Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 09-09-2012, 06:17 PM #11
annie3940 annie3940 is offline
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Quote:
Originally Posted by jess18 View Post
Well, it has been a very long year and a half. It began last June and took months before I was diagnosed with pudendal neuralgia. I now take Gabapentin 3300mg,Elavil 50, and Valium 20mg to manage that.
Since last Novemeber, I have had one symptom after another:
tendonitis 2xs, ankle tendonitis, costochondritis, bursitis in hips, morning stiffness where my feet joints hurt and my muscles feel like they were wound up in the back of my thighs. some other symptoms, but the worst has been the last 4 months with the pain from the lower half of my body down. I had pain in the buttocks, but it has lessened some. The worst is the 4 months of leg pain 24/7 eminating from the back of my thighs down to my feet. The pain is bad.
I went from dr to dr and all it was treating the various symptoms as they occured. Husband and I went to the Mayo clinc and it was amazing.
They did every possible test. I have had a spine xray ( normal SI joints), MRI ( fibroid I need to speak to gyne about), but mainly 2 pages of bloodwork that checked all: connective tissue diseases: lupus, scleroderma, srjgrones, mixed connective tissue etc, A-ANCA, P-ANCA tests specific scary vasculitides..Lyme disease panel, infection, thyroid, hormones, cholesterol, hdl, ldl, anything you can think of. I was mainly worried of the vasculitis and the autoimmune disease. They did ANA test negative as well. ALL of the bloodwork was negative. They did an EMG/Nerve conduction that was normal, no neuropathy in my legs. Met with the Neurologist no neuro symptoms. The did a vascular ultrasound: normal, no vasculitis.
SOrry this is so long. ... I have Chronic Myofascial Pain Syndrome. My rheumy thinks it could evolve into Fibro. But that was the diagnosis from the Mayo. So now, of course the pain is the same as it was as before we went, but now I know what is causing it. Honestly, I feel like a wind up doll with my legmuscles in the morning they hurt so badly.
The next step is Pain Management, and I am tryig to go through their Pain Managment program. My question is:
If you have Fibro or Myofasical Pain Syndrome what do you do for Pain?
My PCP before my diagnosis who was treating my symptoms, raised my Oxycontin to 40mg. It doesnt do much if anything for this leg pain.

I take hot baths, use heating pads those kind of things, relaxation tapes... but I need more pain control. Ideas please!! I cant have this kind of leg pain.
I stretch too. I use epson salts. I think I am going to ask for Savella and see if that works. Otherwise I may try Cymbalta. please help. thanks jess

I have also been on a million meds, felt like a guinea pig. Finally dilaudid in small doses helps. I have also looked into botox for myofascial pain. It works longer. I have emapthy for you. I have been to hell and back and it took me over 4 years to have the team I have now. I have a neuroscientist, a primary, a pharmacoligt, endo and last but no least a counselor that specializes in pain.
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Old 02-27-2013, 07:56 PM #12
biobabe biobabe is offline
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Default Wow! So familiar!

Wow Jess!

Your story sounds so familiar to mine! I went from doctor to doctor for years in an attempt to diagnose the burning pain I had in the back of my thighs near the junction of the glutes and hamstrings.

Just recently, I have been diagnosed with myofascial pain syndrome (MPS) due to an imbalance of my thigh, glute, and hamstring muscles due to the activities I was doing.

What really helps me is doing self-trigger point massages and getting trigger point massages monthly. Using a foam roller to loosen the tightness also helps. I was also told not to stretch unless I release my trigger points.

Hope this helps! Good luck! I feel you pain.
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