Hi Stacey. I’m new here and even though I was diagnosed with CIDP 8 years ago, I didn’t know much about long tearm stuff until I found this site. One of my first signs that something was not right was that I thought I pulled my calf muscle. I had been getting up before work to hit the gym and then twice a week I would go walking or running with a girl friend after work. One day we met up for a run and my calf hurt really bad and I figured I just over did it. Of course that was not the case as it was only a couple few weeks later that the tingling & numbing began.
I totally understand the denial thing. I’m not a mom but my life is pretty busy and even though I set aside time for myself, my mind is pretty sure I just don’t have time to be “sick”. I’m really big on not making “excuses” for any problems I might run into in life and I was afraid that the weekness and fatigue I’ve been having lately is just because I was doing something wrong or I’m weak because I haven’t been trying hard enough. Between my husband and the responses I’ve had on my post here in the main forum, I know my issues are more than likely relapse related and I need to go see my neuro again. Dang it! Oh well, hopefully the medicine will work as well this time and it did the first time,
Good luck Stacey and keep your chin up!

Before being dx with CIDP I had calf and leg tightness. Also my toes are contracting and pulling downward.
You have been under a lot of stress lately and ? should go to MD and get started on treatment.
Good luck and know we all are pullking for you

I get my thighs feel tight and the back of my legs. Some days more then other days. It all depends on how much I did that day. I told my Neurologist this last fall and she checked my thigh muscle and it wouldn’t stop moving she says.
I had 5 days of IVIG in January and the result I got last week was that very little improvements in some areas and in some areas slightly worse. I told her I still have problems with my legs. I also have tendinitis in my hands that won’t go away and I have had for about 1 year. She said tendinitis is not CIDP related. She has ordered an MRI of my neck down and she wants me to see a DR Bourque another Neurologist who is one of the best in Canada (don’t know why?)and also she is sending me to a Rheumatologist.

I think there is swelling in my thighs when they bother me. One day I tried measuring my right thigh and did it again the next day and there was a difference of 1/2 inch.

So the IVIG didn’t work for me and I wonder what to expect next. Some days I wish I didn’t have to work.

Sue

Hi Stacy, that is really weird! After I read your last post I did some experimenting. With my feet in the air my toes hardly move at all except the big one a few millimeters. But on the floor I can almost curl all but the big one a little bit. I have no idea why that is but I’m sure there’s an explanation for it.

Take care

Hi Stacey,
Yes, I also have the curled immovable toe syndrome. The reason we can move them better with the foot on the floor is because with the foot on the floor it becomes stabalized and we engage the bigger muscles and tendons to move the toes rather than the toes themselves. It is so weird that you noticed that yesterday because I have been watching mine and yesterday noticed that my left big toe has contracted even further and it has been catching on the stairs and rugs more. Unfortunately, that is probably the irreversible neuropathy. My neuro said I will never get that function back. Its way too peripheral, but that is where the AFO really helps quite noticeably. Thats why we fatigue more easily if we don’t use the supports, because we have to rely on the bigger muscle groups to do the work. Try seeing if the AFO makes a difference. Be well.
Linda

Thanks for the foot and toe info. PT noticed my toes on both feet are starting to contract. At times I’m in extreme pain and notice my first knuckle of several toes are being stood on. I plan on addressing this with the Neuro next time I go.
I looked up ankle and foot exercises ont he net and found a couple i’m doing.
One is write the ABC’s with your feet. Too early to know if it will help, but will keep doing them.
Was sorry to hear that this may be perm damage.

Hi everyone,

Just thinking, if the toe curling is progressive, could this mean there is not enough ivig and the demyleniation is current? Kevin is getting loading doses monthly, and I have to say, thankfully he is getting better, nothing worse and no symptoms, not even near the end of the 30 days. Would you guys be open to more ivig?

Initially, I wanted the maint. dose, standard protocol, but the doc was insistent on loading doses. He felt it was the best chance of getting to ground zero as he says and after a year consider going to six weeks and then more apart. I have to say, it seems to be working. We went to an immunologist who was involved in several ivig research studies and he had the same advice, independantly from our neuro. He did not know what the neuro had reccommended.

