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Old 02-26-2010, 09:47 PM   #1
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Tammy12571 HB User
Exclamation DISH Syndrome/Forestier's Disease

After seeing a total of 6 doctors (2 of them pain specialists), physical therapy, TENS units, facet injections, chiropractors (included in dr count), spinal decompression, medications up the ying-yang I was DONE! You couldn't stick a fork in me cuz I'd clean your clock cuz of the pain but, none the less, I was done. And, I'm only 39.

I went to my 7th doctor today but it was my 3rd pain specialist so I was in the mind set that I wil be darned to repeat things I had already done and if this doc was just going to throw meds down my throat and show me the door, I was then giving up. But, to my surprise, I had the doctor all to myself for a total of 60 minutes!!! He actually listened to me, we both looked at my x-rays and MRI's and he explained my situation and diagnosed me with DISH Syndrome/Forestier's Disease. I've been validated and don't feel like this is all in my head.

Unfortunately, the only therapy is anti-inflammatory medications. Has anyone else been diagnosed with this disease? Any treatments that worked for you or any home remedies to help with the pain??? Any of you on SSI/Disability?? Any feedback from those with this debilitating disease is welcome.

All the best to all of you!

 
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Old 03-21-2010, 11:07 AM   #2
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rand654 HB User
Question Re: DISH Syndrome/Forestier's Disease

New to the this. I was diagnosed about 3 years ago. I'm 58 and have lots of pain. Have experience it in my neck also. Have numbness in feet and also in my hands. The worst part of it in the last 6 monthes has been the pain in my nect and difficulty being so stiff in my neck. Tried the excercise did not work either. Also the only relief I have is from taking Melexacana which is simuliar to Naproxyn. Thinking about going for ssi disability. Seems very hard to get though. I need help having difficulty doing my job and setting for long periods of time. Any one can post something and give me some advice would be helpful.

Last edited by hb-mod; 09-09-2010 at 04:21 AM. Reason: Removed Quote. Please use "QUICK reply" rather than "QUOTE reply". Thanks!

 
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Old 03-22-2010, 08:54 AM   #3
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Tammy12571 HB User
Re: DISH Syndrome/Forestier's Disease

Randy~You have been diagnosed with DISH???? OMG, I am not alone!

I'm probably going to be filing for ssi disability soon.

If you have been diagnosed 3 years ago and only 58, how many years have your been in CHRONIC pain???? For myself, it has been 3 years. Thankfully, it is not involved my neck (according to 2 y/o x-rays) I have enough problems in my neck but I can't imagine what you are going thru.

I will have a Bone scan soon after insurance approves it and then to a rehumatologist friend of my PS for another opinion. My pain specialist suggested to go to YMCA and apply for a scolarship since I'm not working. He said to get involved in the water aerobics or anything in the water so, I"m going to give that a try. I will keep you updated on how that works for me.

Good luck to you Randy~

Last edited by Tammy12571; 03-22-2010 at 02:47 PM. Reason: additions

 
Old 08-25-2010, 11:38 PM   #4
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ukidding HB User
Re: DISH Syndrome/Forestier's Disease

I have it also. I am only 40, been through the whole same story and the pain is just about got me at the end of my rope. I have been all over the internet and askine every doctor friend that I know about this condition. Not many people have even hear of it. My problem didnt come up until I was involved in a head on accident, before that I dont think I saw a doctor three times my whole life. Now i see a doctor three times a month, sometimes three times a week.

So far the only thing I can offer you all is a report done in 2002 by the university of LA California (the mind is fuzzy from the meds-sorry). They did a study on four or five people. I have an email into them asking if they are currently looking for more study patients but have not heard back.

My search continues because I just cannot see this being the way the rest if my life is going to be. Keep the faith though it is tough.

 
Old 09-08-2010, 10:40 AM   #5
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Re: DISH Syndrome/Forestier's Disease

Hi Tammy and all who are dealing with DISH, just recently diagnosed, I am 58 dealing with chronic pain and lack of mobility for close to 6 years now. I like you have tried all the therapies that you listed but could add a few, acupuncture, hypnotherapy, yoga, Somatics, along with the typical meds prescribed for inflammation and pain. I really do not want to take pain medicine that just masks the pain. In the long run that can cause more harm than good.

I did get a lot out of two therapies Somatics and hypnotherapy, I don’t know if I would have if I had not explored both. What I learned from Somatics was the basic theory that my muscles due to being in varying degrees of constant pain had become voluntary as opposed to being involuntary. What I mean by that is my muscles where locked, constantly engaged trying to protect the area where the pain was generated from. As a result ,the muscles where fatigued, being constantly engaged, the muscles were not getting the proper blood flow, nutrients and rest. One example given would be as if someone dropped a firecracker behind you, once it exploded your natural reaction would be to tense up your muscles. Normally your would then release the tense muscles and but in my case my muscles were always engaged. Another term for this in the Somatic world is muscle amnesia, the muscles losing their ability to be involuntary. Once I wrapped my head around this I understood that although I had real back pain, by releasing the muscles that were locked I gained very noticeable mobility. The battle is to get your muscles to relax or disengage. They will continue to try to lock up, this is where the hypnotherapy has helped. In a few words Hypnotherapy is more or less a self relaxing program that I use to disengage the tense muscles. I can actually feel the muscles release as if it were water running down some stairs, it cascades down. All of the pain does not disappear but the pain is so much more localized that the rest of my back is pain free and movement is greatly improved.

