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.
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.
First welcome, Tara
Definitely painful and hot feet. Definitely when sitting on a hard surface for any length of time (weird, eh!), the toes go bright purple.
Most shoes are so painful after an hour or so I just have to take them off. I don’t get that nice feeling that you got when you took your ski boots or skates off, though…just more pain, but at least the shoes are off. The toes and foot are quite swollen – like they are retaining water, almost!
I don’t get the blotchy legs, tho.
It isn’t really fair – heels are pretty much out, even flats hurt – I have found that a good sturdy leather boot with a small, substantial heel is ok for winter. I wear my birkenstocks for the rest of the time, if I can. At least THEY don’t hurt too much.
I thought it was just me with the whole purple toe thing. Scared my neuro one day after sitting in his office chair for awhile, then taking my shoes off!
Take care and welcome to the site. Nothing is too strange here!
I have CIDP and was diagnosed in 1998. I can only stand on bare feet for a few seconds and would only be able to take a few steps, so my boots go on first thing in the morning and don’t come off until bedtime. For me, standing on bare feet is a weird sensation, it feels like rocks are embedded under the skin. I don’t know if they will ever get better.
I will join most of the others in their take on the tingling- 2 1/2 years –still in wheelchair but moving well in a walker and soon loft strands — my feet as well as hands have real off/on days -never any pain but some times they feel as they are covered with clay -and after stiff exercise they “buzz” some — and slightly numb — have been fortunate in avoiding the pins/needle feel–Every day it seems that GBS can manifest itself in different ways !
Keep pushing on