My feet oh my feet

I was dx’d in 2005 and that feeling of your feet that you describe is still like that for me and may never fully return to normal I have found though that I am finally dealing with things alot better By not sweating the small stuff lol.
there are many things that are there that I cannot change but have adapted. I hope that like the rest of these residuals that i have it will Slowly and eventually get better. good luck and sounds like you are getting better so what you have been doing is working keep it up….

Carol

When I first started with the whole CIDP thing my feet were the worst and still are!

I described the feeling to my doctor that my feet felt like plastic…wierd.

Now I have very limited motion and very bad swelling. It is painful to walk without shoes and I can only walk a short distance. My feet often feel like they are being squeezed in a vice grip.

I was getting IVIG every three months but it was too long to wait and symptoms were bad. I then changed to every two months but this month I was approved to have 92 grams every month! I am excited and hope this will help. I go on Tuesday next week.

My doctor has also put me on water pills to help with swelling of ankles and feet.

Take care and keep those feet up!

Rhonda

My feet give me alot of problems. I now keep foot pain when I walk on them alot and they still feel like I am wearing heavy combat boots. I have trouble finding a good supportive shoe now for wearing shoes causes me alot of pain. The price we have to pay! I still have dead feeling feet and doubt it will ever heal completely! But am happy to know that I can now stand and walk again! But it’s short distances. Long distances I need a wheel chair to ride in. Hope your feet start feeling better soon. Not fun having your feet but when my arms were really bad off. I wanted to cry! I need my arms and my feet but my arms to me are far more important. Hugs
Linda H

Carol,
I have CIDP. my feet are my biggest problem. Fortunately the sensation of waring “combat boots” all the time is nothing new, since I spent 25 years in the military. As a matter of fact I wouldn’t be able to drive if I wasn’t use to driving heavy trucks and flying while wearing heavy boots. I was never able to “feel” the controls. I had to rely on secondary inputs [IE what happened when I push on something] I know it can be frustrating at times especially when you know you pushing on the bake and nothing is happing. I’ve learned to check and make sure my other foot isn’t under the pedal.

Feet can be a lot of fun. Just as long as I can remember to keep them out of my mouth, I figure I’m ahead of the game. Hang in there and keep your sense of humor.

Hello Carol . They told me that the feet are the last to come back. Well I got hit 10 13 07 and if I look back ,just 6 months, I have noticeable improvement.
I still have the feel of rocks under the balls of my feet, not as bad as 6 months ago. An old timer on here ,Gene , who has since passed away ,would say his feet got better after 2 years, So I still have hope that ,they will, evan get better than they are today. I still work and have been on my feet for over 8 hours. It use to be , that when I did that, I would come home and have a vicodin or 2 and sit in my recliner all nite . Well this last week I havent had a vicodin in 7 or 8 days. The cold here in Mi, is causing my feet great pain, so I may take a vicodin today ,but I am trying to get off them. It is just a weird senssation , in my feet , that is hard to describe.
I have full range ,but they are still numb and cramp occasionaly. Hang in there and be patient,for they will get better.Not as fast as we would like but they will.
Ron

Ron,
I have problems with my feet like Carol, Rhonda and others do and still hope for more improvement. I got GBS Oct. 07 but have not made enough improvement to be on my feet any longer than 20 to 45 min. before I have to get back in my wheel chair. How soon after getting GBS did you get full range back and do you have promblems with balance?
Hope those feet feel better.
Shirley

Carol,
Sounds like you are making good progress. Keep it up.
Good luck
Shirley

Ron! You just described my feet to a T! That is what it feels like. Like I have rocks under my feet. I even went to go see a Foot Doctor thinking I have Planter Fascitis but didn’t! He said I was experiencing nerve pain. Nerve inflammation. So he gave me cortisone shots in my feet. Worked 3 days and then the walking on rocks came back. I just wished I coud find a decent show that would not hurt me wearing! I solve that issue then maybe I can start walking good again!
Linda H

[QUOTE=Matteyrae]Ron,
I have problems with my feet like Carol, Rhonda and others do and still hope for more improvement. I got GBS Oct. 07 but have not made enough improvement to be on my feet any longer than 20 to 45 min. before I have to get back in my wheel chair. How soon after getting GBS did you get full range back and do you have promblems with balance?
Hope those feet feel better.
Shirley

