AnonymousNovember 21, 2009 at 4:59 pm
I am new to this group, I apprecaite reading your posts, they have provided good insight and hope. I want to put my story out there in case others start going through the same thing and don’t know what’s going on. Maybe this will give you an idea.
I received a dx of CIDP in Oct 09. It’s cliche but at age 36 I was in the best shape of my life. I had just completed my first marathon the previous fall and continued to run regularly and lift weights.
In late June 09 I was running on a tough course and both lower legs went numb near the end of the run. It was a very hot/humid morning so I figured I had just overdone it. When they stayed numb for three days I went to see a chiropractor, thinking I had a pinched nerve. He found nothing wrong so I went to my PCP. At this point my numbness had been on and off, always bilaterally, she ordered an MRI of my lower back also thinking that was the issue.
The MRI showed some minor issues and I was referred to a neurosurgeon. By this time, mid July, more symptoms had developed. My big toes started cramping on their own, I was numb in my feet, lower legs, forearms, face, and throat. At times I felt like there was a band slowly tightening across my abdomen and had numbness below the waist. I also started having pinching pain in the tops of my ears. Heat made the symptoms worse. The neurosuregon found nothing that needed surgery. He ordered an MRI of my brian and the rest of my back and told me to see a neurologist.
While waiting, my wife and I had googled all these symptoms and MS kept coming up. We were expecting to see evidence on the MRIs when they returned. We saw the neurologist, he studied the MRIs, and said it’s not MS but agreed it sounded like MS. He also saw nothing on the MRIs that showed any pinched nerves or tumors. He ordered an EMG/Nerve Conduction test.
By this time, early August, things were beginning to get better. But at the worst of it I had to lay down because I felt vibrations traveling up and down my entire body. I was still running on days when I could feel my legs. I wrote down my symptoms because I was starting to fear that it was all in my head.
I was fairly relieved when the results of the EMG showed that I had considerable nerve damage in all but one nerve that was tested. My neurologist told me that it was measureable proof that these symptoms do exist and are not in my head. He also said that it is more proof that it is not MS, since my peripheral nervous system was affected and not my central nervous system. In fact I had mononeuritis multiplex (I spent a lot of time googling that term.)
Since things had cooled down the neurologist said we’d hold off on the spinal tap and see if this goes away. He gave me braces for my arms to help prevent further nerve damage, and he suspected GBS. But shortly after the pain began and became very bad so I asked for a spinal tap.
The spinal tap showed that I had elevated proteins. At this time he made his dx of CIDP. I’m on Gabapentin for the nerve pain (currently I’m up to 1500 mg daily) and he has me on 30 mg of Prednisone for at least 6 months.
Recently the pain has become terrible. When the Prenisone increased from 20mg to 30 I did have relief for about a week, and when he increases the Gabapentin it gives me relief for a few days. Sometimes it feels like I’m on fire, sometimes it feels like I’m just very cramped, like hitting the wall in running. The pain is now on my forearms, face, upper legs, and ears. The numbness in my lower legs is daily now and my toes continue to cramp on their own. I cannot run anymore due to pain, and I cannot lift anything over 50lbs without pain shooting through my arms. I did find that I could use the exercise bike without pain, so that has been my exercise.
I do worry about the progression and the side effects of the Prednisone, but I’m hunkering down for the long haul. I trust the Lord has a plan for this. I do hope that relief comes soon though and that it does not continue to progress. I am thankful that I can still walk and have full control over my body. So I think I have a more mild form of CIDP.
Thanks for listening. I hope this helps somebody out there.
AnonymousNovember 22, 2009 at 2:27 am
Thanks for sharing your story, it is always interesting learning about everyones individual encounters with this condition.
I just wanted to pass on a bit of info i have learned over the last 2.5 years since i was diagnoised with CIDP. The main thing is that an increase in your symptoms or a deterioration in you general ability to perform your usual activities of daily living is not a good thing and is something you should inform your doctor of. You say that recently the pain has become terrible and you indicate that the numbness is increasing etc. I am not sure how long you have been on the prednisone but if it hadnt and least stabilised me and halted the symptoms I would be returning to the neuro. My neuro once said to me soon after i was diagnoised and we were on the rollorcoaster ride of finding what treatments worked for me (everyone responds differently) a piece of info i often recall ‘If you have 3 successive days of deterioration in condition, ie increasing weakness, numbness, (that cannot be attributed to a triggering factor – ie doing a marathon, or some activity out of the norm) return to my neuro. Of course as mentioned everyone is different and only you are aware of how rapid you decline/relapse but generally an increase in symptoms means the conditon is not under control. Of course certain treatments take a varied amount of time to reach efficacy but remember the longer the deterioration occurs the more chance you have of permanent axonal damage, and more often than not the deterioration phase is more rapid than the remylination or repair phase.
