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Living with Psoriatic Arthritis (PsA)

Not sure what's normal and what's not


#21

The thing is that Methotrexate is working quite well and the Rheumatologist was very pleased with my arthritis the last time I saw him. I do feel better in that respect so that is a positive thing. I also do feel less sick on the injection (although still a little sick and groggy). I think that it’s really the change in what I am able to do now. I work FT and I love exercise/going out, I had a full life. Now I am too tired and less able to focus & I am struggling to accept that this may be as good as it gets. I fully understand that it’s a world of pain without meds and that is why I stick with the programme to the letter. I guess what I am saying is that I am at the making adjustments stage and it’s a bit of a struggle for me, as I am sure it was for all of us. Accepting limitations and coexisting with them is hard. I am very lucky because I see that some people have difficulty finding a sympathetic Dr but I am able to talk to mine about all of this.


#22

I certainly understand the difficulty with adjusting to it and accepting its limitations. I think I threw a great big tantrum for almost a year when first diagnosed. And I too work full time. Eventually I returned to see a pyschotherapist - that was and remains such a good thing to do. And I still work full time and now I ‘do’ alot more too.

And I suppose I never really stop the adjustment process either. But the tiredness can change for the better too. And thankfully my present cocktail of drugs doesn’t present me with much or any side effects worthy of noting. So that can be possible too.


#23

I was only diagnosed in Feb so I’m still working through things. In so many ways it’s been a tough year. I absolutely agree about the therapy thing because I started bereavement therapy a few months ago & we speak a lot about this too. Its kind of like another loss (of your old life). It’s really helping I think but it takes time. The tantrum is also massively understatedable too. I just feel like screaming——-I looked after myself kelp fit/diet exc. I worked hard to establish a career & I just got this thro no bloody fault of my own & its not fair. The truth is tho that people get illnesses they don’t deserve everyday. Speaking to people who have came through is so helpful. Thank you for all your replies


#24

@Su26 you’ve described how I felt initially down to a tee! And I can tell you without some of the responses from people on here, I wouldn’t have got my head around things in the mostly positive manner I have. It is of course a bereavement process too. But I can certainly tell you that the tantrum does abate, capacity issues can certainly ease up considerably and things also just settle down lots more. And it does of course take time.

So in the meantime there’s lots of people here who can virtually answer any question you might have, they’ll also make you laugh and you’ll just be in good company. :grinning:


#25

Thank you. I think that this all will just take time. I’m recovering from foot surgery which I had in May. It’s September & I’m still struggling with the healing (probably because I’m on methotrexate & have a rubbish immune system) so this year iv had a major bereavement my diagnosis & surgery to deal with. I’m working very hard to stay on top of it all. Thank you for being so kind


#26

Su, I wish you well. I think we all have a continuing wonder of what is normal and what is not with PsA - and that is where the forum is useful. That toothache can’t be down to PsA, can it? Well, come here and you might think otherwise! And what about that dull ache under your arm? Yeah, that’s normal too. And so it goes on!

It’s a nightmare for people like me with health anxiety as there is the constant concern that everything is put down to PsA, and one day it won’t be and we’ll have missed something important. But, eventually my brain starts to see reason each time - after about three weeks of googling and thinking during that time that I have the black death, diphtheria, and cancer of the toenail combined.

In all honesty, it took me three years after this whole thing kicked off before I got to grip with the “new normal” and started allowing myself to adapt to what was “now” rather than trying to live in the past. By that, I mean buying a coat with a hood instead of trying to hold an umbrella with painful hands. Or buying slip on shoes because I could no longer reach my feet. I don’t think going for those options is giving in, but just being pragmatic about the situation. The same is true for knowing that you’re going to be more tired than you were before (although once you get the right treatment that can, and often does, get better). But there is a time when “angry” disappears and “let’s get on with this” takes its place. There are still ups and downs mentally (for me, at least), but they do get better with time.

Now, if only I could say all of that to myself as well, I would be in a much better position!!!


#27

My goddess this is all so true. I spent ages the other day struggling to get my stupid umbrella down. I also said a few months ago that Velcro shoes were a step too far. Needless to say that hoods & Velcro are now my reality. I feel like a total moaner because I only have moderate disease at the moment but I think it’s actually how it’s impacting on your life. It’s incredibly difficult to know what tthings are PsA and what isn’t. It’s taken me so long to get over my surgery in May. I don’t think it’s the PsA thats slowed my progress but God knows. It’s brilliant to hear how everyone else coped with diagnosis tho because some days I think I’m going mad


#28

Feel for you, broke my femur at hip bone in September, as a result orthopedic said to ask rheumy to postopone mtx, we have resumed at reduced rate at the mo, three times a month instead of 4. All the best,