nightswimmer Member Posts: 13

I was diagnosed with PA about 5 years ago and following a course of methotrexate tablets felt that my PA was under control, to a degree. However, I've had to stop the tablets as the level of dosage was affecting my stomach, so now I'm on injectable methotrexate. All of which I can cope with.

What is starting to dawn on me is that I seem to be getting worse and really struggling with every day things. I am 43 and always thought that arthritis was for old people who had swollen visible joints. I am just realising that although I don't suffer as much as others by some long way, the point I have gotten to has come round quite quickly and I'm finding it hard to cope with. Walking around hurts, standing up hurts very quickly, sitting down means I get stiff & painful quite quickly. I try to keep busy with work Monday to Friday but find that I struggle with the pain during the day along with a feeling of complete exhaustion. This exhaustion is with me all the time, some days are worse than others, but most days I just want to go to bed. I work on my garden but find that very quickly I have to stop. Even driving can be difficult as my shoulder is extremely painful nearly all of the time. Holding a phone to my ear is painful in my elbows & shoulders.

Its just dawning on me that I am really struggling to just get through one at a time. I don't want to feel like this as I feel very old and very lazy. I do speak to my partner, who is very supportive, but I feel guilty whenever I complain, which I try to keep to a minimum. I need someone to talk to who understands how it creeps up on you, one month you feel its all under control and not affecting you that badly, then the next month you realise that actually you are struggling to keep going.

I was on anti-depressants but I have stopped taking them as I didn't feel they were benefiting me and I think they were mis-diagnosed by my GP. I am a happy person normally, but find that the pain is wearing me down and my patience & tolerance of others is becoming thinner.

I just need to tell someone all the words that keep going round & round in my head, and share the frustration even though no one else can help, as they say a problem shared ....

Thank you for listening.


  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    Hi Nightswimmer

    I know exactly how you feel , i have only been on meth and preds a couple of months , l had horrible fatigue and pain , I thought i was doing really well , but Arthur has decided to pay me a visit in my back creeping around to my left arm .Depression comes with Arthur its the pain ,its enough to make you go mad , so well done coming off of those .
    Sorry i am not much help, no good at putting emotions down on paper so to speak .You have come to the right place , people here are fantastic and will be able to answer you better than i have done .
    Welcome to the forum

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello nightswimmer (named after REM's Night Swimming by any chance?) I am not from the Helpline, I am just a forum member who has PsA (psoriatic arthritis) - is that what you have? I startedmine aged 37 and I am now 53. I found your post very moving and just wanted to let you know that if you post on the LWA part of the forum I am sure you will gain replies from other forum members who understand how you are feeling. The tiredness is part-and-parcel of the disease, espeically when it is being active. Are you on any other meds apart from the meth? How often do you see your rheumatologist? You can also ring the Helpline if you would like to speak to someone, but please post again on LWA, more of us will be able to talk to you there. I wish you well. DD
  • nightswimmer
    nightswimmer Member Posts: 13
    edited 30. Nov -1, 00:00
    Thank you to dream daisy & Karen, I am new to this site as I have never felt the need to discuss before, but right now I am being driven to distraction!

    DD - I have indeed taken my user name from REM's song, bit of a fan. :) I will now re-post in in LWA forum for more chat. Thanks for telling me about your stories, it really is "nice" (totally the wrong word to use in this context, but I couldn't think of another) to know that I'm not alone (I knew I wouldn't be) in feeling the way I do. I am only on meth, are there other meds that can be taken? I see my specialist about once every 3 to 6 months. They want me to start doing tai chi & yoga, but just doing my laces up is such an effort! lol Swimming is out of the question as our local pools are chlorine only and my skin reacts so badly if I swim in chlorine.

    I hope to be a help to others one day, rather needing kind supportive words! Thanks again J
  • fowls48
    fowls48 Member Posts: 1,357
    edited 30. Nov -1, 00:00
    Hi Night swimmer

    This forum has been a tonic for me the people are lovely , i thought i was a sinking ship, god knows i look like the titanic :lol:
    I am Glad you have found us :) Unfortunately you will have to speak to your doc about the meds as everyone is different , i will be off the preds soon and they will tell me if i need to take anything else .
    Tai Chi and Yoga :lol: after i have got home the only thing i'm ready for is BED :lol:
    nice to meet you .