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#494086 08/31/13 09:31 PM
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Sonia38 Offline OP
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Went for my second physio,she said there is two discs at the bottom of my spine which are worn,but shouldn't be giving me pain that I say I'm having! She couldn't find anything wrong with the top of my neck,this is where I'm having problems especially with headaches and tingling,she made me feel like I was making it up! I come from there and could of cried,the only helpful thing she said was that she could work on my planter fascilitis. The other thing she mentioned was that I don't have a lot of range when I'm turning side to side in my back,or when I'm bending forward. Do these people think we like pain,just because I didn't scream out in pain when she was moving me around,I did say when it hurt,but I have a high pain threshold,I think we just get used to the pain! She said I need to set my self goals and do things to help myself ,the cheek! Do you think I should ask the doctor for an mri,would that show more than what the X-ray did,I can't believe I can have this pain in my joints and not be anything wrong. Sorry for the long post,need to vent!!

Sonia38 #494102 09/01/13 10:20 AM
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Very_Addicted_to_AS_Kickin
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Sonia38 - Yes. Ask for an MRI. Need a full MRI: Coronal Sagittal STIR tau-1, tau-2, fat supressional - and lots of slices (views). Is expensive that's why far too many rheumies hold back on the MRIs. BTW, will need to be a rheumy. A GP cannot order up MRI for lower part of body ! SO, go see yr rheumy.

The 'fulll' works MRI will show up the inflammatory areas which an X-Ray cant do. Also, an X-R can only show up damage to bone, like SIs which only very slowly become damaged, mebbe several years down the line. Waste of time doing an X-R.

A nuclear scintagraphy will show up inflammation - I lit up like a C'mas tree. But it was the full blast MRI yhat gae me my diagnosis some 10 years down the line...

If you go to the spondylitis research forum here, and check out the papers on MRI you can read up on all the detail of the whys etc. Your physio should have known bbetter. Suggestion, give a good scream next time yes


MollyC1i - Riding OutAS
Sonia38 #494105 09/01/13 10:41 AM
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Hi Sonia,
So to hear what you went through.
I fully understand See my post "broke down at the doctors"
The medical profession can't even agree how much role damaged disc play as far as pain goes, yet these people think they can say without question that you shouldn't be in that much pain.

Note to all medical staff (doctors, physio etc) if this many people are in this much pain and all have similar issues then just perhaps there is something really going on. Just a thought but I highly doubt you could ever get more random group of people all telling the same story.

I think what I have learnt from my experience is to trust yourself, only you know what your pain is like.
Take care


Sonia38 #494110 09/01/13 11:52 AM
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Very_Addicted_to_AS_Kickin
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Sonia - go to the following thread, have just posted up several useful links, all under the same ASAS/EULAR heading. Check them all out. Then have a word with your GP, then referrel to a rheumatologist specialising in AS who should be on the ball. OK :-

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=494109&#Post494109


MollyC1i - Riding OutAS
Sonia38 #494118 09/01/13 05:05 PM
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Very_Addicted_to_AS_Kickin
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I'd probably find another physio if I were you.

My two big problems are my SI joint and my neck. But not a lot of damage shows in the imaging.

But I now have doctors and a chiro who believe my pain, appreciate how hard I work to feel as good as I can, and work to relieve my symptoms, using their skill set.

I went to a (water) PT who tried to convince me I was "just out of shape". I kept trying to explain what was wrong with me, but she wouldn't listen. After 3(?) visits, she flared pretty much everything on me. So had to quit. It took several months to recover from that PT.

And yet, in the past, PTs (and now this chiro) have been my true heroes at how much they have helped me.

Give your physio one more try, but if you don't get the respect and care you need, find another physio.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Sonia38 #494135 09/01/13 07:48 PM
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It would be interesting to know what was written in the referral to the physio, and whether the physio had any specialist knowledge of AS - I had pretty much the same kind of sessions, and it was really because the physio had basically been told that there was no evidence of inflammatory arthritis and I just had osteo. She therefore assumed that the reason I was so stiff was because I had let myself go and wasn't exercising enough, and that the reason I couldn't walk properly was because I had got dependent on using crutches (yeah, right - would I really be using them if I could walk properly?).

I'd give up on the physio (unless she really can do something for the plantar fasciitis). Download the exercise booklet from the NASS site and do as much as you can, as often as you can of those exercises - particularly things like making sure you take all your joints (including your spine) to the fullest range of movement (without hurting yourself) that you can every day. I don't (can't) do all the exercises, but I do make sure I stretch my spine in all directions (sideways bending, forwards, neck movements, etc) as far as it will easily go, and also pay attention to my shoulders and arm stretches. I also force myself to move around the house as much as I can first thing in the morning or if I get really stiff, because it really does help to keep moving.

Yes, you do need an MRI. If your rheumatologist hasn't done this, then you should really insist on it because they haven't done a full assessment for spondyloarthritis without it - ask them about "axial spondylitis" - as thats the diagnosis that you can get in the UK if you show up inflammation on MRI, but don't show the required damage on SI xray. For them to check for axial spondylitis they have to do at least a lumbar and SI xray, and it needs to have the STIR sequences, etc to show up inflammation. A full spine one would obviously be far better, but its less likely you will get that straight off in the UK.

The other thing that you could consider doing (that I did) was when my first SI xray only showed up very marginal damage (NHS said completely normal, a private radiologist saw minimal changes), I got my GP to do a second one a year or so later. That showed up quite a lot more damage - enough for a private rheumatologist to conclusively diagnose AS, though unfortunately the NHS rheumie is dragging his heels on it and still saying that its not enough. With significant change in just a year, I'm planning on asking my GP to do a third SI xray again soon, and expect that if it does show any further progression then the NHS guy won't be able to say it isn't AS any more.

Sonia38 #494145 09/01/13 09:24 PM
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Sorry to hear about your experience. I had a bad PT experience too. They tore my rotator cuff and then yelled at me and said they "couldn't fix my whole body." I have my law degree, and they are lucky I did not sue them for negligence!! Just find someone new, you do not need to deal with people who lack compassion and do not know how to do their jobs. And, if you have this pain then something IS wrong. Don't let them tell you its all in your head. It's not.

Also, careful not to overstretch your neck. It can flare up the nerves and make things worse. I learned the hard way.

*hugs*


Everything is okay. Trust yourself, and do not live from a place of fear.
Sonia38 #494160 09/01/13 11:36 PM
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Addicted_to_AS_Kickin
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I agree that you need an MRI and I really agree with Smiletoday about your neck. I "let" a PT work on my neck doing a gentle stretch and it really flared my Dystonia. No one will ever touch my neck again. Well, maybe my Neuro. :o)




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Sonia38 #494181 09/02/13 03:18 PM
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I LOVE my physio. She has been a huge help to me over the years. I think though, like doctors, it depends on the one you get! She is so helpful, and understands Chronic Pain. Hot water helps loosen up the joints and muscles before she works on them! She has helped me "work through" the pain and to know when to push myself and when to back off (instead of going full tilt like I used to do and exhaust self so I couldn't move!).

I would ask for a full MRI from Rhummy and then watch to a different physio. Good Luck!


Samantha

A.S.
Fibro
Undiagnosed Chronic Fatigue

Live like nobody is watching, Love until you can't and Travel to the moon & back
Sonia38 #494200 09/02/13 07:07 PM
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Sonia38 Offline OP
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Thanks for all the input,these people do make you question yourself,but I know it's not in my head I will ask my doctor for an mri,if not possible then I will save and go private just for my own peace of mind. Does an mri only show active inflammation or will it show past inflammation?Do you need to be in a flare to show anything? Thanks

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