Carol,
Sounds like you are making good progress. Keep it up.
Good luck
Shirley[/QUOTE]

Hello Shirley. I have had full movement for at least 6 months. Full strength isnt back yet.My PT guy used to have me walk on a 2×4 8 feet long. He would have me walk forward, one foot in front of the other, while he held my belt. That was for about 2 weeks , and I would make it. Then he had me walk backwards ,and I think I could only do 2 steps. That was about 4 months after my attack. I hope you will get some stamina back in your feet to last longer and longer.

Carol and all. I also have mainly foot to calve problems and feel like I am wearing heavy shoes, or that I am walking through water, that I am constantly climbing a mountain, or that my lower legs are packed into wet sand. All these are approximations of what it feels like because it is hard to describe. Sensory feels like I have socks on or a layer of cardboard between my feet and the world. I feel like I walk on a piece of cloth bunched up in the shoe all the time especially on the left foot. Thank goodness it is not rocks–it is not painful–just annoying.

I would like to comment on a few things Carol said. First, a spinal tap does not rule out the presence of CIDP–it is more complicated than that, BUT the fact that it seems you are making continued progess toward improvement is an extremely strong argument. Second, I have always heard and seen healing in the oppposite direction from onset. the damage with demyelination is along the nerves and so it is the longest that usually have the most cumulative damage and that are first affected. This is not 100% because sometimes there can be more damage to a specific nerve area (because of compression, because of loss of nerve function with axonal damage and other not well understood reasons).

These are a few things that seem to help me or that I have had others say that help. Elevate your feet to flat as much as possible in the day. If you are sitting down, get your feet up on a box or ottoman or whatever. Shoes with cushioning help. On this forum, a number of ladies have commented that New Balance shoes seem especially good. For me, they are well cushioned, provide more ankle support than most shoes, have a wide/stable base, and are light. It is hard enough to lift the feet without wearing heavy shoes. At the neuropathy support group I attend, there has been discussion about getting “diabetic” socks that are soft, not compressive at any area, but more importantly have the “seam” in the sock minimized by removing it, making it very smooth, or raising it to on top of the toes so people do not have an bunching of socks in the ball of the feet. Some people say foot massage helps the feet get used to feeling again. (No matter, it is a good reason for getting one!). Some people say it is really hard to wlk barefoot and that it is better to have shoes or slippers on. I do stretching exercises in the kitchen holding to the counter top where I made it taller for me bacause I am tall. You can also do the foot exercises holding on to a chair, but I feel more stable at the countertop. I lift to my toes and then try to raise my toes up off the ground. The kind of nice thing of doing this in the kitchen is that it is a room I do go into and that when there, you often are doing something that requires some waiting–like using the microwave and so have a good excuse to exercixe strength and balance in that couple of minutes. Last one I can think of right now is that it is really important to many of us to keep the feet warm as pain gets a lot worse if not. I hope something of this helps–if not the suggestions, then at least the fact that each one of us is not alone in this.
WithHope for a cure of these diseases and a better way to live with them until then.

I thought I’d chime in on the New Balance since I am one that swears by them.
I’ve tried Nike and all the others and NB’s are by far the best for me.

I get wide…always, even tho I dont really have a wide foot…I didnt before CIDP but since I cant move my toes, they are easy to put on b/c my toes will bunch up b/c I cant keep them straight when I put them on.

I have three pair that I rotate. Two of them are 413 and one is 474. They all have numbers on them. I think mine are more like a running or aerobic shoe.
All three are pretty colored ones so that helps with the only being able to ever wear tennis shoes.

I have no feeling in my feet. Total sensory loss. I have slight drop foot now on both sides but more so on the left. I am able to lift my feet to walk but I have to concentrate with every step. If I dont, I fall b/c my big toe catches and trips me. Very frustrating.

