Pain vs joint and muscle ache
AnonymousSeptember 10, 2007 at 11:56 pm
Let me preface this by saying that I am worried that I appear to be a complainer and pain in the ass, but I feel like I cannot get a grip on my condition. And it helps me to know I can just be a mess here, but if it is too much for you guys let me know. After spending another weekend rendered immobile where I slept from Friday midnight to Sat noon. Then 3pm to 9:30 and then another 14 hours and having intense aching and pain in my hands and arms and legs and then being told by my OT that the acheyness does not sound like CIDP I am left confused. My symptoms are extream weakness and fatigue, pain in my hips and back, legs and arms sometimes to the point where I feel “swollen” all over. It seems to flare up every 2 weeks and certain things make it flare like exercise or too much of any activity. After explaining all of this again to my OT, she asked me if tests were done to rule everything else out when I was diagnosed. Like MRI and Lumbar punct. etc. to rule out Lyme disease, Lupus, MS, or Rheumatoid. I was not tested for anything else and was diagnosed after one nerve conduction test. So she thinks I need to ask for further testing because there may be more going on. I am thinking she may be right and probably it would help to rule other stuff out but I guess I am just wondering if maybe what I experience is more common to people with CIDP than any of these professionals know. So what do you think? Is that feeling of ache in the muscles and joints part of the CIDP?
Would you get more tests at this point? Thanks for listening.
AnonymousSeptember 11, 2007 at 5:57 am
It is for me but I have been told I’m not a typical case. I have had loose joints my entire life and the muscle weakness CIDP causes just makes it worse. Almost every day I wake up feeling like I’ve already run a marathon. My joints do not swell much, a little redness, and it is not arthritis. I do have some bursitis and frequently my joints will pop out and back in again. In my case I think its the extra strain on my ligaments and tendons because my muscles are weak that causes joint pain. And muscle pain, well you would expect that wouldn’t you since they don’t work as well as they used to before your nerves were attacked. Anyway, don’t be discouraged – I am finding that many neuros don’t know much about CIDP and the variations it can take. Lots of the symptoms I thought were just me being paranoid, or me getting old, or me being whiny, are actually related to demyelenation or it’s effects. :rolleyes:
AnonymousSeptember 12, 2007 at 12:40 am
If all you have ever had to dx CIDP was a NCS then I would say yes, I think there could be something more going on. There was another post awhile back by a user named Bubbleboy who also complained of a lot of muscle & joint pain, actually he seemed to be in an excrutiating amount of pain overall. I believe I might have been the only one to suggest that something else might be going on; I mean I have some joint & muscle pain, but it is nothing like the nerve pain in my feet. It turns out he did not have CIDP after all (I don’t think he still has an accurate dx.)
To get my dx of CIDP I was at the Mayo in Rochester for 6 weeks inpatient before they said I had CIDP & not GBS. I had been dx with GBS first in Duluth, MN presenting with numb hands & feet & weakness in my knees. My protein count from a spinal tap was over 300. At Mayo I was given a sural nerve biopsy, a bone marrow biopsy, a lip biospy, a spinal nerve root biopsy, not to mention 4 complete sets of MRIs, CT Scans, X-rays, etc. But if most of your pain seems to be in the muscles & joints, then I think further testing would be warranted. BTW do you have peripheral neuropathy of the hands & feet?
AnonymousSeptember 12, 2007 at 9:38 am
[QUOTE=L Cala]Thanks Julie and Gene,
Julie, I’m just curious about being told your not typical. What is typical/not typical? Thats what is confusing to me. Thanks.
My doctor (Neuro # 4) tells me that my symptoms are more like GBS because of the facial and autonomic involvement (fevers, blood pressure etc) but the timeline was more like CIDP. Here is how things started: I had a lump on my right foot starting July 2005, it grew and my foot got numb so I had surgery to remove it (turned out to be scar tissue) in Dec. 2005. Then in late January 2006 I got bronchitis for about a week, a mild case as my husband had it for nearly 3 months. Then early Feb. I started PT on foot and immediately got foot drop which my PT noticed. We tried prednisone, no help, tried B12 shots, no help, the numbness progressed. Then Neuro # 1 did NCV/EMG and said “trapped peroneal nerve” so I had surgery in April to “free” the nerve. That was no help either and in fact the numbness progressed a little faster up my right side, then skipped my trunk, and started on my face in July 2006. At this point Neuro # 1 says he thinks it is CIDP but by early August 2006 the numbness/paralysis accellerated so that I went from functional but numb to unable to walk, talk, breathe etc. all within about 2 weeks and it had spread all over my body except for my lower left leg. Neuro # 1 admitted me with diagnosis of GBS but then changed a few days later to myasthenia gravis due to facial drooping etc. He was not aware of Miller Fisher variant. Anyway, admittedly it was confusing, there are elements of both GBS and CIDP so Neuro # 4 says I’m not typical. This does not surprise me, I’ve had more than 15 doctors tell me the same thing without having a clue what was wrong with me. I went the rounds through infectious diseases and rheumatology because of the persistent fevers (usually ~100.8) but Neuro # 4 says it is more likely due to autonomic involvement as I have other autonomic symptoms as well. He also says autonomic involvment is not typical with CIDP but I seem to remember other people on here having problems with it as well.
