I was diagnosed with GBS in March 2013 after a further 3 relapses within the first 3 months I was then diagnosed with CIDP. I am on the way to recovery, I can now walk and do most daily activities.
I still suffer from severe pain. Tingling in the hands and feet. I take Lyrica which seems to help with this but the feeling has not entirely gone away. I have IVIG monthly.
I also experience all over body aches and am on a Norspan patch. I feel extended pain when being touched too hard or injuring myself. My Neurologist says that the symptoms of aching pain are not neuropathic and are not a symptom of CIDP.
Does anyone else experience this? I have heard that following a viral infection you can get fibromyalgia. I’m not sure what the diagnosis for this is and would love to hear anyone elses experience with pain.
My Neuro says the exact same thing about pain. Funny how nearly everyone here has complaints about pain, and Neuros say different. I have muscle cramps/pain and on Oxycodone for relief. The nerve pain is there, but far more tolerable.
It’s painful to be grabbed too hard, especially on the legs! But the pain is constant, my neuro has never told me it isn’t part of the disease! She always asks me the pain level! I hope you find the right combo of meds because the pain will always be there, just depends how much your pain will be!
Good luck to you, don’t do too much, please listen to your body and rest!
I get muscle cramps and burning sensations that are painful my neuro put me on gralise with an added 200 mg of gabepentine my general practitioner added cymbalta and hydracodone as needed. Pain is part if the disease. Or I am missing a diagnosis . Lol
I have aching pain! My legs will ache and crackle with pain-- I have CIDP. Then again my legs will also shoot lightning like a taser that explodes in my feet… Pain with CIDP can be many things!!! I’m in a local group and we all marvel at how different our symptoms can be! Just like you and I are different people- our CIDP can be different-- that’s how I see it!
We all complain of pain and nobody seems to do anything about it. I'm on a fentanyl patch and take hydrocone and I get no relief. I have pain in my legs mostly, buttocks and hips but sometimes in the middle of the night I'll wake up and be in so much pain all over my whole body I literally cannot move. Since I have been diagnosed I haven't been able to talk to my neurologist about the pain or symptoms I am having. I last saw him Nov 2, had the nerve conduction test and was called on the 18th with the diagnosis. Pretty much everything else had been ruled out by seeing an orthopedist for the hip pain, and a neurosurgeon to make sure I didn't have any problems with my lower back or tangled nerves in the area that could be causing the pain. So yes Jessica C. I feel your pain and I feel it a lot!
I have a few friends on here that helped me realize though that I needed to keep hope and get up. I have not had any treatment and have only been diagnosed through a nerve conduction test. I've finally and hope this next appointment sticks with my neurologist on April 22.
Sounds to me as if your neurologist is using you as a drug dart board. Cymbaltin turned me into a Mr. Hyde, horrible anti-depressant.
Gapapentin didn't work for me until I hit the max dose of 3600 mg/day (@ 6 -2-10 o'clocks). Sometimes I take more with no side effects... yet.
Robert Martin said:
I get muscle cramps and burning sensations that are painful my neuro put me on gralise with an added 200 mg of gabepentine my general practitioner added cymbalta and hydracodone as needed. Pain is part if the disease. Or I am missing a diagnosis . Lol