Living with Forestier's disease

Bones, joints and muscles
1

I have finally found info on Forestier's disease!!

When I was first diagnosed back in 1988 my doctor had no material on this subject. I was told to go home and find it on my computer, which I did. There was a researcher in Canada who hit the nail right on the head, Forestier's is no pick nick! He was so right!

When I was first diagnosed with the disease, I was in a lot of back pain. I had x-rays done and this article is correct....my vertebral area looked as if I were leaking wax. I saw all sorts of bony hooks hanging from each and every vertebrate and I was in a lot of pain; but my doctor at that time said I couldn't be in pain, as it wasn't painful??? On the contrary, the article I was told to research stated that there is a great deal of pain associated with the disease and eventually it would be crippling and that is where I am, 20 years later.

At the first time I was diagnosed, I didn't know that my choking could be associated with the disease itself, I thought it was just asthma...after all \"it isn't that bad.\" I was placed on many anti-inflammatory medications. I was place on one that I suddenly would loose my speech and get confused...I was told they might be TIA's. Later this particular drug was found to do just that. Since it wasn't helping, I was put on another anti-inflammatory and the doctor doubled the recommended dose and later I found that the sphincter muscle to my stomach and been burned away from too much of a good thing.

I was told not to see a chiropractor and for good reason! I had a complication from a surgery and they had to knock me out in order to go down my throat....while under someone turned my head further than I could myself and broke a facet in my neck; now I have plates in my neck and need more surgery....Once my neck was repaired, I didn't choke any longer. Right now, the disease has gotten so bad that I have many areas of stenosis and nerve root cut off. The neurosurgeon who performed my first neck surgery stated that every opening that allows the nerve roots to channel through my body was loaded with razor sharp spurs. This is just the spinal region of my body.

I am beginning to calcify at every ligament insertion site. I have bony over growth in my feet, which interfere with the articulation of my foot joints. I can feel the bones sticking out of my ankles and the tops of my feet; I'm beginning to fuse in my left foot. In three weeks I'm heading for a double knee replacement because my left knee can't support my knee cap; over growth of bone has pushed it away. It is getting more and more difficult to participate in daily activities as my range of motion is becoming limited. My elbows and my shoulders are affected as well...I can feel bony growth there as well. I'm losing feeling in my legs, as my nerves are being pinched; the pain shoots down to my feet and it is gripping. My hands can't grip a phone for any length of time.

I found if my pain can be controlled, I can function well, but too many doctors are not up on the pain this disease produces. Controlling the pain keeps me moving, and that is what you need to do, but the support isn't there for this. The disease is so rare that it is brushed off as regular osteoarthritis and it isn't, it's no where near the same.

I was diagnosed in my thirties and I have lived with chronic pain for over twenty years now. I was told that it affects mostly males over the age of 70....bunk! It is genetic, as my mother had it and wasn't properly diagnosed with the disease and my brother has it as well. My mother and I were deeply affected, she had it her feet as well and by the time she reached 70, she couldn't walk without crying in despair.

I had one doctor treat me with Suboxone and it was the only drug that gave me back the quality of life others enjoyed. He left for the north and I am back in severe pain once again. The problem with this disease, it's a square peg and everyone wants to fit into a round hole. I try to keep a smile on my face for my families sake, but the pain can be read all over my face. I'm still young, by today's standards and I just want to be a participant in this life, not stuck in some corner watching my life and the world go passed me.

2

Hi i was diagnosed about 15 to 20 years ago. I have been having cervical epidural injections for about 5 years which do help for a while as i only have 5% movement in my neck. I also get bad pain in my legs and the base of my spine and sometimes choke when eating but i dont get any response when i tell doctors, any suggestions. I was also told it does not run in families have you been told different. I would also like to know if you have had any advice about cutting down the calcium build-up. I have recently been told that i have a slipped disc which is not helping with the pain. How do you detect bony growths as i have been told anything about this but i have noticed changes to the shape of me in certain areas. many thanks roy

3

Hi, I have been struggling to be diagnosed with this horrible disease .Finally after years of being told it just bone spurs and once they fuse it will be pain free. Well its still continuing and I have just had two Mri scans and the doctors and radiologist were amazed at the extent of damage to my spine. My throat troubles me the most, eating is becoming a chore and I am on mostly muchy food. The muscle spasms are worst ot night time. I feel lucky to be able to chat to someone else who knows what im talking about . Do you know the outcome for us is it wheelchair or paralisis?????

