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

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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

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  • Posted

    Hi Jen, I was about 40 when this started for me. I am now 49 and they are still fighting over what to call it and what to do. I have a new doctor and she is really helpful, if she doesn't know she sends me to another specialist to have his opinion. I also would like to no my outcome, the pain is getting worse in my throat, muscle spasm are terrible so I take valium at night. I feel like im being choked all the time it really doesn't go away. My spine is a mess and nerve damage is affecting my hip down to my knee on the right side. All I am doing is researching all the time. I spent a fortune on alternative medicine , snd that didn't help at all.My chiro is great and relieves the pain for a few days when im having a bad episode .Not much to look forward to in the way of treatment I have been told.

    I hope to travel this year and next year for several months, I am very concerned how it will go, but will try anyway. I struggle with my weight and I try to keep that in check.

    All the best Jenni

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  • Posted

    I have no idea how long ago this started but at 58 It has finally been diagnosed. It is frightening in some ways and motivating in others. I do know this has been a slow growing issue for me as the pain has existed for a very long time. Ibuprofin and excedrin have been my primary pain killers of choice to this point. My first bone spurs were on my spine in 1998, now its on 5 thoracic vertebrae.

    I suspect for many people this has been very aggressive and for others a slow progression.

    Mellissa, what type of alternative medicine did you try? Traditional Chinese medicine, acupuncture, herbal treatment or ayurvedic? Apparently western medicine hasn't been useful either. I'm curious as to the types of herbs or combinations of things that other people have tried. What helped, what didn't. Did it slow the progression?

    At least for the moment, I am considering the question of vitamin mineral imbalances may have occurred among those of us who suffer from it. Is there a connection between calcium and magnesium that needs to be explored? At least for now my goal is to stay as active as possible so that I can enjoy as much as I possibly can. I have started a regimen of taking magnesium supplements on a daily basis, until I find it worthwhile or not. My understanding is that a magnesium imbalance is involved in high blood pressure, tachycardia, and other physical issues.

    DR ordered no, scientifically based no, but studying the effects of calcifying ligaments and tendons leaves me thinking it is no worse than taking valium or some of the other heavy duty drugs they treat it with.

    Do your homework and see what works or doesn't work for you. Listen to your doctor. If you want to try some thing discuss it with them and get their input on any options you are considering. Your DR is the medical expert, hopefully he can hel you find what works for you.

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  • Posted

    I have just been informed by a new Doctor today that I have DISH. Reading all the forms i don't see a great future. I'm only 52 yrs old. I have been dealing with this and spasms for 6 yrs prior and seen so many spine & neuro doctors before, but just now being told. There's hardly any information for this. I just wonder if I would have had a neck fusion before it got this bad would it had help. My entire neck is fused with bone spurs on the front and rear of my to equal the size of the orginal vertabra. Yes, that's twice the size of a normal neck. I'm being told that there is noting they can do even though the pain is unbearable!! I can only turn my head by C1 & C2, its now in my back, shoulders, fingers and hips. There was one recommendation and that was to possibly have surgery and have the bones removed at the back of my neck to allow my head to raise up, but probably should wait until I start having tingling or numbness in my hand and legs or can't swallow. I wonder why you have to be in critical shape? I really appreciate this form to know I'm not alone and it's informative. Exercise does seem to help loosen it up, but the jarring from it makes it inflammed. The constant snap, crackle, grind and pop for relief seem to no longer work. I tried decompression for 10 months, physical thearphy for 3 years, injections for a year, neuro electro, you name it medications and end with hydrocodone, that works, but for how long. Any idea on how to get some sort of life out of this with out losing you mind? 

     

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    • Posted

      The reason they don't want to do surgery is because the spurs will grow back twice as fast after a surgery. Good luck and wishes for the best you can do with what you've got. I believe I already lost my mind over this horrible disease. I just have a bottle of Champagne and a hydrocodone evey evening and start all over the next day hoping it hasn't gotten too much worse.....Debbi
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    • Posted

      Deborah,

      You appear to been dealing with this for some time now. Since your neck is totally fuse, i was just curious as when you were going through the neck self fusion process was this a terrible ordeal as mine currently is? It almost seem as if I can feel the fusion as it happens. This is when I get the most pain. I get about three days of this, then  three days of somewhat peace with drugs,  then constant spasms and neck cramps along with a variety of different head pains. 

      Was there any issues with C6/T1 pain, chest pain and back pain associated with this? Reason being I keep thinking heart attack and they keep telling me a bad spasms. Didn't spasms could be that darn painful!!

      I have an appointment with a Neuro Surgeon to see if he can relieve some of the nerve pain. Not sure if this is a good idea, but the pain is unbearable! Open for suggestion from anyone who has.

      I noticed no one has mention sleeping issues. Can you lay on the pillow without the neck and shoulders feeling like a big sore and or stabbing?

      The spasms appear to be escalating. Any ideas on without the heavy drugs and drowsiness? 

      I have noticed that vitamin Do does help tremendously.  Found mine to be low.

      It appears that since I work at a computer I'm being told by the doctor this is contributing to the progression as well. So I guess it won't be long and I'll have no job. What do you do when you can't do anything? Things that make you go hummm!

