Waiting lists…..

jonathan_mcl

I was diagnosed with Ankylosing spondylitis when I was in my early 20 im now 39. (1 year roughly) I’ve been in a constant flare. I was put onto adalumumab but this didn’t really help. I normally go through my rhuematology nurse when I flare bad, however I have called every Monday now for 9 weeks just to get some treatment. Mainly a steroid injection.

im not ashamed to admit it but when I feel like I have no help to turn to when I need it, has had me feeling so low that I have contemplated suicide. I hate that, when the weather is nice and everyone is out having fun I am crippled in bed with heat pillows trying to sort out my pain.

anneb82

Hello @jonathan_mcl

Welcome to the online community and thank you for joining us. I hope that you will find this a friendly place where you can meet lots of other people that have similar experiences.

So you were diagnosed with Ankylosing Spondylitis when you were in your early 20's. For the past year you have been in a constant flare and are really struggling. You were on adalumumab but you didn't find that this was of any help and have been trying to contact the rheumatology nurse for the last 9 weeks to no avail. When you feel like you aren't getting help it leaves you feeling vey low and depressed to the point that you have felt suicidal at times.

I really feel for you, as it sounds like you are really suffering. I know that pain can have a huge impact on our emotional state so you are not alone when feeling this way. The fact that you have joining uo to this community shows that you are still fighting. I hope that now you can chat to people that as similar experiences will help you feel less alone in what you are currently are going through.

With regards to trying to contact your rheumatologist's nurse with no avail, would you be able to contact your consultants secretary to see if you could get any help that way? If not, I would suggest trying your GP to see if they could get you any help. You definitely shouldn't be going through this kind of pain and a flare up this long is not right.

I've found the following links below that I think might be of help to you, so please do give them a read when you have the time.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/emotional-wellbeing/

I do hope they are of help to you and please do continue to keep getting involved in the online community as we are a friendly bunch and always looking to make new friends.

Please also let us know how you are getting on.

Take care

Anne (Moderator)

jonathan_mcl

thanks for your help. I actually walked into the hospital last week to find out what’s going on. They told to me to call the secratery of my consultant which I did and they put me through to the nurse help line. I left another message and still no reply. I also phoned my doctors and I was told that if rheumatology is open to me then I have to go through them. I’m so frustrated with everything now. I’m not even on any meds except co codamol and arcoxia. I am on 3 different waiting lists. Aqua physio and occupational therapy. God knows how long this will take.

thank you for your kind word I will look at the links you sent.

thank you

J

Lilymary

I'm sorry you're having such a difficult time at the moment, and that this has you feeling so very low. Being in pain is bad enough, but navigating through the NHS makes it feel much worse.

It sounds like you haven't had much support from the health care system recently. Sometimes it takes a bit of "self-advocating" to get anything done. As you've tried so hard through the regular channels, hjave you tried contacting the Patients Advice and Liaison Service? (PALS).

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

It might be worth you getting in touch with them to see if they can help.

It may also be worth asking for a referral to a Pain Clinic to see if they can also help you manage your pain.

But do also focus on your mental health, being so low will only make your pain feel worse. Distraction is good on both scores, it may lift your mood, and take your focus away from the pain. Becoming a little more active may (counter-intuitively) help your pain, as letting your body seize up from inactivity won't help. Just very gentle exercise, ie as much as you feel you can manage, however little that it, might help you. There are some "exercise" classes on this site that might work for you - Let's Move with Leon (and his mum) - you can make them as gentle as you need them to be, and they're quite fun in a gentle kind of way. I found them quite good when my hip was wrecked.

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/

I hope this helps. Keep coming on here if you feel you need a moan or want more advice, we all know how rubbish this can get.

jonathan_mcl

Thank you for your reply. I just checked and PALS isn’t available in Scotland. I think I’ll just go back up to the rheumatology department tomorrow and beg for help.

stickywicket

PALS isn't available in Scotland, Jonathan, but PASS is and it's virtually the same. Try here https://www.careinfoscotland.scot/topics/your-rights/patient-advice-and-support-service-pass/