Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Diffuse Idopathic Skeletal Hyperostiois

Beloved,
Diffuse Idopathic Skeletal Hyperostis

That’s the conclusion, DISH / with Fibromyalgia. They, because I have seen three doctors, but the question I did not ask, was: “have you ever treated someone with A.S? Because they said the same thing, “usually someone is more fused than you are fused”.
Because I am so stiff, and do get somewhat better when I exercise, it can not be AS.

I do think they have the ido..right. There are a few times I feel a bit stir crazy, with delusions of being successful and making something of my self with I grow up.
Along with the mild psychosis and the nearly constant effort to grandise my ability to sway thinkers; I am fit to be tied.

Since I do have a prescription for Vicodine and muscle relaxers and my liver has been affected, they do not want to do anything more. At least for now. I also remember hearing the the phrase; “since you are still able to work!” I did get a prescript for a “lidoderm patch.
I am a bit put out. I am so tired, but I feel far worse if I do not exercise. I may as well be miserable at work, than to stay home. Rather than helping us stay working, doctors seem to punish us since we can work. There are so many days I wonder, is today the day I can’t get dressed? Is today the day I will have to admit I can’t do this any more?
I guess I just wanted to gripe. Some of you are far worse off, and I do respect your fortitude!!!

You know, I think I feel better already. Too bad, I don’t have any chest hairs to burn……

Without your love, I am not sure how lost I would be.
Lighting Lonnie

aww Lonnie. Hang in there.
I realy dont understand the no/little fusing= no AS
Everything I read on AS says people are often misdiagnosed with something else as fusing occurs later in the desease.

I have signs of fusion starting but no actual fusion as of yet and both my doctor and my rheumy say I definately have AS.
Another thing I have notice in everything I read and again what my rheumy says is that with typical AS, you are stiff in the morning but feel better from a little light exercise/movement.

Either way it doesnt realy matter what you call it AS or not. The issue is having it treated and by the looks of it thats not happening. Fingers crossed things will get better for you mate.
take care

Aussie,
Hi.
Yea, kind of a bummer.
What is a guy to do?
I think I will save my money and just stick with the local physicians..

How are you? I saw your post last week, I do hope you make some progress and things work out for you..

It does seem as though quite a few people do not have vast amounts of fusing...

Lon

i thought that was typical for AS.

but sorry you are not doing so well right now. even if you don't think your physical pain is as bad as others, if it bothers you and is getting you down, then there is no reason to compare it to others, unless that makes you feel better. it is yours and it is bothering you, that is enough reason to try to find ways of minimizing the pain and recharging the soul.

i know what you mean about "if you are well enough to work, you must not be that bad." some of my doctors understand the importance of helping me feel better so i can be more productive in my life, work and otherwise. others had to see me out of work for essentially 6 months this past fall and winter before they got it. thankfully for me it was temporary, for so many it is not. now i'm back to being able to manage once again. i was lucky this was a sabbatical year where i could get some work done at home or i would have had to take short term disability, so i just very very lucky, as this was my first sabbatical ever.

lidocaine patches. when i asked my rheumy for flector patches, he insisted i use lidocaine patches. they did nothing for me. but then i asked the GP for flector patches and he obliged. for me, its my SI that nothing else seems to touch. and when i say nothing, i mean the ice and heat and LDN aren't enough (NSAIDs do help it but can't take them and doctors won't prescribe anything else), and the ice does actually help, but using ice 24/7 is rather inconvenient if i want to actually leave the house and have any kind of a life. but if i wear a flector patch over the SI (where the spine enters the pelvis, top part of the SI) pretty much 24/7, changing them every 12 hours, taking them off when i bath or shower, well, my SI is now a much happier camper.

you talk not only about the pain, but how it is getting to you. this fall it was really really getting to me. if it had been longer, i'm sure i would have been making my way to a psychiatrist's office for help. please if its too much for you to handle, that's what psychiatrists and psychologists are for. i think its especially important for those of us in service where we're always meeting the needs of others to take care of our needs: physical, mental, emotional, spiritual. when we are so busy taking care of others' needs, we need someone to help us with ours.

Hey Lon..

Wow that's a mouthful, and I thought I would never learn to spell Ankylosing Spondylitis... So you can't have AS because you aren't fused enough? Well I guess I better pack my bags too then, since mine is officially psoratic spondylitis the last time I looked and most of my fusing was done by a surgeon.

Isn't is great how docs relate pain to whether you can work or not? Not to how the pain effects your life on a daily basis or what we have to go through to drag our carcasses out of bed every morning. What a crock!! I heard that so many times, and then when the day did come that I had to pull the plug some asked why? Man, am I glad to have those docs in the past.

By the by...How many channels can you get on your DISH?

Love ya Brother!

Hey Lon,

I too am wondering this for sometime, i read some artciles which differenietes both AS & DISH, there are more similiar systoms then difference and over a long period this can be found. Here in India, i am not able to get much info on DISH, but here are some of the materials which i have gather on the internet:

Diffuse idiopathic skeletal hyperostosis (DISH): a retrospective analysis
http://www.springerlink.com/content/33248g464135184g/?p=123047cc3812413fa8b3483535653e3d&pi=5

Diffuse idiopathic skeletal hyperostosis: Differentiation from ankylosing spondylitis
http://www.springerlink.com/content/9h765m7p683n351t/

Coexisting diffuse idiopathic skeletal hyperostosis and ankylosing spondylitis
http://www.springerlink.com/content/k775u837w1123utg/

Diffuse Idiopathic Skeletal Hyperostosis (DISH; ankylosing hyperostosis; Forestier’s disease)
http://www.springerlink.com/content/h212298145j17442/?p=e0950eb34a754c6197f2d098e7fb3cc1&pi=26


Case Study
http://www.hopkins-arthritis.org/physician-corner/case-rounds/case4/4_case.html

Case Study
DISH and ankylosing spondylitis. Case report and review of the literature.
http://www.ncbi.nlm.nih.gov/pubmed/2289330

Generalized Skeletal Abnormalities
http://www.springerlink.com/content/v01h1m68k8152383/?p=e0950eb34a754c6197f2d098e7fb3cc1&pi=24

If any of you have been taking any treatment for DISH pls let know on the option and suggestions.

thank you for such a thorough literature list,
quite helpful,

sister Sue,
Thanks for the note!
The muscle relaxer and patch seem to make me so much worse.
I would rather have the constant pain, than this up and down stuff.
I am determined to get this thing off my back.
Ice may take some pain away, but I do get so stiff from it! I will ask about the flector patch..
Both doctors ask what hurts most, I say my lower back has not let up for nearly 50 years. They just shake their head. Because I can still move they seem confused..

Thanks
Lon

Hey Chris,
I can't get a single channel on my DISH!! wise guy, you are...
You seem to have the same experience. I think next time I will just make up somthing and act like they should know all about it!!!
We have had lots and lots of rain and hail today.
I think my matters are over..... Lon is sad.
Thanks for writing.

I saw a huge buck this last winter,he was in town!

Thanks chris!
Lighting Lonnie

Manju,
thank you so much!
I will be reading this stuff!

Please also, send me some of your symptoms and how it can upon you, if you care to do that.....

After I read more, I hope to ask you osme questions as well as compare notes ...
thanks again!

Your brother in pain,
Lon