Would you guys be open to more ivig?
Dawn
PS, treatments ended today and his very loyal friends knew right when he would be ending and they came to get him outside. Last month I spoke to soon regarding no reactions as they were 2-3 days post so this time, if you can beleive it, I am going to shut my mouth about good news until 4 days post!!!!

my own experiences? That is that when we get this…well, we walk differently to avoid pain. We lose the muscle tone and strength in our feet and ankles because we DO walk differently. When we don’t use some muscles properly as in our feet, toes, hands, or wherever our tendons and muscles contract from the lack of use…they become less elastic and when we fall? Tears and worse happen. PT, but only finding a really good therapist is the best way to go. But be sure to ask for a ‘home program’ that is, one that includes exercises you can do at home and maintain after any round of PT ends. There are LOTS of simple exercises and what I call ‘trick’s that can be done at home that keep muscles working better-where they should be working. The simplest is taking a bunch of marbles and picking them up w/your toes and dropping them into a dish…I started out just mushing them in between the toes and waiting for gravity to let loose…but after about a month of PT with this [and other PT stuff] my toes actually started to WORK again! And, BTW the whole foot can ache with the effort…but it’s worth it balance-enhancement-wise. Silly, cheap, and effective. It wasn’t graceful at all to start tho.
As for any relapse? Stacy, you have to consider/reconsider the time it takes for infusions versus the time you might just be plain laid-up with the CIDP? I don’t know about anyone else here, but my IVIG IS my primary appt! All others have to be ‘fit-in’ around that. No ands, if’s or buts. Even surgeries are scheduled so I won’t lose the IG benefits to surgery recovery – that seems like good stuff down a black hole otherwise.
Dawn – I am soo glad that Kevie’s doing well this time? [I’m knocking wood as I write this!]

I should have included in my post that my neuropathy is a combination of the CIDP and Diabetes. Because I have had Diabetes for 33 years, the neuropathy has had a longer time to do damage. So it may not nessecarrily be true that others on here can’t improve. Another thing, about the exercising. Remember that it’s not about improving muscle strength as it is the nerves inability to repair and respond, so exercising won’t improve the ability to get stronger, but it does help to keep circulation and the tendons from further contraction, so don’t give up but don’t over do it on the muscles.
Be well all.
Linda

Hi Stacy,
Regarding the time off for ivig, how long did your infusions take? The home health agencies are pretty good about times. Maybe you could schedule it for after work, or once you get comfortable with it, the nurse could come early in the morning before work, start you and you could go to work with a fanny pack. (not sure if you have to have a port for this, maybe someone else could chime in) I am so glad you have the time to take care of yourself now.

Kevin IS getting LOADING doses monthly, for a year, then we will spread out. Maybe you could try this. Since Kevie was having post reactions, I even asked if we could break them up, 2 days every two weeks, so maybe you could do a Friday after work and follow with Saturday. Actually, that sentence should have been in the previous paragraph!!! Back to this paragraph, maybe you needed more than one loading dose last time, some do take a few loading doses before they notice a difference. I know you will figure this out!!!
Dawn

Stacy, i feel like a gaint rubber band is pulling at the back of my legs from my rump to my knees and then from knees to feet. My right toes attempt to curl. The pain thankfully is extremely sharp and then will let up.
I start PT/OT today.
So sorry about your Mom and hope she has showed some improvement overnight.
I can not imagine the schedule you are presently maintaining. God is givning you the strenght to do so.
Know that you are in my thoughts and prayers.

Stacey,
Is your PT keeping notes on your symptoms from the exercise and how long it takes for you to recover? If not, it would be good if you did so that you can see how much recovery time is needed before you work that muscle group again. Normally 24 hours is enough, but with CIDP, it can take longer so keep an eye on that. I have that tightness too and my recovery time is 2 days so I don’t work on those muscles until I am recovered. The time should get less with therapy. Don’t push!!!! You are doing great and a little at a time is best. You also may be feeling that stiffness as a result of the AFO’s. Just keep track of these symptoms and try and establish a pattern so you can report to your PT and doctors. I hope this helps. Take care and stay in touch.
linda

Stacey you have a very busy schedule! That could contribute to some of the stiffness. But don’t forget the AFO they will give you the support you need especially when you are tired.

