swear; it caused my osteoarthritis. There is an organization call her or hers. They have proof that hysterectomies cause a lot of issues involved with pain. Don’t give up, but please watch the pain med use. DON’T OVERDUE IT..

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I had a complete hysterectomy in June of 1994. By fall I was very achey & it continued to get worse. I was diagnosed with Fibromyalgia. I have delt with it for a long time now. What helped me most: 1) Relefan (a pain med like motrin but easy on the stomach), Cymbalta, Ultram for when the pain got really bad warm water exercises, a hot tub (you can get a perscription & claim it on your income tax as a medical expense) or jacuzzi tub or walk in tub with jets. Make sure it has a heater to keep the water warm!, regular massage therapy, chiropractic treatments, and a good comfortable matress like the Sleep Number beds (you can adjust the firmness depending on how you feel).

The National Fibromyalgia Association and Fibromyalgia Network are 2 great sites to go to for forums, chatting and info. There are also groups on facebook.

Hope that helps 🙂

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@sweetsaur

My total hysterectomy has caused me bone pain that led to ruptured back discs, and I swear; it caused my osteoarthritis. There is an organization call her or hers. They have proof that hysterectomies cause a lot of issues involved with pain. Don’t give up, but please watch the pain med use. DON’T OVERDUE IT..

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How did you know it was bone pain? I feel like my pain is in the bone sometimes but not sure. DR’s seem to dismiss that

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I believe any shock to the autoimmune system can trigger fibro, either a mental or physical shock, My fibro began after a bad fall and the shattering of a foot. I was finally diagnosed at the Univery of Washington Hospital in Seattle. At that time I had all 18 trigger points. Much more than these 18 achy points have happened to me in the last 18 or so years since being diagnosed. I spent almost 4 weeks in bed because my left side rib area felt like it had been kicked by a mule. I thought I had broken ribs, yet nothing had happened. Lots of tests were run, including heat tests, Recently the skin on the top of both my hands burns like they are been held in scalding hot water for way to long, They burn bad, This has happened with my feet as well. Does not hurt to use them, however, It is just the nerve ending in the skin, I have talked wsith people who have fibro this has happened to only in different parts of the body, Fibro is a bad connection between the brain and the nerves, therefore many situations will come along that make no since to us. We just need to all log what we feel so they have something printed up they can use to figure this crazy disease out! I and now 67 and have had the condition for 20 years and it only becomes worse, I moved from Washington State to the deserts of Arixona for more warnth which helps me. I take sleeping pills in order to sleep but still never feel rested enough. Lyrica did not work for me. I am taking low dose of cymbalta. The med that hepens me deal with most of my pain is vicodin. It releives my pain long enough for me to have 3 or 4 good hours a day to get the things I must do done, I spend days, sometimes weeks, getting nothing done and being depressed. BTW I receiced my early medical retirement and Social Suriety shortly after I had to quit working. Does my story compare to any others> Is there a clinic we can go to for more news of Fibromyalgia? I am interested in trying anything, Good louck to you all………………….hugs, Caren

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I developed fibromyalgia ten years ago and could barely get out of bed. This was a few years after a complete hysterectomy as well. I have sisters who are identical twins and they are 10 years older than I am. They both suffered from fibromyalgia too but decided to go to UCLA Medical Center and have a complete workup to try ease the pain. After 6 weeks of various analyses, the doctor gave them an rx for 25 mg. of amitriptyline, 5 mg. Ambien and 1 Vicodin at night. After a week, they could function again during the day. I asked her to send me enough for 4 nights so I could try it (I know, I know…not the right thing to do but I was desperate). I got relief immediately and have remained on that combination for 6 years. I stopped taking the Vicodin after 3 months and just take an Aleve tablet. I have a male friend who developed fibromyalgia (rarer for men than women) and he also took this combination and can function again. You might ask your doctor if he can prescribe this for you and try it. It just might help you too. Hang in there!

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@caren

I believe any shock to the autoimmune system can trigger fibro, either a mental or physical shock, My fibro began after a bad fall and the shattering of a foot. I was finally diagnosed at the Univery of Washington Hospital in Seattle. At that time I had all 18 trigger points. Much more than these 18 achy points have happened to me in the last 18 or so years since being diagnosed. I spent almost 4 weeks in bed because my left side rib area felt like it had been kicked by a mule. I thought I had broken ribs, yet nothing had happened. Lots of tests were run, including heat tests, Recently the skin on the top of both my hands burns like they are been held in scalding hot water for way to long, They burn bad, This has happened with my feet as well. Does not hurt to use them, however, It is just the nerve ending in the skin, I have talked wsith people who have fibro this has happened to only in different parts of the body, Fibro is a bad connection between the brain and the nerves, therefore many situations will come along that make no since to us. We just need to all log what we feel so they have something printed up they can use to figure this crazy disease out! I and now 67 and have had the condition for 20 years and it only becomes worse, I moved from Washington State to the deserts of Arixona for more warnth which helps me. I take sleeping pills in order to sleep but still never feel rested enough. Lyrica did not work for me. I am taking low dose of cymbalta. The med that hepens me deal with most of my pain is vicodin. It releives my pain long enough for me to have 3 or 4 good hours a day to get the things I must do done, I spend days, sometimes weeks, getting nothing done and being depressed. BTW I receiced my early medical retirement and Social Suriety shortly after I had to quit working. Does my story compare to any others> Is there a clinic we can go to for more news of Fibromyalgia? I am interested in trying anything, Good louck to you all………………….hugs, Caren

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I also have the burning sensation in my hands and feet. I just told my husband yesterday I felt like they were on fire. I have had it now for 21 years and it has destroyed my life basically. I can no longer work, limited house work and NO Drs. will give me pain meds. I can’t believe how everyone can get it. I have asked and tried for 15 years and nobody will give me anything!