So maybe I’m not so unusual, maybe I’ve had a series of only moderately educated neurologists but aside from Neuro # 1 I have been going to respected universities – George Washington University, Georgetown and Johns Hopkins. I have different opinions about each of them but I have family and friends who have trained at and worked at Hopkins in the medical field and they would not tell me to go there if it was not highly respected. (I admit I was warned about Georgetown Neuro dept but for the sake of convenience I went anyway, much to my regret).
Anyway, sorry for the long answer but I hope it makes sense to you. 😮
P.S. You should definately get tested for other things, particularly Lyme. My joint pain has repeatedly made them suspect Lyme but I’ve been tested 5 times in 1.5 years and I don’t have it.
September 12, 2007 at 1:26 pm
I am so sorry you are having such an awful time! I cannot get a handle on Kevins symptoms as well. He is having an issue at present and as usual I am worried and confused. No one ever gets annoyed with questions or doubts on this site when I have them, so I am sure if they can deal with my complaining and they never said I was a pain in the butt, I am sure they feel the same about you! 🙂
I would definitely have more testing done. Especially the R/A! Good luck with the testing if you do decide to go, I will be thinking of you!
Dawn Kevies mom 🙂
AnonymousSeptember 12, 2007 at 11:32 pm
Thanks Julie, Gene and Dawn and Pam, I appreciate your input. I gotta tell you, I am so so so sick of this whole entire thing. Today I went to OT and PT. Actually I had PT first and when I got there the PT seemed like he forgot my case and wasn’t sure why I was there. I showed him my AFO’S and he evaluated my walk. He gave me a few tips about correcting my foot position and then asked what exercises he had given me and then told me to just try and not over do it and to give him a call if I had any questions. Then I saw my OT who overheard Brian saying to call if needed, and as she and I spoke she seemed surprised that Brian wasn’t seeing me on a regular basis. So I feel so tossed around and confused about the conflicting messages. But the OT is helpful and I am learning that the pattern to my progression is I do well for about 2-3 weeks and then have a relapse. So with That info. and my question about further testing I guess I will know what to address with my neuro. It is truly amazing what lessons come from having to live one day at a time uncertain of how the day will go. I guess that is really what its all about. Thanks for listening. Hope everyone else is getting along well.
AnonymousSeptember 12, 2007 at 11:35 pm
Hi Linda: I had GBS with axonal damage to my legs and likely hands. I have a great deal of joint pain as well as muscle pain which got worse in recent months. Was tested for RA and had MRI’s etc and they finally concluded that I have muscle damage and weakness in my hips and knees causing a lot of the pain in both muscles and joints. The muscle damage is a result of the axonal damage and trying to walk too much. I also have pain in my fingers which no doctor can explain yet but the ones I trust think it is a result of my paralysis.
I would get all the tests you need-I did-but it is possible it has to do with residuals and perhaps doing too much as well. I had to learn to lie flat many hours during the day to ease my discomfort. I too was told I had atypical symptoms, but I think GBS is atypical. As Gene suggested, there is an easy test to rule out CIDP and you might push to get it. Jeff
AnonymousOctober 7, 2007 at 1:49 pm
I do have the pins and needles in my feet. I was told my joint and muscle pain did not fit. I ache all over. I was told by another doctor I have fibromyalgia. I was diagnosed in 1999 with CIDP. I have never been able to return to work because of muscle joint pain and severe fatigue. Does anyone else suffer from the fatigue?????????????
AnonymousOctober 7, 2007 at 11:29 pm
Along with the nerve pain, I also suffer severe muscle pain. I do have joint pain as well, but not as bad as the deep muscle pain. It is more like a weakness in that it feels like my arms weigh a ton every time I try to use them. Same for my legs. I do have back pain and find it difficult to sit up and need to lay flat every few hours to rest my muscles and then try again.
I also have the severe fatigue, and my autonomic system is effected.:(
I have had many tests, encluding the usual that confirmed my diagnosis. But from the onset, my neuro has said there may be more then one disease process going on.
So far, I have not responded to any treatments. I believe I have the progressive form. (I have had IVIG, prednisone and now plasma exchange)
Since you have not had more then the nc/emg, I would think that further testing is warranted if only to rule out other things conclusively.
I am having my 3rd endoscopy on the 19th, for peptic ulcer disease, bile reflux, to have my esophugus (SP?) dilated again. But I am having additional problems with my digestive tract, yeast infection for one. I plan to ask the doc to biopsy me and check for celiac as I also have many of the symptoms and my diet is severely suffering for whatever is going on now. I don’t think she will have a problem doing that. She is a really good GI doc.
Don’t worry about venting here. I have so much I want to vent, but every time I start to, I start to cry, and I don’t need that.
I will just say that I am having 6 plasma exchanges every month and feel it is taking the life out of me. I plan to discuss different treatments, or mixture at my next appointment. Something is wrong here with the current treatments. Just to much for me to handle, and I never come back from it.
Sorry to hijack your thread. Hope you feel better soon. Wish I had answers for you.
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