anyone have leg or knee pain?

Have you had the leg and knee pain all along, Shirley? Or it has started again after not hurting for some time?

I do still get leg and knee pain sometimes but typically after engaging in a new activity or using stairs.

You wrote “quadriplegic,” so no use of arms either?

If you are having a significant increase in pain, you need to discuss with your neurologist. Some pain can persist for a long time and can come and go, but if you believe it is not merely normal variation but a real worsening of your condition, you must see a neurologist.

Shirley you have been dealing with this such a long time I know something else popping can be distressing I hope you have others around you to help keep your spirits up stay involved to the extent possible. Just a thought with the increase in knee and leg pain. Early on for me what helped me every bit as much as the meds was therapy. It may be that very gentle range of motion therapy could provide a measure of relief. Bear in mind though at first even if done very gently may possibly hurt even more but try to work through it and it may help. When in the hospital I looked forward to my wife and the therapist moving esp my legs it was helpful for me.Tho still my legs and just about every thing else hurts and limits activity and professional therapy is out of reach for me as I can’t work and have no insurance. I do hope you find relief and distraction from your pain and distress. Take care

I have thigh pain and horrible restless leg syndrome. I have an appt.(which took months to get) for her to try and find something to put me on.I have had balance therapy for a year and I try( notice I said try yoga !) I get back injections with nerve blocks every 6 weeks- and nothing. This doctor is my last avenue. Neurontin helps helps with the nerve endings give me the biting bee syndrome, and ropinerole for the restless legs. I feel like I’m loaded with drugs, and the doctor said it’s pills or pain. Anyone else ?

For some other possible solutions, or at least options for consideration, please read the following related posts:
https://forum.gbs-cidp.org/topic/foot-pain-and-numbness

I have to respond to this. I am a GBS/CIDP patient from a small town in Mississippi. I have constant pain in my legs. I first became ill in June 2013 so I am right at 2 years into this. I still take IvIGG every month, Lyrica for the shooting nerve pain and Norco for the pain. The Norco was at first given 4 times per day which did it’s duty and kept me out of severe pain. I was in a nursing home for a year and 1/2 relearning how to walk and use my arms again. When I was released my GP had to reduce my norco to 2 times a day because of Federal Drug stuff. This is not sufficient. I overtake it (3 times a day seems to work okay) so the last week or so of every month I have none so I take the heck out of IBU which doesn’t really help it. Last month, I had to take a urine drug test for the feds…I am worried that this month my Dr might not even write the script for me at all. My neurologist refuses to write any sort of pain meds and the pain clinics within 100 miles of me refuse to accept me because one I have medicaid and two they don’t know what to do with me. I have no adverse reactions from doing without this med for the last week or week 1/2 of every month. My in home nurse attests to that. Any info from anyone that might be able to help me? Seems my meds are pretty mild compared to what some of you are taking…