Diagnosis and Acceptance is Hard

Hi @Ponee

I am so sorry you're having a dreadful time of it I mean you'd think the psoriasis would have been a clue🙄

Ah well you are in the system now thanks to a good GP.

I don't know what dose of MTX you're on and we aren't allowed to give out medical advice but I think you probably do want your meds looking at. Most of us take folic acid every day except MTX day. There are other meds (DMARDS) they can add to what you're on if it's not working or the dose can't be increased.

Please don't beat yourself up about not having the energy to wash up. It's a miracle you have the energy to work!!! Honestly too many people are working and barely surviving till their days off in pain.

I do hope you can hang on in until July it seems a way off but will arrive sooner than you think.

In the meantime there are other anti-inflams which are gentler on the stomach. I get pain with ibuprofen naproxen etc (then the two-bob-bits😳) but can take Arcoxia which is a COX2 inhibitor one. There are others like it maybe a chat with your GP?

Best of luck oh yes keep posting keep reading reliable stuff like Versus Arthritis stuff not Dr google @jamieA might be able to help a bit too he knows stuff🧐

Take care

Toni x

hey @Ponee hang in there. Totally get where you are.

I was diagnosed aged 18, now I’m early 50s and just returned to meds after 10 yr remission. PsA can get knocked out with the right drug regime. Maybe ask about biologics if MTX not stopping flares. I just went on Amgevita, a few niggly side effects, but stopped my flare in its tracks. I had gone to left handed, as right hand was a swollen mess. Movement is coming back and swelling going now.

I also keep gluten & dairy free (I ended up going vegan) as this helps loads. I limit sugar too. Finding things with coconut sugar in is better. It can suck but if it dials the pain down, I’m there for it.

Don’t push yourself, but move as and when you can. I hope you got good people around you to support. Sending my thoughts.

Lou x

@LouLouCeCe thankyou so much for your input !
This gives me hope that I may be as lucky as u in remission !!!!
@Ponee i wish u all the best keep coming here and asking for advise and questions so many wise people with a wealth of knowledge! They helped me a great deal I don’t come on much now but I’m feeling good so that’s why I do pop on time to time if I can help in anyway x x x

@Ponee try Minimalist Baker for a cracking recommendation for a gluten free flour mix. I mill gluten free oats for the flour in my staple banana bread. Stand mixer sounds awesome 🙌🏻

Hi @Ponee - I'm messaging because I fully understand the struggle and the frustration you describe, as well as the trauma and shock. I have RA but had a similar-ish journey to DX, and also feeling like I'm had to relearn how to live again, having been a very active person. I echo everyone else's sentiments here and I hope you find a treatment that works well for you soon!

Here are a few practical tips I picked up along the way that may be helpful.

I used to go to my horrified-looking hospital physio appointments and just cry and cry because I couldn't get used to not being able to do the things I used to take for granted. There's a listening service called The Wren Project that gives free weekly counselling (for people with autoimmune dieseases). At first, I used this service to moan my heart out and it helped a bit. The process of DX is itself so traumatic and I found the listening service helped me to process everything a little easier.

Depending where you're at with your health journey, you may want to consider applying for PIP. I did and it has been so, so helpful. It's a disability benefit to offset the way that a condition effects our daily lives (walking around, getting dressed, doing chores etc). My ability to function has changed a lot since before my illness. I really struggle with fatigue and, like you mention, when I overexert I have to spend days in bed to catch up. For me, cooking and cleaning dishes can be too painful after work. Having PIP has really helped. It also allowed me to get a travel card from my council - so I now take buses everywhere to try and conserve my energy for when I want to use it. I

Use your illness as a valid excuse to stop doing anything you vaguely don't want to do (you need to look after yourself carefully and very intentionally).

I'm sorry to tell you this, because it sucks, but totally cutting out gluten from my diet really helped me pain-wise. I also experimented a bit of Intermittent Fasting - I found it did help with my reducing my pain, but I also am lazy and find it hard to self-discipline. I also, because of low sugar, sometimes I feel like i need sugar to stay alive at work…

I have no idea if this would be relevant or appropriate for you, but my GP put me on amitriptyline - an antidepressant used to treat pain syndrome - and also to counteract the low mood that MTX gives you. This really helped my pain levels. My GP explained that it kinda works by making us less "sensitive" to experiencing pain, after our bodies have been through extremely painful periods.

OK — that's all I can think of. Wishing you the best, keep going and it will get easier.