Struggling newbie

Posted Sun 18 Jul 2021 08.25 by Mandyren

I don’t know where to start really but found this forum after sitting here crying and not knowing what to do. I was diagnosed a couple of months ago after a sudden onset of widespread infected psoriasis. Although I have had psoriatic arthritis for a few years Ive never had any skin involvement. Anyhow, I was really ill and was treated for sepsis. All very traumatic. I was discharged home a month ago. Still haven’t seen a dermatologist but my rheumatologist is doing her best to help me. I’m going to be staring Cosentyx whenever that gets delivered!! I’m struggling with it all. My scalp is covered. And I have lost nearly all of my hair on top. I’m devastated as i have/had long red hair. I’m am having to cover my head when on zoom meetings etc. I only went back to work last week (luckily still at home) and spent most of that time crying. All my skin is affected including in my ears. But the worst is the soles of my feet. I can only walk a few yards. They crack and bleed and look a mess. I tried to go to the supermarket but I realised when I parked that I wouldn’t be able to make it into the shop. Could I get a disabled badge?? Sorry I’m waffling but I have no one that understands. So this morning I’ve had a complete breakdown as I hobbled to the kitchen to make a cup of tea. I looked down at my badly affected legs and feet. And I can’t come to terms with what has happened to me in such a short time. So sorry for offloading. But just sharing has helped.

Posted Sun 18 Jul 2021 14.34 by Jan

Hi Mandyren. I wholeheartedly sympathise and understand. I'm newly diagnosed with palmoplanter psoriasis and plaque. Feet pain is emmense. Pain relief doesn't do much for me.....I'm on enstillier and flexetol heal balm which helps. I find when the pain gets too much to bear I soak my feet in tepid water, a small amount of dead sea salts with a squirt of almond or olive oil and a few drops of lavender oil for comfort. Moisturise all day and night especially when it's painful. It's so hard and some days are especially difficult when it's so painful but try to find ways that give relief. And confide in someone that you trust and who cares if you have a sunhat on in your zoom meetings and your feet in a bowl of water!!! Take good care.

1 Posted Sun 18 Jul 2021 15.08 by Mandyren

Thank you Jan. I’ve accidentally pressed to report your post!!! So sorry. Thank you so much for all your tips. I will try them. I was given a tin of enstillier which for me isn’t making any difference. I have so much skin affected I don’t know which is the best area to use it! But will def try everything else. I agree with the foot pain being immense. It’s affects every living activity.

Posted Mon 19 Jul 2021 11.50 by PsoAdminMod (edited Mon 19 Jul 2021 11.51 by PsoAdminMod)

Hi Mandyren, Amber here from the Psoriasis Association. Firstly we're very sorry to hear about your stay in hospital and the difficulty you have had since your diagnosis of psoriasis. We know it can be very challenging to cope with a sudden onset of psoriasis, particularly when mobility is affected. I wanted to reach out to let you know that we have a helpline which you are very welcome to get in contact with if you would like some information, or just someone to talk to. You can reach us by phone on 01604 251 620, email at mail@psoriasis-association.org.uk or WhatsApp on 07387 716 439. I do hope this helps and I wish you all the best with your new treatment. Best Wishes, Amber, Psoriasis Association

Posted Mon 19 Jul 2021 15.22 by Mandyren

Thank you Amber. That’s just what I needed to hear. So much so it made me cry - again.

Posted Wed 21 Jul 2021 16.55 by Spotty Maldoon
75 year old teenager with an angry elbow

Spotty Maldoon enters the debate. 75 years old and after five weeks of agony and finally getting an appointment with the practise nurse and doctor (yes a real one)….it’s psoriasis on one elbow now possibly one shoulder and possibly an armpit.. Pain, soreness needle stabbing sensation and seriously disturbed sleep. A Coeliac leading an otherwise excellent retirement. Fitness & exercise good. Excellent nutrition and a stable weight…. Hearing impaired and serious loss of sight…glaucoma, cataracts and AMD. Beginning to wonder what next?

