AnonymousMarch 12, 2008 at 2:08 pm
I think I am in an acitve relapse…either that or a noticable progression. My case has been a very slow progression…in that it takes a long time to notice changes.
The passed week or so my calf has been really tight and I thought maybe it was b/c I am doing alot. I have noticed that my feet…even the better one, are much more flappy and I’m not able to walk far at all without noticing problems. I am in the denial boat usually and try to not notice or think about what’s going on. Been very busy so I truly may not have noticed this time.
Last night my big toe on the right foot was completely dead and kind of hung there. I couldnt move it in any way. Scared me big time.
I woke up this morning and am able to bend it slightly down but nothing else…it just wont move…like the toes on my left foot.
My right foot has been the good one…well, the better one. Now I am unable to make circles with it or bring it up all the way. I really hate to think that this is continuing it’s coarse.
I’m on no treatments at the time.
Could the tightening calves have been the “signal” that something was starting ?
AnonymousMarch 12, 2008 at 2:57 pm
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!
AnonymousMarch 12, 2008 at 5:02 pm
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.
AnonymousMarch 13, 2008 at 7:56 am
do any of you have the paralzyed toes ? unable to move them or spread them apart ?
that doesnt also happen to the hands, does it ?
and why if my foot is on the floor, can i move my toes a little but if my foot is in the air, no movement at all ? Very strange.
This stuff is scarey…no matter how bad we have it, having it at all just stinks.
thanks for your help and advice. I’ll be making an appt soon.
AnonymousMarch 13, 2008 at 12:04 pm
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.
AnonymousMarch 13, 2008 at 2:06 pm
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.
AnonymousMarch 13, 2008 at 3:34 pm
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.
March 13, 2008 at 6:31 pm
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?
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!!!!
AnonymousMarch 13, 2008 at 10:11 pm
Dawn, yes, I am open to more IVIG. Problem is…they didnt think it actually worked for me. I didnt get worse but I didnt get better. Actually, I did get worse….very very mildly. That was according to the emg. Then he put me on the high dose steroids…didnt help and I wont try that again. Not unless I absolutely have to.
I didnt go back for IVIG b/c I didnt have the time. Now the prob is I dont have the paid time off b/c I took it all with my mom. And, that’s ok…we can get thru it I suppose. I just hate , once again, to burden or have my husband picking up even more slack. It just sucks !
I am likely to do the loading dose b/c that’s how the dr usually starts. Five days and then one day monthly. Maybe he’ll do a loading dose monthly.
I just want it to stop. I got used to the fact it wasnt going to go away. Now I want it, like everyone else here, to STOP.
With no having to take care of my mom and worry about her, I am noticing myself more. Wish I wasnt.
The toe thing seems common in alot of us. It’s like they are stuck and it’s an awful scarey feeling especially when you know it’s possible that it’s going just keep on moving.
I am soooooooooooooo glad Kevin is doing so well. That is such a wonderful blessing. Dawn you have been amazing to so many of us but especially to him. And, I know…it’s the mama bear thing…but, I really admire you, too.
YOu have learned so much about this crud.
And Linda that makes sense about why the toes move when they are on the floor opposed to in the air.
I cant do the ABC’s with my feet…they only will circle around half way. I try. Every day, several times.
Maybe it’s the stress. I’m trying to stay positive…and I think I am doing well. The fighting between my sisters is awful.
time for bed….
I plan to start packing this weekend ! What will I do with all the toys !
good nite everyone.
AnonymousMarch 13, 2008 at 10:33 pm
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!]
AnonymousMarch 13, 2008 at 10:52 pm
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.
March 14, 2008 at 3:05 pm
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!!!
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AnonymousDecember 5, 2007 at 7:51 am
Just a quick question. I have been going to PT for a few weeks now. Trying to maintain twice a week. Work fulltime, have small child, sick mom…ya’ll know…it IS hard for me to get to anywhere else twice a week.
But…I am doing pretty good with the PT…my opinion. They are helping with balance and I’ve done some stretching. Yesterday I was pretty weak in the legs so she worked on my shoulder and neck. She said my shoulder was awful with huge knots. I know…that’s why it hurts so bad. It’s where I carry my stress.
But, the reason I passed on my leg therapy is b/c my left foot…first foot affected by this crap…and worst foot…was real flappy by the afternoon and I didnt have the AFO with me and still had to go to the hosp to see my mom. I knew I needed my strength.
I’m better today.. but, since last weeks therapy that involved stretching…my right calf is very very tight. I would think by now any soreness from the stretching would be gone. I just wonder if anyone else has this kind of tightness in the back of their calves. It’s a pulling feeling when I walk and hard as a rock. Not real painful…but noticeably tight. I dont know if I should keep stretching it out or what. If it were a pulled muscle, I’d feel pain, right ? I dont have much sensation on the outside..to touch my leg…but I think I would feel it on the inside ?
I’m sorry to ramble…
I am so tired today. My mom isnt doing well. The days all run together and Xanax is my best friend.
hope all is well with everyone.
AnonymousDecember 5, 2007 at 10:24 am
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.
AnonymousDecember 5, 2007 at 6:00 pm
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.
AnonymousDecember 5, 2007 at 9:56 pm
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!
AnonymousDecember 6, 2007 at 8:16 am
I dont know what it is…it’s still there. Maybe it’s fatigue. It’s just real tight and pulling…that’s the best way I can describe. I’ll try to keep track of things…what hurts and how long after each therapy session.
I’m suppose to go today but they are calling for a snow storm and my mom is doing really bad…I’ll just go be with her and skip the PT today.
It’s a bad day in Omaha.
AnonymousDecember 6, 2007 at 9:55 am
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!
AnonymousDecember 6, 2007 at 5:17 pm
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.
AnonymousDecember 6, 2007 at 6:11 pm
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!
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