In addition to what I described above, I stretch every morning, use heat, ice or both, particularly after engaging in any physical activity. I know that what I do and have learned to manage my condition is not a perfect but it has lifted my spirits and I feel that my efforts are improving my quality of life.

 
Old 09-08-2010, 10:22 PM   #6
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ukidding HB User
Thumbs up Re: DISH Syndrome/Forestier's Disease

That is what I am also attempting to so along with a very healthy diet. < edited >
I wish all of you the best of health and soon as this is no fun, but try to stay positive and stretch.

Last edited by hb-mod; 09-09-2010 at 04:20 AM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks!

 
Old 10-12-2010, 12:39 PM   #7
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Eestone51 HB User
Re: DISH Syndrome/Forestier's Disease

I have DISH Syndrome as well. Unfortunately, I can't take the antiflammatories because I am on Coumadin for blood clots in my lungs. I will be taking Coumadin for the rest of my life because the clots in my lungs was my third encounter with blood clots. It is very painful and is causing bone spurs on my fingers and my right foot. I also have fibromyalgia and herniated/bulging discs in my cervical, thoracic and lumbar spine. The thing I can take for it is Tylenol and Tramadol. I don't take the Tramadol that often because it makes me sick to my stomach as do all narcotics. Please share your experience with DISH Syndrome.

 
Old 10-12-2010, 08:19 PM   #8
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Re: DISH Syndrome/Forestier's Disease

[QUOTE=Eestone51;4344025]I have DISH Syndrome as well. Unfortunately, I can't take the antiflammatories because I am on Coumadin for blood clots in my lungs. I will be taking Coumadin for the rest of my life because the clots in my lungs was my third encounter with blood clots. It is very painful and is causing bone spurs on my fingers and my right foot. I also have fibromyalgia and herniated/bulging discs in my cervical, thoracic and lumbar spine. The thing I can take for it is Tylenol and Tramadol. I don't take the Tramadol that often because it makes me sick to my stomach as do all narcotics. Please share your experience with DISH Syndrome.[/QUOTE]
Eestone51,
you have a lot going on and all I can say is eating healthy and doing whatever exercise you can handle is about all you can do. Everyone I have talked to is in the same boat. I would do your research on you topics, I found that simple starches are not good for our condition. I have been taking vitamin D-3 and anti oxidants with walking. I am still in pain but "feel" a little better. It is not easy, but I force myself to keep moving by walking and stretching. In your case, run all of this by your doctor as I am not an M.D. and just passing on what I am doing. Research all of your symptoms and get with your doctor before taking any of them. Even natural products could have side affects in your case. I have bad migraines and also cannot do the anti inflammatory. The medical world knows about our condition but there isn't much in way of treatment. The other people I have spoken with are eating right and exercising to help. weight plays a big part in it as well.
I hope you find the mental strength to over come this. Best of luck

 
Old 10-13-2010, 10:44 AM   #9
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Eestone51 HB User
Re: DISH Syndrome/Forestier's Disease

[QUOTE=Tammy12571;4193885]After seeing a total of 6 doctors (2 of them pain specialists), physical therapy, TENS units, facet injections, chiropractors (included in dr count), spinal decompression, medications up the ying-yang I was DONE! You couldn't stick a fork in me cuz I'd clean your clock cuz of the pain but, none the less, I was done. And, I'm only 39.

I went to my 7th doctor today but it was my 3rd pain specialist so I was in the mind set that I wil be darned to repeat things I had already done and if this doc was just going to throw meds down my throat and show me the door, I was then giving up. But, to my surprise, I had the doctor all to myself for a total of 60 minutes!!! He actually listened to me, we both looked at my x-rays and MRI's and he explained my situation and diagnosed me with DISH Syndrome/Forestier's Disease. I've been validated and don't feel like this is all in my head.

Unfortunately, the only therapy is anti-inflammatory medications. Has anyone else been diagnosed with this disease? Any treatments that worked for you or any home remedies to help with the pain??? Any of you on SSI/Disability?? Any feedback from those with this debilitating disease is welcome.

