Cramps
 

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!)

Magnesium
 

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

Billye

So, I am NOT alone!
 

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

Hi Silverlady
 

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?

I have pretty much body wide PN
 

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

Sorry to hear how painful it is 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.

Billye
 

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

Billy, Sorry
 

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:hug:

Cramps... Yuk!
 

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?

answers
 

This is an old thread and so much has changed. I got very active for awhile after I came back from Mayo and did the physical therapy for two weeks. I almost had a life. Then this bone breaking thing started. I've developed a stress fracture in my left ankle, then one in my right fore-foot, then last week was diagnosed with one in my thoracic spine and yesterday they x-rayed me for one in my left hip. This morning it feels as if it is my lower back, can't move without pain, getting up and down is really awful. I'm not sure if the hip could cause this or not. As you can imagine, Billye's not a happy camper. Diagnosis of this last one is still up in the air. Pain is an issue too. The PN is really flared up and screaming....along with the bone pain.

But thanks to all of you for answers. The saga continues.
Billye

Billye I'm finding that...
 

the PN pain escalates big time when getting those 'stress' fractures. Seems like any time I step wrong on a little pebble I fracture something, somewhere. I hate to tell you it doesn't come down a notch for about a month. SIGH.

I'm working w/an endo to find the right combo of calcium and Vit D supplements to bring those #'s up to anything measurable. Apparently my meds' combo is taking it out faster than I'm putting it in. Don't know about you, but I do not envision myself going around for the rest of my life in a variety of "Air-Casts"! So, I'm off to acquire some different combos of the aboves to see if anything can be improved [while I can?] I'll let you know in about 7 weeks after the changes and F/U testings. This doc's promised to bring out the bigger stuff if there's no improvement. I just hate adding things on top of things and then more things! The pill count is getting ridiculously 'up there'. There HAS to be some simpler solutions out there, doesn't there?

Don't get discouraged about 'starting over' AGAIN. You have to! I find that each new time starting, I've got to go at a SLOWER pace each time. Don't know about YOU but I want it all NOW?

:Heart: Keep up good heart and mind, maybe we'll both improve, and I'm betting that you'll do it faster than I do! - j

So sorry...
 

This sounds just terrible. I hope you will get some relief soon.

I want to say that one of my "numerous" docs also prescribed Robaxin at one time for cramping, also trigger point injections... I have had so much crap prescribed that my liver and kidneys probably groan when they see a new pill coming their way...

The reason I keep asking about electrolytes, is because some imbalances, potassium, for example, can cause muscle cramping... I did not remember you mentioning that as part of the upcoming bloodwork.

It is my understanding that in PN, the nerves either hypofunction or hyperfunction (or both). I do not have enough knowledge to put all of this together, but I do know the muscles are innervated by nerves. If the muscles are inflammed or the nerves are malfunctioning at the neuromuscular junction, perhaps this is why you are having such severe cramping... If it were me, I would see if there is something other than Klonopin that will calm down the nerves.

I feel so helpless when I read about this... Wish I could do something...

Much love,

Cathie

With so many complaining of this type of pain it must be some sort of spring fever PN.:eek: I am slowly stopping all my medications for PN and thought this was a side effect, now after reading your posts I can conclude there is no connection. Wishing you all better days