Psoriatic arthritis and fibromyalgia

Kerri36

Hi, I’m new to this group don’t know if being here will help but I have nothing to lose, so I have psoriatic arthritis and fibromyalgia I’m 37 and was diagnosed at 35, before this disease I was a nursing assistant of over 10 years, so as you can imagine life has changed drastically I have gone from running up and down 3 floors to unfortunately now wheelchair bound, I’m struggling to except this is my life now. My partner has now become my caregiver and I’m not able to do much for myself, I have daily thoughts of not wanting to be here anymore, I just can’t imagine life like this for another 40 years I have been on every injection and medication possible still trying to find one that works for me :( I feel so alone

HelenS

Hi @Kerri36 Thank you for posting on the online community

I'm sorry to hear how you are feeling, getting a diagnosis of arthritis including for fibromyalgia can be extremely daunting, and you have come to the right place, hopefully our members can offer useful advice.

I know you were diagnosed 2 years ago but I've included the following link to some information on being diagnosed, that does give some useful help

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

The following pages on our website on fibromyalgia you may also find useful. Although there’s currently no cure, there are treatments, therapies and self-management techniques that can improve your quality of life, and you don't have to struggle.

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

Below is a link to a thread from a member who also has fibromyalgia & arthritis, where other members have offered advice

https://community.versusarthritis.org/discussion/56359/struggling

Please do have a look at our our other discussions, Living with arthritis is one of our more popular discussions, hopefully some of our members will comment, please do reach out here, there is always someone listening.

Take care

Helen, Admin

frogmorton

Hi @Kerri36

There are a fair few here with PsA and Fibro so I promise you you are not alone anymore. We are all here and we all understand pain if there's anything we can do to help we will. Most of us lead active lives like you before acquiring our conditions and many many were diagnosed far too young like you. I myself was just into my 40s, but some in their teens.

I wonder whether your rheumatologist has looked at your meds lately in case there is something they can do. There are so many DMARDs and now biologics out there. I hope you haven't exhausted them all.

Ring the helpline Kerri, I did they were just so kind and waited while I bawled quietly.

tel:0800 5200 520

My advice is to keep talking keep posting to us. You can help others here sharing your own tips and experience your life absolutely has immense value. ((()))

Toni xx

Kerri36

Hi @frogmorton

Dthank you for replying to me, I wish I would have found this group sooner, since my condition started late 2019 we was then hit with the pandemic so was on my own trying to figure out what was going on with me, then I found out, since then as I said my mobility was a major change as I went from running to wheelchair it has been totally devastating I only had joint problems no skin condition as d then that hit too 🙁 my hands and feet get very sore cuts on them which makes using my hands so difficult along with the swelling it really is awful 😭my feet are very sore the usual pains toes and the back of my ankle but also the bad plaque on my heels(I never had this before this condition) they are yellow, unfortunately the dermatologist said they have run out of options as I had tried everything they could offer and told me I need to see rheumatologist again, which I have (that’s been another battle altogether) I am now on another biological treatment along with a DMARDs that I had been on previously for a year with no benefits at all! So far I have been on this new treatment for 5 months no improvements 🙁had to go to hospital recently for 3 days for steroid infusions which had no effect but did cause a lot of added pain of getting to and from 3 days in a row I’m just honestly so low I just feel like I can’t live like this for another 50 years I struggle very bad with my mental health now, I have been a prisoner in a flat for over 2 years now only out for hospital appointments that won’t come to me, I can’t except what’s happening to me how can I move forward ( not expecting you to have that answer ) you have your own struggles but I just don’t see life getting any better 😭 thanks for listening feels kind of nice to just say what I’m feeling sorry for long message

kerri xx

GillC64

Hi @Kerri36 so sorry to hear you are going through all this. Such huge changes in a short space of time and still not under full control yet. I know our Community will be there for you with compassionate support.

@frogmorton is giving great advice. Keep connected and keep sharing. People do care.

Best Wishes

Gillian (moderator)

frogmorton

Hi @Kerri36

I'm just glad you've found us now. Better late than never. This is something you can do you can talk to us lot.

You've been through so much and of course the future looks terrifying, but we are all on the same path with you and understand. Please do let of steam every one of us does it.

Your PsA sounds to be really bad and debilitating. I am very pleased you are now back under rheumatology and hope they are a good team? If so they won't stop trying to find the right drug combination for you.

You can't expect yourself to accept this sort of huge change in such a short period of time. Not many people could just suck it up Kerri. One thing you can do is be kind to yourself possibly consider some support for your own mental health. I can't remember where i've seen it, but depression and long term conditions understandably do go hand in hand.

https://www.versusarthritis.org/news/2021/september/arthritis-and-depression-what-you-can-do-about-it/

I've finally found it.

Keep talking sending you huge ((()))

Toni xx