Hi everyone, Im Steph from cornwall in the UK. I am currently struggling with both the psoriasis and the psoriatic arthritis. It’s really getting me down lately. I feel like one big ugly scabby lump.
I have had the psoriasis since I started work at the age of 16. I’m now 49 and have never managed to get rid of it. I have tried numerous creams over the years but nothing seems to work. I was dx with the PsA a couple of years ago initially in my hips and then both knees. I’m currently experiencing pain in both wrists and hands and think that will probably be dx with the PsA next.
I also have ME which I have had for the last twelve years and have over the years been housebound and bed bound. In the last eighteen months I have improved a lot and now am able to do a couple of hours voluntary work each week. Since christmas I have had flare up after flare up of the ME and the PsA. My psoriasis is probably the worse that it’s been for about fifteen years or so. I think it’s probably all stress related as hubby is currently awaiting a kidney transplant and has just started dialysis. I am scared stiff as to what the future will hold for him and us all as a family
So that’s me . I am actually quite a cheerful positive type of person normally believe it or not. I am just feeling ugly and exhausted both inside and out at the moment. Also it’s the anniversary of losing my Daddy today which even after eight years I am struggling with. Anyways thank you for reading this far if you’ve managed to .
So sorry to hear all your woes. You surely do have a plateful right now. And my sympathy, too, on still struggling with the loss of your pops. Life can be so tough.
Seems like you’ve got to get some different treatment for both your P and PsA. Are you under the care of a rheumatology specialist? A dermatology specialist? Both? (Neither??) I’m betting one of our UK moderators will be in touch with you soon about seeking out good treatment on your side of the pond. You really do need to be on a course of treatment to stop both diseases in their tracks so you can get back in the swing of things.
My best wishes to you and your hubster as he awaits his kidney.
Sounds like a very tough time for you and your husband recently. I hope all goes well and that he gets his transplant soon. And also that good memories of your Dad will help with the sadness of the anniversary.
I’d imagine that having ME, psoriasis and PsA is quite a number. For me the fatigue component of PsA is the most consistent challenge and I guess that goes with ME too(?).
It’s amazing how cheerfulness can happen despite difficult circumstances. But wonderful. And at the same time your exhaustion and so on are quite understandable. I’m in the UK so if there are any questions you have about treatment protocols then I and other UK members may be able to help.
Very glad you’ve joined us Steph. Maybe I’m grabbing at straws but I wonder … just wonder … whether getting PsA under control might help with the ME too. Stranger things have happened! A big welcome to you!
So sorry about all your difficulties. You are dealing with so much. No doubt the stress is making your PsA and PS worse. My only suggestions medicine wise is betamethasone diproinate. It made a huge difference in my skin, if you haven’t already tried it. With your sadness over your father, I can really relate. I was my dad’s caregiver for his last eight years. He died a year ago. The pain is raw and intense. A grief counselor has been tremendously helpful. I hope you know that many people are thinking of you. You will be in my prayers, as will your husband. My husband is a live kidney donor. 9/2011 he donated a kidney to his sister…she is still doing well. I hope you find a donor soon and experience the same success. ️ Peg
Misunderstood from the title and was going to say go for it. I have two new shoulders and love them.
I concur with getting the PsA under control and ME as others have said. But then that’s what we ALL want to do😀 but with the full plate you have that’s going to be a challenge. I’d make a big pitcher of lemonade and sun tan. Even slathered in sunscreen it will help the p . Then get some candles some great jazz. (this is a perfect time for miles Davis and his version of “So what” Take a long hot bath loaded with Epson salt and visit with Dad. It’s should if nothing else help the P. Oh while you are at it remind yourself how lucky your husband is to have a spouse gets it but knows to keep going. Glad you are with us.
Hello, Stephanie, I’m so very sorry that you’re going through such a difficult time. I aksed a friend of mine recently if she had a magic wand that she could bring over to make me feel well, and she replied, as anticipated, “no.” I’ve decided to look for fairy dust instead, and have found quite a bit around the house…unfortunately, I have a bad feeling that it’s just plain old house dust…oh well, hope springs eternal. I’m 65 and have been struggling this with illness, misdiagnosis, needless surgeries, etc. since my early 20’s. I can assure you, that while magic wands and fairy dust are in short supply, hope, support, prayers, and the love of others are in abundant supply. Please don’t hesitate to ask for help whenever you need it, from whomever you can receive it. You’ll be in my thoughts and prayers.
Hugs Steph for the anniversary of your Dad. Always take time out to have a chat with him. I do that lots with both my Mum and Dad and lots of other people who are sadly not here anymore. It allows me to remember ‘happy’ memories and shows me how lucky I was to have them in my life. That helps and gives me more courage to just battle on. And it feels better when you’re thinking you were actually fortunate.
And hugs for the rest of it too. I had horrid skin psoriasis as a teenager but it did go eventually for me through something called ‘reverse Keobner’s syndrome’ when I very badly fractured my shoulder. Not that I would advocate that as a cure under any circumstances! What does you dermatologist say about it and what’s his or her plan for treating it? My experience of skin psoriasis is that it can always at least be made more comfortable even if it’s still there. One cream that did that for me was ‘diprosalic’. Available on prescription. It didn’t get rid of it but certainly made me feel a lot more comfortable. If that’s one you haven’t tried ask your doctor about it.
Personally I think stress affects lots of things psa included. So maybe if you have the energy try learning meditation maybe on line if you can’t get out. Just a thought. Given everything you’re facing presently it might help to lessen just a little your very understandable worry. When I get overwhelmed - it happens a lot -I try very hard to just live in the day as that sort of contains things a little more. Otherwise or maybe additionally a good counsellor can help. I did ‘therapy’ after my Mum died (following seriously awful probate issues with my step family) and I found it incredibly helpful. It is available through your GP although I went out and chose my own counsellor - costs around £45 a session. But I thought it was worth every penny.
I do hope your husband’s kidney transplant comes through quickly and that he’s easy to match. And I hope you’re having a good day today. In Kent the sun is shining so I hope it is in Cornwall too.
A familiar feeling! It is hard to be cheerful when so many things are a drag at the time! I hope you get good results when you get started on some meds.
Sorry you are going through a tough time about your dad’s passing…hang on to the good memories…my dad left us 12-1/2 years ago and I still think of him every single day! I KNOW my life would be better if he were still here!
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️ Peg