Back pain with CIDP?
March 15, 2015 at 1:21 pm
I have severe pain in my feet and legs, some muscle weakness in my arms and legs for the past 1 1/2 years. But one of my major complaints is severe lower back pain that sometimes even radiates into my buttocks and down my legs. This pain comes and goes but it can be so bad that I have difficulty walking. I have had MRI’s and seen many doctors and there is nothing wrong with my spine, and I don’t have sciatica.
Is back pain another symptom of CIDP?
March 15, 2015 at 4:40 pm
Pain generally is a symptom of CIDP, but also of many other things. Your disorder cannot be diagnosed here, but only by a neurologist. The MRI won’t help diagnose CIDP, but other tests will.
March 16, 2015 at 7:40 pm
Thank you GH for your response.
I realize this is not a place to get diagnosed but it is a place to get information about CIDP. My question was do people with CIDP experience back pain as well as weakness.
I have a neurologist that I have been seeing for a few years and I will discuss the possibility of CIDP with him when I see him next month. From what I’ve read CIDP is not on most doctors radar so I want to go in with as much knowledge as I can.
If there is any one else out there that is willing to be helpful and talk about their experience and what kinds of pain they feel with CIDP I would appreciate it. I’m just looking for support and looking to get my question answered.
March 16, 2015 at 9:58 pm
I have back pain. I also have CIDP. In my opinion, and only for whatever that is worth, there is absolutely no correlation between my back pain and my CIDP. With the exception of the low back fatigue my bilateral foot drop causes.
NINDS, the National Institute of Neurological Disorders and Stroke says this about CIDP: “What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.”
There is no mention of back pain in that discussion. Of course, every case is different. However, the nerve damage caused by CIDP usually does not affect the torso.
There is a 2010 website link from a GBS-CIDP forum user (yes, the link still works) back in 2010 to this article by Dr. Richard Lewis. Dr. Lewis is considered an expert on CIDP. The user suggested printing this article to give to your doctor.
don’t overlook the next section link at the bottom of each page. There at least 9 pages of wonderful information.
Your comment about “cidp is not on most doctors (even most neurologists) radar” is accurate. Do yourself a favor and find a doctor who has years of radar with CIDP. This website lists several Centers of Excellence. I would do whatever it took to get to one.
Don’t delay. It is diagnosis time as GH stated. Some damage from CIDP is irreversible and takes place over time. Time you don’t have.
March 17, 2015 at 9:36 am
thank you JK that was very helpful. I will read over that article and bring it with me to my doctor’s appt.
March 20, 2015 at 8:33 am
Hello Timtcee, I was recently diagnosed with CIDP – and yes back pain is part of it for me. Interesting thing is I never connected my various pains to each other. I thought my back was bothering me because I had back surgery a long time ago. Since my surgery I have had little to no pain at all. But, in the last year the pain has returned – but different. My Neurologist ran an upper and lower EMG and told me I had sciatic issues (among other things that left me speechless as in “how did you know). That surprised me because I don’t feel any sciatic pain (as I did a long time ago).
I thought these various issues were due to aging. Guess not. My diagnosis came after a hard fought battle – I hope your road is an easy one. 🙂 Good luck.
March 20, 2015 at 9:26 am
CIDPWhat….thank you so much. I was beginning to think my back pain might be “old age” as well. I’ve been getting a lot of “I can’t diagnose you here, consult a neurologist” from this GBS/CIDP group. I’m not looking for a diagnosis from people just wanted to know if others with CIDP have back pain as well.
I REALLY, REALLY appreciate your feed back.
good luck to you as well.
March 20, 2015 at 9:41 am
You’re welcome. For me it started in my knees – a place I have never had pain in before. Over time the pains spread to other areas – so I naturally thought it was aging. Then everything just started going down hill. I used to be very active – so some of it I blamed on my need for physical exertion. LOL.
You’re general practicioner may not diagnose this as CIDP – you really should look into a Neurologist. My GP originally diagnosed me with Fibromyalgia… Which (from what I hear) is very common – or MS. My Neurologist had heard of CIDP but never diagnosed anyone with it before. So, my diagnosis came as a big shock to us both.
I understand the need for answers. 🙂 Good luck to you too!!! But in all sincerity – I pray you don’t have CIDP. But, it doesn’t hurt to rule it out.
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