Von Willebrands affecting joints?

Hi all,

Just wondering if anyone out there has had any problems with their joints, whilst living with VWD? I suffer with this everyday, pain in my joints and constant clicking every time i walk.. Does any know how this could possibly be related? Or have had any similar experiences?

Many Thanks x

I asked my Hematologist about this as I am a type III and he said if I get blood in a joint it will announce itself so loudly that I won't be able to ignore it. Being 73 and fairly active gardening and working on hobby projects as well as an occasional kayak trip, my joints do ache. And by ache, right now, my left knee has a lot of pain when I put any stress on it like lifting the leg to get out of bed. Two days ago I mentioned that to the doc and he did not think it was sufficient to qualify as blood in the joint. Unfortunately, with AVMs in the GI tract and VWD, I avoid pain-killers to avoid stomach irritation so I grin and bear it.

I suspect you have to really have a lot of pain to diagnose bleeding in the joint and I suspect the only cure is the usual ddavp or Factor along with bed rest, but I am no doctor! Keep talking to the Doctor about the level of the pain and look at the Hemophilia A sites as those people really suffer from bleeding into the joints fairly often. My VWF levels put me at Hemophilia A levels so I am concerned and you are right to ask about the possibility of bleeding.

Doing well for the moment (Hgb at 16.7 g/dL) I remain, thank goodness,

John the elder

If you have joint bleeds (hemoarthrosis) then they pain you feel can be related. Also, this depends on your VWD Type. All types can have bleeding into the joints but its less common for type 1 and usually cause by trauma, were as a type 3 can have spontaneous bleeding require not injury to the site. If it concerns you then go see an orthopedic doctor since it could have many factors.

I have type three and have two bad ankles (they have no cartilage left and one joint has collapsed), a knee with arthritic pain, a rapidly deteriorating left elbow, and right elbow that does not go straight (I recently had a radial head resection to gain me a bit more movement). Join damage and pain is part of the game unfortunately.

I had a bleed in my pelvis around my hip joint. The pain was excruciating. I couldn’t stand or walk at first because it was so painful and then I was able to walk with a limp. It took about 6 weeks to clear. Sometimes i get bruising around my finger joints if I am doing reapetitive actions. It, too, is quite painful to touch. Clicking in the joints is usually a problem with the tissues, ligaments and/or tendons surrounding the joint. It may be due to physical damage such as a stretched tendon or a misalignment. Maybe some physiotherapy type exercises and stretches would help? It sucks how we always have to rule out a problem being caused by the VWD before you can move onto some other cause.

Thanks all for your help!!