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Slipping farther and farther with no grip! Help!

Posted by @aliciafreeman in Digestive Health, Sep 2, 2011

I have severe Fibromyagia; wide-spread. I have tried several medications, but none that helped enough to deal with awful side-effects. I find myself feeling more and more useless; physically and emotionally. I am also dealing with acute bursitis in both shoulders and mainly in elbows, which prevents me from being 'normal'. Can anyone suggest anything that may help me ease the pain and try to live as normal as possible?

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Posted by @maridenise, Sep 18, 2011

I completely understand, can you tell me what the pain in your shoulder and elbow was like? I am wondering if you and I have the same issue. typically with the Fibro I will have a flair up and it will settle in my body somewhere and last about 3 months then go away. My shoulder and elbow pain is not going away. So I am at the point I need to go to the Dr. but don't really have the money for all the therapy.


Posted by @woolie, Sep 29, 2011

Hi Alicia! I already put a reply on your site but it doesn't seem to have 'taken'. I have had Fibro for eleven years and am still struggling , especially as I get older. It took a while to find a doctor who helped a bit, a Rheumatologist. Everyone else seemed to not know or say it was all in my head! You can imagine how many meds I have tried! I am presently taking Cymgen (an anti-depressant that helps the pain), Purblocka, which slows the system down in order to feel less pain, and Trepeline, which is taken around eight in the evening which gives you a good nights sleep, which is very important and also deals with pain. (5-10mg. less is better as it can cause constipation. Best to eat your five a day! The Cymgen will lift your spirits. My problem is that I cannot stand for long as the muscles in my leg burn. This also happens with our son of 40, who also has it. I have to get down on the floor and crawl very often which at my age of 63 is not good. My walking can be quite uncoordinated too. My pain gets worse as the weather gets worse. Please feel free to stay in touch. One feels really isolated with this. I want to get the Fibro book advertised by the Mayo Clinic but see it is priced in dollars & I live in S. Africa. Side effects are normal with Fibro and can be very counter productive. Sometimes it can be helpful to go on Cymgen for a year or so and gradually come off as it does cause side effects. Molipaxin causes less, but can make you sleepy in the morning. Ask about these medications at your Rheumatologist.


Posted by @elaine66, Oct 11, 2011

I came down with fibromyalgia in 1986 following the trauma of my dad and 17 year old son suddenly. This was before the CDC recognized it as a disorder (1993). The only person I listen to today re: fibro or chronic fatigue syndrome is the doctor who wrote "From Fatigued to Fantastic", Dr. Teitelbaum (sp??). Email me your address and I will fwd his newsletter to you. My email is Dr. T. had chronic fatigue syndrome while in med school and had to take a leave for a year. He has been there and is very committed to natural remedies. I cannot take chemical drugs. I have had more success with Dr. T. than all of the other tdoctors put together (and you can imagine how many doctors I saw).


Posted by @deekrull, Oct 2, 2011

Hi Alicia,
I have had fibromyalgia for over 30 years. I will be 65 this Jan and I am very active and in control of my pain most of the time. You have to take the whole person approach to getting better: mind, body, eating habits, exercise and meds. Things that make fibromyalgia worse are caffeine, sodas, smoking, and no exercise. Gentle exercise like stretching at first, pool therapy or basic yoga. You will hurt a lot at first but eventually the pain will get better. I am a vegan vegetarian not everyone can handle that but the less you eat meat of any kind the better you will feel. When I was diagnosed I was given 50mg of elevil to be taken at bedtime. I don't sleep without it and I am still on it. I am also taking neurontin for nerve pain but it helps with the fibro. as well. The less medication you take the better because one of the piggy-back auto-immune syndromes is chronic fatigue, if you take too many pain meds it will make it worse and you are fighting a loosing battle. If you don't move you hurt worse. I didn't learn all of these things all at once it has taken me years of research and reading to learn how to control seven different auto-immune syndromes. Unfortunately it is just the way it is and the only way to have a somewhat normal life, whatever that means for you, is to fight it. If you want to know more about me go to my profile. My main purpose here is first to help with my experience and second I need someone to talk to too. Hang in there and don't give up.

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