I'm recovering from Carpal tunnel surgery done a month ago. Hand pain was one of my first symptoms. I have pain through the base of my thumb/palm when trying to grip things like large water glasses, a carton of milk, etc
I understand it's fairly common to have hand and wrist pain

joint pain and arthritis are common with HH. i have had arthritis in knees and hands since i was young. long before i was diagnosed with HH. evidently we develop tiny crystals of calcium, i believe , between all our joints. at least it is in my case and info off the web. i may have the definition wrong but you look into it. i have memory issues, things get all scrambled . oh well.
betsey i hope you are doing better. stay on top of the physical therapy, it can make a big diff. i have had 5 surgeries on my knee and they still can't find my brain.... go figure.
sorry it couldn't have been better news pboy. it is what it is though. it is livable.

Well as for me, yes it is common. I often referred to my wrists as T rex wrists cause they hurt so bad i tend to walk around with them bent. ( i try not to do this) I went to a rheumatologist and to find i had lost some cartilage in my right wrist, and i have CPPD which is a form of Gout or called psuedogout which is common in people with HH. Honestly my wrist pain did not begin til after phlebotomy . Now i have a few different types of arthritis , bone spurs, polychondritis, and the list goes on and on. I recently started colycrys a drug that has been around for ever like before 1900s, but recently got bought by a drug company which has made it a name brand only drug ( causing it to be pricey for me since i lost my insurance). But it is well worth it for me. Especially in my wrists and ankles. If you have not gone to a doctor for arthritis , i suggest you do. Cause i find helping my pain helps my spirit. Feel free to contact me ! Oh and this calcium build up can be seen in Xray or aspiration of joints.. i would go for the xray. ha ha ha..

I catch myself turning my wrist inwards too.

What causes that?

I am not sure, but for me it felt better to turn them. Or even not to sound weird but to sit on them. My right one especially. The worst pain ever. But i will say after starting that drug for psuedogout it helped alot. Have you ever got it checked out? Did your start before treatment for HH or after. I have read some about pain after treatment and it isnt uncommon. Mine started in my wrist after. And my other painful areas just got worse like in flares or episodes as i put it. But my knee and wrist were a constant. The only way i can explain the joint problem is by iron settling in the joints and once you get a phlebotomy, your body seeks out the iron. In my cause apparently i had plenty in my joints. Since your joints and fluid in joints are not rock hard, this iron once oxidized, can literally sheer you joints apart. Which can lead to overall inflammation and crazy bone healing which leads to bone spurs. Its still insane to me how intense HH can be and how little if any people let alone most doctors know about this. Pretty much where ever your blood flows this iron can cause a problem. I started a Facebook page LIVING WITH HEMOCHROMATOSIS if you would like to visit. And i started a blog before knowing this site was here. Cause i sure could have used it last year! When did you get diagnosed ?

my wrist/hand pain started about 1.5 yrs ago

been to many specialist and while performing blood test for RA my doc discovered a high Fe level 968.


no consensus from the docs of the cause of my pain

I've heard everything from carpal tunnel, subchondral cysts, to Hemochromatosis arthropathy

So you have RA? my mother has RA and has complaints like mine but more in her joints that RA has " attacked" i guess. She has the typical RA toes her feet and her hands hurt her most. I would just keep looking for answers. But at least it has been checked. Its super frustrating i know. Next visit i would ask your doctor about psueogout. It isnt always seen on xray. And i am not perfect by any means, but the meds that are non narcotic used to treat it has helped me greatly.

No, I don't have RA. But the first Rheumatologist misdiagnosed and wanted to start me on Methotrexate. Glad I got a 2nd opinion, and 3rd, and 4th ...


there's really no consensus amongst the "specialist".

I

I have had wrist pain this past week , which is something new for me. My brother has HH but also has Gout so he has a reason for wrist, hip & knee pain. It is only in my R wrist but it is sore all the time and I can't lift anything with that hand. Alieve & Tylenol seem to help plus I wear a wrist support. The thought of seeing another doctor is really stressful for me because every time I see one they seem to triggeranother symptom. I also have Porphyria, and those attacks are the worst because they mimic a Heart Attack and they want to admit me to the Hospital for all kindsss. .

It's over difficult to describe hand/wrists pain as it is transitory and changes forms in a matter of hours. Frustarting to describe for me and to the doctors.

After many specialist and tests my new rheumatologist suspects gouty arthritis and stated:

1) gout is not always accompanied by elevated uric acid

&

2) gout can be persistent and not just a "flare"

Exactly ! It's called pseudo gout .. Cppd is more common in HH patients. Insead of uric acid it calcium deposits which can cause big havoc . Did he start u on anything? I am on colcyrs everyday to prevent it . It really help. The reason that I am on everyday instead of just flares.. Is because every day is a flare. Or at least for me. It's helped my wrist out big time.. Or something did. I am glad u got new answers! Keep me updated cause I would love to know if it helps u.

Stepha,

no new meds yet, just blood test

will see the doc again in 2 weeks, I'll keep you posted

thanks for your input