All the best to all of you! [/QUOTE]
The only thing that helps me is rest. I can't take anti-inflammatories because I am on Coumadin. Sometimes the pain takes in my entire rib cage and up into my breast bone. I have several bone spurs in my thoracic spine and I am getting bone spurs on my fingers and one in my foot. Heat does help the thoracic area. I all ways feel better for about an hour after a hot shower. I wish I could offer more help. I have fibromyalgia as well and herniated discs in three areas of my spine. I have filed for SSI and have been turned down twice. We have requested a hearing.

 
Old 11-26-2010, 02:18 PM   #10
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Bemidjibrian HB User
Re: DISH Syndrome/Forestier's Disease

Hi Tammy, I was diagnosed with DISH in Jan 2010. After 2 cervical fusions, and lumbar fusions, 1999, 2005, 2006. I have been through the pain management aspect, drug pusher is all I can say to them. Many Dr. visits, and I can say Im sure there will be many more.

I continue to have constant pain in my neck and back, also in my arms and legs. I have very large bone spurs on both of my heals which will require surgery. I was seen last week by a podiatrist and he wants to do surgery, and I have been reluctant to schedule it yet.

Now, I was just diagnosed last week with having carpal tunnel in both arms, because of pain numbness in my hands and arms.

All of this is associated with DISH. The only temporary relief I get is going to the Heated therapy pool here were I live. I go 3 -4 days a week for an hour or more to keep my sanity and to exercise which is very important, both mentally and physically trying to keep everything moving.

I applied for Social Security Disability last year in October 2009, and was denied, and now wait for an administrative law judge hearing. I can't work because of the constant pain that I have.

Kindest Regards

 
Old 12-31-2010, 07:28 AM   #11
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janek123 HB User
Re: DISH Syndrome/Forestier's Disease

on the 5th i see my doctor. i hope something can be done about my feet. there are bone spurs that are making it uncomfortable to walk on when im bare footed . when i have shoes on . its not bad at all but i can still feel them . my doc refueses to give me any educational guess or any of the sort on when this disease with cause the ultimate and unavoidable end . he says he just doesnt know. i dont have any medication to slow it down cause he says it really wouldnt do anything at all. if its so advanced that the meds wont help then how could he not have some kind of idea on how long i have left. this doesnt seem to be a slow moving disease any more. the spurs show up more often and the ones i have are getting a little bigger. its frustrating. HOPE ALL OF YOU HAVE A VERY VERY SAFE AND HAPPY NEW YEAR. TAKE CARE

 
Old 04-18-2011, 11:56 PM   #12
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Katalli HB User
Re: DISH Syndrome/Forestier's Disease

[FONT="Century Gothic"][COLOR="Blue"]Hi...I am turning 40 next week and I have been in pain since a car accident in 2006 but was not diagnosed with DISH until another car accident in 2008 by of all people a Chiropractor. When I told a GP what the Chiro told me he laughed and said that there is no such thing, lose weight and all your problems will go away.

I was out of work for 3 months after the accident in 2006. I had injured my lower back and Physical Therapy worked for 2 hours then back to being in pain. I had lost my previous job due to the accident and I tried to work even with the pain but then the lack of mobility was no longer deniable. I thought about Disability long and hard, it was not a easy decision for me. It meant that I had to accept the fact that I can no longer take care of myself without some assistance let alone work. So I applied in 2008 and was denied in 2009, I appealed and was granted a hearing and lost again in 2010... and I had a lawyer. I reapplied in 2010 and was recently denied again. My lawyer is requesting another hearing. They told me I was limited but not completly disabled, I could to sedentary work. (Yeah maybe for a couple of hours on muscle relaxers and pain pills...gee I hope the work isn't important to get right with my brain being fuzzy and all!!!!) Sorry for that rant but I have been fighting doctors and Social Security Disability for awhile now and I am so frustrated Basically the hearing made me out to be a fat lying drug addict who just wants a pay check. Sooooo not the truth at all, well okay I am fat actually morbid obese but I worked for a living, I was independant, I didn't need someone to take care of me on a daily basis, I didn't have to rely on freaking pain pills (because I have bleeding ulcers which prohibit me from taking NSAIDS), I didn't have to burden my loved ones and friends to help me all the time, I had a life!!! I have no qualms that my weight has bearing on my pain but it is also not the cause of my pain nor will my pain and lack of mobility go away when I do lose weight, I will still have the very painful boney fungus that is keeping me awake at night like now at 2:30 in the morning!!!! There I go ranting again...

I have decided that I will go to Vocational Rehab and see just what job I "could" do. I will play their game and I will keep fighting because I know that I am not lazy or lying or a gosh darn drug addict!!!

[/COLOR][/FONT]

 
Old 05-12-2011, 01:29 PM   #13
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foreverleeds HB User
Re: DISH Syndrome/Forestier's Disease

Hi, after 5 doctors and nearly a year of pain was diagnosed with this only yesterday. Anti inflamatory tablets didnt touch it but got some pain patches from the hospital yesterday and could actually get through work today without taking tablets all day.

 
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