Hi Steve. I loved your spoons story. It's a good way to try and explain things. I have FM so my energy can vary daily if not hourly! Some days I can start with a lot of spoons and be very positive and they can last the day, but equally I can use them up more quickly than I anticipated. DISH sounds very painful and yes having to slow ones pace is a true test of patience. I've just had major surgery on my feet so have had to learn the art of patience in yet a different way and for another four months probably. Interesting learning though! All the best. VJ
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steve
4/10/2014 06:40:24 pm
VJ sorry to here you are struggling,I use most of my spoons up before each day is up,thanks for your comments and all the best for the future Steve
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lee08086
5/1/2014 05:17:46 am
Steve,
Thanks for your reply via the patients forum. I have had this wretched disease for many years now and to say it is difficult is to put it mildly.
I have done a great deal of research with the help of one or two top Professors and Consultants. Much more to be learnt in America where there is research going on. I can try and write something for you when time permits it might be of interest. Lee
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steve
5/1/2014 06:17:18 am
Thanks Lee,hope you found some help from site,anything you write would be of interest to me here in UK.
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Wendy Johnson
8/29/2018 10:27:27 am
Lee, have you found out anything new since you posted on Steve's Perspective page? Sounds like you were doing research with some professors and consultants, and I'm wondering if that resulted in anything. I am suffering, as are most people with DISH, and no one knows what to do. I wish we could all come together somehow - get someone to promote this so we can have more research done.
Wendy
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Carolyn Gerrish
5/3/2014 04:27:28 pm
I went 7 yrs ago for chest X-ray which was fine but was told I had Forestiers disease. The doctor had never heard of it. I have coped but these past few months I am in constant pain in my spine.I am seeing my GP this week so have found your info helpful as I can go armed with info on this disease.
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steve
5/3/2014 05:02:50 pm
Carolyn glad you found info helpful,all the best with the Dr,I have found that once drs know what they are dealing with they are very helpful,my Dr has to refer to condition as AS as dish or foresters is not on their computerized system even though it is different condition.
Regards Steve please let me know how you get on
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Pam Hansen
5/6/2014 01:17:01 pm
Hi Steve, great web sight.. Do you ever go on Face Book,, there is a great sight on there for people with DISH, there is also a sister sight with research about DISH..Its a fantastic sight and the people there have DISH so everyone knows how you feel etc.
We need more people to understand about DISH and how painful it is, and not just wear and tear..
I have had pains for over 20 years but only last year diagnosed with DISH and my doctor seemed to just dismiss what the raidioligist said.
Pam
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steve
5/6/2014 02:41:50 pm
Hi Pam yes I am on those pages on Facebook forums,I have had similar experiences with Dr so frustrating you begin to do it yourself,all the best Steve
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Wendy S. Johnson
8/29/2018 10:29:12 am
Pam, I cannot find the DISH group on facebook, and I so desperately need to connect with others who have this wretched disease. It is so isolating, and I am struggling to find a new normal. If you can point me in the right direction to get on their facebook page that would be great. Thanks!
Wendy
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Steven Armillotto
3/16/2021 04:00:42 pm
On Facebook Go to FORESTIERS/DISH SUPPORT great site good folks and so interesting stuff!
Teri
5/7/2014 01:54:28 pm
Thanks for this info......Doctors can be very ignorant about DISH....so it's up to all of us to educate them. :)
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steve
5/8/2014 10:33:06 pm
I think most drs are very good ,just they have no idea what dish is at first,we are all on a constant learning curve,all the best Teri thanks for comments
Nice to hear from you Chevalier,merci for your remarks Steve
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Dee
6/12/2014 10:28:06 pm
Thanks for doing this, we need to get the word out.
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steve
6/12/2014 10:46:46 pm
Thanks for comments Dee as pages state just the way I feel Steve
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Addie
7/19/2014 02:19:28 am
Steve, thank you so much for putting up this site. I just got a DISH diagnosis and found very little online in layman's terms that I could understand. Finally I found the UK patient forum and saw your post there. I agree so much about the occupational therapy! About 15 years ago I was diagnosed with degenerative disc disease (which now docs say is DISH) and at the time I had some great OT sessions. I still hear the therapist's voice daily as I go about household, office, and outdoor motions. Moving and bending the right way can save us a lot of pain.
