For the past two years my husbands feet and legs have been swelling and I wondered if anyone else had this problem. His neuro says it has nothing to do with CIDP and did some blood tests and said he had lupus, sent him to a rheumatologist and he did his test and said he did not have lupus. We called our GP yesterday cause he's real bad swollen now, running a fever and she wanted him to go to the ER. We went there they ran a bunch of tests said they did not really now what it was and sent us home with an antibiotic. He has been swelling like this for 2 years. It started out with his right foot, moved to his left, and is now swelling up to his knee's.He'll stay swollen like this for a week then go down for 3-4 days then swell back up. When he swells like this it causes his pain to be a lot worse. As I said before his neuro says it has nothing to do with CIDP and that is why I wanted to know if anyone else who has CIDP has swelling also? We are so frustrated.
I too have swelling of my feet and legs. My MD said TED hose to manage the swelling. I also have a bulging disk in my low back and it could partially be to that. My activity level is way down since Dec. and thus I am not up on my feet and moving around as I did before December, and I could be cutting off my circulation. I have mentioned this to my Dr., as I said, and he said its not related. I have not really addressed this with my Neuro Dr. but I will when I see him again. My legs and feet, my right, in particular swells every night. I put my feet up. I've all but cut salt from my diet, and have been considering OTC water pills to see if it will help. But you have to be careful as some meds interact with others and I don't know which meds you are on. I have also gained 25 - 30 pounds since December... Again, I'm not as active as I have in the past, and I do blame much of my issues on that ( pertaining to the weight gain and retention of water. ) I'm also beginning some Range of motion therapy on my own... ( it was my previous line of work before this hit me. ) I don't want to develop contractures and lose muscle tone. My plan is to gradually work myself up to doing some low impact toning exercises to help as well. I do know that circulation is an issue with swelling sometimes and of course you should check with your Dr. before doing anything drastic. But simple range of motion will help in circulatory issues. Elevating your feet and legs for a while during the day is also basic. Heart issues can also be a part of the swelling, there are many reasons for it. I had a boyfriend who had Lymphedema in his legs, and it also caused him issues. When I asked him about his condition, he just said that's what it was... We were not together long enough for me to learn more about it as far as he was concerned to learn why, he was very self conscious about it. My best advise though, would be to keep asking questions. It could be a sign of something serious. Don't let anyone blow it off. Never give up. Keep us posted. :) Best of everything to you both. We all know, personally, how tough these issues can be. ~ Sis
Thanks for the reply and concern. We went to see a dermatologist yesterday because the ER doc said it could be celulitus (sp?) We actually have been told that by 2 doctors. Anyway the dermatologists said it was definitely not celulitus and that she believed it was internal. Maybe from his heart, liver, kidneys, etc.She said she was gonna call our internal med doc and talk with her. We have an appointment with our internal med doc on May 9th. I guess we'll go from there. The dermatologist did suggest some compression hose, but they make my husbands legs hurt worse so the derm. told us that they now have something OTC called travel hose that were not as tight as compression hose but just as effective so I got him some today. He's wore them for about an hour now and not said anything about them hurting. I'm just praying these will help and that it's not something real bad like his heart. Thanks again for the suggestions. - Lucy
Sis said:
I too have swelling of my feet and legs. My MD said TED hose to manage the swelling. I also have a bulging disk in my low back and it could partially be to that. My activity level is way down since Dec. and thus I am not up on my feet and moving around as I did before December, and I could be cutting off my circulation. I have mentioned this to my Dr., as I said, and he said its not related. I have not really addressed this with my Neuro Dr. but I will when I see him again. My legs and feet, my right, in particular swells every night. I put my feet up. I've all but cut salt from my diet, and have been considering OTC water pills to see if it will help. But you have to be careful as some meds interact with others and I don't know which meds you are on. I have also gained 25 - 30 pounds since December... Again, I'm not as active as I have in the past, and I do blame much of my issues on that ( pertaining to the weight gain and retention of water. ) I'm also beginning some Range of motion therapy on my own... ( it was my previous line of work before this hit me. ) I don't want to develop contractures and lose muscle tone. My plan is to gradually work myself up to doing some low impact toning exercises to help as well. I do know that circulation is an issue with swelling sometimes and of course you should check with your Dr. before doing anything drastic. But simple range of motion will help in circulatory issues. Elevating your feet and legs for a while during the day is also basic. Heart issues can also be a part of the swelling, there are many reasons for it. I had a boyfriend who had Lymphedema in his legs, and it also caused him issues. When I asked him about his condition, he just said that's what it was... We were not together long enough for me to learn more about it as far as he was concerned to learn why, he was very self conscious about it. My best advise though, would be to keep asking questions. It could be a sign of something serious. Don't let anyone blow it off. Never give up. Keep us posted. :) Best of everything to you both. We all know, personally, how tough these issues can be. ~ Sis
I have not had any swelling,just pain and weakness.
The medical world can be soooo frustrating!! I think sometimes doctors just tell you something because they think it will "satisfy" their patient, but good for you to keep pushing for answers!! I'm only 36 with CIDP and do not have swelling...but did work at as a director at a nursing facility and learned that 80% of the time people had swelling (including my own grandmother), it was due to a condition called CHF..Congestive Heart Failure...sounds scary, but it means that there is swelling/fluid around the heart...which affects the lungs, and can cause swelling of fluid in hands/feet. Some cases are very mild and can be treated easily with a dieuretic, which alleviates fluid from around the heart, and eventually the rest of the body. Hopefully this helps :)
True, the medical world is frustrating, and there are many interpretations for things we have issues with. That's the problem, that and we are all the same only different. Some tests show with out a doubt, and some are just ifs and maybes. And this condition is not going to be an easy one, and apparently does not have an easy fix. But if you are fortunate enough to have a good relationship with all your doctors, and can keep a very open line of communication with all of them, it helps us all in the end. They are still looking for answers that are not as plain as the nose on our face. I have three doctors, my MD, who I really like very much, he takes the time to talk with me and explain things to me and if he does not have an answer he will get one. My regular Neuro, and my Neuro Specialist. And I insist, at each visit... that each of them send copies to each other so everyone is on the same page, and they consult each other after each visit. Communication is the key and sometimes it's we who are inflicted with the condition, that has to push that envelope. I for one, am not above getting up on a desk and kicking papers around til I get answers.... ( Maybe I show that in my visits and that makes them cooperate? I don't know. ) And as clumsy as I am lately, that would make a pretty big mess I'm sure. But for the most part, I'd like to think that our Doctors do have our best interests at heart. They took the oath to help and do no harm. But I keep talking with them to keep us all on the same page. ~ Sis
You're right. Thanks for the input - Lucy
hi i was diagnosed with ebv and i went to mexico to a doctor dr luiy yu wich claimed to heal every illness i was there with my sister who has cidp we were treated by a machine called eboo
wich he said cleanses the blood we had that procedure 35 times but with no results for both of us beware of this guy
lucy said:
You're right. Thanks for the input - Lucy
Thanks for the warning. Let us know if you do eventually get results.
freedmjos said:
hi i was diagnosed with ebv and i went to mexico to a doctor dr luiy yu wich claimed to heal every illness i was there with my sister who has cidp we were treated by a machine called eboo
wich he said cleanses the blood we had that procedure 35 times but with no results for both of us beware of this guy
lucy said:You're right. Thanks for the input - Lucy