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I also got Fibromyalgia after having( Ovarian) surgery 1981. I’ve been living with this for what seems to be a lifetime. I maintain a high protein low carb diet which is the only diet that helps reduce(not take away) the pain, fatigue, and cognitive brain fogginess. I cut down to part time work as full time was way to hard on me. I have IBS,irritable bladder,TMJ,Migraine variant(manifests as numbness, parethesia(pins and needles) mild chronic headaches,extreme fatigue,classic flu like aches and pains(intensifies with being touched)and cognitive deficits(unable to find words,finish thoughts and sentences, loosing things constantly and so on. I take Amantidine 100mg twice daily for the fatigue, tylenol for pain as needed, Vitamins C, D3, Calcium, Fish oil, and Multivitamin daily. I have Valuim that I can take during major flares which helps with muscle pain and to relax and get rest. Major flares occur when I have additional stressors in my life, weather changes,working extra, or being ill with colds etc. I wish all of you better days ahead 🙂 Gentle hugs to all!!!!!! I recommend joining Fibromyalgia sites on Facebook as it has helped me by knowing there are others with same symptoms and struggles and support is given.

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@nursenell92

I also got Fibromyalgia after having( Ovarian) surgery 1981. I’ve been living with this for what seems to be a lifetime. I maintain a high protein low carb diet which is the only diet that helps reduce(not take away) the pain, fatigue, and cognitive brain fogginess. I cut down to part time work as full time was way to hard on me. I have IBS,irritable bladder,TMJ,Migraine variant(manifests as numbness, parethesia(pins and needles) mild chronic headaches,extreme fatigue,classic flu like aches and pains(intensifies with being touched)and cognitive deficits(unable to find words,finish thoughts and sentences, loosing things constantly and so on. I take Amantidine 100mg twice daily for the fatigue, tylenol for pain as needed, Vitamins C, D3, Calcium, Fish oil, and Multivitamin daily. I have Valuim that I can take during major flares which helps with muscle pain and to relax and get rest. Major flares occur when I have additional stressors in my life, weather changes,working extra, or being ill with colds etc. I wish all of you better days ahead 🙂 Gentle hugs to all!!!!!! I recommend joining Fibromyalgia sites on Facebook as it has helped me by knowing there are others with same symptoms and struggles and support is given.

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I really can relate to your problems and hope you are feeling better. I have not been on this site for a while, but all the symptoms you describe are exacly as mine. IBS, FIBRO,TMJ,MIGRAINE, .Ive been told by a dr that the ibs and fibromyalgia go hand in hand. When I have bad episodes they are exactly as you describe I feel like I cannot get out of bed, but strangely enough for me if I move bout, take a real hot bath and a muscle relaxant, it starts to ease up. Drs want to put me on antidepressants and Im reluctant to do so and I trly to avoid hard core pain meds, vicodin very rarely. I do feel that the fibro has some relation to your stress level and that it reacts to temperature changes (warmer being best) Thank God in that respect I live in Calif and I suffer more in winter. I will consider the suggestion on the lady whomentioned a hot tub because for me water exercise did help.
I hope that all these comments can bring more awareness and research on this disease that is so debilitating. Godd luck to all of you

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@tiggerbear

I also have the burning sensation in my hands and feet. I just told my husband yesterday I felt like they were on fire. I have had it now for 21 years and it has destroyed my life basically. I can no longer work, limited house work and NO Drs. will give me pain meds. I can’t believe how everyone can get it. I have asked and tried for 15 years and nobody will give me anything!

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I have had FM for roughly 17 years and this year got a separate diagnosis for burning and painful swelling in my hands and feet: erythromelalgia. It’s rare, but it’s real. Mayo Clinic has a specialist. Check it out!

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Morning ….I looked back on the threads for fibro and see that at least one of them mentioned amitriptyline being of great use with the pain as well as many other symptoms of this relentless illness. My husband had it for over 30 years….(he passed away a year ago from complications of PD) and oh so many trials of different meds as well as exercise and really living, day to day without such terrible pains and exhaustion. If he didn't take amitriptyline daily, as well as a bit of a pain reducer…he took 1/2 of a vicodin when he just couldn't handle the body pains and chills. This combo allowed him to live and find peace and comfort daily.
His symptoms started after he was diagnosed with feline toxoplasmosis…a few months after he fell ill and had cleaned up cat feces from a rental we had. Then he was diagnosed with Epstein Barr….then fibro. It was a long and difficult journey, for sure. He was a trooper that never complained..but was always aware of his physical limits..overdoing really caused havoc. After many medications and tests..'amitriptyline' was a real lifesaver for him. These days, with all the research on CBD and it's healing abilities…one might look into this type of modality for relief of many of the debilitating symptoms. CBD can be purchased online if a dispensary is not available to you. There is no THC in it. Our bodies are designed to recognize CBD and its many benefits. I wish you the best.

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