I cannot move any of my toes any more and I struggle to walk with no shoes on. I dont wear shoes around the house but I dont walk so well either. When I walk barefoot, 99 percent of the time, it feels like I am walking on broken glass. When I have socks on, the broken glass feeling is there 80 percent. I’ve become used to that..it’s very painful but I trudge along. I dont wear shoes in the house b/c we have new carpet and I dont like to wear shoes anyway…painful or not. Strange, I know.
I am just very grateful that I can walk as well as I do. I know that I am blessed even if I walk like nobody else does. :rolleyes:
I would highly recommend the New Balance. Try on several styles and go with what’s most comfy.

I hope you are doing better.

keep us posted on your shoes….
well wishes,
Stacey

Thank-you Hope and Stacey for the tips for my feet! Going to check into the New Balance Shoes. We went grocery shopping today and before I could finish getting my groceries, I could barely walk. My feet were killing me.
Stacey! My toes are too dead. It feel weird and sometimes I do okay while other times I don’t. No feeling in my toes at all.
You know how some people have to get on their tippy toes so they can reach something in a cabinet! Well I have no feeling and can’t stand on my tippy toes! If I do I will fall. And I think because I have no feeling and everything is dead there that I end up leaning more on my heels causing them to be more stress out and then pain sets in. We we got our home I wanted carpet! My husband wanted hard wood floors and ceramic tile. The tile is beautiful but it tears my feet up. We have carpet in our living room. Only one room with carpet! I even bought those fluffy puffy bedroom slippers and they are so puffy that I almost break my neck trying to walk in them. I am still telling him I want more carpet in my home. Cushiony carpet too! LOL! Thanks for the advice about the feet. Something I have major problems with. Hugs
Linda H

Hi Carol! Sounds to me like you are having a residual! If you are not happy with that neuro, I think I would see about getting a new one. But it’s like starting over with them. Getting tested and retested. But then sometimes a new Neuro sees something the other Neuro didn’t! I certainly would see someone different!
I too when I get sick or have surgeries get petrified. Have seen one surgery go well and then yet another surgery cause a major attack on my nervous system. Seen me get sick with a cold and boom! Another attack!
This coming Monday will be two weeks of having 3 teeth pulled and then last week another 3 teeth and have 4 more at the top to pulled. Last night I started getting burning in my feet and felt drained. And I was doing so good too! Now I am scared to get the 4 other teeth pulled. I hate to admit it but I do become a big chicken when I get these attacks. It scares me!
Our immune systems are different from the average normal person and sometimes when we get sick we get exerbations just like a person with MS does. But they call them residuals and depending what you are diagnosed they call them exerbations. When you get that way, your body is telling you to rest and don’t overpush on anything. In my case it requires rest. Lots of rest until you start feeling better. Then you slowly try to gain strength again. Hope this helps and I wish you my best! Hugs
Linda H

I’m getting IVIG every 14 days and notice a definite cycle in my foot situation. The worst is the day before and the day of the infusion, when I can’t feel my toes and feel like I’ve got marbles glued to the balls of my feet. By the day after the infusion, though, I’ve got nearly normal sensation in both feet (except a little numbness in the toes). Sensation gradually diminishes until, two weeks later, I’m back at numb and marbles.

I’m having several problems as a result. First, when my feet are numb, my toes sit in funny ways in my shoes and I end up with blisters. I’ve figured out that most of them are caused by my toes rubbing against the toenail on an adjoining toe, but even when I’m obsessive about keeping ’em trimmed really short, I still end up with a blister or two each week. Second, I’ve got what, until CIDP, was a moderate case of athelete’s foot. Keeping it under control was a matter of applying some cream when I noticed a spot on my foot itching. Now, though, the day after my infusion I discover that my entire foot is itching like crazy. Slathering on the anti-fungal on a daily basis doesn’t seem to help, so I’m guessing it’s just a matter of the old brain getting used to a new input every two weeks. Finally, the muscles in my feet are constantly sore. I reckon that’s a function of walking funny on them because half the time I can’t tell where my toes are. Definitely sucks, though, because even the bi-weekly numbness cycle doesn’t touch the muscle pain. I’m also noticing similar pain and muscle cramping in my lower legs that I again attribute to an altered gait.

Suggestions, of course, are always welcome!

I too had your feet issues-they seemed they belonged to someone else-gradually they have improved -if the Gbs started to manifest in your feet and legs first,it will be the last places to improve-fight the good fight–PAX