April 14, 2012 at 2:46 am
I have been having joint pains for a while (at only 31, it’s not to be expected for this much!). I kept writing it off to old injuries, until almost every joint was affected and no longer just the old injuries. They started me on plaquenil a few weeks ago in case it’s sjogrens or something like that, but I mentioned this to the infusion nurse, and she said that she hears most of her CIDP patients talk about joint pains! Do any of yall have them? If so, what in the world causes them I wonder?
Another wierd happening- When I use my limbs more they become much more tingly and numb.. I work on a computer at times at work and when using the mouse the parts of my skin that ar on the mouse go so numb and burn, it’s really odd! Anyone have this?
Thanks in advance, I’m just curious if this is all a part of the whole CIDP thing or if i’m just unique! 🙂
AnonymousApril 14, 2012 at 2:19 pm
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.
April 14, 2012 at 3:18 pm
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)
April 15, 2012 at 1:10 am
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!!! 🙂
AnonymousApril 15, 2012 at 3:54 pm
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.
April 16, 2012 at 8:07 pm
Wow.. I am sorry anyone else has any aches and pains, but it is nice to know that I’m not alone! The IVIG does seem to help with it, as it wears off the pains get worse and into more joints!?!! This whole thing is so odd!
Lori- nope not new, but it has gotten worse as time went on.. I agree, I thought it was just weaknened muscles stressing the joints too! In fact at first kept chalking it all up to old injuries until I realized I haven’t injured almost every joint! I have had wrist pain for a while now- over a year. I noticed a while back when I went to crawl after my daughter I coudln’t lean on my hand due to the wrist pain.. then the other wrist and so forth. I wasn’t on meds back then, and then it was just IVIG for a while, now its plaquenil and lyrica as well (the lyrica helps me keep my sanity, as I just want to crawl out of my own skin with the sensations I have). The IVIG DEFINTELY helps quite a bit… but not nearly as much as it did that 2nd time.. They increased my dose to 48g (I weigh 130) and that does help it last longer – up until only a day or two before the next infusion and a couple of times i didn’t even feel it wear off!! However, I keep having set backs/relapses…. I got a cold with fever near the end of the 2nd IVIG that worked so well and had a “relapse” which hit me hard and fast… Gradually I have been doing much better again (I could barely walk after that due to hip weakness, swallowing etc all very weak), but now I walk no problem.. Then I got meningitis the infusion before last grrr (we increased the rate, and I had fallen asleep thanks to the benadryl- woke up with a headache.. and well felt pretty ill for a good week and IVIG didn’t work as well).. then this last time it worked great, UNTIL I got a three day fever and cold.. thought i got out without a relapse/worsening until a few days ago CRAZY numbness in both feet at work.. a few hours later it hit my hands and went up to my back.. heart rate increased and everything!!! Now I feel like someone injected lidocaine in my feet and hands..and my back feels wet all the time?!!?! I sure don’t like being abnormal when it comes to medical stuff!!! I want to be straight forward boring, not exciting!!
AnonymousApril 18, 2012 at 7:15 pm
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?
April 19, 2012 at 12:38 am
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.
AnonymousApril 19, 2012 at 2:17 am
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.
April 19, 2012 at 3:45 pm
Thanks so much yall!! Limekat- I broke my toe about 8 weeks ago, and have stubbed many more since this all began! I have a lot of bruises from knees down, and I used to not bruise easily.. my proprioception of my entire body is just off I guess haha.. I run into so many things!! I also had difficulty breathing, very much so, before my first round of IVIG (tha’ts why they admitted me, that and substantial generalized weakness), that has thankfully resolved for the most part! sorry to hear your struggling with that!
I knew I needed more frequent IVIG, but finally talked to my dr (i’m so sick of seeing/talking to them about this all, and just didnt’ want to take the time for more infusions), but they changed it to every 2 weeks now. I’m getting another treatment at this very moment! ! Hopefully every 2 weeks will do the trick! I sure hope so! I’m glad the dr’s are at least listening and being proactive when I tell them that I am having a set back etc.!
Thanks again so much yall!! I really really appreciate it!
April 20, 2012 at 11:40 am
I had treatment yesterday too! I hope the new schedule helps- how are you tolerating treatments?
April 25, 2012 at 6:07 pm
Thanks!!! I hope so too!! This last IVIG seemed to help already- the burning/sensory syptoms are greatly improved and my hips even better! I got to run with my kiddos in the park the other day without any difficulty- it was AMAZING!!! 🙂 I am SOOO thankful for that! I tolerate the treatments pretty well, unfortuantely I can’t go above 80/hr or I get aseptic meningitis.. ugh.. we tried 100 for only 2 hours and got meningitis from that (not quite as bad as when I was in the hospital, but still not fun and it lasted a good week of misery, plus it seems to make that round of IVIG not work as well). SOOO we have to go slow, which takes FOREVER! I asked my dr about home health or an infusion center closer to home (its an hour and a half drive in the morning with traffic), but haven’t heard back.. its a LONG day! I still get headaches, but no longer get chest pain and the rash that I used to get (the first three treatments I got blisters on my palms and feet and a rash all over my body and pretty good chest pain with the infusions and for about two days after- WIERD)! .. so that’s good! It even helped with my voice this past treatment (i felt like I had a bubble on my vocal cord for a couple of weeks, that I could resolve with clearing my throat for a few seconds), but that was gone after 4 days of this last treatment! 🙂 I tell ya this thing is so wierd!!
Another wierd thing I noticed with this last “relapse” was when the sun would hit my most affected areas of sensory symptoms- it would cause substantial burning and tingling!! it was crazy! The more I use my limbs the worse it gets as well- does this happen to you?
More questions for you- how are your reflexes now? I believe I remember you saying that they were brisk/normal initially? did they stay that way or ever decrease? Did you ever try oral steroids? (I never have) with your rheumatologic issues, did you ever have livedo reticularis? The rheumatologist pointed it out on my trunk- I had noticed I looked a little “purple” compared to my husband and kids in the past year, but never thought much of it.. Anyhow, I was driving in the car yesterday with the sunroof open and the sun hit my thighs for only a few minute (but I was wearing jeans), i was shocked when I got home noticed my thigh had this rash that was BRIGHT red- it did go away within an hour, but it was lacey/web like just like the Livedo rash.. interesting I thought!
Thanks again so much for your help!! How did your treatment go? Do you notice decline or improvement after treatments at this point, or does it all just hold everything steady?
April 26, 2012 at 11:55 am
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.
April 26, 2012 at 1:54 pm
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.
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