It sounds like you have lost a lot of function already (i too guage myself against my ability to run or not – although what i sometimes call running and passing motorists think is a drunken stumbler is up for debate!!!) and perhaps the prednisone is not enough or the correct form of treatment for you.
I was initially givien ivig which showed stabilisation for about 2 weeks until i relapsed further then we tried further loading ivig plus oral pred which held for another 2 weeks before a greater relapse so then we up’d the pred, reloaded with ivig and then had weekly maintainence ivig, again this kept things at bay for a few more weeks before even greater relapse to quad status so then we tried a combo therapy of pulse methylpred, weekly ivig, and immunosups. There is also plasmaphereisis which is often considered on a par with IVIG.
I just wanted to let you know there are a number of treatments out there and please be proactive in informing your neuro of your condition. At our age there may be a long road ahead dealing with CIDP so the sooner you get it under control the better
All the best, and aim high, hope you’re out there running again in no time
AnonymousNovember 22, 2009 at 10:03 am
I appreciate the advice. I keep in contact with the neuro, usually calling weekly. I see him again Dec 1. The more I read in here the more it seems that ivig may be the next step. We’ll see what he says, but I’ll bring that up.
I appreciate the advice,
AnonymousNovember 22, 2009 at 11:43 am
Thanks for sharing your story.
I have quite a bit of pain all over but mostly pain and swelling in my legs, ankles, and feet. If you have pain at night. I have found a warm rice bag often helps.
Others have found applying a cool pack also works. All of us are different in what works to help relieve symptoms.
Rhonda from Canada
AnonymousNovember 22, 2009 at 12:22 pm
It’s funny you mention leg pain at night. Before I started prednisone I was having horrible pain in my left knee at night. I honestly thought it was unreleated, but on my first week of prednisone it was gone and hasn’t returned. I’m glad you mentioned the leg pain, it’s good to know that mine probably is/was releated to cidp.
AnonymousNovember 22, 2009 at 2:40 pm
I was just wondering if your neurologist has started IVIG infusions or Plasma Exchange? These are the most common treatments for CIDP and are almost always done. Though these can make you feel stronger and better, they are also used to CONTROL (not cure) the progression of CIDP and when the progression is controlled we can go into a remission. When we are in a remission we have a chance to start to heal.
I think it’s important that you talk to your doctor about starting IVIG or Plasma Exchange and finding a maintenance schedule that works for you.
AnonymousNovember 22, 2009 at 4:06 pm
Sorry to hear you were dx with this disease. My son Ryan was dx in Dec 2008. He was a runner and very active college student. Within 5 months of being dx Ryan was in a wheelchair and is currently still in one. He is able to walk short distances with a walker and leg braces but has not been able to return to college yet. He is taking online classes this semester and is hoping to go back next fall as long as he is doing well.
The most common treatments are IVIG and plasma pheresis and prednsone. Ryan did IVIG for 8 months but it didn’t help him and he is currently on high doses of prednisone and plasma pheresis. however, this current treatment has probaBLY DONE all its going to do for him. he cant stay on prednsone for long time because of the side effects so neuro’s are weaning him off and are also taking him down off plasma pheresis too. since the majority of ryans strength has come from teh prednisone not plasma pheresis and Ryan has requested to do chemo (cytoxin).
IVIG and plasma pheresis put many CIDPers back to normal or very close to normal and maintain them from one treatment to teh next. for most of them in order to stay normal or close to normal they have to have those treatmetns every few weeks or monthly but they did not do that for RYan.
Plasma pheresis and prednisone has helped ryan stop going down hill. Prior to that treatment he couldn’t even transfer himself from his chair to his bed. He couldnt lift his leg off the bed. now he is walking short distances with a walker so he has gotten so much better but he really hasn’t seen any more progress in a while so that is why he is moving onto cytoxin. Ryan has a aggressive form of the disease so we have to be aggressive, sure he could continue on with the treatmetn and see if he gets any better within the year but he is impatient and wants to be back to normal as soon as he can and wants to get back to school and his life. so he isn’t willing to wait and see. so thankfully our neuro’s are understanding and willing to help him to see if cytoxin will get him better sooner.
