leg swelling and bruising

[mamaScarlett]

hi. i am 21 with cf, and experiencing severe leg swelling occuring with odd "bloody like" splotchy bruises. it occurs mainly from my feet up to my mid thigh. it is very painful and limits my activity and stamina. i have tried lots of things so far, and regretfully my cf doc hasnt given me much information, or any remedy in this area. anyone out there know what i'm talking about and can help me?

 

[anonymous]

I am not real sure but I'm guessing that this is not CF related. Have you asked your regualr medical doctor about this? Have they done xrays & cat scans to rule out a blood clot in your leg? I'll be curious if anyone else w/ CF responds that they've also experienced this.

 

[mamaScarlett]

hi. thanks for responding. actually my cf doctor thinks this is cf related, and says he has seen it in other cf patients. however, he claims there is not enough information on it, at least no way to help it. and he did not say anything about clots or scans.

 

[anonymous]

i've had the same thing. i was on holiday in amsterdam last year and it got so bad that i couldnt move my legs. i saw a cf doctor in amsterdam who said that it was vasculitis (probably caused by cf). it sometimes flairs up when i have an infection. i bought some compression socks, they are just below the knee. i fly overseas a lot and without them, the spot start to come back why i fly.

 

[anonymous]

I have had something which sounds similar although yours sounds a bit more complicated than mine. I was diagnosed with hypotrophic pulmonary osteo-arthritis. I had very swollen ankles and shins and could hardly walk at times. I took very strong painkillers (Naprosyn) which seemed to work.Andrew.

 

[anonymous]

well,thanks for the replys. i have a relative who is an RN who thought it may be vasculitis. and where can i get compression socks? through my doctor maybe? i am also going to mention the hp osteo-arthritis to my cf doc. there must be something he can do. he wasnt very sympathetic before, but now i'll go to him with these diagnosis and hopefully he'll do something. thanks!

 

[Dea]

Hi Christian,It sounds like CF related arthritis to me.....I am 30 and have had it since I was 9 yrs old. I dont get the red splotches...like I did when I was younger, but I still have the same pain from it...and is getting worse as I get older. I have started seeing a rheumatologist...and so far havent had any luck with controlling it. When it first started I was able to take ibuprofen...then went to celebrex...but after 3 yrs of that...it quit working as well. Now, the only thing that helps is prednisone when I get a flare up. Im hoping this new rheumatologist can help to figure out how to control it. He calls it arthritis...but has not given it a particular name...because it has similiarities to several different kinds of arthritis. The good thing is that is has not caused any bone deterioration.....and like I said..I have had it for about 20 years! Good luck!Dea

 

[kybert]

i dont think cf related arthritis causes bone deterioration. when i was young i went on a skiing trip and all of a sudden my knees blew up like balloons. they stayed that way for 2 years. couldnt walk some days, couldnt run most days. everyone knew it was arthritis but because there was no cartilage/bone damage the rheumatologist was very hesitant at saying it was full blown arthritis. she said i had 25% arthritis instead hah. its just pure inflammation and fluid.

 

[Dea]

Yea,Unfortunately they dont know much about CF related arthritis to this point. It hadnt been very common before....but seems to be getting that way. My flare ups having so frequently now...is unbearable without the use of prednisone. We are talking at least every 2 weeks ......I use to be able to go months without having one. My flareups affect me all over ......all joints as well as the back...and even my chest gets very tight. I hope that yours stays to a minimum for you.....for as long as possible. Good Luck!Dea

 

[mamaScarlett]

thanks dea and kybert. this is all interesting to me...before, i was told that this was uncommon, seen in cf, with no name/diagnosis, and thought to be an immune response. but, my investigating has lead me to cf arthritis, and now hearing from you convinces me of that. it started about 1 year ago. it used to be once every or every other week. it slowed down, and now for about three months it happens every day. somedays i just manage, but mostly i'm totally immobile, but i hate it! i'm only 21, newly married and i feel like an old lady. anyway...have you been given an explanation as to how or why this occurs? and, do you feel any coorelation to times when you exacerbate, or are at least more tight or congested as to when the swelling occurs? because, and maybe i'm wrong, but i think that when i get it really badly, its been a day that i've been tighter, coughed more, and had a lot of walking and moving.

 

[anonymous]

Just a thought on this topic....maybe there isn't much that doctors know about cf related arthritis because it doesn't get as bad in children as it does for adults. Because we all know that until recently cf people died young the generation of cfers that are now into their adulthood are facing new cf related problems that doctors have little experience with. Just think you are the test cases for helping tomorrow's cfers with the same problems. Just a thought.

 

[Dea]

I agree with the last post...although I have had it since I was 9, but dont think it usually affects people that early. Another thing that I have found out...is that it is more common in females. Dea

 

[anonymous]

Hi, I'm a 17y/o female with CF, and I've had the same problem, twice. I woke up one morning with sore ankles, knees and hips. Later on I developed these weird red splotches on my legs that were painful to the touch. My doctor diagnosed it as "erythema nodosum" and he said that it can occur in conjunction with pulmonary conditions like emphazyma, sarcadosis, and guess what...CF. Ask your doc about it. That may be what you're experiencing. Hope all goes well.

 

[Lisa41]

Hi Christian,I was diagnosed with HPOA hypotrophic pulmonary osteo arthrophy about 15 years ago, when I woke up and my feet were swollen and all my joints hurt. I could hardly move. I was on 800mg. of ibuprofen 3x's a day for years, then it seemed to be ineffective. I was switched to 25mg of Vioxx, which seemed to help for about 2 years. In January of this year I had a bad flare up which started just prior to going into the hospital for a tune up. My hands were so swollen and I was in such pain. The rheumatologist was baffled because my hands were so red and very warm to the touch. They ran many tests which were all negative. He feels it is another type of arthritis associated with the CF in addition to the HPOA. I was put on solumedrol (IV prednisone) for 2 days and then on oral prednison which was tapered off over 2 months. Anyhow the swelling caused my left hand to go numb which in turn caused carpel tunnel syndrome because of the severe pressure on the nerve. (This was news to me, I thought carpel tunnel was caused by repeated use of the hand in a certain position) I had carpel tunnel surgery in April and I now have feeling in my hand again, yea...I'm left handed. I also had another episode in which I was in severe pain and was on Morphine for a few days until the prednisone kicked in. I now take 50mg. of Vioxx a day and still have bad days. I try to keep going but it seems to be getting harder all the time. I am very thankful to be 41 years old and doing as well as I am. God is Good!!!Lisa:sun

 

[anonymous]

Hi Christian - are you still at this email address? I just read your posting on 5/22/04 can you email me at julie.friedman@kenblanchard.com I have CF and would love to talk to you about CF Vasculitis.

 

[anonymous]

Hi Julie

I was just reading this post. I also get swollen legs and ankles with red rash. I have found out that my blood tests positive for cryoglobulins. When my tempurature changes my blood starts to crystalize and breaks the small blood vessels. I have had this for five years. I have found that if I were sock liners and socks as well as long johns and stay out of the cold I do ok. It causes me to be very tired and a lot of joint pain.

Charlene
33/cf