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Forestier's Disease what is in store for me ???

Posted , 10 users are following.

Guest
Guest

Hi

i was diagnosed with DISH 4 years ago at the age of 35. I have significant disease in my spine for which i have had a number of nerve ablations for.

I have recently developed bone growths on my wrist shoulder and feet.

I am dependant on opioid analgesia in order to continue to work full time.

Is there anyone who can give me some expectation on how disabling this can get and how long it takes.

I feel i have the body of a 70 year old and want to do what a 40 year should be doing !!!

Jenni

4 likes, 24 replies

24 Replies

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  • helen31374
    helen31374 Guest

    Posted

    Hi Jenni

    I was diagnosed with this disease only 3 months ago after complaining for a fair while about a painful back from neck to tailbone.

    Most doctors look at me like im nuts when I tell them i am in great deals of pain especially in the left side of my neck and right chest, cant swallow properly and an xray 3 months ago show at C2 a very large bone spur, one pushing out the back the other into my oesophagus, I have nerve damage etc etc.

    I have stenosis, radiculopathy etc and most of this could have been caused by DISH.

    May I ask you, have you had any steroid injections or hormonal imbalances or is  your disease genetic?

  • vickie92929
    vickie92929 Guest

    Posted

    Hi

    For over a year now been having pain in my right side of my back and stiffness; after doctors looked into it by doing scans, x rays etc been confirmed that I have DISH - Which I believe is also called forestiers disease.

    Just had the worst week ever, where the pain was just too bad that doctors put me on dihydrocodeine along with my naproxen.

    After reading up on it has made me quite worried.

    I work long hours and can take its toll and at end of day feel like a old woman.

    Any advice or information would be great

  • Stanm
    Stanm Guest

    Posted

    Jenni, so sorry that you suffer like many others here in this group. Your story is just like mind. After a successful back surgery in 1987 at 28 I retired early as a firefighter. I started having neck pain in 1997 and had my neck fused c3 c4 with a cadaver bone due to a bone spur. My neck started to fuse after surgery and it continued to fuse. I worked up until I was 54. Now the pain is so bad I feel like a 100. My neck is almost completely fused along with thoracic area. I can't take arthritis meds and I'm reaching out to anyone here that has tried Humira or any of the other TNF drugs. I hope you are better and all others here can help me . I have stopped getting much exercise and don't get out the house much. I good stand to loose 20 lbs or so that could help. I now want to try the drug humira, but afraid.. Thank you to all who here who struggle each day. I would like to talk to others for encouragement . Stan
    • deborah46099
      deborah46099 Stanm

      Posted

      Hi Stan, I guess we are all in the same boat here. I don't see Humira doing much good with this disease. Best thing I have found for the pain so far is steroid shots, but you can only get so many a year. I'm looking into the hemp oil now that it's legal here in my state. I'll post when I finally get some and see how it works.
    • suzanne37458
      suzanne37458 Stanm

      Posted

      I am really liking this info as my spouse has been dealing with back pain since early 20s and now he’s 54, he was diagnosed with DISH disease when he was 51. It helps reading for support what others are taking an have tried.
  • clyde70343
    clyde70343 Guest

    Posted

    Jenni,

    I have had DISH for over 20 years that I know of. When I was 54 after over 30 years of working with my hands I suddenly was unable to sit, stand or even lay down without severe back pain. I was lucky in the sense that I had enough service to retire and after 11/2 years was determined disabled and able to draw social security early. I have what would be considered a severe case of DISH. I have had 2 lumbar surgeries to release spine compression. Also I have had a major cervical surgery to remove 7 bone spurs pressing against my throat and spinal cord including a fusion of C 6-7.As a result of bone spurs I have had 3 shoulder surgeries.My feet, hands and spine are loaded with bone spurs causing different levels of pain. Please don't jump to conclusions and expect this to happen to you. It probably will not happen as severe as myself. After about twenty years my spinal pain has subsided considerably as my spine is now fused. I still have lumbar pain and the most problem is with neck and hands. My hands have erosive osteoarthritis, meaning my hands are loaded with bone spurs and quite painful. The biggest 

    problem I have is the general lack of knowledge or understanding the doctors of today have about DISH and the difference between DISH and ankylosing spondylitis. Most doctors act as it is no big deal from what they interpret. From what I have read from those with this disease I believe this is an inherited disease, but apparently it does not get enough attention form more indepth study. Don't give up, you can learn to live with this by being positive, having faith and knowing there are those around you that care and others that have much bigger problems. Good luck.

  • suzanne37458
    suzanne37458 Guest

    Posted

    Hello

    my spouse has this an just wondering if anybody knows how quickly this goes until no mobility

  • deborah46099
    deborah46099 Guest

    Posted

    It's different for everyone. And for those that don't know this......it IS genetic. You don't just catch it from somewhere. It's in your gene pool somewhere. Mine is now so bad I will be getting some serious fusion of the last 2 L4-L5 and remove all the extra junk off the nerves next month., with hopes there will be about 50% less pain after I heal from the surgery.

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