I guess my only advice to you would be is find a neuro you like and that will listen and do what ever treatment or treatments that help you get better. you need some treatment and it will more than likely need to be on going. dont let them do one treatment one time and wait and see. if you do a treatment and it makes you better then continue to do it every month. if you find you need it more often tell your neuro to do them closer together. If a treatment isn’t working then have the neuro do a different treatment until you find one that works. every patient is different but the most important thing is to have a neuro who listens and acts on what you need.
You have to be your own advocate. it might take going through several neuro’s to find the one who will give you what you want.
Good luck and hope to see post more often so we can keep up with how your doing.
Rhonda (Ryan’s mom)
AnonymousNovember 22, 2009 at 9:35 pm
Remember that the immune system causes the problems that show up as symptoms. It sounds like you had an attack phase happening during the marathon run and thereafter. It sounds like you went through a little recovery phase, and then moved back into a relapse phase. Everything certainly sounds like CIDP
It sounds like you have a good neuro and a good relationship with him/her. That is always important. The next steps are reading, learning and asking questions.
I hope all goes well and you can knock this thing back down, take care of yourself, and keep it under control.
Although some people do get to a severe level, most CIDPers deal with it and can do most of what they did before.
November 23, 2009 at 1:38 pm
Sorry to hear you are struggling at such a young age. I too was running when GBS/CIDP struck.
IVIG to the rescue. Without IVIG I would be in a wheel chair or worse. It is amazing what it does for me. I function pretty much normally and most folks don’t know anything is amiss.
CIDP has prevented me from returning to running, and I get fatigued if I do too much physical activity. I also pay for excessive exertion the following day(s).
I receive 5 days of IVIG every 5 weeks along with low dose Predinsone (5mg) daily.
Best of luck, I hope your Dr. gets you IVIG very, very soon!
AnonymousNovember 23, 2009 at 1:43 pm
Thank you all.
zbrd (or anybody),
I was just about to ask a question that you touched on. I try to stay as active as I can, but I’m starting to wonder if it does more harm than good. On days that you do feel weak, do you take a break from exercise? I’m having one of those days. My legs just feel tired. I know that I could ride an exercise bike, but I don’t know if that does more harm than good in the long run. Any thoughts?
November 23, 2009 at 2:01 pm
Oh yea, you CAN’T overdue it or you will make things worse. When I walked a ton of miles in Las Vegas 2 months ago, it took me days to feel normal again. Also when I was riding my bike a lot in August (4-6 times per week) I required IVIG 3-9 days earlier than when I took it pretty easy between treatments.
I found that riding a bike was much easier than walking because I could basically sit down and take weight off my legs. I tell people my legs have 200 pound weights on them, that is how I feel.
I was riding 10-12 miles several times per week and enjoyed it, but after a 9 hour work day (office work), then riding 10 miles I was done for the evening and by Friday I was toast. That is when I cut back the riding and excessive walking.
I don’t even try to jog anymore, that makes my legs even heavier than the 200 pounds they each weight…
AnonymousNovember 23, 2009 at 2:07 pm
to answer your question, take a break today! Have the day off exercise and let your body rest up.
I have asked the same question here on the forum and with my New Zealand neuro and also of Dr Parry (a CIDP/GBS foundation prof who works at U of M.) The responses have been the same, and that is exercise within reason. Take into consideration your usual activity levels, and assess daily how you feel. I was stubbornly determined to get ontop of this CIDP and wanted to relearn to walk and almost run before i could walk again! In general they said if the form of exercise ever reaches a hurting point definately stop it. But basically it is finding what you can tolerate without becoming fatigued. If you are fatigue your body cant repair as efficiently. If your body is repairing you need to allow for this and factor that into your schedule etc while stretching, and / or doing light cardio. Make sure you rest afterwards and sleep is the best form of rest, but putting your feet up for half an hour or so is also advisable. I understand the ‘use it or lose concept’ so it is also very important to try and incorporate some form of exercise into a DAILY routine but i am sure you are already very focused on this and no doubt if youve had the discipline and motivation to train for marathons etc it will be harder for you NOT to exercise than to exercise.
hope this helps.
