Undiagnosed and tired of the pain.
 

Hi there. I have been a member on this board, as I have pudendal neuropathy, which I have under control ( knocks wood) with Gabapentin, Elavil and Valium. However, since November I have been to the doctor with SI joint inflammation and instability, back pain and these symptoms:
achilles tendonitis 2xs
shoulder capsulitis
fhl/ankle tendonitis
severe back pain
hip bursitis
costochondritis ( inflammation of the cartiledge of rib cage)
upper back pain
foot rash ( biopsied: purpura with inflammation)
presently: costo, severe thigh pain ( over 2 months), foot pain, buttock pain

Everything is from inflammation. I have had bloodwork for autoimmune as ANA tested positive. No connective tissue: Sergjorns(sp), scerloderma, lupus, mixed connective tissue.....
So, I wait another 3.5 weeks until I see rheumatologist again. Bloodwork normal, no elevated muscle enzymes, no elevated systemic sed rate, rheum factor, crp.... I am feeling so hopeless lately. The back of my thighs feel like someone is stripping them with a knife, my feet hurt, and when I get out of bed in the morning I am stiff in the back, hips, feet, legs.
I dont know what this is . I am neg for rheumatoid arthritis, the only thing that may be possible is ankylosing spondylitis. My PT wrote down initially lumbar lordosis, and scoliosis in addition to the SI inflammation... this was in November.
I take Celebrex ( and it worked for 5 days for the stiffness) now not as much, and Oxycontin for pain. Lately I am worried, as I am undiagnosed yet, am in pain, and the drugs I am taking arent taking care of this pain, yet you would think so if it was inflammation. I don't think these NSAIDS are working at all..... what to do? Any thoughts. thank you.

I have had bloodtests run, ANA check, and tes

Keep at it! Do not give up, .....
 

unless you want to give up on life! I mean that from my heart.
It took me over a YEAR to get a diagnosis of CIDP and thus IVIG.... something you might want to think about? But, first a diagnosis MUST be achieved!
Here is a key site used for those w/Peripheral Neuropathy issues, and some others....http://neuromuscular.wustl.edu/alfindex.htm
As you can see? There are LOTS of things to consider! This site has a thumbnail sketch of what seem like a zillion neuro problems, and, you brain can go totally numb going thru them all. It IS a good thing to go thru though to see just how difficult it can be sorting out nerve, immune and structural body issues out. Really tho, many nerve problems tend to be 'clustered' into groups. I hope you don't quit and get the best diagnosis and treatment you can.
BTW? Do not EVER say 'I learned it on the 'web''!? I always say instead, 'I've read about this from the 'NIH or Pub med' and go from there, or that's a concern maybe, and what about this other?'. Maybe take a good look at family history? Sometimes clues can be there [in my case NOT] and can open new doors for more tests and maybe, no-definitely the right diagnosis!
It IS very hard at first, to learn all the terms and aspects of 'doc speak'. I have to tell you? IF I Can learn IT? Anyone can if they truly care about themselves.
You find out just how strong you really are in the process....and, it IS OK to cry and go 'Why Me?' now and then. But then, I always respond to myself? Why NOT?!!!!!
No matter how much help or support you have [or not?], you can and will go thru heaps of things in your mind and go heaps of circles like a hamster on a wheel. It comes with the territory. Just learn as much as YOU can to learn how to ask the right questions to get you where you MUST go. I am no doc, but I have been thru that 'system' and can see where you are at rite now. I am in a far better place for the 'keeping at it'!
ONly YOU know how wrong things are - just find the bestest words to say what all is wrong that the docs can relate to.
Hope always! - j

Ask to be tested for viruses like Epstein Barr, HHV6. I have had a viral infection for 6 months now and the inflammation and nerve pain it is causing has been terrible. But taking valtrex has helped me. Its funny even my PT who works with me on my muscle and inflammation issues was amazed that much of it was being caused by a virus, especially the capsulitis.

Couldn' hurt to be tested for for it and maybe it could be causing some of the problems. Some of these viruses get into the central nervous system.

Psoratic Arthritis?
 

I'm so sorry you've been going through all that! Do you know much about psoratic arthritis? I've been reading about that...the achilles pain is what makes me think about that!

Hope you're doing well!