Three questions
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AnonymousFebruary 2, 2007 at 10:23 pm
At a second opinion one of the things the Neuro said was that CIDP can definitely go away.
I always thought G B S goes away, CIDP does not. That “C” means chronic, keeps coming back. In your opinions does it go away or not? Second question: When I told him that the summer heat does me
in, he said that was from M S not from CIDP. (I’ve seen comments about this on the board) What do you say? Third question, with history.
Onset was 10/02, I spent 5 months hospitalized. By 2004-05 I was taking walks and riding my bike. But now I have regressed and went for this second opinion because I wanted to find out why I have so much pain and exhaustion coming from my shoulders. I have lots of strength in legs where the CIDP first started , but no endurance.
Now I can do only limited physical exertion till it does me in. He also thinks I should get off all of my meds in the next year because they are causing my shoulder problems; He says I should walk every day and use some hand weights to build my shoulders. Although I have continuing foot neuropathy I ignored it and walked for 20 minutes that day. It took me 5 days of mostly rest to recuperate from the walk.
Has anyone found that the meds can cause these kinds of problems or in your opinion am I over taxing my, already, damaged nerve endings?I am confused and would like some answers from you who are living through it too, you guys are the real experts.
Thanks for your input.
Mary Ann
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AnonymousFebruary 3, 2007 at 7:52 am
Mary Ann, CIDP can burn out and allow you to return to normal if it is only demyelination. If there is axonal atrophy recovery is unlikely.
Your symptoms fit in with residual effects of CIDP.
Go gently with physical exertion, you cannot make muscles recover their nerve supply and you cannot build muscle strength in denervated muscle..
You do not say what medication you are taking. DocDavid -
AnonymousFebruary 3, 2007 at 9:16 am
Hi Mary Ann: I had GBS but the residuals sound familiar. Six montnhs after GBS my doctor urged me to walk through my pain which I did-I felt like I was havinga total relapse for weeks after and my chronic pain went off the charts. NOw I can do a half hour on a stationary bike but cannot walk any further than I could a year ago. The neurologist tested me for strength which was improved but told me he could nothing for endurance. So at least I can get some exercise but still need a wheel chair for extended walking and my foot neuropathy has not improved either. So as docdavid says, it sounds like residuals to me and a good reminder that exercise does not necessarily help nerves regenerate. I hope the CIDP does disappear for you. The challenge of managing residuals remains of course. Jeff
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AnonymousFebruary 3, 2007 at 12:36 pm
mary ann, in my opinion you feel pain-stop! don’t walk through it, you don’t have the normal nerves and muscles of a normal person. i have done it toooo many times and have paid dearly every time. have you tried aqua therapy for exercise? i’m starting mine this week and that is the only type of therapy my physio wants me to do-i can’t do the normal land based pt/ot because of atrophy. i can and do still walk short distances for now, but i still have to sit and rest alot. i go mall walking with my parents and they out do me everyday! but they are great and don’t rub it in at all!
and as for heat-i can’t take the heat like i use to. i’m the outdoors type in any kind of weather, and now i am limited alot more-not willingly at that. even taking a hot shower can get to me sometimes-especially on bad days or when i’m really worn out and tired. temperature fluctuations can irritate the body. doing aqua therapy in a heated pool is going to be a test for me also-the last time i was in a heated pool i ended up in a hospital bed in a relapse-don’t want to go through that again. and the only way i made it out of the pool was by having my hubby lift me out-what a sight that must have been.:rolleyes: take care. -
AnonymousFebruary 3, 2007 at 6:28 pm
mary ann,
chronic means your body manufactures the bad gbs antibodies for a much longer period than a single gbs attack. but it can go away. don’t know the time frame. recurring gbs means you were attacked in a normal gbs fashion, the antibodies stopped, & then after some time you were attacked again. ms may cause summer heat to do one in, but so can gbs. at the beginning 10 seconds in the summer sun & i suffered miserably for days. as said before me, what meds are you taking; you must rest, not exercise; i doubt yours meds are doing this to you. take care. be well.
gene gbs 8-99
in numbers there is strength -
AnonymousFebruary 3, 2007 at 6:57 pm
Mary Ann
I was finally diagnosed with CIDP in January of last year. My neuro has told me the same thing. However, from what I have read here there that normally isn’t the case. The summer heat and humidity here in Florida cleans my clock.
