CIDP and arthritis

    • Anonymous
      October 27, 2009 at 10:36 pm

      [COLOR=”Navy”][FONT=”Century Gothic”][SIZE=”2″]I have CIDP. Not a huge problem thus far. The usual pins and electric shocks and burning thighs and numb toes. Same old, same old — eh? 😉

      But now I have arthritic swelling and pain in the knuckle joints of my right hand … thumb, index and middle fingers. Nothing in the fingers themselves so far.

      What information do you all have on this combo? I see reference to Enbrel, but that seems a bit drastic.

      I will be contacting my neuro, but hearing from what others have done for something similar is, as you all know, oftentimes more informative than what one might get from a doc.

      I’d like to be armed with some info before I ask her about this. If she seems open to suggestion ( and she does seem the type to be so ), I might suggest something I’ve learned here.

      This is actually more annoying than the CIDP symptoms though I suppose I should knock on wood about even thinking such a thing. The problem is that I do some serious needlework … a long time serious hobby, so serious I can lose all track of time … and I am completely right-handed.

      Bad enough I had nasty repetitive motion injuries and had to give up piano. I’d be one darn mad olde phart if the hands went kaput altogether![/SIZE][/FONT][/COLOR]

    • Anonymous
      October 27, 2009 at 11:11 pm

      hmm maybe its serum sickness. Im just kidding. actually tomorrow I will find out if I can put rheumatology to rest. I will get blood test results that would reveal which if any illness could have caused my ANA. but even in the onset of gbs I had deep bone pain. like frost bite. but your saying actual arthritis with swelling and everthing i have had that too right before this last hosptialization but I cant tell you what could help for it or what even caused it. I know its excrutiating. I hope it gets better for you.

    • Anonymous
      October 28, 2009 at 12:05 am

      See IF or how WELL your thyroid is functioning. That’s what happened to me. I’d been controlled w/treatments for ‘hypothyroid’ for over a decade.. but it flared up less than six months after I came down w/CIDP…at the time, undiagnosed. AND it flared up big time! Thyroid too was diagnosed four years later as ‘Hashimotos’ Thyroiditis’ and auto-immune issue as is CIDP.
      I had to take my wedding ring off? And still can’t wear it and my feet swelled up three shoe sizes! On the right meds? Got back to ‘normal-ish’ in about 3 weeks.
      BUT, between the CIDP [which included swelling], and prior injuries I will and DO swell big-time at the drop of a hat! How much I swell, tells me that I’m either doing or eating something wrong, a new med is wrong or that I mite be having a ‘relapse’…
      The hardest part of seeing an ‘endo’ is waiting for the appt! IF your GP knows of someone in your area who can do a ‘personal’ referral? You are likely to be ‘fit’ in for an initial appt then further testing. [That’s what happened to me and I got in in 2 weeks!] Testing is usually easier than ‘neuro’ type tests, less invasive as a rule? And definitely far more ‘passive’ for us, the patients, than many other docs we see! Usually, it only entails a heap of blood vials and maybe a sonogram of your thyroid..if that is the issue. No sweat.
      They are really useful docs for ‘eliminating’ lots of possible ‘other’ medical issues. And, it could cross off a bunch of other issues and possible problems off of THE LIST!
      Good luck! Keep us all updated on how things are working out..please.

    • Anonymous
      October 28, 2009 at 11:13 am

      Where you tested for Lyme disease?
      Arthritis and peripheral neuropathy are Lyme sympthoms.

    • Anonymous
      October 28, 2009 at 11:29 am

      [FONT=”Book Antiqua”][COLOR=”Navy”]No Lyme Disease.

      No swelling.

      “Just” joint pain with swelling in those joints.

      CIDP post breast CA is the dx. I just wondered if yet another auto-immune, rheumatoid arthritis, is now showing up as well.

      I will discuss it with my neuro.[/COLOR][/FONT]

    • Anonymous
      October 28, 2009 at 2:06 pm

      HI Rocky,
      My miracle drug is Naproxin for joint pain and inflamation. It will upset your stomach. I only take one in a day with food and only when my hands get really stiff and painful.

    • Anonymous
      October 28, 2009 at 2:30 pm

      [QUOTE=petalinthewind]HI Rocky,
      My miracle drug is Naproxin for joint pain and inflamation. It will upset your stomach. I only take one in a day with food and only when my hands get really stiff and painful.

      [COLOR=”Navy”]And the arthritic pain/inflammation is part and parcel of your CIDP?

      I wondered and about decided it was exactly that … all auto-immune.

      I have a problem with aspirin type drugs, naproxin being one of them. I bruise easily even without the aspirin type meds, but it may be something I’ll just have to put up with …

      Thanks for the reply, Sue.[/COLOR]

    • Anonymous
      October 29, 2009 at 1:54 am

      I have been thinking about neurology vs rhematology it so facinating and I am observing that rheumatology is highly sensative to environmental factors like sunlight, menstral cycle, barametric pressure, drug interactions, diet. neurological autoimmune conditions not so much agrovated by outside factors in that way.

