No diagnosis, I'm in pain mgmt, any help appreciated

[juncogal]

Over 2 yrs ago I had sudden onset of burning pain in both lower legs, nothing showed up on xrays, had ultrasound of legs also, and biopsy of muscle then my legs felt like something was crawling inside them, at times my arms will hurt with internal spasms also,  seen vascular Dr. just about every Dr. with nothing found, I am not diabetic. A year later lower back pain started, it starts out as a dull pain  and it does feel like something is infected, like a pulse feeling this all gets worse and will cause me to get nausea. I cannot walk without the meds, had xrays of back. Nothing is being found and I am tired of taking all of these pills they just make me tired and not myself. I've been to a rheumy, nothing found in blood, he suggests its auto immune related but nothing is showing up on all of the tests. More recent found out my iron was low and just finished receiving IV iron, that could have been caused by Prilosec tho.
Prednisone helped the most, I had a normal life when the dose was higher but the Drs. do not want me on this and I am trying my best to taper off which is really hard, I know Prednisone works better than the narcotics.

My current pain meds are
Fentanyl patch 12.5
Oxycodone 5 mg 3x
Gabapentin 300 mg 3x
Prednisone 2.5 4x
Aleve 3-4 a day

I've never been sick, the onset of all of this was sudden, out of the blue, I feel like I am a prisoner to what ever is wrong and the pain meds. I feel the Drs. do not believe me because nothing is being found. Could something be hiding what is wrong? Its been no picnic and paying for Pain Mgmt and the drugs are really hitting me hard.

[ChristNonsense]

A few thoughts, forgive me, some are "way out there." Consider these to be 'aphorisms' which may or may not relate to you.

1.) The body has a magical way of healing itself.

2.) Have you ever considered the possibility, under a doctor's supervision, to cease *ALL* drugs? And, let your body 'heal itself?'

3.) Throwing all kinds of opiates and nerve drugs at something that is undiagnosed... hmm... may obfuscate the cause/source?

4.) You may wish to study/memorize/contemplate a spinal-nerve chart (like here: http://drhassard.com/spine-nerve-chat-and-possible-symptoms/), you might be able to make a "good guess" which nerves you think are affecting your symptoms.

5.) Consider #1, again. But, with faith in your own body. Remember the concepts of homeostasis -- bringing back to equal, bringing back to even. What is your body reacting to?

[fntn]

Yes, numbness throughout the lower half mostly and feet/toes that don't like sheets. I found a great pair of heavy but loose socks that I wear to bed always and now I can tolerate a sheet no problem while I sleep. Before that it was a no-sheet operation only. I get no style points for my socks but. I will fight you to the death for them!

[notverysmart1]

I am so sorry and understand what you are going through. I have been having issues the last 4 years and have had a million tests that have shown nothing until recently. I got sick four years ago and was under severe stress. Either the sickness itself or it activated an autoimmune issue because I haven't been right since. I have burning skin and pain and joint issues. I have been on gabepentin and tramadol for several years and recently I had my legs and arms cramp up and major pain and numbness. Prednisone stopped most of the severe cramping but the numbness and pain continues and a nerve test from the Nuerolgist showed nerve damage that's getting worse in my feet. I am upping my Gabepentin and the pain is getting so bad that I have to take a percoset to even sleep because the bedding touching my feet hurts so bad. The worst thing is no one knows what's wrong. I was trying to decrease the prednisone cause it's a bad med to be on but I may have pto stay on it. It's the only thing that's really helped. I think I am going to lose my career over this if I can't get my feet and legs right. I am scared. So I am here if any of you need to talk.

[fntn]

Unfortunately, autoimmune diseases can take years to properly diagnose and some can even be seronegative. I have autoimmune diseases and suffer a lot of fullbody muscle and joint pain as well. And yes, prednisone helps in my case as well. They can see some of the joints showing erosional degeneration. Hopefully they can get you a diagnosis soon to at least help your Pain mgmt doc do his thing.

[remar]

I'm so sorry you're going through this. It's even harder when you don't have a definite diagnosis.
Have you had an MRI on your back and neck yet? If not, you may want to talk to your Dr about having this yest done.