Cidp And Muscle Atrophy

If I am not sure about the seating, I usually carry a pillow with me. Those folding chairs with the hole in the back do me in. A pillow helps a lot. Often I will carry a smaller roundish pillow for my lower back. As a matter-of -fact, I am using one of those right now.
Mary Ann

Hi, wife.

I only wish the CIDP would affect my gluts–and my thighs and a few other places. Instead, my muscle loss is slowly creeping up from the feet to my knees, and my hands are skeletal. But it depends on where the worst nerve damage is being done. (My fear is that I’ll end up with menopausal hips and a CIDP-sunken chest.:rolleyes: )

I had good success with IVIg for five years, but the last year it hasn’t done much for me (I get it about every six months). After my last course I felt absolutely dreadful for a fortnight–fatigue, weakness, etc. It finally eased off. My problem is that the CIDP has changed course so that rather than having major relapses every few months requiring treatment, I’m having mini-relapses and then automatic remissions every few weeks (although each relapse leaves me a little worse than I was before).

How long has your husband had CIDP? Most people find that they need at least a year to determine how they’re going to be affected.

Best wishes in the battle,

Deb

Hello,
Our muscles are not damaged, it’s the nerves, our message senders, that are damaged and they cannot tell the muscles what to do. I cannot sit with my legs crossed because it feels like bone pressing against bone, so I know what you mean.

Try a “SOLID FOAM” pillow (not shredded) for your husband to sit on. I find this more comfortable then gel or cotton batting. I am in a wheelchair and do alot of sitting, good thick foam works best for me.

Your husband may need a maintenance series of IVIG’s rather then just an aggressive series over five days. I was on IVIG one day every two weeks for about 2 1/2yrs.

All muscles will atrophy from not being used, because the damaged nerves cannot send the proper signal to the muscles.

Is your husband getting physical and occupational therapy? He does need it.

Ugh…muscle atrophy! I had it really bad throughout my feet, legs, glut, hands, and arms.
My PT started with my stomach muscles ( I had just had a baby) and my gluts and began to ‘rebuild’ them while the occupational therapist worked with my hands. After these began building back up, she worked my quads and hamstrings and forearms and biseps. I couldn’t believe how much I had lost until I started gaining it back. It took 3 months of occupational therapy for the hands and 6 months for the rest of the body to even resemble a normal person’s body again. I never regained the muscle in my feet as the axonal damage was too great so the feet and calf muscles still look incredibly scrawny:o But overall, PT was a wonder for me and really helped me regain a more normal looking gait.
As for the headaches, I had horrible ones both due to the infusions and due to trying to relearn how to walk and use my hands. My neuro said it was equivelent to studying too much – my brain was tired from having to work double time to do what comes naturally for so many.
I still get migraines following infusions and I get really whooping headaches if I’ve walked too much. Proof that I do have a brain (much to my brother’s comments, LOL) and I overwork it with something as simple as walking too far. Walking is no longer involuntary for me…I have to tell myself to pick up my feet…heel, toe, push…
I hope he finds relief from the headaches…they can really make or break a day.

my muscle atrophy was one of my first symptoms. began in my gluts and has spread now through both legs to my feet. the weakness and constant twitching muscles can be very annoying. i haven’t experienced much discomfort when seated, however. when i do have problems, i find that if i lie down on the bed or couch and place a pillow or two beneath my knees this releases some of the stress and pain from my lower back and glut area. give it a try.

unlike some of the others who have posted, i haven’t been able to regain any of my muscle strength back in my gluts, legs, etc. i’ve worked with physical therapists, gym trainers, etc. and hasn’t helped. before cidp i was very physically active: gym, skiing, etc. i still go to the gym but i’ve found that because there has been nerve damage the muscles won’t respond the way that they should. i believe that if i overwork the muscles and if they aren’t receiving the info from the nerves that they should receive it is doing more damage to the muscles. mild exercises: stretching, walking, etc. seem to help me both physically and mentally.

for my ivig headaches i take a migraine pill: imitrex.

good luck!

best,

brad

If the muscle relaxers don’t work for your husband’s headaches it might be worth it to try a migraine medication. Migraines come in a lot of different forms. I take Maxalt for mine. It is so helpful. I have had migraines for years but have only had IVIG therapy for 5 days. After the fifth treatment I got an awful migraine. The Maxalt took care of it. Good luck to you both.