    • Anonymous
      October 29, 2009 at 10:42 pm

      My three year old has cidp that was caused by Fifth’s disease. She got Fifths and had terrible arthritis and a group of doctors were trying to figure out what was going on and she took motrin, naproxin and methotrexate for her arthritis which did not help. She was later diagnosed with gbs and eventrually cidp. The neuro who started aggressively treating her said that the ivig would take care of the cidp and the arthritis and it did. The rheumatologist is amazed. Neither doctor knows whether her arthritis is autoimmune or reactive. Remember, not all arthritis is autoimmune. There are several that are not. Are you getting ivig for your cidp. Maybe you can up your dose a little and it will do the same for you. It is terrible to have multiple problems and we wish the best for you.

    • Anonymous
      October 30, 2009 at 9:27 pm

      Did/are you going thru chemo or post-chemo treatments? They can and do a number on a person vis-a-vis the immune system! And chemo’s can damage the nerves like big-time!
      Did you also have a cold or flu during this time? Bet you did! As my own BC was ‘hatching’, so to speak is when the CIDP HATCHED following a long pneumonia bout. So it could have been ‘paraneoplastic cancer’ causing the PN.
      Most nerves are ‘damaged’ And CAN heal once you are off the post-chemo ‘chemos’….aromasin, femara, arimidex..etc. It will likely take years tho, so you have to read up as much as you can about ‘peripheral nerve healing’….there isn’t much out there? But, the basic philosophy is that once the ‘toxin’ is removed the nerves will heal. And being on these ‘post’ drugs for FIVE years makes it a very long haul. All neuros can do is prescribe meds for the pains.
      The only other helps I’ve learned are a bood B-1 and B-12 [methylcobalanate, not cyanotcobalanate {sp?} along w/a good combo of magnesium, Vit D and a little zinc thrown in-to help w/asorbtion issues + nerve healing] A really COMPLETE metabolic blood panel should give you clues here as to what is missing or truly deficient. Watch out for B-vite complexes which include a lot of B-6 tho… IF you read all your vitamin labels? you’d be surprised at HOW much of this is thrown into almost everything! B-6 can cause neuropathies on it’s own. I use pre-natal multi vites plus B-1 +B-12 in addition…these too are keys to helping the calcium be asorbed and the nerves to heal. Try and get copies of your blood tests – they are an education in and of themselvles!
      Why the calcium? Chemo and post-chemo meds are notorious calcium leachers. Further if you take something like Neurontin or Lyrica? In the fine print that calcium loss [osteoporosis] is listed in teeny tiny print [under drug-prescribing information]!
      Sometimes it can go away? More times it doesn’t! Wish I could be more well, hopeful! I truly hope that you are one of the lucky ones! Also? IF you are on prednisone? That too saps away the calcium. I skipped that step as I was almost Osteoporosis when cancer was found and IVIG was my most ‘organic’ w/least stress on the body way to go! Tho that too, is hard on the liver and kidneys… it’s better than having ‘paper’ bones!
      We all try and do as best as we can w/what we have! My heart is with you!

    • Anonymous
      October 31, 2009 at 11:13 am

      [QUOTE=homeagain]So it could have been ‘paraneoplastic cancer’ causing the PN.[/QUOTE]

      [B][COLOR=”Sienna”][FONT=”Book Antiqua”][SIZE=”2″]Yes, that’s exactly what I said previously. Breast CA kicked off the CIDP, which is not uncommon. 1 in 10 breast, ovarian or lung cancer patients will develop one of the auto-immune diseases.[/SIZE][/FONT][/COLOR][/B]

    • Anonymous
      November 6, 2009 at 8:50 am

      Hi, Rocky.

      In the mid-1980s I had what was diagnosed as an allergic arthritis — pain in the joints, primarily fingers and knees, which wasn’t rheumatoid and wasn’t brought on by joint damage. The doctor said that in this case allergic meant that it was probably a faulty immune reaction, and a course of steroids brought it under control.

      In the early 1990s I started having breathing and swallowing problems which went undiagnosed (the doctor said it was probably just early menopause, e.g., it’s all in your head). In early 1999 I started with the tins and needles of CIDP. Since then I’ve found out that the breathing problems are from sarcoidosis — another autoimmune disorder.

      My neurologist believes that the swallowing problems are from autonomic CIDP damage, and that it’s possible the joint problems were actually the first indication of oncoming CIDP.

      And fairly regularly I have recurrent joint pain.

      I need a holiday — from my body! 😎


    • Anonymous
      November 6, 2009 at 10:48 am

      [FONT=”Arial Narrow”][SIZE=”2″][COLOR=”Sienna”]Hi, Deb …

      So you’ve had a really rotten assortment of auto-immune problems. I’d wondered about my new problems with arthritis. RA being auto-immune, it seemed likely I was dealing with two auto-immunes, CIDP and RA.

      Hearing from you, I know there are at least two of us with assorted problems.

      You’ve had an awful lot to deal with. So far just the two for me.