Thank goodness for air conditioning.
Jim C -
AnonymousFebruary 3, 2007 at 8:41 pm
Hello Mary Ann,
I agree with all the posts….double check in your area you might be able to find a place that offers a regular pool that is a tempature you can find comfort. I try and use the regular pool (84 degrees) for the aqua therapy and as long as I am moving and doing the classes I am ok but when they stop, I have to get out of the water. I move over to the therapy pool which is 94 degrees….I am like, someone mentioned, I have trouble with the temps in the shower and can never get my bath water to the right tempature so I mainly take showers. I am not able to to take advantage of the hot tub which is 104 degrees at the fitness club where I belong. My exercise plan does enclude exercise and walking in the a/c or mall. I don’t do well with the heat either. The wind chill here is 10 to 20 degrees below zero this weekend and hubby cranked up the wood stove….I am not dealing with it very well. I spend most of my time in the cooler parts of the house. Don’t be afraid to customize your exercise program to what you are able to do. Right now I found the stores don’t take in consideration that we are wearing coats right now and they have their heat up high also. Just just wear a sweater in the malls and stores so I can walk in comfort but leave the coat and scarf and gloves in the car for safety. That way I can just take off a layer to get comfortable but not have to carry around my heavy coat. Some malls have lockers you can rent too! Just don’t drop the exercise we all need that. After too much of walking my hands and feet swell…I just do other things but keep on exercising and give the feet or hands a break. Basically it comes down to listening to our bodies! I found that my endurance has actually come along better by walking longer in the pool because it is less effort in the water, so that is a nice trade off that has great benefits. Good luck with your exercise program.
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I was on neurontin and desipramine and noticed that I felt worse. When I was just on the desipramine, I did okay. As soon as they added the neurontin I started feeling as if I was having a relapse. Elavil made me feel really bad! Now that I am off of everything I only have residuals flare up around that time of the month or, as I found out, if I get sick. The heat does me in as well. During the summer while I was in the throes of GBS I couldnt get cold enough, I was miserable on top of miserable. Now that it is colder, I am either too cold (much easier to warm up than it is to cool down) or just right and am driving everyone here crazy. I also noticed while in the ER recently and while I was sick, my body temp is indeed lower than it used to be. When the ER nurse said my temp was 99.9 I knew I had a fever because it had been running a constant 96.6 (one night it went down to 95.2 and I was freezing!). Try explaining “normal” temp to a nurse or a doctor unfamiliar with GBS.
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AnonymousFebruary 5, 2007 at 1:06 pm
Don’t even look for me when it comes summer time – I hide ‘in’ the air conditioning. My feet immdiately swell and I start to sweat profusely from my head. My co-workers think I am crazy as I am saying I am enjoying our real winter weather – as long as I am dressed properly – it feels great. I too have problems with my temperature being a bit low naturally, so when the doc says it is only 99.1, I too know I have a fever.
I wasn’t the greatest with temperatures before I got GBS, but it is really bad now!
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AnonymousFebruary 12, 2007 at 12:36 am
Hi,
I am almost 7 year post GBS and I still get exhausted at times. I exercise every day and that helps quite a bit. If I over do and don’t slow down and rest enough, I end up very exhausted and have to lay down for a couple of hours. I feel like I can’t move another step and I just crash. It is not good to over extend ourselves like that, but some days we just forget.
I have to have air conditioning or I have panic attacks. I can’t breath too good, and I just can’t tollerate it for very long. I use to love being out in the heat.
We all have to find our happy medium, good luck.
Judy
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Three questions
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AnonymousFebruary 2, 2007 at 10:11 pm
At a second opinion one of the things the Neuro said was that CIDP can definitely go away.
I always thought G B S goes away, CIDP does not. That “C” means chronic, keeps coming back. In your opinions does it go away or not?
[B]Second question:[/B] When I told him that the summer heat does me
in, he said that was from M S not from CIDP. (I’ve seen comments about this on the board) What do you say?
[B]Third question, with history.[/B]
Onset was 10/02, I spent 5 months hospitalized. By 2004-05 I was taking walks and riding my bike. But now I have regressed and went for this second opinion because I wanted to find out why I have so much pain and exhaustion coming from my shoulders. I have lots of strength in legs where the CIDP first started , but no endurance.
