Living with Forestier's disease

Hello. I have recently been diagnosed with DISH and severe osteoarthritis in my lower spine, also kyphosis. I am, as it appears many in this group are too, finding it a bit of a shock to experience how lightly GP's take this diagnosis as well as how little they know about it. Each time I go to my GP and tell him something I have discovered is liked he says "Really!?". I am not troubled by this at the moment because he is keen to learn. I am coming to terms with the chronic pain sufferers experience 24/7, also that there are no analgesics so far that give pain relief - only take the edge off. I have drug sensitivities and incompatabilities that mean I can'tt take anti-inflammatories, my cholesterol has gone through the roof ( apparently some research shows this can be common with DISH) and pain has elevated my BP. I have Achilles Tendonitis and Spurs and need a knee replacement. I also have spinal stenosis which is an added complication. Long and complicated way to say my back is stuffed I am coming to terms with the disability it is causing me and now the fact that I will continue to deteriorate, I am aged 55 and am not thinking about the next 30 years of this. What I AM struggling with is the lack of public awareness of this disease and especially in terms of my ability to work. Another thing that concerns me is that due to the fact that I am on a Social Security payment means I am unable to have further xrays and scans to determine the larger extent of the disease eg: cervical, pelvic and hips because the cost to the Govt is an issue. Sigh. It's a bit of a Catch 22 situation. I try to stay positive and learn as much as I can about myself and how I can have quality of life and I am looking for a DISH support group in Australia. Does anyone know of one here? A google search has come up empty.

Hi Deborah,

Thanks for the reply. While looking high and low for prognosis type info about DISH I saw it described as an 'orphan' disease. Nobody wants to take it on and know little about it. I would like spend some time with the medico that has said that this disease is often painless. I can't see how it could possibly be painless if diagnosed properly, but I guess that is one of the many frustrating comments I will have to get used to I guess. I don't think I will spend any further time looking at diagnosis info, my GP is getting nervous about me becoming an 'expert' In regards to support, I intend to set up a Facebook Support Page in the near future. Perhaps some local exposure through the press may incite some interest in further research - who knows and worth a try. I was reading a Medical Pain Management circular in the doc's surgery yesterday. Comments about using some of the analgesia I use (Tramal and Panadol) for chronic pain were interesting - the magazine stating that neither of these drugs have shown to be effective with bone related or chronic pain. Hmm. Well from what I have read on this site nothing is effective at totally removing the pain ; just 'taking the edge off' - which has been my experience too.

So I guess it's about finding a routine that gets me through the day; allows me to pursue, even to a small extent the activities I enjoy for as long as I can. Thank you for listening to my whinge - catchyalater

Hello everyone! I am 53 years old and have had a stiff neck, spasms between shoulder blades, lower back and hip problems going on 10-15 years. I started off with physical therapy and chiropractic services. It was the chiropractor who first told me about the bone spurs. I then read in a medical journal that my neck stiffness, limited mobility, and shoulder blade spasms could be a result of a car accident I was involved in 7 years prior. It seemed as I got stressed with one thing or another this area of my body was affected.

Massages and chiropractic services kept me going, but soon became too expensive; especially without health insurance or insurance that does not see chiropractic practices as a viable and insured service.

Fast-forward, I was told that I had a pinched nerve and arthritis in my neck. Looking online I found Laser Spine Institute, had my most recent MRI sent to them for diagnoses. Their findings was bulging , bone spurs, stenosis (DISH), but no Forestier's Disease. All my problems could be fixed in two minimally invasive surgeries costing roughly $25,000 each. I opted for another opinion and found a Nero-surgeon locally, who fused the C3-C4 vertebrae which in turn relieved the spasms and pain in October 2014. When I went back for the follow-up in November, that is when he first told me of Forester's Disease and basically said just what all of you are saying- it has no cure, it's degenerate, progressive, no information on how or where it begins or why some are affected in their upper vertebrae (neck area) while others are mid to lower back. He too told me to look it up for more info. That they, the doctors, had little information as well.

My surgery was performed from the right front side of my neck passing close or through the voice box. My voice box was not affected. I feel no more pain, but I still have limited range of motion in my neck, stiffness, and that leaning forward that leaves me feeling as though my neck can't support my head. If I'm sitting for some period of time it takes some amount of stretching and physical therapy moves to stand up straight. By the way, has anyone who have had this surgery now have big toe pain or tingling in their hands or feet?

I feel as though I'm still in recovery. Everyday I have to do these therapeutic exercises to improve my posture. I have recently went to to physician (March 2016) about my right knee. He felt my knee and said he could feel arthritis and referred me to an orthopedic doctor who in turn did X-ray's and sent me to physical therapy.

Oddly enough, after doing some routines range of motion exercises, the therapist stated that he thought my knee problem may be a result of what was going on with my spine. I start physical therapy Monday, 3/28.

It seems when I am exhausted or stressed in any way my body targets my neck or knee. Just looking for some relief.

Hi Deb and hurt-n,

I blame any aches, pains, tingles, numbness, swellings etc on this disease now - right or wrong.  It is my thinking that if the spine is involved chances are there are going to be entire body issues which I suspect is how and/or why some Docs diagnose people with Fibromyalgia as well or instead of DISH. I was very interested to hear from hurt-n about the stress factor - a penny dropped for me because I am the same but I wasn't sure if the pain caused the stress or the stress caused the pain! No matter. The other thing I have noticed is that when I am about to have a pain worsening I get a hot flush through my body and I feel nauseated and emotional. That's when I know I have to stop what I am doing, no matter what it is. And , yes, somedays I get so tired of 'carrying' my chest and rib cage around I wish I could detach it. I also find I have to hold my head in my hands when I am leaning over paperwork or just by the end of the day. I have just had Xrays on my cervical spine which I suspect will reveal I have DISH there as well as lower in my spine. I have noticed my swallowing is becomming more affected now, though I did not know what was causing it - thought it was an 'age thing'. Thanks for putting all this up on this page, I am quite content to add all my little symptoms to the DISH list, rather than find I have a dozen different things wrong with my body 

i agree i am suffering in pain,  where do we find help? the pain is really really bad  there are 90 yr old  men and women that move better than i do ,i am 61 and been suffering for years, i spent 2yrs and nobdy knew anything until i went to another doctor and they gave it a name dish forestiers osterarthritis, this more than osterarthritis where to i find help???? cleveland ohio please don't say clinic  they didnt know  nothing  for 2 yrs .