      Thanks for posting! At least I’m pretty sure now that I’m not just going completely daft !! 😀


CIDP and Arthritis

    • Anonymous
      March 23, 2009 at 2:47 pm

      I just bumped into an interesting situation. I had arthroscopic surgery on my right knee to repair a torn ligament. They found a rather large area affected by arthritis where there was bone on bone wear. The doctor thought it was rather curious that I did not have any pain associated with the arthritis.

      Now I’m not complaining about the lack of pain, but I’m curious if there’s any correlation between the CIDP and a lack of pain associated with the arthritis. Has anybody experienced anything like this? Or heard of anyone who had a similar situation?

      Sometime in the future, hopefully far distant future, I am going to need a total knee replacement. But as long as it’s pain-free why mess with it? Because once it is done I will not be able to jump over tall buildings or even small buildings are even small ant hills. So what would be the point? :rolleyes:

    • Anonymous
      March 23, 2009 at 4:10 pm

      Are the medications you are taking for CIDP hiding or masking the pain from your knee? I agree with you don’t mess with being pain free!


    • Anonymous
      March 23, 2009 at 5:48 pm

      I don’t think the meds are masking it. They are not doing a very good job of masking the CIDP pain, but enough so that I can get some sleep. So I guess that good. At least it is better than a lot of post I’ve seen.

    • Anonymous
      March 23, 2009 at 6:34 pm

      Hey Jim,:rolleyes:
      I had the same surgery in Dec.
      My doctor is a supposed knee specialist
      who only does knees. He’s very booked and has
      pictures of lot’s of athletes and olympian on his walls.
      Anywhoo, after my surgery he tells me he took a biopsy
      because my knee appeared to be very inflamed inside,
      in his words “I’ve never seen such an angry knee and I
      do hundreds of these a month! ” I then reminded him I
      was his CIDP patient, I should’ve known he didn’t have a
      clue as to what I was explaining earlier. In hindsight he kinda
      disregarded me when I was telling him my medical history.
      I told him if he cut open my feet and hands they are probably
      equally inflamed. Only good thing is I now have a picture
      to show the inflamation for insurance purposes. Also I had
      no idea my knee was in pain and I had a torn meniscus pretty bad.
      It didn’t hurt any more than the rest of body but my doctor
      noticed swelling and took an x-ray. Go figure…


    • Anonymous
      March 24, 2009 at 8:00 am

      CIDP is so strange. I do have arthritis in my knee…I’m 38 and have never injured it. I also do feel it from time to time especially if I’m going down steps.
      What I think is weird is that all of my toes are numb. I cant feel them to save my life but I have what i think might be an ingrown toenail and it hurts like mad. Explain that.
      How do I feel that when I dont feel my toe ? I only feel where it’s red and swollen from what might be the start of an ingrown.
      Nuts. Every time I bang it in to something, I sure wish I didnt feel it !

      My sis had a partial replacement that went bad and then went for the full knee. She was 47 at the time. She didnt do as the dr’s ordered, hence the partial going bad….and it took her forever to heal and she’s healthy.
      My hubby needs two new knees, too. I agree with the rest…if it doesnt hurt, dont bother ? good luck.


    • Anonymous
      March 24, 2009 at 1:21 pm

      Hi Jim,

      Interesting topic you brought up. I’ll be brief. What I have noticed with me, is, as I slowly regain strength and stamina, My old aches and pains are more noticeable.

      For example-during testing prior to cidp they told me my meniscus was torn.
      I felt no pain what so ever. Now as I get a little better, the darn thing hurts along with about 4 other past injured areas. Go Figure.–tim–

    • Anonymous
      March 24, 2009 at 1:43 pm

      Jim, good question. I had knee surgery x3 all prior to my paralysis events, well the last one actually might have started it all. I had ligaments and tendons repaired and others cut along with all the arthritis scraped out of the knee joint-off the bones. The arthritis only showed up on 1 mri as a heightened white area or as some slight inflammation. I had no pain associated with it. I only had the 1st surgery because I had sudden pain and swelling after I ran at a running track at a local science center. No falls, twisting or anything happened, just instant pain and swelling when I finished. We scoped my other knee because I had very loose ligaments and tendons and it was unstable-2 unstable, wobbly knees are not good! It had arthritis also, along with torn tendons-who would have guessed!
      My Dad had 1 knee replaced because of pain from arthritis and his were bone on bone-cartilage was taken out in the navy yrs. He had his 2nd knee replaced a short time ago due to bone on bone and alot of arthritis also, not due to pain.
      I feel its one of those individual things, we each have our own pain thrushold levels, our minds own interpretation of pain. The brain has the power to limit the bad pain if it feels the body needs the help. The brain is soo powerful and amazing.
      I hope you have a fast recovery from your knee procedure. If its not broken, why fix it, is my thought.

    • Anonymous
      March 24, 2009 at 3:48 pm

      Jim, quite interesting. I had a lot of pain im my lumbar region. After my cidp creeped up my body and went past that area, the pain ceased. I still don’t know whether to be glad or sad.