Sorry I have been a little afk lately.

This disease I struggle with has me...well it just plain has me. I lack better words. Every time I think I've figured something out...it tosses me another curveball.


I went to the specialty hospital for cronic back and neck pain patients for the 4 day treatment program I got refered to a few weeks back. I had some hopes for it, as I had also finally just gotten a lower back MRI wich turned up a "big prolapse, that presses on the nerves in the spine".

When I was admitted there, it started with a visit to the responsible doctor for the program. It took a whole 3 minutes, during wich I told him about the mri, and he responded "that doesnt matter for this program". He didnt want to see the pictures or read the report.

Then we each got assigned a physical therapist to be our contact person for the stay, I saw him once or twice when he had a few joint sessions for all patients where we learned spine anatomy. The kind you learn in primary school. Kiddie stuff. Then had scheduled another meeting with him on the discharge day, for wich he called in sick and I got to talk with another one.

Turns out the program was designed to make people that had cronic back pain not be afraid of moving or using their back. This through these education sessions, and a mixed program of excercise and stretching. Wich completely missed 20 out of the 23 target patients, as the rest of were all of the type that had in no way held back in motion, work, spine usage or anything. More to the contrary most needed to learn how to not push it to far, we all agreed on.

They actually drive it so far as to say that regardless of diagnosis or damage, any pain we had were due to lack of motion, and their "new physical therapy theory" meant there is now no wrong way to sit, move, run, jump, fall or lift, anymore. Any way to move is the right way. Wich makes about perfect sence when they tell it to a girl in her early 20's in the program; She had fused ankle joints from early childhood years, due to operation for a birth defect. Absolutely no motion in the ankle joint, wich means in her work in a kindergarten, when whe tries to sit down on her knees to pick up a child, she rolls onto her toes and fall over. This means she has to do all lifting from a standing position, bending all the way over. That had "absolutely nothing" to do with her back pains, those were due to lack of motion.....

Well...all in all I got 4 days with a chance to do a lot of excersice and motion and the time to enjoy it. It even helped my pains for a week or two. I treasured that part, the rest was absolutely to dumb to believe.


My doctor whos response to the revelatgion of my prolapse has been "Despite you thinking it is part of the pains you have felt the last 2 years in you lower back, I doubt it", is a joy to treasure. Sciatic pains, lower back pain, numbness in my buttcheeks, periodic episodes of incontinence, and loss of sensation in one leg for a while....well its probably still all in my head, from what I understand. He "doubts it has anything to do with the incontinence". I mostly keep him for laughs now, and in the vain hope that I do get a definite diagnosis one day, that I can use to wreck his career so he never treats another patient this way.

My neck pains bother me, and my jaw does too. They sap the strenght out of me. And here's the latest curveball; I have had a nose infection the last year. I thought it was due to Sjogrens. I finally told him about it, he had one look and said it needed antibiotics. (It produces really sticky green goo mixed with blood.) I got a 10 day cure, during wich it vastly improved and was almost gone, but it did feel like it returned a bit during the last 2 days on the antibiotic. It did return for sure after finishing it. I told him, and "that sounded weird". And I have discovered that if I pick on it (I'm so so sorry for bringing it up, but it itches and I just have to some times) it actually directly leads to pain in my neck(!) Its like pushing a button for the pain in my neck. And it's in my nose...*sigh*


I had a small revelation myself. Here I have been listening to you all talking about stomach involvement and didnt think it involved me too much yet. How do I even begin to explain this...I got diagnosed anxiety at 20 years. They told me it was a freak kind that only presented with physical symptoms. They also told me nothing was wrong with my stomach based on an expanded blood test. I was however having huge stomach issues; A feeling of a sore or something in my throat for a long time, that made it hard to swallow. Stomach cramps, constipation...etc. Well, after the anxiety diagnosis, I knocked it off to anxiety and anxiety medicine sideeffects.

