New to CIDP! Swelling in legs…
AnonymousSeptember 30, 2008 at 3:54 pm
[FONT=”Century Gothic”][COLOR=”Indigo”]Hello wonderful people! I’ve been reading these forums since I was diagnosed with CIDP in August of this year. I have undergone IVIG and am slightly better (still not satisfied). I was wondering if anyone else has swelling in their legs…especially ankles?? Mine is horrible and embarrasing! My doctor insists that it is because of the IVIG but I told her that i’ve had swelling since long before IVIG. She prescribed me fluid pills that have helped. I just feel like she thinks I’m making it up! I have been wearing pants all summer to hide the swelling….it gets HOT in Mississippi! LOL! [/COLOR][/FONT]
AnonymousSeptember 30, 2008 at 4:26 pm
My ankles swelled when I was in the hospital (oct07-dec 07)and my doctor at the time told me not to worry about it since they went down at night. They went away but I found in the hot and humid weather they swelled up again but I havent mentioned this to my new doctor but I will when I see him in two weeks. i think my swelling is caused by me sitting most of the day at work and since my hamstrings are tight its resristing the blood flow.
AnonymousSeptember 30, 2008 at 4:38 pm
Are you on a steroid also. If so then that is probably the answer. Which doctor told you it is from ivig. Your family doc or neuro? Tell them both and insist they do something.
My husbands feet and ankles were so swollen that he couldn’t wear shoes.He was on prednisone and imuran until he got sepsis(a blood infection) In the hospital for treatment his legs went right down. Fluid just came right thru his legs and he looked like he fell into a blackberry patch with scratches all over.
Even if you are not on a steroid someone should know or find out why and you need to insist. I argued with the practicaner (sp?) before on his condition and she insisted he was stronger then all hell broke loose in 2 weeks with his sepsis.
We need to take control as it is your body not theirs. I have learned alot from the people here and I am very thankful for their support. They know more than some of the doctors. Let it be known you are very concerned.
AnonymousSeptember 30, 2008 at 4:52 pm
Thank you for posting. I’m not on any steroids yet…i’ve had the swelling before IVIG so I’m pretty sure it isn’t that…although it could be making it worse. Someone mentioned to me that CIDP causes the muscles in the legs to weaken therefore the legs don’t have the muscles to help push the blood flow back up through the legs. This theory sounds believable…has anyone else heard this?
September 30, 2008 at 5:16 pm
My 11 y/o has cidp. The muscles do get weakened, because the nerves do not get the message from the brain and they do not function properly. You mentioned this is since August and you have gotton ivig. It seems as though you are mobile, so I am not so sure that your water retention would be as a result of cidp. A comment was made about the kidney’s and ivig, if you take a sucrose based ivig product, it could be a contributing factor, but you also mention that the swelling was prior to ivig. As a precaution, have your doc do a blood work up prior to your next infusion. I noticed a baby in your picture, is it a recent picture? Could you be retaining from the pregnancy? Is your blood pressure ok? do you use a birth control pill? Just some ideas?!! Good luck.
Dawn Kevies mom
AnonymousSeptember 30, 2008 at 6:27 pm
I have also had lots of swelling to the point o splitting open and bleeding. more during the hot summer months. I have gotten on blodd pressure meds and had kidney function tests and put on thyroid therapy plus lasix. I have found that If I do not walk to Far I don’t swell so much. but the meds have been helping too. i also prop my feet up at night and it relieves the pressure in them.
AnonymousSeptember 30, 2008 at 7:12 pm
As a guy I can get away with high top work boots. That helps some. I have found that “pressure” sock help keep the swelling down. You can get them in off color so they don’t look like surgical socks. Lasix SP? helps too, but you have to keep drinking water also.
AnonymousOctober 1, 2008 at 8:55 pm
Thank you for posting. Yes that is my 7 month old son in the pic. I have had swelling problems since about 1 year after I noticed numbness in my leg. I went undiagnosed for 3 years. So, I have had swelling for a very long time. My blood pressure is always fine…sometimes even slightly low…but that’s normal for me. It’s become my mission to prove that CIDP causes swelling in some patients! Thanks ya’ll for your help…
AnonymousOctober 2, 2008 at 5:25 am
Sorry Lauren, you said that your legs swell. Do you feel them swell or do you see them swell?
Some days I think I have swelling in one of my legs, I go to the doc and he says everything is OK,
It seems this swelling is one of the list of bizarre symptoms we have with PN. Sometimes I feel the legs very heavy, like I have a car lead acid battey in my ankles.
AnonymousOctober 2, 2008 at 1:00 pm
when you tie your sensory [nerve] system to your vascular and lymphatic systems. Your nerves tell the other two to move that swelling out and those nerves aren’t working right to get the job done.
Here is a site that explains it all
go to the ‘diabetes in skin disease’ tab, click it on then click on the abstract and intro…then read away. What happens to our skin is very very similar to that of diabetics in how the damaged nerves don’t give our other systems the correct signals to do the jobs they’ve normally done.
Our bodies are complicated things. This is only one aspect of what gets messed up with CIDP. The more we learn, the better we can deal with it?
AnonymousOctober 3, 2008 at 5:30 am
Hve you tried linfatic drain massages? You can do it your self with a brush, pumping up the linf from de feet and leg. It takes 20 – 30 min. doing it slowly. It helps me a lot when I have this swelling. but I´m not sure if my swell is real or a feeling. Do not do it over your varices.
October 3, 2008 at 10:25 am
I too have a problem with swelling in my ankles primarily, but my lower legs and feet (even into my toes) swell periodically. Most people had to be convinced that it wasn’t imaginary…
I’ve noticed that activity usually keeps the swelling down. I try to do aerobic exercise daily (elliptical machine, weight training and swimming). I also do my physical therapy exercises daily. My wife and I daily ride our bicycles. And I try to walk and take stairs whenever I can. (Yes it’s very time consumming, but it’s what I have to do to keep the swelling down). I try to keep my feet elevated when at my desk at work … which doesn’t really look very good, but it helps.