Now I can do only limited physical exertion till it does me in. He also thinks I should get off all of my meds in the next year because they are causing my shoulder problems; He says I should walk every day and use some hand weights to build my shoulders. Although I have continuing foot neuropathy I ignored it and walked for 20 minutes that day. It took me 5 days of mostly rest to recuperate from the walk.
Has anyone found that the meds can cause these kinds of problems or in your opinion am I over taxing my, already, damaged nerve endings?I am confused and would like some answers from you who are living through it too, you guys are the real experts.
Thanks for your input.
Mary Ann
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AnonymousFebruary 3, 2007 at 12:00 am
Hello Mary Ann,
I can kinda answer question number one and I’m saying “kinda” because I don’t know if CIDP can PERMANENTLY go away. CIDP can stop progressing so that you don’t need anymore treatments. I don’t know if this will eventually happen for all of us and I don’t know if you can stop progressing if you chose not to have any treatments. I myself, would never take a chance on this route. I am no longer progressing. I am no longer on any kind of a treatment for CIDP. I have gone through three years of not showing any signs of relapse. I am left with the damage that CIDP did and it’s unknown just how much I will recover. For me, progress is coming on a year to year basis, but I still believe that I have the potential to heal more.I think some of the others will answer that heat does effect them. I’ve become aware that very cold weather will effect my hands. My fingers will buckle on me until I get them warmed up.
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AnonymousFebruary 3, 2007 at 9:53 pm
Thanks Liz for your response. It is helpful. There were some responses on the e-mail that asked what meds I am on. IVIG, Prednisone, Imuran, Nurontin.The Neuro thinks the prednisone is causing the agony and weakness in my sholders. I am on 42 Mg/eod . Also, as to water arobics, The exaustion from the exercise and the high humidity in the place( rec center pool) did me in. Thanks for your response.
Mary Ann -
Hi Mary Ann,
When I was first diagnosed my doctor did say that CIDP could go away. But there was no way to know ahead of time if I would be one of the lucky ones. (Turns out I am not.)
Technically the “chronic” part of CIDP means that it took a “long” time to happen – as opposed to “acute” which means it happened suddenly. Unfortunately the majority of CIDP patients have progressive or relapsing forms of the condition so it seems as if the “chronic” stands for forever.
Please don’t exercise to the point of pain. You have an illness which demands you listen to your body. You need to carefully balance the need to keep muscle tone versus exhaustion. Find an excercise routine that does not hurt your feet. Are your shoes and socks fitting properly?
Prednisone can cause damage to bones and joints. Have you had an orthopedist take x rays of your shoulders? Do you get routine bone density tests? I take prednisone and am very faithful about taking my calcium supplements.
I agree that damp heat makes me weak. I never take a bath unless I am sure someone will be home to help me out of the tub if necessary.
Take care,
Flossie -
AnonymousFebruary 4, 2007 at 3:27 pm
CIDP can be put into “permanent” remisssion. The patients do not always come back to full pre-CIDP status, but some do. I’ve read of sustained remission in the literature.
The difficulty for doctors is that different treatment regimens work for different patients with varying degrees of success. So there is a question as to the heterogeneous quality of the disease. The disease is based on the symptoms and lab findings, not on the etiology.
The only thing agreeable amongst doctors about the disease is that it is an autoimmune disease, but what causes the underlying autoimmunity in the patient is guesswork.
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AnonymousFebruary 4, 2007 at 7:11 pm
1) CIDP can go into remission. I’m not sure if it happens often in adults but I’ve researched that a vast majority of children with CIDP do go into remission. I take that to mean that it can go away but it’s always there waiting to come back.
2) I know that in the summer Emily has a harder time when she gets overheated. She does not have MS, she has CIDP.
3) I would think that if you are getting weaker & having pains in new areas that your CIDP is not under control & that further treatment options should be investigated.
Remember if you are not happy with your 2nd opinion you can get a 3rd, and a 4th or even a 5th. Keep searching until you find a dr that you like & you feel comfortable with.
Take care,
Kelly -
AnonymousFebruary 6, 2007 at 12:56 am
K C’s Mom,
CAN CIDP “go away”?
