In reading LivingwithCIDP messages, I noticed many discussions of foot problems including tingling, numbness, pain, loss of sensation, difficulties in controlling foot motions, etc. However, when I did searches of the website for "foot care" and "podiatrist," I got very few hits. In fact, when I search the Internet for info about CIDP and foot care, I found little specific information. In contrast, there is a great deal of information about foot care for people with diabetic neuropathy. All of the problems mentioned above can also be found in people with severe diabetic neuropathy. Diabetic neuropathy is the leading cause of foot amputations in this country. Diabetic patients may develop serious foot problems because they are often susceptible to infections and do not heal well.
This may also be true of many people with CIDP. There are a number of members of LivingwithCIDP who have diabetes and/or immune deficiency disorders which make them vulnerable to infections. In addition, a large number of members are taking medicines that suppress the immune system, making them more likely to develop serious infections.
Whilst my feet are numb and have tingling there is is nothing wrong with the skin or the bones of the feet. I cannot spread my toes of flex them properly but as far as looking after them properly it is important that someone else check them for infections or athletes foot etc because you may not pick this up yourself due to a lack of feeling. Be careful of stepping into a hot bath i.e. check the temperature with your hand first. A podiatrist or special treatment is not necessary in my case.
Glen
I also cannot spread my toes or flex them, although my issues are primarily on/with my left foot. I have found shards of metal and various odds & ends lodged in my left foot which had been left lying around by my kids. Proper checks are a must! And I disagree with your assessment that a podiatrist is not needed. My Neuro didn't see a need for a podiatry consult, but my physical medicine Dr was concerned about the possibility of broken toes. Strangely enough, it was my "good foot" which had the broken toes, but my bad foot had other issues, so I'm glad I was sent to the podiatrist!
Before I was diagnosed with CIDP I mentioned to my family Dr I was unable to bend my toes on my left foot along with the numbness and tingling, no recommendations were made other than trying yoga.(serious) My neurologist has also been told,it seems it is written off to CIDP nothing can be done. Does anyone know if Gammunex C suppresses the immune system and should I avoid being around people who are sick? My legs,feet,hands, and sometimes arms are unable to feel heat. I have to be careful in the shower because I keep turning up the heat until I can feel it. Does massaging the feet and toes help anyone, it helps me with pain relief.
Regarding Nancy's question about whether Gamunex C suppresses the immune system, my opinion is that Gamunex C (and other brands of intravenous or subcutaneous immunoglobulin) regulates the immune system such that autoimmune processes are suppressed and resistance to infection is enhanced. Drugs that increase susceptibility to infection include steroids, anti-rejection drugs and certain cancer medications which are sometimes used to treat CIDP. As far as avoiding people who are sick, that would depend on a number of factors including the type of illness, protective measures that can be taken and the importance of being near those people.
Thank you for your response. I know for sure I will not be getting a flu shot this year so I guess I will be extra careful.
JonJ said:
Regarding Nancy's question about whether Gamunex C suppresses the immune system, my opinion is that Gamunex C (and other brands of intravenous or subcutaneous immunoglobulin) regulates the immune system such that autoimmune processes are suppressed and resistance to infection is enhanced. Drugs that increase susceptibility to infection include steroids, anti-rejection drugs and certain cancer medications which are sometimes used to treat CIDP. As far as avoiding people who are sick, that would depend on a number of factors including the type of illness, protective measures that can be taken and the importance of being near those people.
My physio notes decreased circulation response in my toes and there are other things that point to less efficient circulation. My doc agrees and notes that this is a direct result of the nerve problems. To counter the problem my physio suggests exercises like toe flexing - try to move a towel on a tile floor just flexing your toes! Sometimes I can only move my big toe but now I try to move my toes whenever I think about it - no towel necessary.
The decreases circulation may also effect skin condition. The suggestion there is to massage in moisturiser or something like bio-oil.
Having said that - there is nothing like preventative maintenance. Good footwear to avoid damage from inanimate objects will certainly help. I have noted that good thick socks are really helpful to keep the feet warm as that helps with circulation.
On the matter of infections - I do believe I am far less susceptible to nasties than most people because I am getting IVIg treatment. All those extra antibodies must be doing some good!
Quote from Wikipedia - source of all knowledge ;-) "IVIG is administered to maintain adequate antibody levels to prevent infections and confers a passive immunity". So - hopefully I am almost totally immune to everything from the standard colds to rabies! Got to some benefit from having CIDP!
The loss of heat sensation is common with CIDP. Massaging does seem to help. The Vascular surgeon I was referred to (in order to make sure the coolness of my skin didn't mean I had bigger underlying issues) said that people with neuropathy issues (not just CIDP) often have issues with skin which is too hot/cold to the touch because blood flow is regulated by the nerves tightening/easing muscles around the veins. Without the blood flow control, the amount of heat retained/released is not governed by your body, but by gravity and heart rate. He recommends that if I notice my foot is very white/cold then sit down, put my feet up and calm down. If I notice my foot is red/hot, then move around and massage my feet. It seems to work.
nancy said:
Before I was diagnosed with CIDP I mentioned to my family Dr I was unable to bend my toes on my left foot along with the numbness and tingling, no recommendations were made other than trying yoga.(serious) My neurologist has also been told,it seems it is written off to CIDP nothing can be done. Does anyone know if Gammunex C suppresses the immune system and should I avoid being around people who are sick? My legs,feet,hands, and sometimes arms are unable to feel heat. I have to be careful in the shower because I keep turning up the heat until I can feel it. Does massaging the feet and toes help anyone, it helps me with pain relief.