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    • Posted

      EAS- There's only one choice. Take the pain pills or not. I take as little as possible to make life bearable because I am well aware that the government will make them impossible to get in a short few years and I don't want to go through withdrawls plus pain. They already just reclasified the hydrocodone so that we must see the Dr. every month for refills. I am at the computer a lot as well. I find getting up every 20 minutes and walking helps. As for sleeping, buy the time I have drank a bottle of champagne and taken my pain pill and a xanax, I can pas out just fine. Yes I wake all night long in pain in the neck and nightmares from the drugs and I'm quite drowsey in the am for about an hour, but that is the best that it gets. I'm sorry I don't have better news for you. It's one of lifes really unfair rhings that we have this disease.
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    • Posted

      Have you tried value for the spasms. They work really well but can be addictive.  I only take them when the spasms are scaring me with pain

       Alcohol and drugs don't mix, you will feel so crappy the next day/week.

      If you can keep moving you don't seize up. After long stints driving, I get out of the car like 100 year old woman.  I'm off all drugs especially opiates. They were just poisoning me. I can no longer take orally any anti inflammatory drugs, they have ulcerated my  oesophagus and caused major stomach problems. I take Ended with helps with nerve pain and sleep and depression

      The pain seems to ease once the spurs have fused, I'm as stiff as a board but am still positive about my life. It's sh*tty but at least we live near medical help unlike many countries.  

      Fix your head, mind and heart and life will get more peaceful.  Xx 

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    • Posted

      Melissa,

      Thank you for the information. I'm blessed regardless of my current situation,  but we all know the flesh is weak. I just get with the term "nothing can be done". I guess if I had to figure the odds, stopping the stabbing from bone pricking to the nerve to generating back quicker, base on the pain level from the pricking I'll have to go with the surgery. 

      Not trying to be a knuckle head, but what is a life without life. I now tomorrow is not promised, but it's really hard looking down the road. I know I'm preaching to the choir. A lot of the readers are in worse shape than myself, but mine is no panic either. 

      I'll take the advise and keep moving, exercising as much as I can, take the meds til I can't anymore, try not to fall or get in an accident, keep my vitamin D up to level. But most of all I'll keep PRAYING that one day there is a cure for this dreadful disease. I'll keep updating my status being positive or negative.

      ALL KEEP YOU HEAD AND CONTINUE PRESSING FORWARD THROUGH THIS LIFE. REMEMBER IT'S NOT OVER UNTIL IT'S OVER!!

      YOU ALL REAL KEEP ME UP LIFTED AND I AM SO GREATFUL !! Thanks

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    • Posted

      Hi. Don't know how old you are or what country you are in, but I have to disagree about alcohol and drugs not mixing. I am 62 and retired and in the USA, and if alcohol and drugs is the only way to stop the horendous pain I feel by 4pm everyday, I'll just deal with the one hour of liightheadedness in the morning. I still do my walking every day and go shopping and cook meals, but most other pleasures in life are in my past. I do my best to remain positive about life but the reality is, this is only going to get worse and not one single person is working on a cure.

      Sorry to be a Debbi downer today,. I just woke up in a lot of pain. Getting a new mattress next week and that will be very helpful. Really wish I could find a good Hypnotist in my area. That would help with the pain. Good day to you all.

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    • Posted

      HI

      I have just found out that I have this disease and can tell you that no matter what find the time to spend with your family, do whatever you like to do and make the most of it.

      I have been battling for two years thinking that i was just having normal aches and pains, but imagine my suprise when they started testing and xraying etc  My bone scan lit up like a xmas tree, I have spurs in over 85% of my body, I cant swallow properly, my voice has deepened and has become very hoars, it upsets me when someone rings and asks to speak to the lady of the house when they already are and get tole I sound like a man!  My forestiers (dish) is not genetic so am trying to gauge other peoples ideas as to what can also cause it,  I believe it maybe hormonal and that steroids over the years have increased the effect, any ideas?

       

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  • Posted

    So sorry Jenni. You are so yong. I didn't get diagnosed with DISH until my mid 40's. It was not too bad for about 10 years. I was able to do most everything I wanted to do up until I was 60. Now in the last 2 years my whole body has changed into a solid painful fused skeliton. It's getting harder to get into a car and drive when I can't bend or twist my neck head or back. Tennis shoes are hurting my feet when I do my walking. My right arm can no longer grip and lift the weight to work out. At this rate I will either wake up one day frozen straight or freeze up in a chair. Neither of which is acceptable to me. If I didn't have a great husband and wonderful inlaws, and a son with a new baby in my life, I would have already checked out. All I can say is go do everything you ever dreamed of doing right now befor it's too late cuz there is no cure and no one is working on a cure. Best of luck and good wishes to you on your journey. Debbi
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  • Posted

    I hear that it's not a good idea to have the spurs remove due to the rapid regrowth. Can't find any info regarding this information. 

    Is there a link regarding this anyone can provide that I can look up? Or do this typically come from the doctor themselves. Is this in regards to any spinal bone surgery or just D.I.S.H?

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