Diagnosis Info For Arthritis

[joko]

I was diagnosed with 'wear and tear' on my spine - at aged 15! (I'm now 50)

In particular the coccyx area, though i dont know if they saw it in other places.
The pain was in the lower back, coccyx area

They called it Transverse Sacrolilial Processes

Would I be right in thinking that that was basically a diagnosis of arthritis/osteoarthritis?

I mean, at 15, it can't have been age etc & i wasnt sporty or doing anything unusual to cause it.

Years later i was diagnosed with Hypermobility. 3 separate times. but I was only bendy in my neck, hips, & spine & elbows. Everywhere else had normal movement.
Im also awaiting formal diagnosis of Ehlers Danlos - EDS

Now i'm older i think the wear & tear was caused by a slight skeletal misalignment, which in turn caused these bones to rub together.

I have noticed, over the years I have become stiffer, counteracting any extra mobility & now things like my fingers have less mobility than even a normal persons, which again makes me think arthritis.

Thanks :) x

[Smowball]

I’ve been diagnosed with osteopenia, which is a step below osteoporosis, a couple of months ago. Sending you hugs.

[Sqad]

First of all,rank you for your full andhlpful history.

////Would I be right in thinking that that was basically a diagnosis of arthritis/osteoarthritis?////

Yes, you are correct it used to be called Still's Disease in my day. onset in children and if it came on a little later,say midteen age,was called Adult Onset Still's Disease (AOSD).
This is clearly what you are suffering from and there is a distinct association with AOSD and E-D syndrome.

AOSD isnot a wear and tear situation but although it's cause is unknown a genetic abnormality has been suggested.

Boney misalignement is a rare possibility in your case.

[MissTerious2]

Jokeo. You sound exactly like me! What more can I say. My arthritis was first diagnosed in my 20s but started in my school days apparently. My EDS wasn't diagnosed until my 60s, I now have arthritis everywhere and my spine is a complete mess. I have a new shoulder and have been offered ops to replace the other shoulder, both hips, one knee and to have rods inserted in feet. I've also had hernia ops. I'm not having any more ops. I'm almost 76 and I just can't see the point.

[roopower]

This sounds very like my poor mum who suffered all her life. She was in hospital when I was about ten and came home with a huge solid plastic 'cage' that went round her back and hips. This was superceded by a selection of corsets which got more and more refined. She had three hip replacements and then an operation which removed one hip altogether, a shoulder replacement and awful boots with calipers that kept her ankles in the right position. Reading how you are suffering I consider myself lucky to only (at present, aged 71) to need one new hip.

[MissTerious2]

Roopower. Your poor mum. The best thing for me now might be a suit of armour!

[MissTerious2]

Roo. Was your mum perhaps suffering from hypermobility/EDS? It sounds as if she was. But back then it wouldn't have been recognised. Only in the last decade or so has it been treated seriously. I was just told I was double jointed because I was so flexible. It's now beginning to be taken very seriously and the right exercises from childhood can help enormously. A lot of cases are genetic and looking back now, my mother may well have had it, and my grandfather. Unfortunately my son has inherited it. Its caused by faulty collagen and there is no cure.

[joko]

Thanks everyone.

its sad how many people have these kinds of conditions.

the weird thing about mine is the hypermobility gives over flexibility but the arthritis stiffens me up, so its seems like theyre counteracting each other, unfortunately not in any beneficial way.
I wish docs were more clear when they tell patients things, i should have known right then that I had arthritis, not just assuming it was a weird anomaly, because they made it sound like an accident.

[MissTerious2]

Hi. The arthritis is basically caused by the hypermobility because your tendons are floppy and dontdo their work so your joints and muscles have to work much harder and wear out quickly. Hence arthritis often sets in at a young age. I was told by the soft tissue specialist that hypermobility can cause a lot of pain in its own rightand of course when you stiffen up and arthritis sets in, although not so mobile you get arthritis pains. So you can't win.

It took me a long time to get an appointment with the right specialist in Rheumatology and an accurate written diagnosis. I had years of wrong diagnoses! And wrong treatment by physios that has made things worse.




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