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I have von willebrand disease. A lot of days I feel very tired and like a bus hit me. I also have pain in my joints and bones when I feel fatigued. The only way I can explain it is feeling like I have the flu. Are there any ways or tips to lessen my fatigue so I don’t feel so ill?
I feel the same way. I find that making sure I drink enough water and keep moving as much as possible even though I don’t want to
Yes, I’m severe fXI and my fatigue is a daily thing but it’s made worse from the cold. Best thing is to take more time for yourself and caffeine aha
For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?
I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?
Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease
My whole life I have had horrible cycles! They last anywhere from 12- 20 days at a time. And they were every 3 weeks when I was younger. Now I’m in menapause(53 yrs old) and I only do it every 3 mos… read more
My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the average person. I always… read more
I get extremely fatigued even tho I’m mild...also looking for fatigue relief
I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.
Sounds like a joint bleed to me I have a target joint and that’s how it feels when it begins. Or to me it does.
Last night my son got a few mussel spasms .... is this a concern? Is this a symptom of a brain bleed that might have been missed? My son is sever Hemophilia Type A
Get him to see doctor at Hemophilia Treatment Center.
Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement
Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like… read more
Vonwilabrands runs in my family. From sever to moderate. So bleeding is something we are used to but past several years my grandmother has been throwing clots as well. It looks like something that may occur in older age. Her hematologist just said that she is unique which I don't think is really an answer. Her clotting factor fluctuates as well from 27% to normal. Has anyone else had any experience with this? I have asked around and googled but no real answers. Trying to find out before it… read more
I have VWD, but also have a condition called "Antiphospholipid antibodies" that creates clots in places like legs, lungs, and brain. You wouldn't think that with a bleeding disorder you could create a… read more