I don't have pain in joints. However, a new neurologist told me his other patients have , "pain in their joints". How? As a nerve diseases, that effects the muscles, how are the joints involved? Do you have pain in your joints? I don't mean the pain of old age or sports pain in joints, but the clamp down of stiff muscles after IvIg relapses or progressive, uncontrolled CIDP.
I only have stiff muscles and the resulting weakness... I mean really stiff to the point where the stiffness prevents me from getting out of a chair, running, walking, enjoying any movement, etc. IvIg cures this in me.
I have specific and horrible proximal to distal muscle stiffness that effects the entire muscle between the proximal and distal nerve connections on my arms and legs (and dozens of other muscle groups, neck, fingers, foot, toes, etc.).
Are you calling this type of stiffness your pain? Of course it is painful, but first and foremost it is stiffness! Now I'm wondering, after this last consult, if CIDP is what I have, or if this new neurologist has dealt with this disease before.
I saw the hesitation in his eyes when the subject of 240 grams each of Ig came up and the money it cost. After eight months of IvIG with a different HMO, this new HMO neurologist said, "maybe we try PE to see if you really have CIDP.... ???!!!!"
Dumbfounded!
Hi Estaban,
I know what you mean by stiffness. Some days my whole body feels stiff where I describe this disorder as a "disease of stiffness." Everything feels like it's hard to bend, including my abdominal muscles, which I've talked about on the forums before--the binder feeling. I don't really call the stiffness "painful" but it certainly is uncomfortable. What I am dealing with today (and why I am stuck in front of my computer instead of out enjoying 4th of July festivities) is pain in my left foot, ankle, and calf that seemed to come on overnight when I was sleeping. Granted, I did a lot yesterday, i.e. some mild exercise biking, and swimming, but I don't know why it always seems I have "payback" to my body whenever I do anything slightly active! I'm also starting to think I should never lie down to sleep at night because when I awake in the morning, I put my feet on the floor and when I go to walk I have to do a mental assessment of what hurts, how difficult it will be to go about my day, and most importantly if I can walk or not! I then pull out the menthol liniment and sit in my bedside chair and rub any of the offending areas. I have been having IVIG every 3 weeks for 8 months and I am still having these episodes, so I'm thinking I am one of the people whom it does not work for...so far my doc has not recommended plasma exchange though. Quite frankly, I think she has given up on me since neither the IVIG or prednisone has worked. Trying not to get down about it, but I hate not being able to walk and get on with my day!
I think it transference the pain is felt in the joints but is actually linked to a problem elsewhere
DISEASE OF STIFFNESS... you wrote... so, from that definition, are you saying that stiffness is the cause of weakness and pain? I think it is, and CIDP should really be renamed, The Disease of Stiffness.
Lower neuron disease, like ALS and MS and CIDP, all have stiffness first, then weakness, then twitching. Stiffness is the first manifestation because the voltage-threshold has not been reached in all necessary sectors of upper-neuron signaled actions to the muscle fiber... I'm guessing at this last bit, am I right?
Cookie said:
Hi Estaban,
I know what you mean by stiffness. Some days my whole body feels stiff where I describe this disorder as a "disease of stiffness." Everything feels like it's hard to bend, including my abdominal muscles, which I've talked about on the forums before--the binder feeling. I don't really call the stiffness "painful" but it certainly is uncomfortable. What I am dealing with today (and why I am stuck in front of my computer instead of out enjoying 4th of July festivities) is pain in my left foot, ankle, and calf that seemed to come on overnight when I was sleeping. Granted, I did a lot yesterday, i.e. some mild exercise biking, and swimming, but I don't know why it always seems I have "payback" to my body whenever I do anything slightly active! I'm also starting to think I should never lie down to sleep at night because when I awake in the morning, I put my feet on the floor and when I go to walk I have to do a mental assessment of what hurts, how difficult it will be to go about my day, and most importantly if I can walk or not! I then pull out the menthol liniment and sit in my bedside chair and rub any of the offending areas. I have been having IVIG every 3 weeks for 8 months and I am still having these episodes, so I'm thinking I am one of the people whom it does not work for...so far my doc has not recommended plasma exchange though. Quite frankly, I think she has given up on me since neither the IVIG or prednisone has worked. Trying not to get down about it, but I hate not being able to walk and get on with my day!
I'm not sure of the physiology behind the muscles and I wish there were more exercise physiologists who specialize in this disorder to help us all keep active. I know personally, I had the numbness and tingling first in my lower extremities, then started to have severe muscle spasms, like bad charley horses, in both lower calves. I attributed it to not drinking enough fluids or having enough potassium, so I drank more water and added a banana a day to my diet. I was doing spin biking every day for at leas 60 minutes at the time and was also working 12 hour shifts on my feet most of the time. This had been my normal routine for years though, but I figured it was just that I was getting older. After the symptoms started getting bothersome and I finally went to a neurologist, he said I should stop exercising so vigorously because I was overexciting the muscles over their threshold and pushing them into the spasms. I now know I should not have stopped--I lost all of the muscle mass and strength in my calves very quickly after that. I swear if I would've kept up working out like that the muscles would've just kept going--I could've endured the cramping, what is hard to accept is how my legs are now, weak and flaccid. Live and learn I guess...Now I have been swimming and I hope I can't hurt myself this way, but again today I'm suffering with this swollen left ankle that has me sitting in my chair on a beautiful sunny morning because I woke up and can't bear weight on it yet. I'm waiting for the NSAIDS to kick in!
estaban said:
DISEASE OF STIFFNESS... you wrote... so, from that definition, are you saying that stiffness is the cause of weakness and pain? I think it is, and CIDP should really be renamed, The Disease of Stiffness.
Lower neuron disease, like ALS and MS and CIDP, all have stiffness first, then weakness, then twitching. Stiffness is the first manifestation because the voltage-threshold has not been reached in all necessary sectors of upper-neuron signaled actions to the muscle fiber... I'm guessing at this last bit, am I right?
Cookie said:
Hi Estaban,
I know what you mean by stiffness. Some days my whole body feels stiff where I describe this disorder as a "disease of stiffness." Everything feels like it's hard to bend, including my abdominal muscles, which I've talked about on the forums before--the binder feeling. I don't really call the stiffness "painful" but it certainly is uncomfortable. What I am dealing with today (and why I am stuck in front of my computer instead of out enjoying 4th of July festivities) is pain in my left foot, ankle, and calf that seemed to come on overnight when I was sleeping. Granted, I did a lot yesterday, i.e. some mild exercise biking, and swimming, but I don't know why it always seems I have "payback" to my body whenever I do anything slightly active! I'm also starting to think I should never lie down to sleep at night because when I awake in the morning, I put my feet on the floor and when I go to walk I have to do a mental assessment of what hurts, how difficult it will be to go about my day, and most importantly if I can walk or not! I then pull out the menthol liniment and sit in my bedside chair and rub any of the offending areas. I have been having IVIG every 3 weeks for 8 months and I am still having these episodes, so I'm thinking I am one of the people whom it does not work for...so far my doc has not recommended plasma exchange though. Quite frankly, I think she has given up on me since neither the IVIG or prednisone has worked. Trying not to get down about it, but I hate not being able to walk and get on with my day!
Aloha Cookie and others...
Pain in joints? I've read this in the literature, and my new neurologist mentioned this as the complaint his CIDP patients told him about.
I've can't remember ever having joint pain. Even as a marathon runner, I never suffered joint pain, every other type of pain... lol. What gives? Do you experience CIDP joint pains?