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Long term sufferer new on here

I have had psoriatic arthritis for 18 years. I have spent several years on Steroids and then the last 13 on methotrexate, initially tablets but injections for most of the time. I work full time as a teacher for children with special needs. My disease has been under control (mostly) for a long time thanks to an excellent consultant and fantastic team. I have had the full range of steroid injections everywhere from knees and fingers to spinal epidural (that was fun) but otherwise no operations or time in hospital. And worked my way through a range of the other drugs used but no biologicals so far.

Nausea and exhaustion have always been an issue but I seem to have got worse recently. I am working from home as I am on the shielding list (methotrexate, high blood pressure, historic lung damage) and finding things really hard at the moment. I find working on a computer has caused flare ups in my shoulders and hands and I can’t get the exercise I need to keep other joints as fit as I would like. Today I just found everything too much and just went to sleep for a few hours. I feel like I can’t continue to do this forever but can’t see a way out and that is incredibly frustrating. I have tried the things that usually relax me - playing bass guitar, learning the saxophone, reading, watching films, working on my old Capri project but my energy and pain levels are stopping me from doing more than a few minutes of anything active.

Does anyone have tips for combating the nausea? (I can’t even watch hand held footage on the news without getting seasick) or the exhaustion?

Sorry for such a negative first post but I guess that if there is anywhere where people will understand what I am experiencing it’s here.

Comments

  • AlAl Posts: 90 mod


    Hi and welcome,

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

    There are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    About arthritis

    https://www.versusarthritis.org/about-arthritis

    Find out more about the different conditions, treatments and how to manage your symptoms.


    if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable

    Al

  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭

    Hello, I too have PsA which began in 1997, I began the meds in 2002 and was accurately diagnosed in 2006. I inject meth and humira and have done for over ten years. I still flare despite the meds and neithe know why or care. I spent around nine weeks mostly asleep between the beginning of January to the beginning of March, went away for four days, came home with a tonsilitis-type thing and have been shielding since March 05. I am fortunate to be at the wrong end of life i.e. retired, no mortgage, no dependants by design so life is not interrupted too much by disease activity. It is a very different story for others.

    I wonder if you have grown to tolerate the meth so it now needs the support of another med to bring things back under control. When did you last have your bloods done? Have you always had just one med at a time or more? I had sulph for six weeks in 2002, since then it has been two or three meds running alongside each other. Do you have a Helpline at your hospital you can contact to let them know how things are at the moment? DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Thanks for the reply, I have been on Leflonamide alongside the Methotrexate but the disease has settled down so that was cut out and methotrexate halved. I think most of my problems are down to lack of exercise - I am used to being on my feet 10 hours a day, and use of the computer. The seasickness issue has always been there but seems to have become more significant over recent months. I cannot watch my daughter play computer games for example as my head is spinning after a few minutes. Bloods done recently and no problems (ESR and other indicators normal for me and quite low). When I get flares I normally try to fight them by being more active, I still manage 95% of stuff I used to do but the last couple of weeks I just don’t seem to have any energy for anything. Things that I normally love doing just seem to be too much effort. Perhaps I am just going a bit stir crazy.

  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭

    I wonder if this could be vertigo (or something similar) to do with the inner ear? A friend's husband (who 'only' has OA) has bouts of this and has to do specific neck exercises to realign the crystals. It is tempting to link everything that happens to the arthritis but other stuff will rock up because it can. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • KramKram Posts: 2
    I sympathise I really do! Going through same thing at the moment and struggling to get out of the dark hole I seem to be in. Not being at school with my lovely class (y6) and saying goodbye to them is cutting me up. However, walking my dog has been a life saver lately. Having that exercise and time to switch off from the stranger life we're all leading at the moment has helped. Please message me if you need to have a rant! I find that helps too.
  • Thanks all, not sure on vertigo as I am totally fine apart from certain issues all which are movement linked. Since being on methotrexate I haven’t travelled well - I have been prescribed scopolamine patches which work well (mostly). Hand held camera footage, flashing lights (think 80s top of the pops) and video games seem to be a more recent issue. Lockdown has been long and not being able to do the few things I could with my daughter is hitting hard at the moment. I don’t know here to turn at the moment as most of the problems I have are so minor it’s stupid to take up the time of the already stressed NHS but I am lower than I have ever been and don’t see a way out. It’s hard to explain to my wife why I am so tired, why small things hit me so hard at the moment. I have fought this stuffing thing every inch of the way but I just don’t seem to have that energy anymore. When my fingers were bad I started to learn the Bass guitar and am now in a band and have played loads of gigs, when my knees were bad I bought a bike and cycled to work. Now I just think, why bother? it will get me in the end no matter what I do. I can’t explain to my wife what it feels like. I cannot imagine working for another 20 years and cannot see what else I can do. Just a low spot I guess. Always tomorrow......

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