Posted Wed 17 Jan 2018 4.48pm by Shelleyyy:)
Ive had scalp and guttate psoriasis for 7 years.
This is my first time posting on here.
I'm looking for a little advice...
How do you all keep yourself feeling positive each day living with p?
I've had p for 10 years (I'm 21) and its always brought me down.
2 years ago I had the worst flare up ever. It covered around 75% of my body. Including my face.
I was so depressed, I barely got out of bed or did anything for close to a year. I had been signed off from work due to me not being able to face the world looking the way I did.
I was finally put on ciclosporin after about 8 months which cleared it up very well and it stayed at bay for a long time.
Recently, however, its starting to come back..
Spots are appearing everywhere! (I have guttate and scalp p) and 2 weeks ago, it started flaring up on my face (which is my WORST nightmare!! ) I can't deal with this again. I'm scared of it getting as bad as it did before! I don't want to fall back into depression but I can feel it coming. I wake up and look in the mirror and sometimes just wish that I didn't exist. Dramatic I know...but it really knocks me. I hate it and I just feel like crying.
I can't cover it. Makeup makes it stand out more. Nothing will shift it!! :'(
On top of everything, I've now got arthritis in my spine and knees.
HOW do i stay positive? It effects every aspect of my life and I just want it to end.
Thankyou for taking the time to read this.
Posted Thu 18 Jan 2018 1.22pm by Karl
Your not alone l pretty much have been feeling the same way for the last year,my p started when l was 17 & lm nearly 55 now but in the last year its got 70% worse & it's got to the stage where l think there's no point in trying to control it anymore as all the different prescriptions that l have been given make little or no affect in the long term & like you it's at the stage where it controls my life & also find it hard to try & remain positive when you know that there's no cure for it & l totally understand what you mean about it affecting all aspects of your life as it's the same with me
Posted Thu 18 Jan 2018 1.33pm by Karl
I was told many many years ago by a specialist dermatologist that P was'nt hierdtory which l know now is not correct,l'v met people before where the son or daughter has P & l met someone in July last year who has P & her son & daughter have it in a serious way & even also her daughters daughter has it in a serious way so it has to be without a doubt hierdtory
Posted Sun 21 Jan 2018 4.44pm by joygirl
I have had p for several years. I recently started using an antifungal cream that contains Clotrimazole ( Family Dollar $4 ). It has caused my fingernails to completely regrow and helps the psoriasis. For a quick result,, this is what I would recommend for you : 1) Take a long soak in the bathtub and remove as much of the flakes as you can 2) apply a good moisturizer like aveeno or eucerin 3) go to tanning bed starting at only 4 or 5 minutes DON'T BURN YOURSELF!. that will only set you back. You should go like every 2 or 3 days, Increasing the time very slowly. Please be careful as tanning is not that great for you but neither is being unhappy.
Posted Tue 23 Jan 2018 8.39am by Barbara
It is an absolutely awful thing to have to live with. I’ve had p for most of my life in varying degrees of severity and at the moment it’s getting bad.
You might consider referring yourself to talking therapies for some counselling to help with the depression and keep seeing your dermatologist who will try lots of alternatives to help you.
Some things that helped me are reminding myself that no one has a perfect body and I would always make sure my hair looked good and I dressed well. This boosted my confidence a bit and I would just get out there and live my life. People around me got used to seeing me with p so it became normal to them. A big smile detracts from it too, when I acted like it didn’t bother me then others followed suit. (I got so good at acting I could win an Oscar! ) Hope this helps a little bit, I know it’s not easy and sometimes it’s ok to just hide from the world for a bit, but don’t allow it to steal your life x
Posted Tue 30 Jan 2018 12.46pm by Atul
This is my first post I have joined today but let me tell you that living with p for last 22 years I was only 19 when got p (85% on my body even on the face) in the early years I tried lot of treatments but non was 100% effective.I was feed up with all the treatments and even felt like ending my life for this but slowly slowly I have excepted the reality of life and got used to all this and became internally strong .So I advise you be strong and face what is their in life with hope some day a permanent cure well be there.
