Do any of you have bone deep cramps? I get cramps that feel like the bone is aching. And deep muscle twitches? These are new for me and I don't remember reading about them before.

Billye

I know the feeling, Biilye!
Have you tried Magnesium, or Quinine?
(a good G&T 'll give a low dose of quinine,
or leave out the gin!)

Yes, I've been taking the Slo-Mag. One pill a day. But it doesn't seem to be getting any better.

Billye

When I describe that feeling to the neuro, well, just looks at me as if I'd come off a 10 mile marathon saying my feet hurt!

Only things that I do are eat a bananna, and if it's worse, get some 'bitter-lemon' tonic [has little bits of quinine in it]. Mind over matter or really works, I don't know.

But I'm betting you aren't a happy camper in the meantime. Wish I could take some of your pain for you, Billye.

Soft hugs and fuzzies your way - j

I have very deep aches in my arms. I know it's not the bone, so I think it's deep tissue. I have always had these deep deep aches. I have read they are PN related somewhere. I even mention the deep aches in my other post for the "Roll Call" thread. I take calcium/magnesium but it's often the luck of the draw on how much pain I feel in any given day. I think I also may suffer TOS from herniated C-spine disc and stenosis. This adds to the upper body pain.

I also read that you have an apptment at Mayo Clinic. Congrats on that!! You said that you could'nt sit,and I can't remember to what extent you have PN, I apologise. Do you have PN in the lower half of your body? Have you done any physical therapy?

with the worse being my feet, legs and hips. My hands have gotten painful in the last two weeks. There are days it affects my face and upper back. Pretty much the only place it doesn't affect is my torso in the front. We are fairly sure it is small fiber painful polyneuropathy. With a Pudendal neuropathy thrown in to make it interesting. Now if that isn't enough fun and pain for you, throw in Rheumatoid Arthritis of my hands, lumbar spine,hips and neck. And for a little spice to the mix, toss in a handful of Sjogrens Syndrome with all the dried up spots. Now that is a party!!!

Yes, I'm hoping to be able to make the trip to Mayo. I am unable to take the meds for neuropathy because of the drying effects of the medicine. I go to the YMCA swimming pool three times a week to walk in the water. I can't walk anywere else very well and I don't sit at all because of the Pudendal neuropathy.
Billye

Sometimes my discs in my lumbar inflame so much that I also cannot sit down. In March 2005 when my PN came on, coincidentally I had the worst flare from my lumbar disc ever. I neither could sit or stand for 10 days. I was in agonising pain,and I had the initial onset of bodywide PN. Needless to say I was a wreck and very much in pain. I really hope you are on some sort of pain relief.

Also my pain levels were very close to 10 all the time, and now it's down to 4 or 5 on a daily basis. But the bodywide distribution of PN makes life very challenging to say the least. I am 33 years old, and I constantly wonder what's going to happen in 10 years or 15 or even 20. Scared to think about it sometimes.

My Sjorgrens came first then that sneaky old Pn. When my son was at home
he said it was deep tissue...He;s a massage therapatist,did deepp tissue
massage on legs arms and hands...I also take calcium-magenesium. Sue

to hear you are feeling so badly - you mentioned Mayo - do you think you'll go back soon? Are any of your local doctors maybe recommending IVIG at this point?

Hoping you get some relief from the pain and sending positive thoughts your way

You know, Billye. I have taken so many different medications since this started, sometimes I can't even remember what helped what... I cannot say that it felt like bone pain though-more like deep, miserable cramping up and down the back. You may want to ask someone to check your electrolytes though...

I want to say my Neurologist then prescribed Baclofen.

Cathie

P.S. Just out of curiousity, did the Prednisone help with any of this stuff?