Hello newbie PsA diagnosis here

Hi new girl here, have been told for 22 years I have fibro. Last week diagnosed with PsA. I knew this pain and associated symptoms weren’t purely fibro. I was on a better day in my rhumey clinic appointment ( typical!) so declined the 2 steroid injections as I’d also just started HRT and have to be careful of migraines. . All that happened was a diagnosis, bloods and told I had another big wait to see the Rhumey specialist nurse. What can’t the consultant do that the specialist nurse can please? Was told my PsA may be like this years or go wild and get much worse. In a Bad flare I’m hitting 10/10 pain wise can’t move as pain pounds in head/jaw every tiny movement until I get the pain killers in. It doesn’t always work and still stiff, exhausted and sick bloated tum. Pain killers don’t take that bit away. I find explains that at work difficult. Flares are mostly weekly weak spot in scapulars, shoulders, neck, jaw , & hip & buttock pain with now can’t abduct out my right thigh. Only work 2 days as a nurse been reducing over years due to pain and migraine and generally falling apart! and both those work evenings I’m in a flare. I’m confused as to whether I just get cracking with DMARDS or sit and wait. Will I even be offered them? The stiffness in my upper back, ribs right shoulder blade , neck, jaw head is mega today.it’s prob because I was extremely scared other night driving in the dark, so my body is rebelling! Hope the nurse appt isn’t a further 8mths away like the consultants. I’m very reluctantly going to consider DMARDS if the nurse says let’s get cracking. I also don’t relish more X-rays especially my lungs pre - treatment. Why do I need my lungs X-rayed please? I have a lot of cancer in my family and spent my youth having tons of jaw X-rays so not keen..I love alternative therapies and also wish to try turmeric, but not silly and if my bodies attacking my bones (already have a swollen ankle/foot) then of course I have no choice but to try DMARDS, despite all the 100’s of bad reports.& Dnt want to put my liver kidneys through horrid drug therapy.,I'm scared like many on here . Unfortunately u get a biased opinion from the consultant as they just want results no matter quality of life.. It’s not there body that’s going to get wrecked by horrible drugs. The alternative is carry on in pain then! and maybe also your bones will deform. Can’t imagine working and having to put up with pain AND flipping side effects. Anyone also have advice for ill health retirement, is this even allowed with arthritis/& migraine or is it only for cancers etc? I maybe should consider this or benefits , but it won’t cover my existing wage, mortgage etc & hear process is v inhuman & v stressful , ie can you walk, but no mention of “ & how do u feel that evening?” I defo can’t do my hospital ward part of my job on DMARDS with so many Covid patients in very close proximity. Thank you for this group & my waffle!! much appreciated as today have the joys of flare , but did the shoulder stretches on here via YouTube on my TV fire stick and felt creaky and ancient but at least I did it!! Sending hugs too all xx PS: Thank to lovely Sarah from VA helping me on the phone this am , cd of chatted to you all day , you calmed me down a lot and made me laugh which is the best medicine of all! 😄😘 xx

Comments

  • Hi @Bordergirl

    It's lovely to hear from you- welcome! I'm so glad that you came here to have a good old type rant (that's what I like to call it). It's difficult when you clearly have so much going on and you sometimes feel like no matter who you speak to or how many times you say it, you feel like there is just not solution. You have a lot going on, so let's see if some of us can help to point you in the right direction.

    A diagnosis of any kind can be daunting and scary, sometimes a lonely place to be, but it is also a positive as you now have a starting place! Here is some of our information on PsA:

    You mention that you are unsure about DMARDS as most of us are. It's completely normal to feel overwhelmed with the amount of options available- especially as people have different opinions and experiences of medication. People often need to try a few different treatments before they find something that seems to work for them. DMARDS are not painkillers but they will help to reduce the pain that you are experiencing as they reduce the level of inflammation. Here is a link to some information:

    You also mention alternative treatments- here is another link for you:

    As for retirement, I'm not sure where you would stand on that one. I know that there are plenty of people on the online community that have experienced or that are currently looking into something similar themselves so I'm sure that they would be happy to provide an input.

    We are a very friendly bunch of people here who are always willing to listen, offer advice or just have a general chat so please feel free to keep visiting us. We are all with you on this journey, so please keep us informed.

    Take care,

    Sarah

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