My first post!

Hey guys,

This is my first post so hopefully I’m doing this right😅 I’m Michael and I’m 31 and in the past few months my life has been turned upside down basically!

When I was younger I played football all day every day and there was one time I scratched my knee playing on astro and didn’t think anything of it. This turned into psoriasis and I was just putting cream onto it to stop it itching and thought that was the end of it.

Fast forward to when I’m 30 and I notice my hands, fingers, knees and ankles are really sore and swollen and I’m struggling to do normal day to day tasks. Turns out I now have psoriatic arthritis in quite a few places and I just feel defeated. I can’t really do things I used to enjoy, I can’t even walk without unbearable pain in my ankle. I’m 31 I shouldn’t be struggling like this! I’ve now been put on sulfasalazine after months and months of weekly visits to my GP and hospital for blood tests and other tests just to make sure my body could even handle it because I have poor kidney and liver function so honestly I’m just physically and mentally exhausted at this point🫠


I would love to know if there’s anything I can do to help my pain and/or make me feel like there’s some light at the end of the tunnel because I’ll be honest I’m struggling with it all right now! Thank you for reading my essay😅

Comments

  • PJoanne
    PJoanne Moderator Posts: 155

    Hello @MikeyBrandon93, welcome to the community.

    Here are some links for you to explore (grab a cup of tea!) :

    Also this,

    The lovely people on the helpline are here for you to talk to, and there are the details:

    Here is some information about Sulfasalazine.

    There is definitely something you can do for yourself to feel better apart from the treatment from you GP, it may take a little time and experimentation to find out what works for you and many of us in the community will be on the same path. Talking to other people can definitely help, so do keep posting if it's right for you.

    Best Joanne

    Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Arciere
    Arciere Member Posts: 48

    Hello


    We are in a similar position. I was also diagnosed with PsA unexpectedly. I know how it feels to be deflated - it’s hard news to swallow. However, after a journey, I would say that it can get better. Just hold on to the hope that you will feel better - maybe not today - but some point soon.

    Things that have helped;


    - Prednisolone oral steroids (from my GP and Rheumatologist) and steroid injections from a Rheumatologist.


    - Naproxen via the GP


    - Changing Rheumatologist. My first was so robotic. There was no empathy at all. It was a case of; you’ve got this - take that - next please. When I changed hospital, the second Rheumatologist I met was bloody brilliant - so caring and genuinely keen to help me. The team have also been great. I got some hope from them.

    - Hot baths


    - Sulfasalazine had a long uptake time for me. I actually thought it wasn’t working after about 3 months of taking it. When I came off it, quite abruptly, I had a particularly difficult time. So don’t write it off immediately - it was working for me - but not totally. I also think it changed my personality/mood, as did methotrexate.


    - Yulflyma (Adalimumab). This is a biologic treatment which has pros and cons. It hasn’t solved all my issues (yet?) but I am certainly moving more freely and almost living a normal life, sort of.


    - Personal life stress. I think stress/anxiety contributes significantly. My Nurse Specialist even commented that she meets many patients newly diagnosed with arthritic problems who are also dealing with trauma or stress/anxiety. I think this is catch 22 - the pain and worry actually causes anxiety about the future - so it’s not an easy fix. I do think personally there is a link between a troubled mind and an inflammatory reaction in the body. Try and find something that can give your mind light relief from any stress or trauma - I find solace in music with headphones, as an example. (I am no expert - just saying what I think)


    - one of those foot bath spas from Argos! They are a gimmick I think, but it does help my feet


    - saunas - as the cold tends to now cause pain, I have found saunas to be comforting. I am not brave enough to try cold therapy yet.

    hope this helps

  • Woofy
    Woofy Member Posts: 358

    Hi.

    I am sorry you have been diagnosed with this.

    I was diagnosed with RA officially last year, it’s been a bit of a journey. My medication trials are ongoing at the moment.

    The hospital will try you on lots of different arthritis meds until they find the right one for you. Everyone is different. Have they offered you a course of steroid tablets whilst you wait for your Sulfasalazine to kick in? They are the magic tablets you can only have short courses, but they help me, I am taking a course right now. You will see a light it just takes time. Pace yourself whilst you are in pain. You can still do the things you like to do, but you may have to do things in a slightly different way. Football may need to go on the back burner for a while until your pain is under better control. Everyone on this community understands what you are going through, so you have a heap of folk who will give you great advice, and fantastic support. Contact your rheumatology department if it all gets too much, they are there to help. It can all get a bit overwhelming at times, it’s definitely tested me.

    Read up about your condition, and talk about it to others so they can understand what it is you are dealing with.

    You will get through this. Good luck.