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Living with Polyneuropathy CIDP, GBS, & CMT

Swelling in feet and hands


#21

I use compression socks but when the swelling gets bad I will lay on the couch with my legs up on the top of the back rest. With the compression socks on this works the fastest. Also make sure the top of your compression socks are not digging in and cutting off the drain.

To get any drain you have to raise your legs higher than your hips. The higher the better! When I was in the hospital I found the bed would not raise my legs enough so I laid opposite so my legs were up the back rest. Got a lot of weird looks from the nurses but they all agreed it was good. My legs are at their best in the morning so get your compression socks on as soon a s possible before they fill back up. Never sleep with your compression socks on!


#22

Hello, only just read your post. I have had massive swelling in my legs, when I was on Steroids. In fact, I put on a lot of weight as well. At the time, I could mobilise quite well, so I could exercise, but it made no difference to my weight. I have been off the Steroids now for over a year and have lost some of the weight, although I still have a swollen right leg and foot. Nobody can understand why only one leg is swollen. Elevation doesn't help a lot and I am now quite immobile, due to my Arthritis getting worse. I have had loads of tests, but have no answers.I do take a B.P. tablet each day and at the moment the B.P. is controlled. The Steroids,in my opinion, did not help my C.I.D.P at all. I now take Methotrexate, but because of the Osteo Arthritis, I cannot really tell what is happening with the Neuro problems. All the best with your health.


#23

I have this in my lower legs. I started using marijuana 6 months ago, and among the benefits was a strong reduction in the swelling. I gather that it is associated with the diuretic effects of MJ.


#24

I’m back on Lyrica. The doctor took me up to 600mg but that made me feel like a zombie. So now I’m back at 300mg per day. While it does not ‘cover’ the pain, it’s manageable for the time being. For me a side effect of Lyrica was depression, and the doctor then prescribed an anti depressant. However, the side effects of that we’re worse than the depression! So … I’ve ditched the anti depressant and force myself by act of will to deal with it.


#25

I have swelling in only my left calf and left foot. My nerve damage is far more severe in my left leg, which explains the venous insufficiency on that side. I’ve tried everything, as you have – compression, elevation, soaking – to no avail. I finally bought a second pair of my favorite walking shoes in a larger size, so I can wear my regular size on the right foot and the larger shoe on the left. I’ve had three rounds of IVIG so far with noticeable improvement – the nerve pains down my legs stopped completely after the first round – but my doctor says the swelling will probably persist until I have some healing of the nerves.

BTW, neuropathy can make blood pressure go a little crazy. My neuro (who is treating 5 CIDP patients including me and has treated a number of others over the course of a long and distinguished career) told me to be very careful about big changes to BP medications because that can just make matters worse. My PCP was changing mine frequently for a while, trying to achieve a perfect number (I only have mild hypertension to begin with), but after my neuro ordered a stop to that my BP has been much more stable. It did go way up during my last infusion, but I took a very safe extra half a dose of one of my BP meds and that brought it down.


#26

Hi everyone just wanted to say i have severed swelling also. My legs an feet expand triple their normal size. The only thing that has completely removed the swelling was when I was in hospital an they put me on lasics. Lol my Dr coul dnt believe how skinny my legs were. He now calls me skinny legs to funny. But within days of coming back from hospital they swelled back up. I’m on a no med with diretic,also but it’s just not strong enough to keep the swelling down. If I were to stay in bed an never stand or walk my legs swelling will go down but who wants to do that. So I deal with the swelling but you are so right or only makes the pain worse. Hope you feel better soon. Hugs kelly