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Hemophilia

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Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?

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.

A MyHemophiliaTeam Member said:

Yes
I do. I also have vonwillebrands that is not too bad.

posted about 1 month ago

Elbow Pain - Older Haemophiliacs

Elbow Pain - Older Haemophiliacs

Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?

A MyHemophiliaTeam Member said:

Yes. I am 62 with severe Hemophilia A and am currently experiencing chronic pain in both elbows, both ankles and both knees. Had total joint replacement… read more

posted almost 2 years ago

Physical Therapy

Physical Therapy

I do pilates 2-3 days a week. I also walk 3 days a week. I find this has helped keep the pain in my joints, and all around well-being more positive. My question is: Is this too much?

A MyHemophiliaTeam Member said:

If you enjoy it, you are not in pain and your levels are good I don't see why it would be too much. I think the stretching walking and strength training… read more

posted over 2 years ago

I Have Von Willebrand

I Have Von Willebrand

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

A MyHemophiliaTeam Member said:

I use a lot of pepperment oild and jajoba oild mixed for joint pain that helps

posted 4 months ago

Insurance Problems

Insurance Problems

Well this is a really long story but I am going to make it short. I have Blue Cross Blue Shield of NC they will not cover my Factor for me to have on hand witch is kinda a big deal. Because I am having to miss work to go get my infusion. They are wanting me to pay a stupid amount of money every month to have it at home at witch point I could buy a new Ford F150 every month lol. But does any one have any suggestions how not to get the run around with them or what I should do

A MyHemophiliaTeam Member said:

Try SSA.gov they have Medicaid for hemophilia's, look for it. They require three episodes in the last three months. An additional check would help.

posted about 3 years ago

For Mild Hemophilia- Females- How Do You Know When To Treat, What Symptoms Do You Experience That You Relate To A Bleed?

For Mild Hemophilia- Females- How Do You Know When To Treat, What Symptoms Do You Experience That You Relate To A Bleed?

As a newly diagnosed female (former symptomatic carrier without treatment) I am trying to understand what others are experiencing and what advice they are getting. I want to have some background info to bring to my local hematologist and my HTC. Since my diagnosis I have heard some people say treat for pain even without swelling or heat, others say that there has to be visible signs of a… read more

A MyHemophiliaTeam Member said:

Interesting since I had a total hysterectomy to resolve nonstop menstrual bleeding and now my last factor level was like 120....... I think that is why… read more

posted about 2 years ago

Does Anyone Else Have Side Effects From Amicar?

Does Anyone Else Have Side Effects From Amicar?

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

A MyHemophiliaTeam Member said:

I've had similar side effects (nausea, dizziness) with Amicar, which I've used after invasive dental procedures (extractions, other oral surgery). It… read more

posted over 1 year ago

How Do I Discourage My 17 Yro. Severe Hemo. A Son, Not To Buy A Motorcycle?

How Do I Discourage My 17 Yro. Severe Hemo. A Son, Not To Buy A Motorcycle?

.Hi, My 17 yro. Severe A son, is determined to buy a motorcycle. He has written and explained a 3 page report to me and his dad the reasons why he should be allowed to get a motorcycle. To me, this just sounds like the craziest idea in the world.--No exceptions!---A no brainer. But trying to convince my son is a totally different argument.
This would not happen right away, but probably within the next 6 to 8 mos.
I am searching for help from… read more

A MyHemophiliaTeam Member said:

I just joined this sight and I saw your post from over 2 years ago. Having had motorcycles since I was 10 made me curious of your outcome. I am Severe A… read more

posted almost 2 years ago