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Does anyone elses joints crack with Hemochromotosis?

Posted , 10 users are following.

DebzHomozygous
DebzHomozygous

I was diagnosed with Hemochromatosis in march this year, I have 2 copies of the C282Y mutation (Homozygous) and the highest my serum ferritin ever got was 800 with a transferrin saturation index of 82%

My pain started in my hips and wrists and I also had tremors in my arms and muscles spasms in my calves, but soon after my knees and ankles had begun to hurt and my bones started cracking in my knees.

Sadly nearly every joint in my body now cracks and its very loud, and although it sounds bad, it causes no added pain, but there can be mild to moderate swelling in my knees, wrists and ankles at any time.

Every time I open my mouth to eat the left side of my jaw cracks also.

Mostly the cracking happens when I move or get up from a seated position, but other times I feel a pressure building or I am in pain and have to move to make it more comfortable.

I have had 8 venisections in the last 16 weeks and feel that none of my symptoms have been reduced, if anything I find I am even more tired now than before, which I guess is to be expected with so much blood loss.

I have pain in most joints, swelling in wrists, hands, ankles and knees only, fatigue, hair loss, cracking joints, memory loss, tremors in my arms, which can spread to my whole body, but rarely and muscles spasms in my calves, which can travel up to my thighs, but rarely, heart palpatations which I did get checked out and it came back ok.

Are all these symptoms linked to hemochromatosis, I think mostly they are, from the extensive reading I have done.

All except the bone cracking, so just asking here if anyone else's bones crack? PS my doctor is useless, I was the first person he diagnosed with hemochromatosis and he doesn't have any interest in learning!

1 like, 27 replies

27 Replies

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  • abookreader
    abookreader DebzHomozygous

    Posted

    Hi

    My bones crack all the time. Daily. Wrists ankles knees shoulder all of it. Not much pain but quite a bit of noise.

    • DebzHomozygous
      DebzHomozygous abookreader

      Posted

      Hi abookreader, finally someones with the same issue! yippee!

      Did it only start with hemochromatosis, or was it way b4 you knew about hemochromatosis?

  • abookreader
    abookreader DebzHomozygous

    Edited

    i think i noticed it more after my diagnosis. seems like all my joints like to talk. wrists ankles hands neck etc

    • james25398
      james25398 abookreader

      Edited

      hi there, came across this discussion when googling cracking joints from heamochromatosis online! Ive also recently started getting cracking joints at quite an alarming rate but only after my iron depletion which is really strange.

      May i ask how your joints are now and weather you have managed to improve them some how or have gotten any answers as to why this occurs? Thank you

    • DebzHomozygous
      DebzHomozygous james25398

      Posted

      Hi James, I am now in maintenance from Dec 2019, sadly I feel no benefit from all this blood removal, but I know it's essential to my wellbeing.

      Regarding my joints, everything is the same, my nurses tell me that the excess iron either sits in ur organs or your bones, they did a full scan of all my organs and found no damage, they told me that my iron was in my bones, which can then damage my bones.

      I have already had x-rays of my hips and knees as they where the worst affected, I am on a waiting list for a bone density scan.

      I now have arthritis in most joints including those mentioned before, but also wrists, fingers, jaw, ankles and spine, to name a few.

      I also have a partial tear on the LCL ( ligament ) in my knees, which makes them a bit unstable sometimes, I also have a widening of the outer knees joint, swelling in them too. But only my knees and hips have been x-rayed before covid! So who knows about the rest of me lol

      Sadly this can't be reversed, but can be managed with injections and NERDS and painkillers.

      I am due back in Hospital in 2 weeks for more venesection, so will ask about the bones density scan when I am there and keep you posted.

      what I would suggest is to follow in my footsteps and walk, do at least your 10 thousand steps a day over several journeys if necessary, this will help strengthen your bones!

      Speak with your Hemotoligy consultant if you have similar symptoms or issues.

    • DebzHomozygous
      DebzHomozygous james25398

      Posted

      I must add that it's quite rare to attack bones, mostly it goes for organs, which is why it's hard to get information on it.

  • mtb324
    mtb324 DebzHomozygous

    Edited

    Wow I have wondered for years why my legs and joints crack so much, especially around bedtime. When I'm trying to sleep I sometimes have to crack my leg joints like 30, 40 50 times, it's crazy. I was diagnosed with hemochromotosis 10 years ago but never put 2 and 2 together.

    Thanks for mentioning this, at least I know why now.

    Matt

    • DebzHomozygous
      DebzHomozygous mtb324

      Posted

      I would suggest a bone density scan to anyone with consistent clicking or cracking joints and hemochromatosis.

      Ask your nurse to put you on the list

  • george52046
    george52046 DebzHomozygous

    Posted

    yes jaw cracked all the time but doesn't do it now I keep my ferritin at 45 and have done now for years

  • kathryn38617
    kathryn38617 DebzHomozygous

    Posted

    Hi Deb,

    I have many of your same symptoms, the cracking of the joints, swelling, hair loss, etc. I used to wonder why my Dad's joints cracked all the time...now I know. He just passed away a year ago, and he struggled mightily with arthritis and other challenges. He was never diagnosed with HH/iron overload. but I'm pretty sure he had it. I helped my Dad a lot over the last several years, and the stress of that and my full time brain-challenging and stressful sales work nearly did me in. It wasn't until I was let go from my last position that I was able to focus on my health consistently enough to get a diagnosis and treatment. Silver linings...

    I am homozygous C282Y and currently being venesected down to maintenance levels, since April of this year. I'm 60. I was diagnosed with HH and iron overload this year. I knew I had the genetics for it for almost a decade, but it was not ever addressed by my GP by checking me with a ferritin test. I'd had symptoms of fatigue, brain fog, memory loss, depression, bad sleep patterns, skin problems, hair loss, heart palpatations, and more.

    Fortunately, my iron is coming down fast and my last pre-venesection ferritin lab test was charted at 109 . I'm a lot better, but the condition has caused me such hopelessness at times, because I did not know why I was feeling so bad all the time. I'd want to be myself and run, jump, play, compete, get things done, etc, but these things were not happening. I could not, as hard as I tried, will myself to get better and do more.

    Practically speaking, though, the cracking joints are helped by a liquid glucosamine product called Synflex. I don't think the snaps, crackles and pops are going away for good though, so topical pain relievers have been helpful too. Supplementing with a liquid magnesium has seemed to help also.

    I'm making progress though, and feeling like there will be better days ahead yet.

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