weak

This is the first time I have put a thread on the site. I have read a lot of what people are going through with WG :sad:and my heart go's out to you. I feel lucky that I have some
GREAT dr's.(5). In fact my general practional said that my kidney dr. saved my life when he put me in the hospital. I truly believe they have a handle on the WG. Since I was diagnosed in Aug of 2013 after having a kidney and lung bio.
I now have found out that I have factor 5 leaden and the gout. I would recomend everyone to have a blood test for the factor 5 blood disorder as it can be a killer with or without WG.
The question I have for you all, does WG effect your legs and strength. I was proud of my power in my legs when I played football but now when I use my legs they are so weak that I can hardly get up. I am going to talk to my rumatoligist to see what she thinks but I would like some input from you all.

Welcome John.
Yes weakness is certainly an effect of Wegeners with me, even when in remission. In fact weakness and fatigue I find to be the worse thing about this illness as it never goes away. The severity of pains comes and goes, but weakness and fatigue is always there.
I'd never heard of the factor 5 leiden test and googled it. Guess what? I've had thrombosis 3 times now. I'm now on anticoagulants for life now, so I guess I don't really need the test now as treatment would be the same.

Welcome, John! I'm glad you joined us and have started posting. I have no knowledge of the blood disorder you are speaking of, but am glad they caught it so it can be treated. As for the weakness, yes, for me it's an overall weakness not confined to one part of the body. i was just chopping some firewood and really noticing how much less strength I have than I used to. But I can still manage it; it just takes longer and is more awkward, and I get more out of breath. I hope to hear more from you soon!

Hi John, yes weakness and lethargy are now just a part of my daily life. I do have swollen legs also, but recent fluid leakage has stopped; however I now need to use a walker whenever I need to go any distance, as I find I weaken very quickly and need to sit for a while to get breath and strength back. Like Anne I know nothing about the blood disorder, but happy too that it can get treated.

Hi John,

Glad you found us, but unhappy you had to.

For me, crushing fatigue is a symptom of active disease. The good news is that the fatigue has gone away as I've gotten into a drug-induced remission. I'm now pretty much able to lead the lifestyle I had before I got sick. I hope you ultimately have a similar experience.

Severe leg fatigue was the main reason I first seen a doctor. My strength pretty much returned after treatment and remission, buy my flexibility never really did. I hope with your treatment the gout clears up soon.

as for the factor V, I was told I had that soon after I got DX'd when I had a DVT. I have been off Coumadin for quite some time now, this weekend my leg felt a little funny, went to the clinic this morning and found out I don't have a DVT but a superficial thrombosis on my upper calf. back to giving myself lovenox shots and Coumadin. I'm pretty sure I'll be taking Coumadin for the rest of my life now as well. as I recall that being the "deal" with my doctors on letting me off of it.

Thanks for all the info. you all sent. I didn't know what to think about the fatigue and pain in my achlies tendon. I guess when we get WG it effects people different ways. Maybe this is why it is so hard to dignose the disease. I wonder how many people in the world have WG and don't know it. I am really getting depressed not being able to walk without a limp or work on my farm without getting out of breath and hurting.
Does any one know of a way to stop the pain in the achles tendon, without medication?