I’ve also noticed that an extended plane trip or drive causes swelling. The last plane trip I took to Cincinatti didn’t cause swelling on the way up (I made sure to exercise before we left and as soon as the plane was on the ground we took a walk across the purple people bridge). But after the return trip cause a lot of swelling.
BTW … who is that little cutie in your photo?
AnonymousOctober 3, 2008 at 10:32 am
[QUOTE=lalathompson]Thank you for posting. I’m not on any steroids yet…i’ve had the swelling before IVIG so I’m pretty sure it isn’t that…although it could be making it worse. Someone mentioned to me that CIDP causes the muscles in the legs to weaken therefore the legs don’t have the muscles to help push the blood flow back up through the legs. This theory sounds believable…has anyone else heard this?[/QUOTE]
Looks like I have the same problem: my feet are getting swollen pretty badly, specifically by the end of a 5 week break between IvIg’s. Night rest and diuretics help very little. Improvement comes after 2nd – 3rd day of IvIg, together with improved (to some degree) sensitivity and mobility. I also noticed that my stomach is getting blotted at the same time, and it also gets better after few days of IvIg. So my conclusion is that this is one of manifestations of CIDP rather than a side effect of the treatment.
AnonymousOctober 3, 2008 at 11:20 am
Hi Gary! That little man is my 7 month old son, Chap. He’s presh! I have started pilates just to get the strength back in the legs. I know that exercise is a key to building the muscles back in the legs…but everytime I walk long distances and take stairs it seems to get worse. It seems as if there is a fine line between being active enough and over-active. It’s SO frustrating.
Pj…i haven’t tried the massages…I will look into it-thanks!
Alex-does your doctor believe you when you tell him/her that those symptoms are b/c of CIDP NOT IVIG?? Mine insists that the swelling is b/c of IVIG…UGH! Hopefully one day CIDP patients will be able to express concerns to their doctors and not feel like they’re losing their minds! WE MUST PRESS FORWARD! Thanks for posting! Keep in touch!
AnonymousOctober 3, 2008 at 7:34 pm
Hi Lauren, I have to agree with Gary, that I have less swelling to no swelling in my feet and ankles if I exercise, but you are right too, I think, that there is a fine line between doing enough and overdoing. I have been getting ivig for 8 years and never had the swelling after. Jim is right too, you have to drink water, especially alot during the ivig. I am very sensitive to hot anything-weather, water, etc., and when I have any swelling I ice my ankles and feet with ice bags and cold water towels, or bath tub with cold water, and if you have a swimming pool or a motel that allows public swimming, the pool feels wonderful, just don’t overdo( I stayed in the pool 1 1/2 hrs. the first time because it felt so good, and could hardly get out or walk when I was done, felt like a human cement truck:) ). Just another opinion for you.
AnonymousOctober 4, 2008 at 5:21 am
I’m having this issue right now and am going in for some blood tests next week to make sure my kidneys are functioning OK. Mostly my abdomen swells but I spend a good portion of the day with my feet propped up in the lounge chair so they don’t have much opportunity to swell. My abdomen though can get enormous – to the point where my ribs are cutting into my liver and it’s painful to breathe. Recently, this week, I started getting fluid in my lungs while sleeping and I’d wake up feeling like I had the flu, hacking and coughing until I could breathe again. This situation has been getting worse over the past few months and I have been assuming it was due to the IVIg since the timing seemed to correlate. Now you all have made me wonder and think about this, particularly since my abdominal swelling has gone down quite a bit since my treatment started on Wednesday. (sort of in an inverse proportion to my headache) Two years ago I had this problem as well, they did a CT scan and found that my liver and speen were enlarged and I had excess fluid in my abdomen. Within a few months my abdomen seemed to go back to normal only to resurface with swelling last year when I started on the IVIg again. Sometime last Spring I had an ultrasound done which also showed excess fluid in my abdomen which at the time they attributed to a ruptured ovarian cyst that they could also see. Now I have no idea what is going on and feel like we just keep going in circles as to cause, effect, treatment and so on. My nurse went home and did some research and all he could find for the cause of the ascites is “fluid overload” which is so vague it’s not helpful in diagnosis.
I will let you all know whatever the blood tests say – we will be checking liver and kidney function and it wouldn’t surprise me if he sent me for another ultrasound. If you can think of any other blood tests I should ask for please let me know.
AnonymousOctober 4, 2008 at 10:17 am
Julie-I have gained about 30 pounds since Christmas-most in my abdomen. My nurse calls it muffin top. Hardly any clothes fit. I have been getting my liver enzymes and kidney function teasts done every three months now. Not sure what Univ of MI ordered last week, but 7 vials worth. The lab tec said most were for antibodies and she wasn’t sure what the rest were for.
Am seeing my gp Mon. and he wants a CT scan of my abdomen. I’ll let you know when I hear what the other lab work is when I see the results.
AnonymousOctober 4, 2008 at 3:33 pm
It’s interesting that you say you had the swelling in your legs prior to IVIG. I remember about 6-7 years ago having a large amount of edema in my legs and going all the way up to my waist.
I went from Dr to Dr (several specialists) trying to get an answer–everything came back normal (ha!).
All in all it lasted about 3 months. This was prior to ever having any nerve paralyses or any other symptoms of CIDP….I still wonder to this day if it was connected to early signs of CIDP.
It never happened again after that episode. I have been receiving monthly IVIG for the past 4 years (and no edema, even after infusions).
Hmmmm….we have some interesting things in “common”!
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