CIDP is the bodies immune system attacking the myelin sheath that surrounds the nerve axon. In order for the immune system to attack “self”, a mechanism is broken. The body has a rule — T-cells do not attack “self”. The big word is Major Histo-Compatibility complex (MHC). Basically that means something like this – each cell has an ID card that it sticks oput when a T-cell comes by. That identifies it as “self” and the T-cell does not attack it. If the cell is invaded by something, the ID card presented is different, and the T-cell knows to attack and destroy.
In CIDP, screwed up T-cells don’t read the ID cards stuck out by healthy myelin cells correctly. They think the healthy cells are invaders, and proceed to destroy. Since they see a lot of myelin all around the body, they replicate to attempt to destroy all of the invaders (your healthy cells). The damage multiplies.
In GBS it goes completely haywire, and mass destruction occurs. But then for some reason, the body recognizes this problem and sends a new army of cells to destroy these “bad coded” t-cells. And they win. GBS stops and does not come back.
In CIDP, it continues. For those relapse/remitting people, the cycle repeats over and over. IVIG treatment floods the body with “good antibodies” to help overcome the “bad anti-bodies” and spur on recovery.
CIDP can only “go away” when all of the bad antibodies are gone. If there is only one, it can replicate and continue the mission. So you take immunosuppressants to supress the immune system, and keep it less active. The rest is pain management to deal with the problems that arise from the damage.
They say 5% of CIDP patients go into spontaneous remission for no reason. So, until there is a way to do one of three things, stop replication, stop damage, or rid the body of “bad guys”, we will still have CIDP. 1) If the bad T-cells can’t replicate, the body might find a way to attack and destroy them. 2.) If there is a way to protect the myelin from destruction, no damage would occur. Stop the cells at a chemical level from doing what they are designed to do. 3) destroy the immune system entirely, and hope it “reboots” cleanly, without any “bad guys”. Maybe there are different ways, but I think this is the thrust of research now.
Plan on having it, but you can deal with it and minimize problems.
Question 2 Heat. Hotter temperatures aggravate my condition. I fatigue faster, and it seems like CIDP gets more aggravating in the summer. I tend to have more losses in the summer, and recoveries are slower. It has been getting consistently harder each summer for the past 7 or 8 years. But I am also less tolerant of cold as well. Either extreme seems to be affecting me worse each year. As a result, I try to care for myself and not expose me to these problems. I see no use to push limits in a challenging atmosphere when I now I am going to lose. I try to push when I can handle it.
I AM NOT ADMITTING DEFEAT !!! I am realistic about my condition and try to deal with it the best I can. I try to do the best I can with what I have. I am learning my limitations and the price I pay when I exceed them. I helped the Boy Scouts a couple of weekends ago. I was on my feet way too much cooking and being active. I was flat in bed for 3 days completely, and I am still trying to recover two weeks later.
Question 3 How much is too much? Very personal. But when you over do it too much, you will pay.
Look at it this way, as CIDP progresses it affects sensory nerves, and muscle nerves. Each muscle fiber has its own nerve telling it when to fire, or contract. If the nerve fails, that muscle fiber stops working. Let’s make an example — If you have 100 muscle fibers to lift 100 pounds, that’s 1 pound per fiber. If you lose 25 fibers to CIDP damage, it is 75 fibers to 100 pounds. Each fiber gets 1 pound, plus 1/3 pound to make up for the ones not working anymore. Understandably you would fatigue faster, and not be able to do as much work. As the muscles get stressed, it takes longer for them to recover. Less mass doing the same work.
So when someone tells you to do more, you are just overtaxing the system more severly. If you don’t use it, you will lose it. That is for sure true as well. So how much should you do?
That is so individual. You have to do some, but you don’t want to do too much. Too much puts you in bed, and it hurts. I try to do what I can, and try to stop when I should. Sometimes I just have to sit and stop. I apologize and sit, or lay down. After several years with CIDP, my kids understand. (They are now 20,18 and 15) They were 7, 10 and 12 when I was diagnosed. My wife wishes I would stop sooner, because I am down so long when I over do it.
As to the meds doing it? I don’t know. Between the CIDP doing its thing, and us doing things we shouldn’t, what is left?
The shoulder thing could be stress and tensed up, locked up, overtaxed muscles. Get your significant other to give you good shoulder rubs and relax those muscles. At the worst it will feel good!!! I don’t know what that answer is. Shoulders, neck, and those little muscles around the base of the skull seem to tighten up easily and cause pain.
Sorry so long, but I hope it helps.
Dick S.
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