Diagnosis and Acceptance is Hard
I've had a rough 12 months. I am 31 and after months of unexplained agony in numerous joints, fingers so swollen I lost 90% of the range of movement in them and having psoriasis plaques cover half my face and body I have finally been diagnosed with bilateral Psoriatic Arthitis. It affects my right hip, fingers in my right hand, right elbow, right shoulder and right collar bone. At the worst of it I was unable to dress myself and I had to sleep on a mountain of pillows because the agony of lying flat made it so I couldn't breathe.
I've had nothing but frustration with doctors who have looked at my blood tests and told me that even though my inflammation was very high we'll just wait another 2 weeks in case you're ill, over and over again. I was finally referred to rheumatology by a doctor who was only supposed to be helping me with my skin; she took one look at my purple sausage fingers and told me I wasn't going insane.
I started treatment on methotrexate 6 months ago and still had vile flareups, but the rheumatology nurses tell me I need to work on my pain management. Unfortunatelty I can't take ibuprofen often because I also have IBS and it gives me tummy aches and I'm not able to have anything stronger like naproxen because it causes psoriasis flare ups. Soooo.... :( rip.
Despite all of this stress my biggest frustrations are at myself. I used to go to the gym 3 or 4 times a week and now I can't walk more than 15 minutes without ruining my day and several other days after. I can't eat a lot of foods I used to enjoy because it makes me feel worse (e.g. dairy, red meat, gluten, sugary things) and I get home from work aching and exhausted and then I get mad at myself because I can't bring myself to do the dishes.
How does everyone else cope with how much your ability to function has changed? I'm now left handed; but not by choice :')
Comments
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Good morning @Ponee welcome to the online community.
Gosh you have had a tough time. The good news is we have a lot of members here who have PsA and will be able to relate to your story and share their own experience with you.
Thank goodness for the Dr who referred you to rheumatology at last.
I wonder when you are next due to see your actual rheumatologist rather than the nurses? it may be that something can be done with your medication to help.
I wonder whether a quick read of this might be useful to you?
and finally before I leave you to meet our members perhaps you'd like to give our helpline a call they can be incredibly supportive and knowledgeable
My main advice - keep posting and reading.
Best wishes
Ellen.
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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
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Hi @Ponee
I've just seen your first post after @frogmorton mentioned me in her reply to you. I was diagnosed with PsA in 2020 at 65 having had psoriasis from age 15. It came on really quickly and in the space of 6 weeks it affected hands, shoulders, hip, knees and ankle. I'd never had a chronic illness before - only acute dealings with the NHS. I just assumed that medics would react in the same way with the same urgency and I was wrong. I realised after 9 months that I needed to be more assertive in my dealings with my rheumatologist. I wrote a detailed letter of my treatment to date, the lack of outcome or urgency and the comments from other doctors I'd seen - I'd been admitted to hospital 5 times in 7 months. I finished the letter by stating if the rheumatologist wasn't prepared to help me I wanted referred to a different rheumatologist. Things changed quickly after that and I was prescribed a biologic to add to the sulfasalazine and methotrexate I was already on. This combination has made a significant improvement. I was also referred to physio, occupational therapy, podiatry and a pain management clinic.
I know we are all different in how we react to drugs and I realise that living in a big city I could request a change of rheumatologist where others maybe can't due to location. However I would stress the need to state your physical situation strongly to your medics - preferrably in writing as I believe this has to go on record.
I hope you get treatment that works for you soon.
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Hello @Ponee
It is lovely to have you here as part of this community. I hear you when you say that you have frustrations about the change in your ability to function.
I used to be a yoga teacher, swimming 5 times a week, walking everywhere. I have had to work on my self acceptance very hard! I now run a little car, practice a 5-10 min yoga routine when I know it will be good for me and go to the swimming pool for the sauna and spa bath 🤣.
Wishing you all the best
@PJoanne
Need more help - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm
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I just wanted to give a huge hug !!! 🤗
I was in your position in 2020 !
similar with the pain management because I have IBSI just wanted to jump in and say try not give into to it I know it’s so so hard it made me so depressed !
know your limits and make sure u listen to your body rest when u need to and try to be stress free !
I’m in a fab position that I have been in remission for a year exactly! No medications ! Official since December 2023 !
I was treated with meds quickly and aggressively and I think that has helped !
I now live my life very differently to pre diagnosis!
I quit smoking eat healthy and keep moving but the biggest change has being stress free if I can be and take lots of baths ! I felt my fingers hurting on Sunday for the first time so I did nothing and relaxed and I woke up Monday ok .
I know this is unusual but I just wanted to give u some hope ! Because PsA can go into remission xxx1 -
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
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@frogmorton @jamieA @PJoanne thank you for all of your comments it all really helps.
@LouLouCeCe I actually got some arthritis cook books that have really got me looking at my diet. I'm already dairy free but the gluten is gonna be difficult for me because I bake so much. Got myself a stand mixer so I could still move aftwr mixing batter 😅
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@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 x3 -
@ponee, i can relate to ur story. Not being believed and treated quick enough has been stressful and frustrating.
I to often leave dishes when I'm having a bad spell. I feel dirty and annoyed at myself for it, but after working with painful joints, lack of sleep from them .I have no energy. Plus standing at thw sink is so painful with hip and knee pain.
Ur not alone xxx
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@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 🙌🏻
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@Hairobsessed123 I hope you have a long and fruitful remission too
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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.
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