Looking for help...I am 33 years old. I have Systemic Lupus and fibromyalgia. 3 years ago had a bad lupus flare and was put on 60mg of prednisone for a year and a half. After 2 mo on the prednisone I developed avascular necrosis in my knees, then hips. I had both my hips replaced, but they don't want to mess with my knees too at my age...Before all this happened (3 years ago) I was very active, walking, yoga, etc. I was confined to a wheelchair for 6mo before hip replacements, and am still very limited to weight bearing activities due to the avascular necrosis in the knees. I don't know if it's the fibro causing it or what, but for the last 3 years my body has been covered with knots. It's in my back, but from the waist down it's insane. My fiance' will massage my legs for me (God bless him). He says it starts out with a million tiny knots, as he massages it will turn into larger knots, and then it becomes long rounded hard muscle knot. He refers to it as feelinging like a big worm under my skin-they are near impossible to break up. He once massaged me for 2 and a half hours and the next day the knots were back to the original state. It is extremely painful, and very frustrating. I'm not on any meds for fibro (bad reaction to lyrica). Don't even know if this is fibro. I am on pretty strong pain meds for the AVN pain, and it does nothing for my knots. I am miserable- ALL THE TIME. Can someone please tell me what these knots are and how to treat them? I use a heating pad, hot baths, epsom salt and mineral oil menthol bath oil, massage, icy hot and other topicals, have tried acupuncture. At my wit's end, chronic pain is so draining...please help
I get the knots with my fibro (I also have developing Lupus). I have found relief with magnesium and with seeing a massage therapist practiced in myofascial release. With fibro the body seems to lay down lots of fascial tissue which grabs onto the muscles. Also try D-Ribose to help with your pain and exhaustion.
Sorry no answer for treatment of the knots other than accupuncture which works for me but wears off after three days or so. How much can you afford is the accupuncture question. But, I have FM and have kept it in what I call remission following the advice and treatment regiman of Harvey Diamond, Fit for Life author, from his book "The Fibromyalgia/Lupus Chronic Fatigue Syndrome Connection: Their cause and how to Overcome them". Hope that help you as much as it has me...God Bless
I have had the knots. My massage therapist that I have had for 8 years, and I was referred to by my rheumatologist, showed me how to take care of them using trigger point therapy. For those I can't reach, I have taught my husband how to do them, otherwise the massage therapist takes care of it.
What I think it is, some type of fluid from the disorder that gathers in sacs. Doing the trigger point therapy releases it. That is my perception and nothing medical.
My body is flooded with the virus that causes Mono. I had Mono in 1985 and the virus has grown within me since then; that plus a Magnesium deficiency causes knots all over my body. They are so prevalent my wife can see them just by looking at me.
There is no cure for me and no solution. I live with terrible pain everyday AND I had to give up my career of nearly 18 years.I have been diagnosed with FM.
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