Thanks for sharing

Melissa

4

Hi i was diagnosed about 20 years ago when i was in my thirties i am now 56. Was the drug Suboxone any good and what are you on now. I am on amytriptaline, tramadol, and arthrotec but all they do is take the edge off. Regards Roy

5

I have been diagnosed with Dish today,have been told had flat feet then just getting old,then Fibromyalgia then poss Parkinsons disease,now have answer after years of pain and suffering,feel I am finished as can only get worse but must carry on somehow,not sure if would be able to get benefits if have to pack up work.

Regards Steve

6

I AM A 72 YEAR OLD FEMALE WHO HAS JUST BEEN DIAGNOSED WITH DISH. I AM DEPRESSED THINKING ABOUT THE FUTURE WITH THIS DISEASE. ALREADY I TAKE TRAMADOL AND ALEVE BUT I ALWAYS HAVE PAIN IN MY BACK AND NECK AND A LOT OF STIFFNESS. IS THERE ANY ALTERNATIVE TREATMENT FOR THIS DISEASE, SOMETHING BESIDES BEING TREATED BY STRONG DRUGS THAT HAVE BAD SIDE EFFECTS? THERE IS NO SUPPORT FOR THIS DISEASE, MY PRMARY CARE DR. TOLD ME THAT HE HAD NEVER EVEN HEARD OF IT.

7

When I was diagnosed at 42 5 years ago now it has done nothing but progress . My doctor told me that there was no cure and it is hereditary . I know stretching helps , as much exercise as your capable . Keeping your weight as close to normal as you can . Regular massages and chiropractic adjustments if you prefer or both if you can afford it . Narcotics did not help me so I just take glucosamine ( although I read it's not very effective on this particular arthritis ) but I've been taking it anyway and I think it's helping , some kind of inflammatory whether it be over counter or prescription . A friend of mine swears that B12 helps in mega doses . I do all these things and have a hot tub in my back yard , all of which help but I still experience substantial pain . Good luck

8

I'm a male and I just turned 71. I have had this disease for many years, but was only diagnosed with it in 2004. My son has it and both my dad and his dad had it. They have tried everything from massage to pills on me, with only minimal relief. I have gad to force myself to get up and go and keep busy. They told me back years ago I'd be in a Wheelchair by now, but I refuse. Once I was 6' 6" tall, but with the disease causing my head to bend over Forward, I'm only at a little over 6'. The muscle spasms at night are the worse. They keep me up most nights. I have to sit on the side of the bed and rock back and forth. But, there has been some good news for me!! There has been a great deal of controversy lately about the health effects of cannabis. They have been using the non-psychoactive part, CBD, to treat a great number of diseases. Some of them include diseases that cause muscle spasms, which caught my eye. I had the opportunity to try some of this oil and I'm sold on the fact that it worked for me. I got a good nights sleep. Something that I don't experience very often. Until the laws change though, I'm not able to get it. Too bad as it worked well.

9

I have been recently diagnosed with forestiers disease. So far it only affects my thoracic spine and involves simply upper back pain, so I am lucky so far.

The literature so far provides no direct clue to the disease but it apparently is related to calcification of muscle, tendon and ligaments. It is connected to other disease pathologies which also appear to linked to the mineral calcium and possibly an imbalance/shortage with magnesium.

Diabetes Mellitis

High Blood Pressure

Arteriosclerosis

Elevated heart rate

Has there been any studies regarding this avenue of pathology or treatment?

10

Dan, I have been taking magnesium for over 6 years now. I don't know if it helps or not. They told me that since this is a rare/orphan disease, not much study is being done. They still don't know what causes it, nor is there a cure. I've had to push myself to keep going. If I slow down at all, I stiffen up and it takes a great deal of effort to get that mobility back. I have been taking 4.5mg of Naltrexone, a medication usually given in much larger doses to treat drug overdose in the ER. My Doctor started treating her MS patients with it for the spasms with success so started me on it. I've been on it for about 4 years and it has helped some. I don't know if any of this has helped you or answered any of your questions. I'm here if you want to respond.

