Generalized pain

[charslight]

Hi,
I am new to this, but feel as if I have hit a road block. For 20 years I have had sever right hip pain.  Feels like a burning poker in my hip.  It comes and goes, as it pleases.  it is sort of under control with cortisone shots every 6 months or so but they don't always work. i have also had on and off back pain, some work injuries to my back, bad subluxation in my neck, and a bulging disk in L1- L2.  In addition I got plantar facsiitis which was treated, but I also sometimes have swollen fingers, and sharp pains in those joints.  I was started on tramadol for these sharp burning pains, and the hip pain.  I have been on Tramadol for about 3 years now.  I stopped once for about a year, but when  I had the DVT/ PE last year I had to go back on it.  For a year now I have been taking tramadol.  Every time I try to wean myself off it I get this  severe deep burning leg pain.  Worse in the evening.  A couple of weeks after the DVT I developed this awful pain in my hamstrings and calf muscles.  At the same time I would get exhausted.  I am a nurse, and standing on my feet all day is very painful.  
I take 1 50 mg tramadol every 6  - 8 hours. Two months ago I weaned myself down to one and half in 24 hours.  All of a sudden the pain started and I became exhausted.  This time the pain was severe burning in the legs, back, arms, shoulders.  When this happened before I tried prednisone and it worked.  This time it didn't work, so now I am taking vicodiin 1 -2 along with the tramadol.  I am so afraid of getting addicted, in fact I think I already am.
i want to know
1. What is the cause of the pain.  X-rays, labs, are all negative except for a frequently high D-dimer
2. How I can get rid of it without taking narcotics.  Tylenol, motrin, naprosen aspirin don't work.
3. Massage doesn't help.  Sometimes heat does, sometimes cold does.
Anyway, I just need some ideas.  I am 47, slim, eat well, drink one glass of wine every couple of days.  I used to run 5 miles 3 times a day.  Lately I cannot do anything.  I did take Accutane  3 times in the early 90's.  Up until 9 years ago, I did not take a single medication. I am a normally active person, have children, and dogs, and work 3 - 4 days a week.  I have started going to bed early just to avoid the pain.  I take trazodone to help me sleep.
I would appreciate some advice.  My GP is great, I have been to a rheumatologist, orthopod, hematologist, chiropractor, and a spinal doctor.  Nada....  Sorry this is so long winded.

[Kathi50]

I have had similar things going on for 7 years; the majority spinal related.  Long story.  But read up on Central Pain Syndrome at painonline.org.  My Neurologist originally diagnosed me (after spinal fusions) with Idiopathic Small Fiber PN.  But since that time she has changed it more recently to CPS.  Anyway, ALL my labs were negative as well.  I still have issues with my cervical and lumbar spine but not anything that warrants anymore surgery.  And I have to tell you...sometimes there is NO reason for this stuff or at least the docs can't find anything.  So, no matter what it is...it is ALL neuropathic pain...you have to treat the symptoms and hope like heck it goes away someday.  Anyway, if you read about these syndromes you can get a better understanding of why sometimes opiates and/or anti-convulsants don't always work.  I take Vicodin 1-2 a day and one .5mg of Klonopin.  It is the only combo that has worked to take the edge off.   I stopped spinning my wheels when after two years, there was just no real answer for it.  Although I do have my theories.  Hang in there but I would suggest seeing a Neurologist.  

[charslight]

I looked it up, and I don't think that is what I have.  I am not sensitive to touch, my skin and joints are intact, in fact I am hypermobile in my joints. ESRD is normal..  I do have the history of clotting, and also interestingly enough bruising.  I am not on anticoagulants anymore - only baby aspiring. But thanks for the suggestion.

[charslight]

Thanks for the suggestion - I haven't heard of that disorder - I will put it on my list.  

[RSDS_Pain]

Have your docs. ruled out Reflex Sympathetic Dystrophy Syndrome also known as Complex Regional Pain Syndrome (RSDS / CRPS)? It is supposed to be a rare neuro-vascular syndrome, but is probably underdiagnosed.