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steve
7/19/2014 02:41:07 am
Addie sorry to here you have this terrible complaint,thanks for comments if just one person gets some help from info then I am happy,I have thought about starting a D.I.S.H charity but after what I have discovered seems too difficult for me to handle,especially not being well,any comments are welcome as it is difficult to find fellow dishers in UK regards Steve
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Chad
2/12/2015 07:33:08 pm
Hi Steve, thanks for taking the time to put a website together. I am 40 years old and have been diagnosed recently. I have found coming by information quite difficult and its frustrating that there appears no specialist medical profession that deals with the complications of the disease. I am under a pain clinic at present and can only find pain relief from a combination of high dose anti inflammatories and morphine patches. Both of which pose risks with long term use. I was interested to hear others have similar levels of pain, I appear lucky in that it is restricted to my spine at present though I am only young so it looks like I have a long road ahead.....
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Steve
2/21/2015 11:55:32 pm
Hi Chad sorry I haven't replied earlier,sorry you have this dreadful disease also,I have only really got bad over last couple of years but looking back at events think I had it coming on for at least ten years,everyone is different,two years ago I was taking people underground for miles in an old slate mine,now I can hardly walk,have to use crutches and am in pain every step but hope I can halt process and stay as I am,need to keep mobile otherwise will be in wheelchair regards Steve
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Phil
2/21/2015 08:53:06 pm
Hi Steve,
Congratulations on your web site - I have been diagnosed with DISH after many years of complaining about the symptoms.
It would be great to have a UK focus on treatments available as the USA do things a bit different to us!
Have you thought about running a simple questionnaire on your site regarding the treatment available and experiences of living with DISH throughout the UK?
Knowledge is power as they say.
Best wishes,
Phil.
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steve
2/21/2015 11:46:43 pm
Hi Phil glad you found site helpful,I will add page about treatment feelings etc thanks for the thought,I have found only pain relief helps,what's pain for one may not be to another,hard to quantify
Regards Steve
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Cheryl
4/23/2015 08:27:29 am
Hi, My friend was diadnosed with D.I.S.H. last year and is also in U.K. Southern England. He has osteophytes on his spine all along the throat area and chokes every time he eats, we have recently changed his diet to mostly pureed, and are seeking surgery but as the osteophytes are extremely large and on all five of the vertebrae in his throat the surgeon seems reluctant to do decompression surgery, we are waiting with baited breath as the only other option will eventually be a feeding tube. He is only 45 :(
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steve
4/23/2015 03:42:49 pm
Hi Cheryl sorry to hear of you're friends plight with this terrible condition and so young as well,here in the UK I believe we have best drs surgeons etc besides what you here I'm sure everything possible will be done Steve
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Adele
4/26/2015 07:48:42 am
Hi thanks for putting the site together, it's very useful. I was diagnosed 2 months ago now feeling a lot of back pain and feel exhausted sometimes I'm 56, these symptoms have got worse over the last year. I'm waiting on NHS X-ray results as found out about this through a chiropractor. I'm reading all I can about it - only thing I found about eradicating excessive calcium deposits in body was taking cider vinegar and honey ??? Anybody tried that?
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steve
4/26/2015 10:50:36 pm
Hi Adele,a lot of info doesn't always apply,doesn't cause pain etc,I have found there is a lot of Pain so don't go by what's on web only you know how it affects you,I would of thought could have told you straight away about x rays,I was informed there and then,try to keep positive and do what you can,all the best Steve
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Fran
7/10/2015 11:42:52 am
Thank you so much Steve for responding to my post on Patient. I have found this very helpful.
Hi Fran glad you found this site helpful I have tried to keep it really simple instead of being bombarded with jargon you can't understand Steve.
