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Haemochromatosis and frozen shoulder is there a link?

Posted , 5 users are following.

marie86421
marie86421

Hi All

Having recently seen a rheumatologist and having to give a brief medical history to him, I was surprised to learn that the two frozen shoulders that I have had are linked to haemochromatosis. 

I am interested to see if any of you have had a frozen shoulder.

Not only have I had 2 frozen shoulders but carpel tunnel release in both my wrists as well.  I thought that the carpel tunnel was due to the fact that I used a computer all day at work.  The first carpel tunnel release was done in 2000 on my right wrist (I am right handed) and about 2 years later my left shoulder became frozen.  So dibilitating and painful and a long recovery.  It took 2 years for it to free completely.  In 2008 my right shoulder froze and this one took 4 years to release.  During that time, in 2009, I had carpel tunnel release on my left wrist.  Both these ailments were before I was diagnosed with ferroportin disease.  I was diagnosed in 2011.

At the time of my second frozen shoulder my friend was wondering if the ferroportin disease had anything to do with it.  I just didn't know and didn't think to ask my consultant but I shall do on my next visit.

Look forward to receiving your comments.

Marie

2 likes, 22 replies

22 Replies

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  • haircrazydaisy
    haircrazydaisy marie86421

    Posted

    Hi Marie,

    As you know, I'm very new to this and am currently discussing symptoms etc... with family members.  My sister, mum and two female cousins all on my mum's side, suffer with frozen shoulder - weirdly, all left side.

    It's a bit like a can of worms, isn't it?!  The more I read about this condition, the more light bulb moments I have!

    Kindest regards,

    H

    • marie86421
      marie86421 haircrazydaisy

      Posted

      Hi H

      That is interesting.  Do they have haemochromatosis?

      Although my sister has ferroportin disease like me, she has not had a frozen shoulder.  Her ferritin levels were not as high as mine though.  Mine were 5000 when diagnosed and my sister 3200 when diagnosed.  She has had children and I have not, probably explains why my ferritin was higher.

      I hope you don't get a frozen shoulder, they are really painful.

      Good luck at the hospital.

      Marie

    • haircrazydaisy
      haircrazydaisy marie86421

      Posted

      Hi Marie,

      We don't know if they have HH yet.  We met up with our cousin a little while ago and were talking about similarities between us (foot shape etc) and gradually got around to our various health problems, as you do :-)!!  We all had left side neck pain, creaking in the neck that sounds like there are crystals grinding when you try to turn your neck, frozen shoulder, swollen knuckle joints (varying degrees depending on age but starting in first two fingers - right hand "pointy" finger seems to be the first to start turning).  My sister and mum are going to get tested.

      I didn't see anyone who could help me with test results today - I had a scan but didn't see the consultant.  I'll have to go back to the GP for those print outs, I think.

      Kind regards,

      H

    • marie86421
      marie86421 haircrazydaisy

      Posted

      Hi H

      I can relate to the neck problems as well.  My neck was the first thing that I started to have problems with.  Just like you say, creaking in the neck that sounds like crystals grinding which eventually led to a headache.  I used to get this creaking when I was comparing reports at work, looking from left to right working down each report.  The crunching noise in my neck used to make feel real queasy and I had to stop.  Eventually I asked a colleague to read out from the one report while I looked at the other.

      I stopped turning my neck and more or less keep it straight which has limited my movement.  I also found that if I was talking to someone and had to turn my head to talk to them and hold it in that position, after a while I felt dizzy and sick which would last quite a while.  I mentioned this to my doctor and was told that it was more than likely wear and tear in the neck.

      I do gentle stretching exercises now but every now and again I feel the crunching and that is when I stop.

      My knuckle joints nearest the tips of the fingers get painful.  There seems to be a swelling across the part where it bends and it is painful to touch it but not too painful to bend it.  This comes and goes.  Some joints get hard knobbly bits on that are not painful, these too come and go.  Really weird.

      It is so good to be able to compare notes.

      Marie

    • marie86421
      marie86421 sunni13905

      Posted

      Hi Sunni

      No, but my jaw has ached on occasions.  This is going to sound weird but sometimes my jaw just clamps shut.  I bit my tongue once and made it bleed.  After that I try pretty much to keep my tongue out of the way of my teeth.  I have no idea what causes it and wondered if any of the iron has deposited in my brain causing the involuntary action. 

      When I mentioned it to my doctor he had no idea and that was that.  Can't help thinking that iron overload is to blame somewhere along the line.

