Leg Swelling Anyone out there?!

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anonymous

New member
Hi, I'm Christian, 23 with CF (female)
About 3 years ago I started to get wierd purple spots on my legs. Almost like broken blood vessels, but little groups of spots. From my thighs to my feet. Then later, where I'd get the spots, the area would swell up so bad, many days I couldn't walk 3 feet. My husband had to carry me, or get everything for me. Then later on, the swelling would change to huge lumps the size of golf balls, almost cellulite-like.
This went on for 2 winters. My CF doc made light of it, though he knew how bad it was. He gave me pain meds, and said it was maybe an immune response. My family doc had no clue and sent me to a Rheum, he had no clue.
So I decided to get a new CF doc, (I couldn't take any more apathy) and she didn't know, but she said she'd exhaust every source till we found out what it was. She put me in the hosp, and the whole Rheum staff poked and prodded me. After 2 weeks, they diagnosed me with a rare disorder called Henoch-Schonlein Purpura Syndrome that is usually only seen in young children. But, several on the CF staff were convinced it was a type of CF Rheumatic arthritis. So, I have a diagnosis, but I'm not sure that's it.
Has anyone out there had similar sounding symptoms? A few things that aggravate it are, cold weather, high heels, walking in the cold for a long period of time. Airplane rides. Sounds wierd, I know.
Anyone out there?!!!
 
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anonymous

New member
do you have low O2?...could be a weird thing to do with poor circulation....emphasized by low O2....

?? i am not sure though just a far out guess!

caitlin
 
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anonymous

New member
Hey, it's me, "leg girl",
You know what, I don't often have low o2, however, I don't often check it, except for my visits. It's usually 95-97. Is that low?
However, I do feel it's a circulation problem. Additionally, I forgot to mention before that if I wear tight clothes, like a tight elastic waist band, i get the lumps and spots there too.
 
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anonymous

New member
Hi , I am 32 with cf. I have had the same thing. Thought I was the only one. They have ydiagnosed mine as cryoglobulinemia. My blood starts to crystalize ( how it was explained to me) when the tempurature drops. They can do a blood test to test your levels in your blood. The only way I have been able to deal with this is stay warm. I wear long johns, and sock liners under my socks all year round. In the summer I find that the air conditioning or a cold breeze will bring in on. My feet and lower legs are the worst. I do get it on my thighs, hands and face ocassionally. I just had a baby this year I had no problems with it while I was pregnant but about two weeks after giving birth I was back to the long johns again. Good Luck. If you find something that helps I would love to hear about it.

C
 
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anonymous

New member
Dear 'C'
Thank you SO much for your response.
Iwas going to say to you also, I sometimes get it in the summer, though never as severely. So this could be explained by going in and out of the air conditioning and hot sun?
Also, I occasionaly go tanning (nobody yell at me, it feels so good!) and a couple of times, it has happened after that, because I get out of the bed, and then go out to my 30 degree car. Wow, it seems like it could make sense.
I just can't describe how it feels to talk to someone who has had what I've had. I have a thousand questions for you. Who diagnosed it? How long did your diagnosis take? How long have you had it? Do you take any meds for it? Has anyone ever told you that it's possibly related to your CF?
Thank you so so much!
christian
 
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anonymous

New member
Hi Christian,

It is nice to have someone to compare notes with. I have been in battle with this for 5 years. It drives me crazy. It took me two years to figure out it was the cold causing it. When it started I thought maybe I was having an allergic reaction to pantyhose. No matter what I wore nothing helped. Do you get a burning sensation in your legs and feet when it starts. It is funny you say when you fly, I flew to my sisiters wedding just after the symtoms had started and I ended up in emergency because all the toes on my feet were swollen and completely purple. It took a good month for them to heal. That was the only time it went to that extent but I think I had made a bad situation worse by soaking my feet in cold water to get the swelling down and running around in sandles cause my shoes wouldn't fit when I should have been warming them up. I saw a dermatoligist and he sent me for a blood test to test for cryoglobulin in my blood and it came back positive. My CF doctor says he is not sure that it is CF related but who knows. I think it causes alot of the joint and other misc pain I have. Do you find that after you have a big outbreak that you are very tired? I have a million questions for you, need to run for now.

C
 
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anonymous

New member
Dear C,
Yes, when the swelling begins I feel an itchy 'hotness' in my legs. Like if you sprained your knee, and it swelled, you know how it feels hot to the touch? It feels hot to the touch, but itchy too. I think scratching makes it worse, I try not to. My skin rarely opens up and bleeds though. I saw on a website for this cryoglobulinemia pics of feet that actually split open and were bleeding. Does that happen to you? I get teeny spots that occasionaly open, and scab over. (don't mean to sound gross!)
As far as feeling tired, I've had this for about 3 yrs now. As a teen (I am 23 now) I was so active, even with CF. I ran, I could go nonstop for days, working, shopping, ect. Ever since this started I have been exhausted. I've stopped working totally, a trip to the grocery store is about all the exertion I can handle for one day. But if I go a couple weeks without having an episode, I have more energy. Also, and maybe I'm wrong, but if I have a very emotional or negative experience, it flares up. I guess its just the added stress on the body and immune system. For example, (I'm adopted), and a year ago I reuinted with my birth mother. Immediately this leg problem went from bad to excrutiating. I had it every day for months, to the point like I said where I couldn't walk 3 feet without falling. I would stand up and the pain would 'rush' down to my feet. Did you ever experience that feeling of the pain "rushing" down to your feet? I've tried to explain this to my docs, and they just don't get it.
Christian
 
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