New here and need some advice

Posted Thu 23 Jun 2022 13.56 by gl8 (edited Thu 23 Jun 2022 15.38 by gl8)

Hi, I'm new here with likely diagnosis of psoriasis, and also suffer with health & generalised anxiety so am freaking out at bit right now, and in need of some knowledge. First I'd like to share my backstory... I'm currently in mid 30's, and looking back and thinking over my past, I'm now potentially putting 2+2 together… I have been to the doctors on a handful of occasions since my late teens or early twenties with some skin complaints. Back then I used to get scaly dry skin in my ears, I never knew and dont entirely know for sure what that is/was, the doctor just gave me some cream at the time (this has been 95% cleared up for years now). But in addition to this I've certainly had the odd small single patch or two of red dry skin often on my ankles that will have been no bigger than maybe the size of a pea - these would come and go occasionally and seem to always clear by themselves so never bothered me. Last year I got a pink scaly patch that appeared on my shin and become larger, more predominant over a few weeks. This got to about the size of a 10p coin - |I dont recall noticing anything quite like this before, and I ended up going to the doctors thinking it was a maybe a fungal thing. Here's a picture: https://ibb.co/bBPvSTn I was referred to a dermatologist who didn't give me a diagnosis of anything and prescribed me two different creams to try to clear it, I think one was a fungal cream the other a steroid of some sort - which ever one worked it seemed to do the job and two weeks later it was pretty much gone. A couple of months later another one of these things appears on my other shin - I used the cream I had before - and it went away again after a few weeks - so again I didn't think much of it. I do also get a bit of pink/reddish patches and dry skin around the elbows at times. Looking at pictures of the skin patch in question now and comparing to pictures on the internet it looks like psoriasis to me, but it surprises me that I could have gone through both a GP and dermatologist without them both taking one look and saying "that's Psoriasis" - which makes me question things and causes further confusion. As an aside I also get a scaly dry scalp which affects my face around my beard (been told Seborrheic dermatitis) and get kilaris pilaris on my upper arms, because of the dermatitis and a spot on my back that didn't seem to be going away, I went back to a different dermatologist last year and I showed him the picture and he took one look and said "looks like you've also got a spot of psoriasis as well my dear man", very nonchalantly. Now this second dermatologist I will add didn't give me much confidence in general, as I felt he barely took any time to look at anything, for example he glanced at the spot I mentioned from his chair about 1.5 meters away for all of about 2 seconds and said it was a cutaneous horn and froze it off - I'm not certain about that or how he could have such good eye sight to make that judgement from that distance but who am I to question… When he mentioned psoriasis also and he didn't say anything, not knowing better I had assumed it was just another skin condition to add to the list, was a cosmetic thing only, and since I'd only had a few small patches coming and going nothing to worry about… Fast forward to this year and I've been having a lot of physical symptoms ranging from some episodes of feeling the need to urinate after having already gone, chest tightness (likely due to my high anxiety/stress which I've suffered with for years), arms and legs feeling a bit jelly like, burning/tingling sensation of the skin in may hand and in particular between my shoulder blades, some stomach tenderness (put down to IBS), and a lot of back stiffness in my lower back (usually triggered if I lay on a harder fat surface on my back or front for a period of time - it feels like it sort of stiffens locks up and takes me a minute to get up, and then quickly dissipates) often in the right flank in early hours of the morning or lower back, and weird pin point spots around my body that if I pressed on would feel tender or bruised. I've been on a journey for the past 8 weeks in seeing doctors, urologist, spinal surgeon and now a Rheumatologist and had abdominal MRIs (for urologist) and back MRIs last week (spinal surgeon and rheumatologist) and find out next week when I follow up. I know a lot of the above could be put down to anxiety or different things... Anyway so fast forward now to last week and the Rheumatologist asked me if I had psoriasis. I actually said I'm not sure, and recalled that I think the dermatologist last year had mentioned it, and I found it an odd question at the time. So when I got home I Googled it, and since learned its an auto-immune condition, and now understand why he was asking. I then read on the internet that psoriasis can limit life expectancy, and have since spent hours on Google getting further more anxious. I've read such conflicting information, everything from Psoriasis and Psoriatic Arthritis may lower average life expectancy by a few years, right down to one article which stated that those diagnosed under 25 have a life expectancy of just 60 and one that said those with earlier diagnosis could have life expectancies shortened my as much as 25-30 years! - If I have psoriasis (which is what the last dermatologist said he was fairly sure it was) then I now realise I've probably had it albeit very minor in its skin presence since my early twenties and now I'm freaking out about it all, quite confused what to believe or think. I'm assuming I do indeed have psoriasis, given the odd patches I've had and the elbows and comparing pictures online. I appreciate that my story may be minor compared to so many others experiences, and do not wish to scare monger or be inconsiderate of others, but would appreciate input and knowledge from this community from those who are well educated and know far more about this condition and the prognosis and outlook, especially for someone like me in their mid 30's, if psoriasis is causing my physical issues and I have spondyloarthropathy/arthritis starting up? I have a young child and another on the way its crushing to think I may not be able to have a full life or that I may be genetically passing something along :(

Posted Thu 23 Jun 2022 14.32 by SharonG

So sorry to hear that you are suffering so - as are many of us in these forums - it is all about trying to manage it as best as you can - not a great help I am afraid as there is no cure - I cannot believe that the powers that be allow us to suffer this debilitating condition - I have had ppp - Palmoplantar pustulosis (PPP) - is a rare, recurrent inflammatory disorder. Affected individuals develop small to large sterile blisters filled with a yellow turbid liquid (pustules) on the palms of the hands and/or soles of the feet. The pustules may be painful and cause a burning feeling. I have had this for over 20 years but has gotten worse over the last few years to the point that it’s painful to walk. I just keep it as well moisturised as I can - the hot weather really doesn’t help - it is worse on my feet. There is a lot of very good advice on here if you have the time to search - I have stopped using steroid ointments and creams as it thins the skin which then cracks and bleeds - it’s awful at times. I am 61 and pretty naffed off with it right now 😢 Good luck I hope you find something to give you some respite from it.

Posted Fri 24 Jun 2022 13.01 by Sandie

Sorry to read you are both suffering so badly. I’m 74 and have had my first EVER psoriasis flare-up. As you say SharonG I have to deal with it the best I can and so far I’m getting some response to the topical steroid. Facts: diagnosed at 10 years old, hospitalised for 6 weeks and left with what I’ve lived with since. Only known relative with psoriasis was my mother’s sister. Neither of my children have it and thus far my teenage grandchildren do not have it. I hope that reassures you a bit gl8.

Posted Sat 25 Jun 2022 01.27 by Mary1968

Hello there Sorry to read of your struggles In regards to your comments ......"I then read on the internet that psoriasis can limit life expectancy, and have since spent hours on Google getting further more anxious". **STOP** doing that depressing anxious ridden Googling!!! You could be knocked over by a bus at any age, on your way to the dermatologist office You seem so so worried about dying early, that you forgot how to live in the meantime. Lots of health issues are actually connected to gut and liver health, therefore all your standard tests will come back negative, and doctors will start to call you a hypochondriac. Then of course you have the emotional connections.......For example, when I get stressed or anxious, I also get chest and stomach pains. So I need to find ways to manage that stress or anxiety, so I don't get pains. Normally in summer I do beach yoga, ocean swimming and walking to reduce stress. But very cold here presently and my activities are reduced. Huge amount of work stress to deal with, so I have stopped drinking alcohol, and am tasking herbal formula from my naturopath - combination is working a treat. I bet most of your niggling health issues are connected ways that you haven't thought about

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