Legs and feet swelling

[ingemlb]

Yes well Mary this "just the way it is" gets one rather annoyed after a while It was "just the way it is" with my shocking cough and my initial Family Doctor didn't refer me to a specialist just told me to "get used to it" he didn't mention in 2003 it could be connected with Post Nasal Drip either. That was also accept "just the way it is" So I am not a fan of "just the way it is". Sorry not having a go at you just venting my own frustration and you must feel the same way.

Then all of last year I put up with incredible joint pain thinking it's the immune system healing my inflammation instead of getting it checked and finding it's the immune system attacking my body

Now that I have no joint pain I realise in how much pain I was most of last year

Anyway I guess I did get a diagnosis finally so all's well that ends well however would have been nice to understand years ago what was really going on. Guess there are many here in the same boat.

If you do find out more would be interested in hearing Yes ... get that recliner. They are worth it.

[jakekell]

Venting is no problem have heard a lot of it myself grrrrrrr! My specialist said that years ago I could have had a diagnosis with wegs if they were listening to me.

I will get the recliner for here as your so right it does help and been missing my one at the other house. I will let you if I find out anything different.

Mary

[Victoriaitsnosecret]

My ankles and feet were very swollen as were my lower legs. Sitting with my feet on the floor definitely made it worse. The doc said maybe the prednisone but at that time I was only taking like 5mg. No high blood pressure and I don't eat a lot of salt. Even if my feet or legs aren't swollen I now have these little I don't know fat pockets around my ankles.


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[jakekell]

Victoria,

Interesting I notice the ankle thing even my legs aren't swollen also. I did some reading on the internet and is looks like some of us wegs just have a problem in the leg area. I wonder if the veins are more effected there is some of us and other places in other wegs? I don't know, but glad to know I am not the only one. We are in FL for the winter and riding my funky 3 wheel bike does help some.

Mary

[Victoriaitsnosecret]

It sure is nice to know I'm not the only one. Because I don't "look" sick I think sometimes people think I'm full of crap. Anyway enjoy Florida. I'm in Boston where we are still in the midst of the never ending winter.


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[drz]

When I was in nursing home for long rehab shortly after my hospital treatment for Wegs, I remember my legs were still so swollen I couldn't wear shoes for several weeks and had to wear those inflatable braces that pulsed every few minutes at night to massage the legs and reduce the swelling. Was real hard much to sleep then. I don't know what part of my Wegs or the Wegs treatment caused the bad swelling but it seemed to decrease as i slowly improved. I remember the swelling was so bad the bottom of my feet were round. I wonder if that is part of reason my shoe size grew two sizes after diagnosis of Wegs.

[ingemlb]

It sure is nice to know I'm not the only one. Because I don't "look" sick I think sometimes people think I'm full of crap.

Victoria you are not alone in that. Many many people with chronic illness face the same dilemma in that they are written off as imagining it. Also by many medical professionals. And the other issue is one gets so used to being sick that it starts to feel normal. Over the last few years as symptoms disappeared I only actually realised I had had them when they stopped!!! Or when someone else mentioned they had a certain problem I suddenly remembered I had been living with it for years.
Our original family doctor had on his wall a sign "Don't come to me with a shopping list of symptoms" that REALLY hit home so I would go to him with one symptom at a time and hence a lot of my symptoms never got discussed I had of course no idea that symptoms at opposite ends of the body could in any way be related.

Chronic illness is the pits

[MikeG-2012]

Our original family doctor had on his wall a sign "Don't come to me with a shopping list of symptoms"...

I sure hope he's your FORMER family doctor now. That is pretty arrogant. With this disease, if they don't know all the symptoms, then they will never be able to diagnose it! WOW, how arrogant!

[ingemlb]

I sure hope he's your FORMER family doctor now. That is pretty arrogant. With this disease, if they don't know all the symptoms, then they will never be able to diagnose it! WOW, how arrogant!

He is definitely former in more ways than one. Six foot under by now He did have his good points and I think the sign was put up by the office staff who wanted him to keep on time with his appointments lol. I just took everything too seriously. Since then I have had a really good GP the last 10 years and he definitely encouraged discussing all symptoms. However I had to swap yet again to find someone closer to home and as I am now mainly under the Rheumatologist with Wegener's I see the GP's role not quite so important. However it seems we did strike a very efficient GP just down the road from us. He did come highly recommended.

[jakekell]

I am betting it does have something to do with the size change. I have never been as bad as your situation unfortunate you got that bad before getting the right help. How long have you had wegs now?

Mary