I have experienced what felt like deep bone pain, but now I'm not sure if it wasn't actually sort of referred muscle pain. But in either case, if there's nothing actually wrong at the site of the pain, then it's neuropathic.
In that case, Lyrica or Neurontin usually helps. Lyrica's web site says that up to 400 mg/day can be given. I take 100 twice a day. So maybe you're on the low side of effective dosage. Please see Health Pages. There are 2 excellent entries about neuropathic pain.
Another thing to try is the addition of a small dose of a tricyclic anti-depressant to your usual pain dosage. I take 25 mg of amitriptyline (Elavil) at bedtime. It's supposed to help with sleep, but actually is often given to sort of boost the pain med. You should explore all these options with your doctor.
Just remember that you need time to build up the dosage. Too much too soon and the side effects will get you. I know it's hard to do but give your med time.
Keep us posted and hang in there. You're still on this side of the deep end :-)
ess
Thanks for the response! I considered referred muscle pain since I've stepped up the PT again but massage usually relieves the muscular pain and/ cramping. Nothing seems to help this pain. Both my local neuro and my academic neuro beleive its neuropathic simply by history although the academic neuro suggested I get my Vit. D checked as a low value can cause bone pain. Labs to be draw with new rheumy on Friday...if I make it that long. Hubby has been great at trying to massage and relieve pain (his advantage is I don't keep him awake squirming and moaning in pain). Guess I'll call neuro tomorrow for input.
BTW, can't take Elavil, already tried, Sjogren's causes a dry mouth and Elavil was unbearable due to the increased cotton mouth feeling. Could barely swallow. A year or more ago, I was taking Lyrica 75 mg three times/day and humming along nicely. Felt really good so we decided to back it down and stop. So ,as I write this, guess I just realized that I have confirmed two separate attacks, separated in time. Will definitely share with neuro. Sorry about the typos...sleep deprivation.
Thanks for the reassurance I'm still on this side of the deep end :-)
Rendean
Sounds like you're covering all the bases. It's better to have a plan that to just flounder. Or at least that philosophy has always helped me.
While you're having Vit. D checked, get a B12 check too. Low B12 causes lots of stuff, and is a huge MS mimic.
ess
Thanks. The B12 has been checked before , only once was it low and then it was borderline. Took shots. Most recent 6-8 months ago was normal.
So if I have a plan, I won't "flounder" and wind up in the "deep end". Sorry, for bad puns. Can I blame sleep deprivation on that too???
Rendean
First I have no ms dx, however I have had bone pain and it was my low vit. d levels. May not be your case at all but I thought I would mention it. I have posted about Vit D before, it is critical to muscle function and the lack of it can cause bone pain. Now, off the soap box ...LOL Hopefully you will find something to help!
Best wishes
Tracy