I just like to let others know about my experience. When my Rheum diagnosed me he just did the pressure points. No x rays.
Well i recently went to new pain doctor and the PA ordered x rays which has now shown i have severe
AS or for short spondylitis. It is an autoimmune disease of mainly your spine but can affect other areas.
I mainly have severe pain in my hips and for many, many years have had pain in neck area of my spine. I also years ago severely damaged a disc in my lower back and just thought any pain back there was due to it or just getting older.
So instead of and /or i also have now this disease which treatment is completely different than fibro and can explain why fibro drugs do not help me.
There are few diseases out there that are very similar to fibro. So getting x ray is easy enough...i ask your doctor to x ray if your shoulders and / or hips hurt you.
There is genetic test for this disease.
I just hate for others to suffer years like i have and now realize that we could have been treating this and slowed down the progression of the disease. Now most of my back is involved and possibly my hips. No reversing it. This is 2nd huge error that same Rheum made on me.
I just hope maybe i can prevent others from same mistake by telling other my story.
Oh siskiya, my heart goes out to you on this one! I have Psoriatic Arthritis, there are 4 types, I have the Spondylitis type, which of course is the very worst kind as it targets the spinal cord.
The latest and greatest thing I have been given for it, that helps numb me so that I can ride in a car is Ethyl Chloride spray. I was told to use it sparingly, he used to have his nurse spray me with this, then when he found out that I have my husband and Mom here to spray me, he brought my Mom back and the nurse taught her how to spray me. It numbs you for a few hours!
It took me 7 years to get this diagnosis, which is currently the average time, before the biologics like Enbrel came out the average time for a diagnosis was 35 years. He said people suffered terribly!
Oh Siskiya, this is such a shame! SK has spoken of the same problem and late diagnosis of this UGLY illness. I can't understand how or why a doctor would neglect to do a simple x-ray on your back when you first present with pain there. I mean, how could he rule out fractures as well as spondilitis?
I'm so sorry that you're stuck with the fall out of your rheumy's lousy medical care. But you are doing a wonderful service by telling others about spondilitis, just as SK has, so they know to look into it as a possible reason for their pain. But I do have a question for you: do you have spondilitis AND fibro...or the spondilitis alone? You're right, the symptoms for a lot of the auto-immune illnesses are very similar.
Thank you, Siskiya, for sharing your story. I hope that you can get proper treatment now, and hopefully some pain reduction. And meds to keep it from getting any worse. Bless you, girl.
Siskiya, I am very happy for you on one hand but not so happy on the other. You must feel a great sense of relief after all of meds failing to work. Now you can be treated properly for what you actually have. I wish that each one on here could find an actual diagnosis other than fibromyalgia so all could find an effective treatment. On the other hand I know that AS is no picnic. Hopefully providers will quickly get you going on some effective meds.
Actually, i realized that not sure if i do not have both. Guess only a really decent rheum will be able to tell. Pain could be radiating from the spine to my hips and my shoulders are damaged and need surgery.
Thanks for your kind words... It would be nice to only have one or the other but hope not both. I have enough auto immune diseases to keep me busy as it is already. thanks again
My nephew has your disease and i wrote him immediately as he does medical research in our areas plus most autoimmune diseases.
I use him if the science gets over my head but most the time since i was planning on being Vet so had lot of science in College as far as i could get...well helps me understand it pretty well. I am going to write down that spray plus i know TENS units can help with me....just i have it both at my neck down and from tail bone and possibly hips up to mid...just a bit in middle is not affected. I am getting MRI to see how damaged my spine is. I know that stacking wood hurt and bending over just thought it was me getting older lol!
Siskiya, also so sorry for improper diag. I too, as Petunia, am wondering if you have more then one auto immune disease. Here's to hoping you will get relief with different meds!
My Dr diag. me about 2 yrs ago with Fibro----I have arthritis all over my body also. When I recently had this terrible flaire up after my Dr got the results back from the blood test, she suggested I go to a rhematologist. What would they do differently then she has done ?????? Wondering if anyone has had that experience and if so or know anything educational you can add, I'd appreciate the input.
I have tried the TENS over and over, by different Doctors and therapists, and I just CANNOT tolerate it, on the lowest setting, it shoots me off the table. The Pain management shots only ever made me worse, so I am much more limited than I ever cared to be!
It seems by the time they have confirmation of this, the damage has to be there to be seen, so it's an after the fact diagnosis!
I understand everyone's fear of narcotics, I fought my GP for years on taking them on a regular schedule, though he kept prescribing them that way, and against my will it is turning out to be exactly what I feared, I need them every day, to be able to lay my body down to sleep, and just function with the basics. He knew all along that it would come to this.
I've said it before, I'm in the 'whatever works club', and have learned not to say 'NEVER"!!
SK, it is impossible to say NEVER when you deal with that kind of pain. You have to look at it that you would not have been able to function at all if you had not had narcotics. You may be much worse off if you had not had them. Moving is the one thing that keeps us going.
One of our county doc's had her patients take "narcotics vacations". A break from the narcotics, accompanied by valium and assumably little movement for a period of time. Titrating completely off of narcotics, this break allows the body a respite so that the patient can start back up again at a lower dose, but effective again. Sounds like &%)), but was her method of not allowing patients to climb all the way to the top of narcotic dosages.
I know that in the future I will be back on this ladder. It's inevedible. Whatever works.
Jeez that suc...stinks. I hope you don't have fibro on top of the spondilyitis. What a rotten thing to find out that you have, though. I'm really sorry, Siskiya. The only up side to this is that there are people on here who also have it who can help you with some questions you have about it.
My Rheum just recently told me that he thought the fibro was the cause of my Fibromyalgia, and that he knows it caused me pain, it is nothing compared to the arthritis! What a comfort that was! ha! I want honesty though, so I'm getting it!