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Tiffany
7/22/2015 01:39:02 pm
Aloha Steve,
After suffering for over 15 years, and many misdiagnosis, I have been given the official word it is DISH. I have been dx with fibro about 5 years ago. As a critical care nurse I am having trouble with the lack of resources not only for pts but health care professionals as well. Have any of your blood tests come positive for HLA B27 or any markers? What meds for pain have you tried? What has worked? I find your site extremely helpful and easy to navigate. Thank you for letting us know we are not alone!
Tiffany
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steve
7/23/2015 01:03:32 am
Hi Tiffany sorry to hear you have joined us,as a nurse you know you are not putting it on,you know it hurts,all things which you've probably been told don't happen,it sounds like you're journey with this condition is very similar to mine.
My blood tests always came back negative,I've had all pain meds possible,am on morphine now,don't like taking it but only thing that helps,it doesn't take pain away just makes it more manageable,or perhaps dulls you're awareness to pain and unfortunately everything else,its affected my mental health also trying to cope and accept I can longer work,do all the things he I used to,to adjust to a new life in effect.You perhaps have a head start in someways as you know people to contact,who can help you,what not to do etc,please keep in touch and I wish you all the best,remember to be selfish,you know what I mean Steve
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Elizabeth
8/28/2015 09:32:06 pm
Hi steve , I was just diagnosed with dish at the age of 42 as a health care worker I am scared to death of what this might lead to. does anyone know if they are working on a treatment or a cure for it. I also noticed every time I eat lately I have phlegm in the back of my throat. Have you read anywhere if dish could cause that. There has to be someone out there that knows how to treat this.
elizabeth
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steve
8/28/2015 11:30:45 pm
Hi Elizabeth welcome to the stiffs as we are sometimes called,most of research seems to be being done in U.S.A but no doubt someone may be working behind the scene in U.K.
One of the complications which can occur is Dysphagia which basically means difficult swallowing,with people with D.I.S.H keeping it simple the bones in you're throat become calcified pressing on you're oesophagos causing hoarse voice cough trouble eating,the good news is this can be operated on if needed but usually doesn't get that bad.
I would have a word with you're Dr as they are not familiar with dish so may not associate throat problem with it.
I personally have noticed my voice going hoarser and get cough and breathless more.Hope this may explain things a little Steve
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Phil
8/29/2015 10:54:43 pm
Hi Elizabeth,
Thought I would share my thoughts to see if they can help or at least give you another opinion.
As you know DISH or Forestier's Disease was only officially recognised in 1997.Looking back, my signs and symptoms were probably affecting me a little while before this. I have osteophytes all the way from C1 in the neck all the way down to the base of my spine also with hip impingement.
I am luck that my local Rheumatology Consultant is fully aware of DISH, but my GP did not have a clue - even after he was sent the diagnosis.
So what did she say - well on the negative side there was no cure - on the positive side there are things which can help us to manage the condition, but please remember everyone is different and what works for one person will not work for another.
For myself, hydrotherapy made a real difference - even as opposed to land based physio. Gentle every day exercise, such as walking, also helps. In terms of drugs Amitriptyline taken night helps with sleep,but other than that panadol and ibuprofen help.
Another treatment is the use of a TENS machine which helps to block the nerve signals in the muscles and has certainly helped me with the spasms. You can get these through your local NHS Physio team.
I do get a hoarse voice and phlegm build up but have found that plenty of clear fluids help.
The one thing I feel would be useful in managing the condition is to have the progression of the disease measured regularly. From what I understand the rate of progression is different for everyone.
I wish you all the best and sometimes the little change we make and have a positive change in living with DISH.
Phil.
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steve
8/30/2015 12:01:24 am
Thanks for you're feedback Phil its nice to get someone else's take on things.
I also have oesteophytes all the way down my spine,I have found only thing that helps me is morphine,doesn't take pain away just makes it more manageable,if I can keep perfectly still it helps but of course that's the last thing you should do as you need to keep mobile,I can't go swimming,hydrotherapy as I can't wash or dress myself,as Phil said you need to be monitored by you're GP,it usually progresses slowly but everyone is different regards Steve
Phil
9/25/2015 07:39:28 am
Hi everyone - looks like I was tempting fate in my reply to Elizabeth. I have had an exacerbation with a noticeable change in my throat, particularly with swallowing and speech.