AnonymousNovember 23, 2009 at 3:59 pm
[SIZE=”2″][FONT=”Garamond”][I]We all seem to be stuck with the either/or questions …
Use it or lose it?
I’ve done enough, not even an exercise, that I’ve been wasted the next day.
Somehow … slowly and with missteps … I’m going to get it figured out just [U]how[/U] [U]much[/U] is enough but not too much and [U]when[/U] is enough but not too much.
I [U]do[/U] know that pushing too hard and/or too long creates pure bliddy h*ll the next day.[/I][/FONT][/SIZE] 😡
November 23, 2009 at 5:52 pm
Dr. Parry said at the symposium in Illinois last year, “No pain, no gain = pain, no brain” When asked about how do you know when you have over done it.
AnonymousNovember 25, 2009 at 1:13 am
Throughout all my ups and downs, I’ve found that if I don’t do some sort of physical activity at least 3 x a week, I get more cramping. Also, if I overdo things, I get more cramping. You have to find your own balance. On my worst days I try to at least do floor exercises like sit ups and push ups, and yoga that doesn’t involve balance. Moderately bad days I can at least do the stationary bike and the elliptical machine. Running without pain/cramps comes and goes for me. See if your insurance pays for physical therapy, and use that person like you would use a personal trainer.
Also, of course, drink lots of water and take some extra B vitamins! That’s helped some of the tingling and zinging nerve pain for me.
Good luck! I got CIDP when I was a little bit younger than you. Better days are ahead.
[QUOTE=Buck72]Thank you all.
zbrd (or anybody),
I was just about to ask a question that you touched on. I try to stay as active as I can, but I’m starting to wonder if it does more harm than good. On days that you do feel weak, do you take a break from exercise? I’m having one of those days. My legs just feel tired. I know that I could ride an exercise bike, but I don’t know if that does more harm than good in the long run. Any thoughts?[/QUOTE]
November 25, 2009 at 5:27 am
Before CIDP my exercise routines would vary from running to rowing machine or jus plain walking. However I only did vigorous exercise every other day to give my muscles a chance to rebuild in between sessions.
I added more and more but only very gradually.
Now with CIDP I cut my exercise in half or just rest for a couple of days.
I still only exercise every other day and if I don’t exercise for a couple or three days then I ease gradually back into a routine by doing a little less.
I understand that when our nerves are inflamed they cannot shoot oxygen and blood into the muscles and that is why the muscles weaken.
I think about what my poor muscles have been through and I baby them.
Rest and extra rest are crucial I think, but I love to exercise and I feel better unless I over do it.
My Neuro is weaning me off the prednisone after having reduced the amount
several time since I was diagnosed a year ago. I am feeling my strength and balance improving gradually and steadily. My progress seems slow but it’s always going forward.
If the prednisone stops working then I might need IVIG or plasma pheresis or whatever other drugs are out there. I hope when I stop the prednisone that
I will go into remission and that if I have a relapse I will get the right treatment.
Time will tell. Compared to where I was a year ago this is heaven. I haven’t needed anything for pain since last December and I can walk without support if the surface is level, but I usually take my walker for safety plus I need the walker to haul my groceries home. The busses here are handicapped accessible so I know I’m safer to get on and off with my walker.
AnonymousNovember 27, 2009 at 6:56 pm
But as Kiwi Chick and others have said…in different ways? You really haveto/MUST learn about what your body is telling you. For me, now, after several years of CIDP, is that I can almost feel like I am going to have the cement set around my feet right before I do too much! My body is telling me? ENOUGH. So I stop what I’m doing and switch off to something else and find a place to sit down and regroup my whole self, so to say. I have almost now a physical activity/effort and places to regroup clock set in my mind every time I go out so I do stretch my efforts, but not to the point of aggravating those nerves, muscles or find myself in some situation I can’t get out of and home to rest. IF I exceed my efforts? I will pay for it for at least two days.
Since you can still get around fairly well? Think about some short-term ‘interval training’ kinds of things…small bits/spurts of efforts several times during any day. That way you don’t wear out as fast, and can build up toning and muscle. AND you aren’t stressing your muscles thus not nerves.
Those add up to a whole. But it takes a lot of discipline. For the long and short term. I hope this helps, truly.
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