      Marie

    • sheryl37154
      sheryl37154 marie86421

      Posted

      I think we have to start saying "Well, can you find out about it?"
    • marie86421
      marie86421 sheryl37154

      Posted

      Hi Sheryl

      I have mentioned it to one or other of the doctors that I have seen and it was pretty much ignored.  My next appointment with the haemochromatosis specialist is in September and I shall mention it then and see what happens.

      I shall let you all know if there is a decision to investigate it.

      Marie

  • sheryl37154
    sheryl37154 marie86421

    Posted

    I have seen carpel tunnel problems listed as a complication of HH.  But also I have noticed that HH affects the joints that have had the most work.  E.g. a sport that requires a lot of use of ankles, the ankles are affected, and similarly, the knees.

    Have your shoulders been used a lot, in work or play?  Or were they a weak feature long before frozen shoulder set in - did they tire easily?

    But I guess that is how it would go even if you don't have HH too.

    Frozen shoulder comes up a lot in the menopause forum too.  They complain of the same symptoms as HH.  I used to read them and tell them to get an Iron Studies test but they were not interested.  They preferred to keep complaining of menopause.  So I left them to it.

     

    • marie86421
      marie86421 sheryl37154

      Posted

      Hi Sheryl

      I wouldn't say that my shoulders have been used a lot in work or play.  I used to attend an exercise class once a week but that is about it.  I didn't notice them being particularly weak, although my muscles felt weak and still do.  I wonder if holding my shoulders in a certain position when I was using the computer at work could have done it, but then since I have retired I spend a lot of time on my computer at home and feel OK.

      I haven't read the menopause forum, shall have to have a look and see what they are reporting.

      Marie

      The only area where I am having joint problems at the moment are my hands and like most people, I use them a lot.  My sister is having problems with her feet and tells me that they are really painful.  Her work involves her standing all day which doesn't help.

      I have done a lot of walking in the past and my feet are OK at the moment.

  • sunni13905
    sunni13905 marie86421

    Posted

    wow, very enlightening... I have been having pains in my legs, feet and pretty much any other part of my body for the last few years.  I chalked it up to getting old.  Some mornings it's all I can do to get walking.  This came around the same time as the thinning hair, fatigue and being told I had the heart murmur.  Also have the frozen stiff joints that cause my hands to contort in various poses for varying lengths of time. Again, thought it was just old age. 
    • marie86421
      marie86421 sunni13905

      Posted

      Hi Sunni

      It is not just old age.  My sister has very painful feet, like you, some days she can't bear to be on her feet.  She tells me that if feels like she is walking with broken bones in her feet.  At one stage she ended up in A&E unable to walk at all because the pain was excrutiating and sent shooting pains through her feet.  She was given some naproxen which took the pain away.  She still needs a constant supply of this drug otherwise she would not be able to do her job which involves standing for long periods of time.  I am not sure whether her feet were swollen, I must ask her.  Unlike some other people who have posted about painful feet, my sister's pain is on the top of her feet and not underneath.

      Where is your pain?

      Best wishes

      Marie

    • sunni13905
      sunni13905 marie86421

      Posted

      wow, broken bones is right.  my pain is mostly under the front part of my feet and sometimes across the bridge.  I too have a steady supply of pain killers but only take them when I can't stand it anymore.  I find if I'm taking them every day they begin to lose effectivness. As I write this I realize my feet are paining on the top near my ankle...lol.  Hopefully with this new doctor I'm seeing today I can get the anwers to a lot of questions. I'm  (as cliche as it sounds) sick and tired of being sick and tired!
    • marie86421
      marie86421 sunni13905

      Posted

      I know what you mean about being sick and tired of being sick and tired!

      Across the bridge is where my sister gets her pain.   So far she has not had any pain under the foot.  I shall mention our post to her as I am sure she will be interested to communicate with someone else who is experiencing the same pain.  She posts on the Haemochromatosis dot org Uk website (had to write it like this otherwise the post has to be moderated).  

      Like you, my sister tries not to take the tablets everyday as she says the same, losing effectiveness.

      Best wishes 

      Marie

    • sunni13905
      sunni13905 marie86421

      Posted

      would love to hear from her.  just got back from my appointment.  my ferritin level was 277 at my last bloodwork .  Over the past year it's gone from 195 to 277.  Just called my mom and begged her to go get the screening done.  I got more bloodwork again today and if levels are still high they are going to redo the HH screening for me.  Apparently they've either still not received the results back from the lab or they've been misplaced...duh!
    • marie86421
      marie86421 sunni13905

      Posted

      Mentioned this discussion to my sister and she is interested in participating.  She is having problems with her email at the moment and is currently trying to sort it out.  Once she is up and running I am sure that you will hear from her.

      Best wishes

      Marie

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