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In constant pain

Posted , 5 users are following.

Brummiegirl70
Brummiegirl70

Cramp & bruising getting worse

Can anyone recommend anything to help

Told my consultant & to my amazement had told me he's not heard of these symptoms being related to the illness

In which I mentioned this forum & advised him to join

The lack of knowledge could have a affect on anyone who is unable to work due to having this illness & is trying to claim sickness benefits

2 likes, 9 replies

9 Replies

  • karen2006
    karen2006 Brummiegirl70

    Posted

    Bruising is a common symptom. I get cramps all the time and my right hip,knee and ankle ache so bad. I still work as I just take painkillers. Doctors do look at you as if you don't know what your talking about they need educating

    • Brummiegirl70
      Brummiegirl70 karen2006

      Posted

      I can't believe the specialists don't know these symptoms

      They should give each patient a questionnaire & ask what symptoms / pain they have

      I've suffered for a lot of years now

      And it's only recently I've found out it's known symptoms of haemochromotosis

      Though they are becoming worse

      Also I suffer extremely painful neck ache

      Where it causes migraines

      I also get pain in my hips which keeps me awake at night

      I start my venesection the 6th Jan

      I'm hoping i will soon start to feel better

  • allaroundanne
    allaroundanne Brummiegirl70

    Posted

    Hi! I am a retired pain management physician from America and I also have hemochromatosis.  My worst complaints are all the aches and pains.  I have access to all the medical research papers and have even looked into getting admitted to clinical trials.  They are looking at using a rheumatoid arthritis drug on us as lowering our iron does nothing to ease the joint pain and muscle cramps.  A great many of us end up at chronic pain clinics, on narcotics, just to deal with the wretched pain.  I am trying out a spinal cord stimulator.  I tried the Nevro brand a couple of weeks ago and it worked like a charm for my joint pain, but did nada for the muscle cramping.  I am tryin the St. Jude model next week, it has a different wave form when it stimulates your spinal cord and we hope it will hit both pain.  I will be back to let everyone know if it is a successful trial.  I would much prefer a SCS to living on narcotics and flexeril.

    Lynn

    • Brummiegirl70
      Brummiegirl70 allaroundanne

      Posted

      There's a lot that my specialist said that he didn't think my symptoms were related to haemochromatosis as said he's patients haven't complained having them themselves

      I told him to look on the forums as that's how I became to realise mine was

      I'm hoping our specialists do recognise our suffering & offer us some treatment to ease the horrific pains

      Good luck with your research hopefully your findings might find there way over here in England and help all the other sufferers :-)

  • allaroundanne
    allaroundanne Brummiegirl70

    Posted

    One of the clinical trials I was looking at is going on in France.  Your specialist should have heard of it, that's the one using the rheumatoid drug. It is a shame when doctor's don't stay up to date.  I can't tell you how many doctors I run across over here who still think that our joint pain is due to iron in our joints. It is VERY frustrating.

    • eric89660
      eric89660 allaroundanne

      Posted

      Pardon my ignorance,but I thought it was. Please can you enlighten me as to what it is? Presumably you mean something other than arthritis?
    • allaroundanne
      allaroundanne eric89660

      Posted

      Not a problem, the reason we don't feel better in our joints after phlebotomy is that the arthritis we get isn't related to excess iron at all.  The easiest way to explain this is by using an analogy.  We have a ride along gene, much like blondes seem to have blue eyes...the blue eye gene is sort of tied to the blonde haired gene.  Hemochromatosis has a tied along gene that causes the build up of an inflammatory molecule, interleukin 1L-b that causes inflammation inside of joints.  The clinical trial in Rennes, France is using this specific drug that Rhuematoid arthritis patients take that block this molecule.   Anyway, I am getting far too technical here, but docs should at least know that our arthritis isn't iron induced and that you could " bleed someone dry" and their joints will still hurt!  I hope that explained it.

      Lynn

    • eric89660
      eric89660 allaroundanne

      Posted

      Yes,that's clearer.Thanks.Another thing I don't understand is that my x-rays show only mild arthritis but it is still quite painful.

    • sheryl37154
      sheryl37154 allaroundanne

      Posted

      Well, I really hope the results of this trial helps people with joint pain.

      However, it is well documented that haemochromatosis causes arthritis in the joints.  Unfortunately, once the damage has been done, venesections do not make it any better.  It may halt it worsening.

      I have been to two conferences on haemochromatosis which included a speaker who was an arthritis specialist who researches its connection with haemochromatosis.  He gave us the bad news on that.  He half joked about drawing out the hemosiderin which accumulates in the joints but did not think anyone would want to go through that.

      We also had as a key note speaker, Prof Pierre Brissot from Rennes France but arthritis was not his field.  There seems to be a great team in Rennes researching haemochromatosis.  smile

       

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