I have been reading about Lyrica (Pregablin) and wondered if anyone here has had any experience of this drug?
Thanks.
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Pamela
10/5/2015 01:34:11 am
Hi Phil,
I started Lyrica for my Fibromyalgia, and ended up gaining 30lbs in just a couple of months...and it did nothing for my pain. Stopped taking that and started Cymbalta with much better results. No weight gain and was able to lose what I gained with the Lyrica.
I was recently diagnosed with Trigeminal Neuralgia, and my Dr. wanted to put me on Lyrica again but I refused. I'm taking Tegretol instead, an anti-spasmodic. It doesn't help the DISH at all, so not sure if the pre-gablin will help you or not. Gabapentin is another option and doesn't cause the weight gain either.
Hope this helps a bit...take care and all the best to you healthwise!
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Phil
10/5/2015 10:01:18 am
Hi Pamela,
Thank you for your reply - some good information there.
I found hydrotherapy was really useful but was limited to only 6 sessions on the NHS. Also TENS helps with the spasms particularly in the lower back.
Best wishes.
Phil.
Pamela
10/5/2015 01:38:52 am
Hi Steve,
Thanks for this page. I've just found the Facebook group as well. I'm in Canada and was diagnosed with DISH in Feb. of 2014. I've had Fibro and Osteoarthritis for many years, along with some other pain and health issues. My diagnosis came as a surprise after a trip to the ER for chest pain and jaw pain. After ruling out a heart attack, and doing many tests, etc., a CT scan came back showing DISH. The Dr. gave me info he found on the Mayo Clinic website, but it's good to see other people's perspectives on having this.
Sending out good health wishes to you...I know your pain!
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steve
10/6/2015 12:25:56 am
Hi Pamela glad you found info helpful,its nice to see others getting involved I:e comments from Phil etc this condition can be so cruel and hard to cope with,I found swimming helpful in the early stages as it helps the whole body but as I have got worse can no longer go,I've tried all types of pain meds only thing that helps to some extent is morphine,not everyone would be comfortable taking it.
I've found that I have pains everywhere not just joints,have felt I'm having heart attacks,have broken a bone,pulled muscles,it is terrible,the only way I can describe how I feel is to say,imagine how you feel if you have a bad toothache and a bad bout of flu at the same time,that's how I feel all the time.
Because you may look fine people think there's nothing wrong with you,even though you are hurting inwardly.
Sorry to rant on,hope you find what's best for you try everything
Steve
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Phil
10/6/2015 09:49:32 am
HI Steve,
I am sorry to hear about the extent of your pain, and I hope you don't mind me asking but as a qualified RGN, I do get wound up about people getting the best care they can receive.
Have you had the chance to speak to your local pain management team? I was referred by my rheumatologist and there were a range of options offered to me by the whole pain team not just medics but also therapists.
Just a thought.
Phil.
steve
10/6/2015 10:22:26 am
Hi Phil thanks for you're input,yes I've been to pain management by therapists didn't help me but of course every possible therapy should be examined as some may help a particular person,I've tried most as I've been an alternative therapist in the past.
Regards Steve
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Nigel
3/9/2016 01:41:29 am
I had no idea, Steve. Thank you for the info. Assuring you of my ongoing support, Nigel
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steve
3/9/2016 02:20:50 am
Thanks for comment Nigel,I try to keep positive there's a lot worse off Steve.
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Thelma
4/20/2016 09:10:36 pm
Ugh! I just found out that I have D.I.S.H. I'm feeling upset with my Dr. Because I had a x-ray in February and was just told today. I did get him to agree to a MRI. My back is already fused at several levels. I'm being to wonder what I have to look forward to as I get older!
Is there a Facebook support group?
Thank you for your website:-)
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steve
4/21/2016 01:00:28 am
Hi Thelma sorry to here you have joined us,keep positive once you're Dr knows what they are dealing with I'm sure you will get all the support.
Go on Facebook and just type in D.I.S.H or Foresters disease and you will find what you're looking for,as I said on these pages don't always believe what you read,you are the only one who knows how you feel.
