Dealing with chronic pain
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Haemochromatosis

MolMol Member Posts: 52 Connected
edited September 2018 in Dealing with chronic pain
Has anyone got this condition? My joints are in so much pain, I am taking painkillers but they have no effect, I just keep getting sent from one doctor to another at hospital as they have not much knowledge about this disease known as a silent killer. Would love to hear from anyone who  has or knows of anyone who has it. Very bad disease that has severe consequences if not found early as I am experiencing. 

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @mol
    I havent heard of this but I know a lot of our members deal with chronic pain.  Have you ever seen a specialist pain team?
    Scope
    Senior online community officer
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @Mol

    Sorry to learn about your health issues.

    Have you tried the Haemochromatosis Society helpline, tel: 03030 401102. This is run by volunteers, who I have no doubt will be keen to assist you.

    You could also try the British Liver Trust helpline 0800 652 7330, they also have local support groups.

    Please let us know, how you get on and please let us know if we can help in any other way.
  • MolMol Member Posts: 52 Connected
    Hello Sam and Atlas,

    Thanks for your reply's, it seems like a condition that doctors overlook in this country as it has similar problems to other conditions so it is hard to identify.

    In America they are very aware of this condition and call it the silent killer,

    I have so many problems with this disease that every doctor I have seen just say it could be this or that. 

    I have now found a doctor who has studied and specializes in this disease, only problem I have is getting my GP to give me a referral to go and see him a he is at a different hospital to the one which I normally use.
     


  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Thanks for the support @atlas46
    @mol Im glad you found a specialist, is your GP being helpful in this? Let us know how you get on!
    Scope
    Senior online community officer
  • atlas46atlas46 Community champion Posts: 827 Pioneering
    Hi @Mol

    You should have no problem with seeing the Doctor you want, to consult with.

    Explain to your GP, the you want to see this Doctor and that "NHS Choices", will enable your GP to facilitate this.

    Come back if you encounter any problems.

    It is so important that patients, have trust and confidence in their treating Medics.
  • andy77andy77 Member Posts: 3 Listener
    Hi. I've had Haemochromatosis since 2007. It's nothing but awful for me. I suffer with all of the symptoms apart from diabetes. I ache continuously. The cramp in my legs is constant, no amount of stretching or acupuncture has helped. My forgetfulness is getting worse as is my energy levels. My hands are in constant pain, feels like broken fingers, like when I fell of my bike. 

    The advice I can give is this: 

    Keep ferritin level around 20-50. 
    Avoid alcohol.
    Avoid Vit C with meals.
    Tea and coffee help slow the absorption during eating.
    Exercise ...even just a 30min walk daily can help. 
    Try not to sleep more than 8hrs, HH will enjoy taking over and force you to sleep. You'll feel worse. 

    http://haemochromatosis.org.uk/

    Above is an amazing organisation with everything you need to know. 

    Good luck 
  • MolMol Member Posts: 52 Connected
    Helllo Andy72,

    I have been i touch with the Haemochromatosis Society many years ago, yes they give good help and advice and are the ones who told me about the  doctor who I have contacted about this disease. Not sure how far you are with this disease, I have Abnormal liver functions, Nash Non Alcoholic steatohepatitis, Cirrhosis, Diabetes, Osteoarthritis, degenerative cervical spine disease, acid reflux, sleep apnea, High blood pressure. I get PIP at the lower rate and have just got my blue badge.My hands are in total pain same as my knees and ankles and all my joints hurt . I have basically given up with asking about pain relief as I am in a position where if I take anything that is too strong it will put my job at risk as I work in a safety critical role. I am only able to take pain killers at night as my occupational Health at work have said if I take my pain killers during the day they will take me off my duties. That then gives my company the opportunity to say I am unable to do my contracted job and then they can terminate my contract. I know this as they have tried to do this but I managed to stop them. I hope more people read about this disease and start to understand it affects all your organs and the effect it has on peoples lives. Sorry I go on a bit just want people to make sure if they get this disease they get early attention medically as then it could prevent a lot of pain.
  • andy77andy77 Member Posts: 3 Listener
    I've never tried get PIP even though I'm only part time work. Fatigue, overheating and mental health is what I suffer with most. Not sure I'm keen on benefits to be fair but I am struggling with money and a fulltime job would just kill me. 

    I wish you all the best and hope that everything goes well for you in the future .
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I get pip and I work part time. It makes a difference
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • MolMol Member Posts: 52 Connected
    Hello Andt77 and debbiedo49, I also get lower  rate pip and I have recently got my Blue Badge. Both of these are such a help. I am hoping more people with this condition come on here and talk about it. It is a disease that can get you depressed very quickly. I would always  advise people with this disease to apply for pip.
  • andy77andy77 Member Posts: 3 Listener
    Think I need to make a few phone calls to learn more about this. 

    I'm quite a bad depressive with anxiety attacks. Family think I'm Bipolar and noticed a huge change since diagnosis. Lovely....

    Nice to know this conversation exists. :smile:

    X
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