My headaches following an infusion usually start 24-48 hours after and will last for a few days.
I had never had migraines before I began the IVIG and never really realized what people with migraines went thru. After my initial 5 day treatment, I had to have an IV of caffeine and torodol after being rushed to the emergency room. Of course then, I went from barely being able to move to being completely wired from the caffeine…not sure which was better.

wife, try asking for Relpax for hubbies’ headaches. it can be given in a couple doses, each person reacts differently to pain and meds. i use 40 mg 1 and if that doesn’t help i take another one an hour later. this i can do 2 times in a week. it works great for me. i have had migraines for over 20 years, and this is the best treatment that gave me no side effects. take care of yourself and my best to your hubby.:)

[QUOTE=hiswife]Thanks for the information, it’s not just his gluts that are affected but its just a very bothersome symptom. His quads his knees, his feet. His first neuro had him on ivig every 3 weeks and he was improving, then when he was switched to a different neuro. he changed treatment plans & stopped ivig’s until he felt considerable weakness and loss of strength, he seemed to get that about 3 weeks after but by the time the dr saw him & either said yes or no to another course of ivig it would be 5 weeks out from the last, he started getting considerably worse over the last few mo. But this last ivig was 3 weeks from the previous one and he feels horrible, he has a lot of weakness. His new neuro. is going to hopefully do the maintenance series of ivig instead of the aggressive dose, at least until we see if the Imuran works, he hasn’t been on it long enough to know.

He found out he had CIDP in February of this year. It was hard to diagnose because he had a back surgery, fushion with hardware in Dec. 05, so when he started getting symptoms for the longest times they thought it had to do with the surgery until it started to affect his upper extremities.

the other thing he’s really struggling with is severe headaches, does anyone have these with CIDP. The doctors don’t know what may be causing it. They are there all the time. We have so many questions for Washington University when we go, hopefully they will be very helpful for us. Thanks again

hiswife[/QUOTE]

I know what you are going through! I am a new member, just sining on today. I have been reading many of the topics discussed here.
I have been going through hell since 2003, having been in perfect health prior.
But headaches, which my neurologists lated told me that they were migraines, were horrible.
UNTIL I finally found a neurologist specializing in rare neuro. disorders. He was also part of a team of neurologists, of which the group formed the “Migraine center for Southern California”. They often do much research and human guinea pig testing with new or possible drug help.
My neurologist, by the way his name is Dr. Gregory Sahagian, had me try Indocin 50 mg. three times daily. This team has be experimenting with drugs that originally were for osteoarthritis, (I am not a doctor, so I don’t know the medical terminology for it). One of those drugs was Indocin. I had originally tried various “meant for migraine meds” to no avail.
Then last year I started with the Indocin. It is very harsh on the stomach, so he also prescribed Zantac twice daily.
I gotta tell ya–I went from having migraines 2 or 3 times per week, down to once a month. I do avoid long exposures to outdoor light, as that is what triggers mine. But that Indocin REALLY HELPED ALOT!
Mention this to your doctor– it is a very new therapy, and I can attest to it’s good effects. I hope this will help.
THIS IS ALSO MY FIRST POST, SO I HOPE I AM DOING THIS RIGHT (LOL).

I had constant headaches for about two weeks after my initial trial with IGG. I find that stress causes some of the headaches but not all. I get a lot of pain in my neck. Cold covered ice packs applied to the top of my head seemed to help. Also, wetting a dish towel with water and microwaving it for about two minutes. Let the steam die down then chek the temp with your hands. When it is warm not hot apply to the back o f neck. It helps plus it is drug free. I am so sick of taking pills.

A wet dishtowel heated does feel good but it can also leave things pretty wet.

I was told by a nurse to fill a sock (perferably CLEAN, LOL) with rice. Heat the rice in the sock for at least a minute at 30 second intervals until you find the temperature that feels good to you. It will stay warm for quite a while plus your neck and bedding won’t get wet. I didn’t think it would work at first and was amazed at the results.

Plus, like you said, it’s drug free. (I don’t like taking pills either!)