11

Hi. I have DISH and according to my X-rays I have bone growth between the vertebra of my spine from my neck to my pelvis. I also have heel spurs in my left foot and severe Achilles tendonitis in the back of the heel. More importantly, I have a bone growth on my sitbone! The pain specialist I saw yesterday didn't even know what to think! He has never seen anything like that in the 35 years he has been a doctor. The extra bone growth on my sitbone makes it feel like I am sitting on a ball. It is painful and uncomfortable and makes driving for long periods difficult. Has anyone else experienced pain in the sitbone area?

12

I sysmpathise Helen. I also have diagnosed Forestier's Disease also combined with bronchiectasis and spinal stenosis. Mine started in 1983 but know one knew what it was. My Consultantb was a wonderful man and with a brilliant mind he said one day something will come out of the woodwork" Forestier's proclaimed itself in 1996!. I stayed with my Consultant when he moved to another hosptial 300 miles away and have recently trasfered to another great guy in his mould upon his retirement. Although the neuro surgeons are looking at my scans as I write this I know that little if anything can be done as with bron bronchiectasis surgery would be very risky.

I am kept going with Morhpine patchs and other opiate drugs which work reasonably well and can be adjusted as required.  I also have epidurals which are brilliant. My physio also said she had not seen this for 35 years like the other writer. I have the misfortune to live in an area where the pain clinic do not answer the telephone or return messages. I ended up paying for the last epidural and knee injections. When folk say that doctors do not  understand the disease they are correct very few GPs  have ever heard of it mine had not and has been on a steep learning curve with me ever since.The pain you describe is not uncoomon i'm afraid.The only way I survice is to keep moving around and not staying in the same postion for long periods of time. Little or no research is being done into Forestier's as they have said it's an orphan disease so who would bother.Heel spurs also common I have them very painful.   We ought to try somehow to set up our own web site, I dont know how we do that I am not IT minded but it looks as if it would prove useful. I might be able to get some consultants on board that's what's needed.  Hope this helps a little.

13

Hi

I was told I had DISH about 3 years ago I am 55 now. I have the butrans patches and although they are not taking all the pain it is just about bare able most of the time. there are times when it is so bad I just want to stay in bed with the blankets over my head. I agree there is no understanding from the docs they have probably read the bumf on the internet that mostly says it just make new bone and no other symtoms. I went to the docs today and she says it may also be fibromyalgia (another one to add to the list!!!!!) I get so worn out I find it difficult to move but then when I do move I cant as I have stiffened up!!!!!!!I know that this has been coming on most of my life I have always been unwell every other week was anyone else like this??????

The last research was 2004 I think which says basically the same as the rest!!!!!!! 

 

14

Wendy I have been there too,to see my thoughts I have done basic web page have a look heading is steves perspective type in address bar at top of page http://dish-explained.weebly.com button for pages in top left corner Steve

15

HI there, there is a fantastic Face Book page on D.I.S.H lots of people with it, and heaps of information etc. One page is for research and the other just people with DISH comparing and talking about it.. I would recommend you find that..

Good luck with your D.I.S.H its a horrid thing to have.

16

Dont give up hope just yet.There is research being done linked in with similar diseases although not much in the UK. Go on You Tube you will find a lecture there by a well know US Doctor you will find it very interesting takes about 25 minutes. They call it Fybromyalgia due to the symptoms you exhibit but I know of 4 people diagnosed with Fibromyalgia who have gone on to develope Dish and there is a reson for this which as explained to me by a top Consultant after a while the body realises something is wrong and wants to put in an immune response. Not knowing what to do it respond by growing bone everywhere and this is very painful.This is not well recorded but it is what I hace been told. Mine started 31 years ago and has for all practical purposes wiped me out. But to just have to soldier on the best you can.  I dont blame the GPs mine tells me he learns a lot from me and is waiting for another paitient to present with this problem when he will know what it is all about.

17

Hi Wally0 , would you put a link here for the D.I.S.H. facebook page. I tried looking it up on facebook and all I get is the dish network and food pages.

18

By the looks on my phone is says.

FORESTIERS/DISH -Diffuse Idiopathic Skeletal Hyperostosis

you can only get the the research sight by being added to that group, as its a closed sight..

I hope that helps, if not I might have to add you.

 

19

I have been diagnosed with DISH disease too.  I feel for you!!   I wish there was a good holistic doctor to see.  Be well, Dave

 

20

Hi Dave

Just wondering how old you are?

I'm scheduled for radiofrequency ablation on the 28th of May

Has anybody heard this helps and how long does it last

Thanks

Paul..,