Extreme pain from hips to toes, help

[Loosing_all_hope]

Started approx. 18 months ago with muscle aching behind both knees.  I had ignored it ( once before but only lasted 2 days) but this time it was going up to hips.  Over the next several months I was not only in extreme pain but also family was noticing I was not as stable on my feet and loosing weight.  I was now able to feel bones I never knew existed i.e. Hips lol. A girl my size hasn't felt hips in years if ever lol. But now I know exactly how high those hip bones real go.  I went from a size 14 to a 6 now since one dr put me on some steroids I have gained some back.  Now from hips down you can feel every part of the bones. It truly feels like there is barely any muscle left, and the pain is so extreme.  I can't stress enough how I'm not the type to complain about anything .  In the past I pushed through everything, my child has her own painful days so to complain is like a slap in her face I feel(she has RA and a inoperable brain tumor)but even before she was diagnosed I never complained.  My muscle weakness has grown to a degree that I can no longer walk very well without help and Drs have prescribed me a wheelchair.  I have done physical therapy without any help at all, almost seems that it has sped up the deteriorating of the muscles.  I have seen a neurologist and they do not believe it is MS. My rheumatologist said before any testing that he believed it was polymyositis however my blood work didn't completely go along with that. The one thing that has been elevated from day one is the CRP now it has just gradually increased being now 6.3 and I believe it started at a 5.1 over a 6 month period. As far as all the symptoms shoulder pain, fatigue, hand pain with major stiffness in the morning and well as jaw pain when chewing.  Now the low dose of steroids has helped that pain so that it is livable now.  What isn't is the bone pain in my hips, legs, ankles and feet.  I am on extreme pain meds just to  function and some days that doesn't even touch it.  I have seen several doctors in different fields to rule things out more or less but with the latest dr telling me this is in my head I truly have just about lost all hope that anyone will ever help me.  There is no reason in the world why I would or anyone else for that matter want to live life the way I do now.  I was very active with  my children, worked a full time job that I loved very much.  My legs shake from weakness whether I try to stand or just laying in bed. What's still very puzzling that may or may not have an involvement in this however no dr has even remotely entertained that it could be is that for over 30 years I have suffered from migraines and since this has started I have only had 3 and not one has been to the intense degree that they used to be.   Please any help, advice,anything would be appreciated.

[Tuckamore]

Hi Losing All Hope,

Please excuse my tardy response. I am so very sorry to hear about your physical decline and severe pain. My heart goes out to you! Frightening is that you do not have a DX (diagnosis).

Are you still monitoring our site? I hope so. Please let me know and we can discuss your situation. I am not a physician - or an expert in anything. We are here to offer our support and share information.

I'll look forward to hearing from you soon.

Warm Regards,
~Tuck