It, along with my anxiety burned out after a couple of years. Lately though I have had huge stomach issues again, (I've just been too used to thinking "only anxiety" to see it as an actual symptom, and then I remembered another thing; when I was in a treatment facility for my anxiety, we suddenly discovered I had lost a lot of weight. A lot. I was sickly thin. I thought back then that due to being plagued by anxiety, I must have forgotten to eat properly the months before being admitted. They actually chose the antidepressant I ended up with back then specifially due to it having a sideeffect of weight gain.

All that and actual ulcers in my mouth and even under my eyelid in the last months, has me wondering if it could have been Chrohn's disease all a long, undetected. I forced the GP to refer me to a GI for a Colonoscopy, I should have an appointent within the next 10 days or so.

Chrohns could be a diagnosis that fits actually. Its said to present itself a lot like AS, when it turns into Chrohns sacrolitis. It also can cause anxity (mhm...) vitamin deficency, anemia, dehydration, constipation, blockage, abcesses, skin disorders, diarrhea, neuropathy and a whole host of problems. I never get my hopes up anymore, I'm the guy that nothing shows up on tests for. Ever.

All I know is this:

I know somone dropped the ball somewhere in the treatment of me. I know it more sure than I know my own name.

I also know that I have severe back, neck, hip and jaw pains. Those are like someone decides to inflame those sections, and then everything hurts and gets stiff. Muscles there will thighten, I get cramps, and everything feels like its hurting; muscles, tendons, bone. When it's like that I cant stretch it away, move it away, rest it away. When it isnt like that, I can do anything. I cant figure out what starts flares or why.




I also have

Stomach issues (actually at times the whole stomach and even chest at times feel oversensitive and inflamed)

What I interpet as neuropathy signs (stinging pains in hands and feet).

My old friend the ear and balance problems from my jaw (including clicking noises from pressure alignement going on...all the time.)

Morning stiffness in the hip.

Now and then neck and jaw translates into the whole head hurting. Not as in a headache. As in the top and side of my head hurts to the touch.

No imaging of my neck still, despite it having been/being more painful than the lower back/hip ever was.

Dryness of throat, nose and even ears at times.


Bah....enough of this, I just needed to try and refocus myself.
Dont think I got there.

Wish I had been here more for you guys lately, but I just have felt so ....worn out.


Love
gilth

Ahh...I forgot one:

Antibiotics help my joint pain. It sounds screwed up but it does. Shame they dont give me any.

Bl..dy Norah Gilth - that is a disgrace. Sounds like someone has attended one of the big time rheumy meetings (ASAS/EULAR) and wrapped the knowledge gleaned right round their left ear...!

Suggest you write into the director of the hospital and put together a case for all the patients that were attending that tin of disintegrating worms - what a tide of utter abysmal ignorance.

Hi Gilth,
I hope that you don't excuse anything due to your anxiety. Please have it all checked out. You need to see a surgeon "who will" do a complete M.R.I. or your spine and anything else that hurt's. That finally put an end to all of my Dr.s speculations. Remember that you are the general contractor and they are your hire es. Insist, insist and insist. If you don't get what you want, call the office manager. I'm telling you this because I have went round and round and round with all of this clear down to the anxiety. I now feel in control more then I ever had of just laying down and suffering 24/7.

I think Dragonslayer is on the antibiotic program. PM him and ask him about it. Hope you feel better soon.

I had a disc at L-4 and L-5 fused and it took a year to fully recover but I am very glad that I did it because there is no pain there. It does however increase the chance for further fusions but if that is what it takes! This is no easy disease to have. It is constant work when you get up into the really complications of it. I wish I would have had more knowledge of it when first diagnosed. They knew nothing then.

Good grief! This is a worst case scenario for treatment. I hope you get some real help soon. Take care.

Sounds really tough what you have been through, sorry you have had so much trouble. Have you been to roadback.org or rheumatic .org there is a list of physicains called AP drs, Antibiotic Protocol dr's and they prescribe antibiotics long term for AS, RA fibro etc. They seem to be a compassionate experienced bunch and they help with diet too. At roadback.org you can get a list of nearby drs in your area.
There are many testimonials.

