Update on AS — Scope | Disability forum
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Update on AS

jan5987 Community member Posts: 107 Courageous
Hi everyone 
it’s now July and no further forward than I was in may.
i am in so much more pain and I am writing this with my left hand as my right hand is nearly useless.
I can’t remember if I updated since may or June as you be honest I really don’t know where I am as every day is rolling into one. I only have you to talk to as I can’t tell my husband as it’s bad enough him trying to cope with it’s his brothers death and his depression and high blood pressure, he knows how bad physically health is but I tell him my mental health is fine but actually it’s not I cry at night and the pain is getting worse, the last few days I can hardly walk like December and severe pain in the  lower back and fatigued and eating too much because can’t hardly move so eating more and weigh going on over 9 pounds and I am only 4ft 9 and nearly nine stone, I am coming out in spots I don’t know wh I rang the docs again because the  Social prescribing has not been intouch and it was may. They were supposed to be, doc said he will tell them but nothing and I can’t ring each day. I managed to see an OT after ringing every day for a week and he gave me a perch stool and two walking sticks and coming to try a bed topper but right now Iam not sure how that will be but we see when it arrives.
I have been trying to get through to rheumatology for weeks but either on holiday or poorly the one I saw in June so I spoke to the secretary who said write a letter so I asked my husband to write but still didn’t hear anything.
then today just made the icing on the cake a rheumatologist after I left an upset message got back to me and said 

my MRI scans have disappeared, I had them done  in May but trying to get hold of a rheumatologist nurse I sore on 11th June is virtually impossible I ring and ring and yes yippee  I got a call after I said yesterday I am in so much pain please I need some help and a different rheumatologist says we can’t find your scans but you have got AS but we need to see your scans to confirm this and you need a consultation with a consultant before we can diagnose but I said it shows inflammation in my joints I was told by a physio the lower area and she said well you have it then!!!! I am  well depressed on top with all this and I can’t carry on much longer without any help from anyone, I can’t eat properly cos I can’t use a knife and fork with pain, I can’t wash my hands properly without pain,I can’t even imagine our myself without pain my husband has to, I can’t txt or read a book it’s too heavy to lift, I can’t drive, I can’t do anything in the garden, I can’t even clean my teeth without pain and I now have serious gum disease, I can’t make a cup of tea, lift a glass, wash up,i and my husband have zero quality of live. I am not able o do anything, I try and walk as best I can but I have no days since April 16th 2021 without pain it’s 24/7 and even wakes me up at night., in February 2021 I started slowly as I remember I had back pain then it was diferebut it came on slowly I didn’t notice it as much as April.

Sorry for the long post but struggling is not the word and no treatment as yet apart from parctmol and codeine.

Thank you.


  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @jan5987

    Thanks for making this post, and I'm sorry to hear about how you feel. You and your family clearly have a lot on at the moment, so I hope that being able to put it all in writing on the community has helped you a bit.

    I have sent you an email from [email protected], it would be great if you could give it a read and get back to us :) 
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  • jan5987
    jan5987 Community member Posts: 107 Courageous
    Hi Teddy Bear
    thank you for checking in. I would like to talk privately if possible I did ask Alex but didn’t get a reply as I don’t know if people on will understand what I was told by the consultant. 
    And no reply from the GP I am making a complaint about the lack of treatment I have had to Pals it’s disgraceful.
    take care 


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