Regards Steve
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Bonnie
5/7/2016 04:44:04 pm
Thanks so much for creating this sight.
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stephen
5/8/2016 12:25:13 am
Thanks Bonny hope you have found site useful Steve
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Dave
9/30/2016 02:13:43 pm
Hi I was diagnosed with dish two weeks ago after being told by two consultants that it was just muscular so I paid to see a top consultant who diagnosed me with dish after four years of agony I'm taking shortec and it does help the pain with amtriptyline hpe this is of some use good luck to all of you
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Syeve
10/1/2016 12:58:11 am
Hi Dave unfortunately this seems to happen a lot,I always felt I was not being believed just a hypochondriac attitude,
You feel absolutely terrible can hardly move and don't know what's wrong, you're at you're wits end.
Looking at the positive you can now move on knowing the outcome, all the best for the future Steve
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Nancy Johnson
11/12/2016 05:15:01 pm
I was just diagnosed with DISH. The past 6mo. Have been challenging. Now I am just plain from afraid for the rest of my life. I am searching for information about what is going on with my body. Thanks for the start!
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Steve
11/13/2016 04:01:46 am
Hi Nancy glad the info here has helped in someway,it can be daunting when you're not sure what's wrong with yourself or don't know what to do etc,as you can see from comments everyone is helpful with advice.
If we can help in some way we will,keep positive Steve.
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Cindy Dewey
1/25/2017 04:21:44 pm
Thank you, thank you, Steve. I printed some of your explanations of how I feel physically and a page or two of the technical stuff they may need at the spine clinic next week. My GP didn't find my diagnosis, my nurse practitioner did!
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Steve
1/26/2017 03:22:18 am
Hi Cindy glad web page was helpful,I tried to keep things simple as I found technical words etc just boggled my mind.
I write as I speak so may come across as basic don't hesitate to get back in touch Steve
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Pauline Mottram
3/5/2017 03:40:51 pm
Thank you for creating this site - there is so much very helpful information and reading other folks journeys is enlightening. My GP told me my diagnosis over the phone at 7.30 on Friday. She is highly intuitive and sent me for an xray after a bout of excruciating pain, thinking I might have a wedge fracture of the spine/osteoporosis. She openly admitted that she had not heard of Forestiers before and had to look it up! She's referred me for MRI and to Orthopaedics. I had an MRI 2years ago and it showed 'normal wear and tear' of the spine etc....I was surprised that my GP was even sending me for an xray and I was expecting more of the same - its your age, 'normal' degeneration etc and dreading dragging myself to appointments where physios boisterously tell me to 'move it or loose it'. Given that a MRI didn't pick anything up two years ago - presumably I have a comparatively recent onset - or maybe the Radiologist of the previous MRI didn't know what s/he was looking at? Its taking me a while to get my head round the diagnosis and part of me keeps wondering if it is just a chaotic NHS mix-up!! I've spent the weekend trying to find info and ploughing through variously informed articles and websites and looking up medical and anatomical terms. I have found this site to be the clearest, simplest, most comprehensive and most accessible - thank you Steve.
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Steve
3/5/2017 10:30:37 pm
Hi Pauline thanks for comments glad to have been of some help.
Don't think I would have being told diagnosis over phone but after you're other remarks sounds like you have good relations with you're doctor.
As you have seen from others experiences most of us seem to have gone through similar.
It's a vicious circle keep positive Steve
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Wendy S. Johnson
4/11/2017 08:44:57 am
Steve, I can't thank you enough for this page. I was dx'd with DISH 1 1/2 yrs ago, and I am only now coming to terms with it. I am finding a new normal, which sucks, but I know it's necessary. Part of that is trying to find a way to explain to friends how much my life has changed, and how I have to pick and choose what I do just so I can still go to work (which I love and it keeps me sane) and not stay in bed all day because of the pain. The spoons story is PERFECT! It gives a true picture of what we face....every single day. I am still amazed at how many websites (Mayo Clinic included) make DISH sound like it's really no big deal.....little to no pain, etc etc. Really? Maybe that is true for some people, but the ones that are posting on most sites are in extreme pain. Me included. Wish there was a local support group, but this disease is too rare. Anyhow, thanks again for your site....you made my day!!!!!
