A wee moan, and unsure where to turn

Weepth2k10

Hi,

not posted in a Long time, just a bit tired with this disease. I was diagnosed with axial spondyloarthrits in 2017.

For the last 3 or so years i have had some sore of pain so the rheumy Dr requested a updated mri and turned out i jad chronic changes, chronic changes didnt really settle my worries or answer my questions, so requested the report.

The m mri done in 2017, showed inflammation was prevalent over my si joints and irregularities were seen in both sides but more so in the left, everything else was maintained up the spine.

Fast forward to jan this year new MRI shows, multifocul erosion across the sacroilliac joints billatirally with fill in(not sure what this means), partial ankylosis in the left. Fatty metaplasia both side if sacroilliac joints, no active disease. I guess the inflammation went on holiday at the time if my MRI.

Moving up the spine, there are fatty corner lesions anteriorly pasteriorly extending across multiple levels from the upper thoracic to lower lumber spine, again inflammation was sunning its self somewhere else.

Also there was and old vertebral body compression fracture at T7(my understanding is that compression fracture normally come later in life, i have just turned 40) and a possible established Andersson lesion at T10.

The conclusion is evidence of chronic axial spondyloarthritis with no active disease because it was on its holly bags.

This is just my tailbone to top of spine that has been scanned. I have daily swelling/pain in my knees, ankles,feet ,toes, hands and fingers. I can see changes in my toes- clawing and hammer toe. I get pain in my right jaw, neck,shoulder and wrists. Had my knees aspirated around 10 times since 2017.

To me this doesnt sound like a disease that is under control, i cant take sulfasalazine, methotrexate or the likes because i get liver problems as a side effect, i have asked to have it and get weekly bloods done, even if they are weekly for the long term, but its a NO. I have to continue with the amjeveta, co codamol, Amitriptyline and ralvo plasters. I had been on benepali from 2017 yo 2022 which was then switched.

I am sorry for the rant, i am just so lost this disease is picking bits of me more and more. I at one time could do a 12 hour shift come home take my kids out, carry them on my shoulders, play football, run and go to the gym but in 10 or so years i have been robbed of all that iam even thinking about a cane or crutches.

And now my 13 year old son is complaining of shoulder and neck pain.

Happy Friday😁

frogmorton

Oh gosh @Weepth2k10

and the last sentence is your real worry isn't it? You are feared about your son.

Let's hope his is genuinely just something he's pulled/sprained or the often used phrase 'growing pains' I imagine at 13 he is shooting up or about to.

If you are worried though i would get him to the GP and ask to be referred at least he should get good care if it does turn out to be in anyway connected. You'll see to that.

I read and heard all of your 'rant' (feel free we all do it from time to time) and am so sorry things have got so bad for you so quickly I know I can't help, but we are here and we do care.

How very dare your inflammation go on it's holly-bobs exactly when you needed it most. Hang on is it maybe shy?

take care

Toni x

Kar

oh bless you , I can sympathise with the changing conditions and with the lack of a active diagnosis and the effect it had , it can certainly get you down. I often find that relaxation or gratitude meditation excersize helps me ( although I know it’s not for everyone).
Thinking of you

Ellen

Just a very quick Hello to @Kar @Weepth2k10 apologies for hijacking your thread.

kar welcome to the online community I see you first post is helping someone else. I hope you will in turn find this site helpful for yourself.

Ask any questions if our members can help they will try.

Best wishes

Ellen.