Another theory is when youhave an infection the immune system stops attacking joints/back while it is busy trying to get your sinuses better and your back and joints feel better because they are being attacked by your immune system. I know a few people who have said the same thing you have said that they feel better on antibiotics.

I hope you get feeling better whether your crohns test is pos or not. Take care Gilth

Yes. It is odd about antibiotics. Have been on antibiotics about five times in the past six years - infection after shoulder surgery x 2 lots. Cystitis x2. Pleurisy x1. Felt great on the antibiotics - never mind the rest...

Sheesh, can't invent this blasted disease. Sigh.

even without full blown crohn's, very common for those of us with spondy to have GI inflammation and "crohn's like ulcers"

my stepfather has crohn's and while i have my own health challenges, i do appreciate our GI differences. he had to have most of his small intestine removed due to the crohn's. i will never (most likely) have those kind of GI issues.

yet a stomach ulcer is a real possibility (both a family history of stomach cancer and ulcers as well as my own history of gastritis).

i guess my point is, even if it comes back negative for crohn's (which trust me, would be excellent news for you), it could still come back with inflammation especially in the illeum, which can cause these arthritis problems and other "autoimmune" related symptoms (the eyes, mouth, skin, etc)

as for doctors. i'll stick with one as long as we're trying new things. really do try to work with each one. but often they are the ones that send me on my way, they being frustrated that they have no idea how to help. but if the doctor doesn't send me on my way, and we're making no progress, then i have to take the initiative to find someone who is better able to help me. not always easy, and i haven't always done it the best, by far, but eventually it does pay off.

Seems like there are getting to be more and more of that kind of "treatment programme" that is focussed on dealing with psychological aspects rather than physical ones. I've heard a few people talk about places in the UK that are like that as well as knowing a couple who pretty much got forced to go to programmes (including one for fibromyalgia that ended up in a locked psych ward!). Fine if it really is a psych problem, but far too many people seem to be referred there not having had physical disease fully investigated. I got stuck with a neuropsychiatrist for a while who did her best to make me feel like a nutter when neurologists had failed to find anything neurological. At that point, in spite of nurses clearly seeing severe morning stiffness, me waking in pain in the middle of the night, and having a pretty bad episode of costochondritis, not one of them even considered a rheumatology problem.

often, people see only what they want to see. thus the potential downfall of putting together a hypothesis that one just won't let go of, even when all the data proves otherwise.

Sorry you are so worn out by all the issues and no great md guidance. Keep pushing, one never knows what lies around the next turn. May yours lead you to abit of wisdom and hope

Hang in there and just keep talking to the "white coats", maybe someone will put 2+2 together to finally get 4, instead of 22.

That doesn't sound weird at all. Just implies that your angry immune system is not completely imagining foes, but has some chronic infections driving it into battle mode... I suspect a number of so-called auto-immune diseases are really chronic infections of various sorts plus an immune system system that is not dealing well, resulting in plenty of "friendly fire" aka "collateral damage".

It certainly is a shame you haven't found doctors yet who are serious enough about investigating all the clues you are trying to give them!

just to add support to the idea:

first visit with my current rheumatologist, and the first thing he did was to look hard for underlying chronic infection.

for me, that doesn't seem to be the case. but it was the first thing he investigated.

This sounds like a nightmare. I can't believe that doctors can be so stupid. Keep hunting for answers. I do think that you need to follow up on the GI issues. I know that my UC and AS are connected.

gilth...first let me say that I'm sorry to hear you're having so many problems... My Mother had SLE(Lupus), Reynaud's and Sjogren's, she used to get blisters like you are describing, in her mouth and her eyelids, sometimes in her nose and throat, the corners of her mouth would crack too, her Rheumatologist said that it was the Sjogren's causing it, I get blisters in my mouth and on my tongue but mine is caused by the MTX, Folic Acid relieves that for me, I hope you can get things under control soon...big hugs,