Well said! I recommend diabetic footwear, as it best supports foot protection and circulation. And lets face it, there are more people who know what Diabetes is versus CIDP. I purchase diabetic socks off of Amazon, I find them cheaper than I usually find out on town (like 100% cheaper!) and the shipping's pretty cheap.
As for footwear, I personally like Dr. Comfort, but I'm also limited in what can be covered by insurance. There are many diabetic footwear companies out there, some cheap (~ $100) if you have to buy out of pocket, some very expensive (> $250) if you can afford it or your insurance covers all or part. With footwear, the adage "you get what you pay for" usually applies, but not always.
Michael C Stark said:
Having said that - there is nothing like preventative maintenance. Good footwear to avoid damage from inanimate objects will certainly help. I have noted that good thick socks are really helpful to keep the feet warm as that helps with circulation.
my advise is not to listen to jonj he desn't know what hes talkiing about. hes a dummy trying to make everyone think hes smart. go read the post 'first time relapses', mdolich made him look like a fool.haha
they should have kicked him (jonj) out of the group but instead they shut down the discusion. people like him is why so many don't answer the posts. he likes to argue.
nancy said:
Thank you for your response. I know for sure I will not be getting a flu shot this year so I guess I will be extra careful.
JonJ said:
Regarding Nancy's question about whether Gamunex C suppresses the immune system, my opinion is that Gamunex C (and other brands of intravenous or subcutaneous immunoglobulin) regulates the immune system such that autoimmune processes are suppressed and resistance to infection is enhanced. Drugs that increase susceptibility to infection include steroids, anti-rejection drugs and certain cancer medications which are sometimes used to treat CIDP. As far as avoiding people who are sick, that would depend on a number of factors including the type of illness, protective measures that can be taken and the importance of being near those people.
Like he said! I count on the support of you wonderful people!
mdolich said:
Everyone has a right to their opinion, even if we don't always agree with it. Lets try to be a little more considerate of each other. After all, we're all here to support each other, not criticize what others say or believe.
I had had Reflexology a couple of times…just on my feet. It was Wonderful…but each session costs 50 dollars and is not covered by insurance. I have just purchased a foot massager that uses Reflexology and it costs $200.00. I have just received it and don’t know how to give recommendations. I go to physical therapy at least twice a week and they use e-stem therapy. The highest the e-stem machine can go with the highest number meaning lack of sensation, is 47. Last week I was up to 46 on my left foot and 35 on my right foot. These things do help…but it seems that my main problem right now is concentrated in my feet! I need to lose about 30 pounds because I think this overweight business is contributing to the pain in my feet . I developed CIDP Oct 1st of 2011, so it will soon be one year. I have gone from a wheelchair, to a walker and now just use my cane for balance.
This is a support group, not an enlightened Medical Think Tank. If you want perfection, go to a graveyard, that's filled with perfect people.
For what it's worth, my sister IS a Doctor, and although I do not claim to have her knowledge or experience, she has also told me to stay away from the Flu shot/snort/scratch. This is "common knowledge" for anyone dx'd w/GBS, and as far as I've seen, should apply to CIDP as well.
MeanDog said:
my advise is not to listen to jonj he desn't know what hes talkiing about. hes a dummy trying to make everyone think hes smart. go read the post 'first time relapses', mdolich made him look like a fool.haha
they should have kicked him (jonj) out of the group but instead they shut down the discusion. people like him is why so many don't answer the posts. he likes to argue.
My hubby has been diagnosed with CIDP and does not have Diabetes. His foot troubles began with a callus on his left foot at the ball of his big toe (which he peeled off). We later learned it was a pressure ulcer caused by the severe change in his gait. This began another problem all of it's own. The callus became infected and went into the bone and he had to have his tip bone of his big toe removed. The ulcer never fully closed and has been an ongoing problem for the past two years. His foot has also broken down (due to the damaged nerves being part of the support system); his toes are becoming atrophied, his arch has fallen, and his ankle is turning inward. The Podiatrist calls it Charcot Syndrome.
My hubby recently spent two days in the hospital and 3 weeks on IV antibiotics due to another bone infection in the 3rd toe of the left foot. It is likely that he will have to have the tip bone removed in this toe as well. The Xrays show that he has broken all of his toes recently and he never knew since he can't feel his feet. The Podiatrist has told us it is time to look into electric scooters as he will not be able to be on his feet more than 15 -20 mins. a day because it causes too much pressure and the foot cannot handle it anymore. We have had to learn about foot care just like a Diabetic. He cannot go barefoot and we check his feet daily. He must get his nails cut at the Dr.s office for even a nick can cause serious problems. With an already compromised immune system, it takes much longer for these injuries to heal.
Sorry to hear about your husband's foot problems. It illustrates the importance of good foot care to avoid such problems. My former diabetes doctor was the director of the wound care clinic at a major NYC hospital. Many of the people he treated at the clinic had amputations due to infections which started with callus removal. More often than not, the callus removal was done by a podiatrist, not by the patient. In his opinion, calluses are protective and should not be removed in patients with severe neuropathy or circulatory problems. His solution would be to take the pressure off the callus by stretching the shoes or using orthotic inserts to redistribute the weight away from the callus. If you'd like, I can try to see if he will offer a suggestion about finding a capable wound care specialist in your area. (Is it near Los Angeles?) I'm not sure that a podiatrist would be the best choice. Jon