You mentioned it is stiff after therapy that involved stretching. Could you be over extending or hyperextending rather than just stretching or moving that area? Also are they giving you any exercises to move that muscle in the opposite direction to keep it from cramping or stiffening? Warm bath or compresses after exercising? The exercise will get the blood and oxygen into those areas and if you do not do warm up and cool down exercises and get the toxins out of that muscle that might be the problem. Also do exercises on the muscles and ligaments and tendons around that area. Write the alphabet with your toes as you lay in the warm bath. Do more types of movement and hold that position like they do in some of the types of Yoga. Most important give it time to rest and heal. If you were to feel pain then you would immediately STOP! Also until your strenght come back more your making a muscle that is weak do alot of work. Just the weight of your body is a task that will make it work harder. If you have access to a heated pool and do exercises in that it will take some of the weight off your joints and warm up the muscles to relax them. Just make sure you have discussed this with your PT person. I also have a rehab Doctor that follows my case and I can discuss things with her and she writes the prescription for PT on the table with heat treatments or work on the stability ball or machines. In reality it should take you only 18 to 24 hours to heal and I do machines one day and they skip a day. That off day I use the pool and do other things like Yoga. Some communities have places where you can exercise with your child which would be fun too! When we feel tired it is not a pain it is more like a stiffness or tight from swelling. Rememeber the nerves are inflamed with this illness. Keep a Journal of your activities and you might see where or what area you are over doing. Running up and down the steps all day and chasing a child around and picking up toys and grocery shopping or going to the mall all are enough to put your daily routine over the limit! Also, make sure your shoes are proper fitting. They can cause ankles to ache or your back, hips, knees and also your calf muscles to feel uncomfortable. Keep us posted! You are an amazing busy lady!

I think that is what Emily feels in her calves too. She gets it when she over exerts herself with too much excercise or if she’s overly tired. Sometimes she has it in the morning too & I have her stretch out a bit & then I’ll rub her legs.

My advice is to GET SOME REST this weekend. I know you have a lot going on but take an afternoon just for you. Maybe sleep in a bit then stay in your pj’s all day. YOU NEED IT!

Kelly

I am having problems with my legs and thighs. Sometimes my thighs hurt so bad I have to sit down. Also the last few days the back of my legs hurt so much.

I saw my Neurologist last week and she put a needle in my muscle in my right thigh and the muscle kept twitching wouldn’t stop. She figures it is my nerves causing that. I didn’t feel the twitch but the machine noticed it and I heard the noise it was making.

I am getting another 3 days of IVIG as soon as they can book me which might just be after the holidays.

I work 39 hours a week and when my legs hurt like that it makes the day long. Also I take my Lyrica during the day if I am in pain and that makes me drowsy sometimes.
So I understand what you are going through.

Sue

hey stacey,

i was diagnosed with gbs in february 2006. i had that problem with my calves, they used to be so so tight and would really hurt when id stand up, especially first thing in the mornings. my physio got splints made for me. they where made of stuff thats similar to the plaster you would wear if u broke a bone. so they make a mould of your legs and then make the splints. (it takes about a week). you put them on when you’re going to bed and wrap a bandage round them to keep the closed and you wear them while you sleep. they take some getting used to cos they are heavy and hot but i found they worked a dream!! my calves didnt hurt in the mornings cos they are design so that they are giving your calves a constant gentle stretch all through the night. you use them every night for a couple of months and then you ween yourself off them slowly. i really found them good. so i hope that helps you!

I’ve had aches in my calves off and on for a long time even without exercising. I suspect that this is caused by my unnatural way of walking. I have drop foot, do not wear AFO’s and probably walk like a stork to avoid tripping.

After PT, I feel it in my hips and abdominal muscles, because my PT-ist stresses how these core areas need to be extra strong to compensate for my weak feet and calves.