Hello anyone else got a diagnosis of Forestiers/DISH?

Forestiers2016
Forestiers2016 Member Posts: 4
edited 24. Nov 2018, 16:31 in Say Hello Archive
I've been trawling websites/social media trying to find others in UK who may also have been diagnosed with Forestiers/DISH. It seems there is very little info about. My GP had to look it up.
Apparently 0.4% UK population have the diagnosis so it is a rare disease - but 4% of people in Japan have it. We share it with mice and dinosaurs. There's a theory that the 'flowing calcification' of the spine may be protective but the USA (in active) social sites I have found seem to mainly report experiencing the disease as horrendous. Terrifying reading!!
I was referred to a Rheumatologist who discharged me until I need major pain management (hic)... if I do. There's no treatment.
I find swimming helps me stay mobile and I've devised exercises that work round the problems of spinal rigidity.
If there is any one out there in UK with this diagnosis and who would like to share their experience, I'd be very grateful to hear.

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi forestias 2016
    Welcome to the forum, sorry to hear of your condition I have never come across this condition but there are lots of people who are on the forums that may have come across it. The people on the forums are friendly and welcoming and understanding and will soon see your blog and give their opinions and thoughts
    All the best the most popular forums are Living with Arthritis and Chit Chat
    Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I've heard of it but don't have it. If I remember correctly the condition is caused by extra bone growths and there may be inflammation e.g. tendonitis which could put it on the spectrum of inflammatory arthritis conditions (of which there are around three hundred) and I guess it could possibly come under orthopaedics umbrella too. I have bone growths on both sides of my knee joints (both upper and lower leg bones) but that's thanks to osteo arthritis. The reason I have heard of it is that I think someone else posted mentioning DISH but that was some time ago. I am not surprised your GP had to look it up, they know a little about a lot is all and gaps in their knowledge are bound to happen.

    I am sorry, what a difficult thing to live with: how is it affecting your life? From what you said I take it you are not in too much pain at the moment and I hope it stays that way for a long time yet. There is nothing wrong in devising ways to help yourself, we all do it as we adjust to the demands of our various trials and tribulations but have you thought about starting a forum specifically for Forestier's? Others with it may not see places such as this as relevant to their needs. I wish you well, the forum is a place of information and support: we may not be able to inform too much but we can certainly support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I'm sorry, I haven't even heard of it.

    I did manage to find this page

    https://rarediseases.info.nih.gov/diseases/6460/diffuse-idiopathic-skeletal-hyperostosis

    If you scroll down to the bottom there are a couple of social media sites which I can't check out as I don't do it.

    I guess we all have pain in common and, if we can help with that, we'll be glad to.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Forestiers2016
    Forestiers2016 Member Posts: 4
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, I've heard of it but don't have it. If I remember correctly the condition is caused by extra bone growths and there may be inflammation e.g. tendonitis which could put it on the spectrum of inflammatory arthritis conditions (of which there are around three hundred) and I guess it could possibly come under orthopaedics umbrella too. I have bone growths on both sides of my knee joints (both upper and lower leg bones) but that's thanks to osteo arthritis. The reason I have heard of it is that I think someone else posted mentioning DISH but that was some time ago. I am not surprised your GP had to look it up, they know a little about a lot is all and gaps in their knowledge are bound to happen.

    I am sorry, what a difficult thing to live with: how is it affecting your life? From what you said I take it you are not in too much pain at the moment and I hope it stays that way for a long time yet. There is nothing wrong in devising ways to help yourself, we all do it as we adjust to the demands of our various trials and tribulations but have you thought about starting a forum specifically for Forestier's? Others with it may not see places such as this as relevant to their needs. I wish you well, the forum is a place of information and support: we may not be able to inform too much but we can certainly support. DD
    Thanks for your reply - I posted to this site because Forestiers comes under the general label of rheumatic illnesses - when one has so little information its hard to know what might be attributed to the illness or to other things - best wishes
  • Forestiers2016
    Forestiers2016 Member Posts: 4
    edited 30. Nov -1, 00:00
    I'm sorry, I haven't even heard of it.

    I did manage to find this page

    https://rarediseases.info.nih.gov/diseases/6460/diffuse-idiopathic-skeletal-hyperostosis

    If you scroll down to the bottom there are a couple of social media sites which I can't check out as I don't do it.

    I guess we all have pain in common and, if we can help with that, we'll be glad to.
    Thank you for the link - will investigate!
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Is this your condition Forestiers2016?

    https://www.arthritisresearchuk.org/system/search-results.aspx?keywords=DISH&CurrentPage=1&SortBy=&OrderBy=&ipp=&fb=&cat=

    It's on the main Arthritis Research UK site.

    Also did a search and there was at least one other person who used/s the site with it!

    https://arthritiscareforum.org.uk/search.php?keywords=Diffuse+idiopathic+skeletal+hyperostosis&terms=all&author=&sc=1&sf=all&sk=t&sd=d&sr=posts&st=0&ch=300&t=0&submit=Search

    I really hope it helps, but I will say pain is pain and everyone here understands that. You will share much with the members on here and I hope you will decide to stay.

    Best wishes,

    Ellen.
  • cott97
    cott97 Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi. I was diagnosed about 5 years ago in my mid 40's. I now have a mobility scooter as can't walk far. I don't think many people know about it including doctors.

    Sent from my CLT-L29 using Tapatalk
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi cott97
    welcome to the forum.and I am sorry to hear that DISH has affected you so badly with your walking and I wondered what treatment you were receiving presently? We have had a couple of threads on this topic before. The most informative one is this one https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=37069&hilit=DISH
    We also have some information about DISH on the website here. https://www.versusarthritis.org/about-arthritis/conditions/diffuse-idiopathic-skeletal-hyperostosis-dish/
    I am sure our members will make you very welcome and support you. Please ask as many questions as you like as that is what we are here for. You might like to join in on our Living with arthritis forum as this is where most people post https://arthritiscareforum.org.uk/viewforum.php?f=8
    Best Wishes
    Sharon
  • catc
    catc Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi Forestier2016, I also have this little known about disease. There is a great Facebook support group & separate research site for DISH.
    I also have found medics have little idea about it or never heard of it. It doesn't help that the standard description of it advises it often doesn't cause symptoms & it is mostly old men they get it. Even on the versusarthritis info.
    If you join the support group you will see lots of women & young people have it & struggle with severe pain. As a community we are trying to fight this misconception. It can be soul destroying to be dismissed by consultants that it is not a painful condition! It not only effects joints but also can destroy tendons.
    I was diagnosed at 39 but have had symptoms years prior to that. I've had to research myself through the Facebook group. Have a look but dont panic. Not everyone gets it severe.
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Catchphrase's and welcome to the Versus Arthritis forums

    I'm sorry to hear that you also are affected by DISH and its great that you have formed a specific support group for others. I hope you found the links in this thread useful.

    Do come and tell us how you get on and add any specific information that you think would be helpful to others.

    Best wishes
    Brynmor