Pain and weakness together

    • March 11, 2015 at 7:57 am

      I was diagnosed with CIDP in 2060, and treated at my local university hospital and the Mayo Clinic (by Dr. Kumar). IVIG treatments were strongly associated with improvement in strength. They were discontinued after 2 months. I rarely had pain, I had good mobility, strength, and little pain. I always took oxycodone for the pain.

      Now, my pain can reach intolerable levels (screaming into a pillow or in the car). Lately, I get pain in my feet that feels like someone is pinching one of my cold toes. The location changes all the time, with different toes affected or a different foot. This pain is oh, so awful.

      Now, here’s a new wrinkle. When this pain comes on, my legs become very weak. Often I cannot even lift a leg to begin walking. Oddly, if I see a line on the floor, I cannot step over it, unless I sort of swing one of my legs over the line.

      Ideas about what is going on?

    • GH
      March 11, 2015 at 10:25 am

      You mean 2006, I suppose.

      It seems like your CIDP is still active. Most people would be getting regular IvIg treatments to control it. Some would get plasma exchange. Are you not receiving any maintenance treatment?

      Oxycodone is not something you want to use for a long time. I used it until my CIDP was brought under control and I was glad to get off it.

    • jk
      March 11, 2015 at 1:54 pm

      Agree with and Add to what GH said- Why were your treatments discontinued?

    • March 11, 2015 at 2:58 pm

      The IVIG treatments were scheduled at the time of my release from the hospital. The plan was something like twice a week for several weeks, decreasing to once a week for several weeks, decreasing to once every two weeks in the last month. These were administered by a nurse who came to my house.

      After the last treatment, I must have had some follow up appointments that suggested that no further treatments were needed. I don’t remember the follow ups, but I am sure I must have had them.

      I had been improving ever since leaving Mayo, so I didn’t even consider whether I should continue the treatments or not.

    • jk
      March 11, 2015 at 7:43 pm

      Well, if you left the Hospital and Mayo Clinic back in 2006 and only now have intolerable pain, perhaps there is a different cause of the pain.

      Generally speaking, CIDP does not respond in such a short time (two months). Again, every person and every case is different.

    • March 11, 2015 at 8:34 pm

      Could I shift the emphasis now to the correlation of pain and weakness that I experience. For example, if I have a lot of pain this evening, my legs will be very weak. It will be difficult to rise from a seated position, and when I walk through the house, I touch surfaces (walls, table, chair, etc.) to prevent falling. But if I were to have very little pain, I can walk fairly normally, without touching anything. Is this common?

    • March 12, 2015 at 12:43 am

      An individual’s symptoms depend upon the affected nerves: autonomic, motor, or sensory, and where they are located within the body. Symptoms of peripheral neuropathy (PN) that involve the motor nerves might include muscle weakness, loss of coordination, or loss of balance. If an individual’s neuropathy involves sensory nerve damage (as in Myelin or Axon damage) he or she might experience symptoms such as numbness, tingling, burning, sensitivity to touch, or pain.

      Diabetic neuropathy symptoms might include numbness and tingling of extremities, loss of sensation, muscle weakness, burning or electric pain sensations, and a variety of other symptoms that can affect nearly every body system.

      Limitations caused by PN include a lessened ability to walk or stand and control muscle movements. In addition, many individuals who suffer from severe PN injure themselves without knowing it, and this can lead to worsening conditions. Chronic pain is also an issue for many people with PN, and this can have an effect on their ability to lead a normal life or work.

      If insurance is an issue for getting proper treatment: for disability applicants whose PN has affected their balance, coordination, muscle strength, muscle control, ability to walk or ability to stand effectively, Social Security will likely find them very limited in their ability to work. Whether Social Security will expect them to adjust to less demanding work depends on the skill level of their prior jobs and their age and education. For more information on how Social Security decides whether someone can return to their past work or less demanding work, see their website on how Social Security decides if you can work.

      If your autoimmune system is still producing antibodies that attack “self”, you may want to ask your doctor about trying Plasma Exchange (PE) treatments. This is the primary way of removing those antibodies from your system. IVIg, and often Prednisone, will stop your autoimmune system from producing more of those antibodies, but won’t remove what’s there, that’s the job of PE.

      Have you had a recent nerve conduction velocity and EMG study? How about a spinal fluid study? More about these and other tests can be found here:

      Have you tried Gabapentin (Neurontin) or Pregabalin (Lyrica) for your pain? Others on this forum have said Lyrica worked better than Neurontin for their GBS/CIDP. Some have reported relief using Amitriptyline (Elavil). Epidural injections or peripheral nerve blocks may be needed in some cases to help relieve sever pain. If you can, choose a pain center that has experience treating pain associated with peripheral neuropathy. See this link for some pain center ideas at a “GBS-CIDP center of excellence”:

      I have had little pain with my case of CIDP/MFS (onset 2008). I’m one of the more fortunate ones in this regard. I hope your pain and weakness can be reduced soon.

    • March 12, 2015 at 1:40 am

      Thank you for overview. What you write about PN just about covers it for me. I have been assuming that it is the term for a cluster of symptoms that can, in my case, be a consequence of CIDP, as well as diabetes. I have a good teaching job in a university, with excellent insurance. I have been in touch with the appropriate administrators on my options. 75% full disability or reduced hours is available. I am getting closer to retirement age, and the university is offering early retirement to others at a certain age.

      What you said about PE being used to eliminate existing antibodies is something I will look into. When I was first in the hospital, PE was the first plan of action, until a week or two later, when we discontinued it, for lack of effectiveness, and switched to IVIG.

      I have had 5 nerve conduction tests and one spinal fluid study.

      I didn’t find Gabapentin as useful as the oxys and, later, methadone. Lyrica was just too difficult for me to handle. Amitriptyline and Sertraline both help.

      Meanwhile, I will follow the links you posted, which look very good.

      Thanks very much.

    • March 12, 2015 at 9:48 pm

      For some more thoughts on pain management please search the forums for “pain” or read the following thread:

      If muscle cramping is sometimes an issue for you, maybe you can get some advice here: