Joint Pains

I have pain in most of my joints. In January of 2009 I awoke one morning with terrible pain and swelling at the base of my left thumb. A couple of days later, it spread to the right thumb. It came and went over the years before settling in pretty constantly for the last six months or so. I also have experienced hip, knee, shoulder, back, and especially neck pain and headaches. I began suffering increased CIDP symptoms throughout 2009, and was diagnosed in April of 2010. I was on IVIG until January of this year. Interestingly, the IVIG seemed to really help with the joint pain, as well as the pain, numbness, and tingling in my legs and feet.

I think that to some extent we with CIDP are all unique. It never seems to present the exact same symptoms to any two people. But you and your joint pain are not alone. You might want to check with a rheumatologist to rule out any other possible cause of your joint pain, such as rheumatoid arthritis. Check into getting onto an anti-inflammatory medication. I take meloxicam every day to help with my joint pain.

My theory is that the joint pain associated with CIDP is caused by some auto-immune response, as is the CIDP itself.

goodney, has the meloxicam helped with the headaches? Spine pain is an issue for us and I just assume the inflamation on the spine is what is causing the headaches????? Does the meloxicam help with the spine pain? Regarding joint pain, that was for the first three years for us, hips, knees, shoulders, everywhere. That pain as well as fatigue has all but disappeared, finally. this oct will be 5 years. But we cannot get rid of the spine and headache issue. Occassionally if there is a really bad cold some joint pain will surface (not typical flu joint pain, cidp joint pain)

bny—is the joint pain new? are you on any medications–could it be a side effect from meds? I know in the beginning you had a pretty good response to ivig, is it still working for you?
maybe the weakened muscles are putting more stress on the joints therefore causing joint pain. I dont have joint pain, but if i go for a walk on hard surfaces I get lower back pain. This is due to the weakened feet and ankles causing the feet to hit the ground harder and the lower back feeling the impact with every step. If i walk in the sand on the side of the road it helps a lot, or doing exercises where my feet stay in one spot (stepper, bike)
But it does make sense, that the inflammation that damages the nerves could also effect the joints. You have a lot going on, with the cidp, joints and eyes. Is the ivig helping with all of these?
I agree with goodney—cidp effects everyone so differently –it’s hard to come up with a “normal” for it. And YESSS you are unique!!! 🙂

I think the meloxicam helps, how much is hard to say. As you know, some days for some reason are just better/worse than others. I believe stress plays a large role in my joint pain and headaches. Unfortunately, being a trial lawyer, I am in one of the most stressful jobs on the planet, and I really believe the constant stress I have been under for a number of years triggered the onset of my CIDP.

Dawn Kevies Mom, your point about inflammation on the spine causing headaches is a fascinating one. I always thought the headaches were likely caused by muscle tension due to stress, but inflammation could very well be the culprit, as it is in so many health issues and diseases, including CIDP.

It’s a crazy disease, this CIDP. One never knows what to expect. I heard someone say that Multiple Sclerosis is a different disease every day. I feel the same way about CIDP.

I was thinking of posting on just this issue. As many of you know I have dealt with CIDP since 1989. It started out sensory and has gotten worse over time and now I have muscular dysfunction as well as numbness. This past year the numbness has become more pronounced up my thighs and my legs get tired really fast. I can still walk, but about 200 yards at a time is my max. I use a cane to do that. Recently my hip and buttocks on my left side has become terribly pained. I can barely lift my lag up to walk. The pain is in the joint. I also suffer severe pain in my feet and neuropathic pain as well. I am careful to not “bundle” pain and blame it all on CIDP, but I wonder about this one. Any likely responses?

My thought is if the symptoms are still progressing then the current treatment is not working. Even if something worked for a while doesn’t mean it will work forever, or that you can’t relapse.
The immune system is complicated, affected by everything from stress to sickness. What works for one may or may not work for another.
If I’ve learned anything since being diagnosed almost three years ago (3 years in June) it’s to be more in charge of myself medically. Keep yourself informed of what’s available for us for the cidp and don’t be afraid to speak up for yourself and ask for the next step if your current treatment isn’t working. I feel I waited too long for the ivig to work for me, 2 1/2 years before trying PE and am just now in the process of trying an immunosuppressant. Be pushy, don’t feel like you’re offending the Dr by making suggestions or questioning your current treatment if it isn’t effective. It is our life, we only get one—-once we walk out of that Dr’s office they are on to the next patient. So call, be persistant, don’t sit back and wait, especially if you are getting worse.

Last night the barometer went down (rain/humidity) and my nerve pain soared at 1:00 AM. My arms, ribcage, calves, feet and every joint too were on fire. The pain was so intense I had a momentary thought of going to the nearby ER but I know I’d be laughed out of there. The times are few but when they happen I cringe and hold on. I do have break thru pain meds but they don’t always do the job.

One thing that does cause me to feel stressed is my struggle to breath due to my weakened diaphragm (CIDP). I did see 2 new bruised toes today. Loss count of how many broken toes I’ve had.

It is a good idea to have any new problems checked out because they may not always be due to CIDP. I’ve found it’s a good idea to bring a friend along to your doctor’s visit as your advocate. This disease morphs…seems to change and present itself as something different. Just know you’re not alone and can come here to compare and feel understood.

Limekat

I had treatment yesterday too! I hope the new schedule helps- how are you tolerating treatments?

I am so glad you had a good response to your treatment- it is a long day- I can only go to 60 ccs/ hour. Luckily my infusion center is only 20 minutes drive . My reflexes are pretty normal now – the only time I lost them is when I was first hospitalized/ diagnosed with GBS at this point I was essentially paralyzed from chest down could not move legs and could not walk- since then have never gotten that weak again ( have been treated for relapses) and have not lost reflexes again. My neurologist jokes that my reflexes are mocking him. In terms of skin I do get weird rashes from time to time. Don’t forget your skin is your largest immune organ and people with autoimmune disease get all sorts of weird rashes . Add to that the meds which can cause rashes- I get something called solar urticaria which is like hives from the sun . I feel like living with autoimmune disease including CIDP is like a the line from Forest Gump- its like a box of chocolates- you never know what your are going to get! Hope your good days keep coming.

check out raynauds for the purple color….. or on a funnier note maybe you are related to those blue people in kentucky. i think there are only two people left. it is some sort of blood anomoly that makes them appear blue. really, google it. something with the color blue and kentucky….kentucky blue grass, blue blood and blue grass music????

just being silly about the kentucky stuff, but seriously check out raynauds, it is another autoimmune, typically hands are blue/purple.