Posted Wed 21 Jul 2021 17.10 by Mandyren

So sorry to hear what you are going through. Sadly I am so newly diagnosed I don’t have the experience to give you any advice Getting in front of a real Dr is a good start! Try and see someone with an interest in Dermatology or an actual dermatologist. Sadly this isn’t easy in my experience so I have had to make a private appointment. It seems to have come out of the blue for you like it did for me. It’s hard to come to terms with when you have seemingly been leading a healthy life. There’s a lot of good advice from people on the forum. I’m sure you will find some helpful tips and pointers.

Posted Wed 21 Jul 2021 17.23 by Spotty Maldoon
75 year old teenager with an angry elbow

Thank you…I was pleased to get Spotty Maldoon as a user name. Pete & Dudley would be so pleased.

Posted Wed 21 Jul 2021 18.19 by Mandyren

Hahaha excellent! 😂

Posted Mon 2 Aug 2021 04.01 by Adjustgutflora

Mandyren and Spotty Maldoon, thanks for your stories. I have mentioned my experience elsewhere on the forum but will again. I had psoriasis, fairly widespread for a long time and in 2018 I was getting rundown I think, and it became as bad as ever. I had been reading about gut bacteria and their association with the skin among other information and started having kefir each day, about one and a half cups. It took some months but I gained an almost complete clear-up apart from my scalp and few spots here and there. Kefir is fermented milk, like a thin yoghurt originating in the Caucus mountains. Look it up in Wikipedia, there's a cute story about how it came to be available in Russia. Things like kefir are worth trying because there is generally no downside apart from a bit of expense. Here in Melbourne, Australia, the supermarkets also have a Swedish version called Filmjolk which seems to be very similar.. The benefit I apparently gained may have been partly due to less stress when an unsatisfactory work situation came to an end but I find it hard to believe that the kefir did not play an important role as my psoriasis has rarely been as good as it is now.

Posted Mon 2 Aug 2021 09.08 by Mandyren

Hi adjustgutflora Glad things have improved for you. Thank you for sharing your experience. I will do a bit of research on it. As you say, nothing to lose at this stage. I had to pay private to see a dermatologist as the NHS hospital said they weren’t taking New referrals and it would be at least 3 months before I would even get a call to arrange an appt. But the dermatologist really wasn’t any help. She thought I had paradoxical psoriasis from the adilumumab I was on for psoriatic arthritis. No treatment offered or anything 😓.

Posted Wed 4 Aug 2021 08.49 by Adjustgutflora

Gee, Mandyren I do admire your resilience. It can be so hard when the medical people don't seem to have anything much for us. I certainly have been very weary of trying new things at times and I think I would have benefited from talking to people like those of the Psoriasis Association to pick myself up and soldier on. I'm sending you warm wishes for your struggle and hope for a breakthrough for you.

Posted Sun 15 Aug 2021 17.23 by Terik

Hi mandyren, sorry to hear you're struggling. I've found using a thick moisturiser ( my derm prescribes Aquaphor) and then wrapping my foot in cling film overnight helps a lot to soften the skin. I don't do it all the time, just when it's cracked and particularly painful. I had high hopes of a nutritional regime changing everything. About 2 years ago I did a very strict elimination diet over 6 weeks, and my food now is conciously "nutritionally dense", absolutely much healthier, but I can't say it's had any beneficial effect on the psoriasis, sadly.

Posted Sun 15 Aug 2021 18.01 by Mandyren

hi Terik. thank you for the clingfilm tip. i might give that a go! theres very little clinical evidence of diet or supplements altering the course of autoimmune conditions, sadly. Any ‘research’ that i've read hasn't been carried out robustly and with dubious methods. But following a healthy diet has many other benefits especially as our condition can be linked with heart disease.

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