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Autoimmune disease

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Any ideas?

7 replies

JustforAlice · 19/05/2024 09:56

Morning. I am hugely suffering at the moment and am being tested by gp but wondered if my symptoms match other peoples so that I can hopefully start to think there may be an end to the pain.
Background
5 bulging disks in lower spine - diagnosed by MRI Sept 2022
no other health issues
Current
5 weeks ago back pain increased dramatically combined with very very painful muscles. Huge pain down back of right leg initially plus left side deep groin stabbing pain.
The pain moves around though - for the last 3 days I have been barely able to use right arm.
2 weeks ago right leg basically immobile - had to lift it to move around.
Pain moves each day but is concentrated in legs, arms and neck.
Have not slept properly in weeks as the pain wakes me up.
Had another MRI which shows 2 of the five bulging disks have worsened but spinal canal clear and no obvious nerve compression.
Last week chest X-ray and pelvic X-ray. Both ok.
Blood tests - liver, kidneys fine but high inflammation levels.
More blood tests tomorrow and GP now mentioning polymyalgia as a possibility.

I am very down at the moment and would love to hear some rays of hope of getting out of this hideous pain.

Thank you if you have got this far!

OP posts:
JustforAlice · 19/05/2024 12:15

ESR 142

OP posts:
JustforAlice · 19/05/2024 13:57

Ooops ESR 42 not 142

OP posts:
OneSmallPieceOfCheese · 19/05/2024 16:57

I'm sorry you are in so much pain. I have nothing useful to offer but hopefully someone will be along soon who knows more than me.

florenceandthemac · 20/05/2024 16:17

Psoriatic arthritis?

JustforAlice · 20/05/2024 16:35

No skin rash and no arthritis being shown on the mri’s and X-rays.
Burst into tears this am at doctors when the lovely nurse taking my bloods asked if I was ok. Why does people being nice to you make you (me) so weepy?

OP posts:
NeverDropYourMooncup · 20/05/2024 16:40

JustforAlice · 20/05/2024 16:35

No skin rash and no arthritis being shown on the mri’s and X-rays.
Burst into tears this am at doctors when the lovely nurse taking my bloods asked if I was ok. Why does people being nice to you make you (me) so weepy?

High inflammation, even before you take into account a shitload of pain, affects mood & emotional lability.

The trouble with scans is that you're laying down for them, so they can't see the effect of gravity upon your spine.

It's truly crap and I hope you get some help soon - have you requested a referral to rheumatology? You don't have to have visible joint changes to have inflammatory arthritis for many, many years and autoimmune disease can also affect tendons, as well as a gravity-induced nerve compression causing pain.

JustforAlice · 20/05/2024 20:36

Thank you so much @NeverDropYourMooncup

thats really interesting to read and I shall be talking to doc on weds when new bloods are back so will request referral then.
Also lovely to feel someone understands. I truly appreciate it. Pain is a fucking horrific nightmare and none of us should have to go through prolonged periods of it.
Gravity induced compression!!! I had not considered that of course the effect on the spine will be different when standing.

I should have said in original post that I’m 53 in case age is a factor.

OP posts:
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