Wendy
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Steve
5/21/2017 02:02:21 pm
Sorry I haven't replied before Wendy,didn't get notification for some reason,think we have all had it doesn't hurt,there's nothing wrong with you attitude at some stage.
You know what its like,why would we all say we are in pain .Thanks for kind words Steve
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Angela Hodgkins
1/15/2020 07:53:21 am
Hi Steve found your website to be both helpful and informative thank you
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Stephen
1/15/2020 08:10:20 am
Thanks Angela hope you have got something from page regards Steve
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Wendy Johnson
2/15/2020 08:21:05 am
Steve, I am starting a website for DISH as well. I specifically want to have a place where we can see where we all are located in the hopes of being able to better connect. Possibly even have some meet-ups - what an encouragement it would be to meet other DISHies in person!! Was wondering if you're ok if I put a link on my site to yours?
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Steve
2/15/2020 08:30:23 am
Wendy yes have no problem with that anyone who gets any help in any way I'm delighted
Steve
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Sally Smith
4/11/2020 03:19:53 am
Hi Steve, the spoons story is great! I pace myself like this and hadn't even realised I was doing it. I will remember, and next time someone mutters at me for not being able to do something the spoons will be coming out :)
Steve, my website is finally up and running! I included a link to your page. Check it out at www.dishdisease.support
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Stephen Smith
8/18/2020 06:59:17 am
Great Wendy thank you
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Steven Armillotto
3/16/2021 03:54:04 pm
Love the spoon story! I printed it for my wife ,cuz she looks at me sometimes...like I have more spoons in my back pocket! So much to do and so few spoons! Thanks!
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Steve
3/17/2021 01:03:47 am
Glad you like spoon story .
I've tried to keep everything simple so not blinded by jargon.
Did this page a few years ago now where does time go,?
Regards Steve.
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Katherine Claudson
9/19/2021 04:40:35 pm
Hi, Steve, I was just diagnosed, and I am anxious to learn. Is aquatic exercise good for DISH? Where do you find physical therapists who know how to help with this condition?? Any ideas will be welcome!
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Steve
9/19/2021 11:17:58 pm
Hi Katheline I'm in the UK so hard to advise
As I don't know where you are
In general swimming is an all round exercise which may
help,the problem comes whenn you can no longer dry or dress yourself,do anything while you can to keep mobile
you will know your own limit.
Ask around for a therapist,not many are familiar with
Our problems,if you find one helpful all the better
Try anything that may help,I have found physical therapy
Ike energetic exercise,chiropractic,physio,forms of manipulation bad for me,things like meditation,hypnosis,
Etc good.
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RAY
10/23/2022 10:58:27 am
Very thankful to come across this platform and group of individuals that contribute.
My story began a few months ago after being seen by a very bright ortho surgeon/ professor after experiencing trauma to my back from an accident at 59 yrs old.
I suppose the good thing is getting an accurate diagnosis right way, from imaging results having DISH( not having to search for a proper diagnosis as others have experienced )
The things I wrestle with right now are:
- patience from my back surgery healing , overcoming an infection
- patience from a very active physical life style, to a modified one
- being told I should not ride a trail bike anymore( high risk of paralysis )
- having to modify my physical work as a HVAC service tech, and keeping my customers through all this
Good things:
- being able to still be somewhat physically active
- not experiencing pain that others talk about
- having a positive outlook on life, and a sense of humor
- looking forward to spending the rest of my time wisely and thoughtfully on things that matter to me in life, and not waste energy on worry
- having a supportive family
Looking forward to my new life.
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Emily
12/9/2022 07:47:44 pm
Thank you so much for creating this website.
I was diagnosed with D.I.S.H. in my thoracic spine last year, shortly before I turned 40. I have gotten limited help at the pain clinics I have been referred to. Some don't think that I should be in any pain. Even though I have a compression fracture in my T11. Others acknowledge that my condition is beyond the scope of their practice but nobody seems to know who to send me to.
I was referred to an orthopedic surgeon but I was afraid to go because they had 5 successful complaints lodged against them with the College of Physicians and Surgeons and are not allowed to conduct procedures unattended. I feel so afraid and so ashamed because sometimes doctors can be really, really mean.
I am so sorry that you and everyone who has commented on this site has to go through this level of pain and uncertainty.
I want to thank you, Steve, very much. Reading your website makes me feel that I am not alone and that I am not imagining my disability. I want to thank everyone else for their wonderful, insightful comments. I think I can stop crying for the evening because of all of you. I have something I didn't have a couple of hours ago because of you; hope.
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S smith
12/10/2022 12:02:03 am
Hi Emily glad page was of help,keep moving and positive
It's hard at times I've been suicidal with pain etc.
There are a lot worse off,keep telling yourself that.
Steve
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Stephen
12/10/2022 12:06:20 am
I apologise if I haven't replied people,it's been a long time
Since I did page.
See Ray was one,hope you are all coping.
For some reason I don't get notified if anyone posts on page now.
Steve
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Cynthia Richardson
2/5/2023 01:02:17 pm
Any chance u can reverse date order…
Appears old site as starts at 2014…
Many may not scroll to the bottom.
Friend went to emergency for severe Back pain after taking OTC meds & what RX we could help with & finally prescription: ie (Tylenol, Advil, Lidicaine Patches, Ibruphrofen, Vicodin, oxycodone, Tramodol, Robaxin) Nothing helps for long…
The BLESSING is the did a CT scan (noted DISH) but discovered Acute Pancreatitis.
What we don’t know is did 2 months of taking meds before going to emergency???
…Cause the Pancreatitis & gut issues that got worse over 2 months of taking meds or pre-existing & incidentally found…???
Either way; now dealing with Pancreatitis with radiating back pain AND DISH symptoms in upper back including difficulty swallowing and riding in a car.
Of note; many medical sites correlate obesity & diabesity to DISH risk.
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Sreve smith
2/5/2023 08:03:14 pm
Hi Cynthia will try and sort page out know it's getting old.
Pray you get things sorted.
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ELeF
2/13/2023 02:47:26 pm
Cynthia, I am very, very sorry for what you are going through.
I do have faith that you will find a practitioner to help you. I will be thinking of you. You will be in my prayers
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ELeF
2/13/2023 02:45:00 pm
Sorry to be a bother again.
Just wondering if anybody lives in Canada and knows about a D.I.S.H. specialist here.
I keep tearing tendons, I have dish bulges throughout my spine, plus aforementioned compression fracture. My hands and feet go numb and my fingers curl inwards like talons. I have tendinosis and tendons caught in the D.I.S.H. I cannot get anybody to take me seriously. Partly because I have PTSD and I believe they think I am exaggerating. I can't even get anyone to give me injections at a pain clinic. I am going downhill mentally very fast.
If anybody knows of a physiatrist or DISH specialist in Canada, it would be much appreciated.
Reply
Stephen Smith
2/13/2023 07:27:22 pm
Hi Elef I am actually in Wales in the UK,hopefully somebody will reply there.
STEVE
Hi Steve
Just been diagnosed last week and trying to find out what to expect. I am 68 years old and have headaches for a couple of months. My doctor thought there was nothing wrong with my head and said it was my neck that was causing the problem. He ordered an X-Ray and then he was told it was DISH. He is sending me for physio and I hope that helps It obviously affects people in different ways. The most frustrating thing is reading on websites that this disease causes no pain as that is all I feel One thing that seems to give me a little relief is heat applied to my neck and head It's good to hear from other dishes
best wishes to you all
Chris
Reply
Steve
5/10/2023 12:33:19 am
Hi Chris only just read your post,I dont get reminders anymore.
Sorry you have DISH you will have to adapt,change the way you do things,see what treatments suit you,we are all different
I've found heat helps me,I've also found over the years I've developed other conditions,I feel these things are all related I didn't perhaps look after myself in younger years as well as I should have,even though ive always been very active,some which are catching up with me now.
I hope these small bits of info are of help regards Steve.