Posted Sat 10 Feb 2018 9.11am by Bloodyme
Just registered here and this is my 1st post. I've had P for the last 32 years. It started when I was 30 and within the year I got married and I'm now 62. I've also tried various topical treatment prescribed by dermatologists, oral treatment too and 4 sessions of expensive PUVA but did not totally cured my P. When I was still working, I used to wear long sleeves shirts but since I cannot cover my hands, I always feel embarrassed exposing my hands. Sometimes 1 or 2 reddish spots would appear on my face just below the hairline and I was afraid that others may suspect that I have Aids. Over the years I have overcome the embarrassment and was just living life day by day although I miss going to the beach (we have beautiful beaches in the Philippines) since I cannot wear shorts the whole time I'm there so what's the use of going to the beach. My social life has also been significantly curtailed even today. Years after my P appeared my father and mother in-laws also had this skin condition making me wonder until now that could I have acquired this from my better half since my own family members have no history of P? I know that P is not transmitted thru sex so I just attribute it to stress. I'm just happy to know and still praying and keeping my fingers crossed that my wife and 2 daughters and their future children will never experience this skin affliction. Two years after I went to full retirement, I was hoping that since there are no more or less stress in my life, my P will go away and it happened last year. When going out, I always wear walking shorts as if it's a new fashion to me and was planning to ask my family to go to the beach but it was a short-lived happiness. Only after a few months, my P started appearing on my legs then it spread on my body and arms and hands and no amount of topical treatment can cure or even lessen it. I'm not giving up and just staying positive and avoiding stressful events in my life for I know that while you're still alive there's still hope. I just hope that within our lifetime, science can one day produce a permanent and inexpensive cure for psoriasis.
Don't lose hope Shelley!
Posted Sun 11 Feb 2018 11.17am by jake_70 (edited Sun 11 Feb 2018 11.18am by jake_70)
I've been struggling with psorisis for many years now. I've found some solutions with my reseach which I'll be sharing with you guys
I've also just registered and wanted to tell you something.
I too have been struggling with psoriasis for many years now, but the last 1-2 years have been the worst. But my situation is not as bad as your's (as you're describing).
I just wanted to tell you about the power of observation. Observation of yourself. Depression is simply not accepting reality as it is. You are not accepting yourself AS YOU ARE. That's the problem.
I know, it's not a small thing to accept and love yourself fully especially with our disease. But I see this the only way out.
Think about it. You are not here forever, are you? Why should you spend this time in your bedroom, depressed about your condition? Why should other people's opinion matter so much that you miss the opportunity called LIFE? Really spend some time contemplating this.
And also, look into meditation. It might be one of the most important habits that you should develop. If you're interested, I can tell you why.
Posted Sat 17 Nov 2018 11.59am by Roses737
Hello, Im now 45, and have psoriasis for around 30 years, quite severe always, but never on my face. I have always got on with life, although could not enjoy like my friends, in summer months when boiling hot I would wear long sleeves etc.. as I’m very self conscious, but I have had a good life , married with a son , who unfortunately has just developed scalp psoriasis, and I’m praying it stops there. Recently getting joint pains which I expected at some point. Just been made redundant from a company I served 28 years service for, my confidence is now at a all time low and I’m terrified I will be unable to find another job, and my psoriasis is covering around 35% of me. I have always battled with feeling despressed, never been to the doctors and discussed that issue, but at the moment I can’t seem to find happiness in anything.
Posted Mon 19 Nov 2018 4.45pm by Barbara
I think you have done so well to get on with your life in spite of psoriasis....work, raising your son etc. It’s not easy, I have had quite severe psoriasis for most of my 59 years.
I’m not surprised you are feeling low having worked in the same job for so many years and now it has come to an end. I’m sure you have loads of valuable experience from those years though and that will help you find another job. Get some advice on updating your CV and why not do some voluntary work while you are job hunting? It has really helped build my confidence to do this, there are some lovely people who need a bit of extra help and I find real joy in it. You may benefit from some form of counselling and I suggest you either self refer or talk to your GP who will be very understanding xx
Posted Fri 11 Jan 2019 9.17pm by Clare-lou
Hi there Shelly... hope ive spelt that right?
Im also suffering from this
I had a massive flare up last Friday
Not been out since it covers 90 percent of my body i spent yesterday with coconut oil on my scalp and scraping it off ...lots and lots. My elbows and legs are red raw. To top that my relationship.. 3 kids is broken down because i feel like a lepour. I cant go out in public as i always have to say its not contagious
Ive tried so many creams. Salt water.. seaweed. Hemp seed oil. Im still covered.
Given up the will to live with it tbh. How do you stay positive?
Posted Sat 12 Jan 2019 8.09am by Barbara
I agree wendyloish, we could do without this. I hope nobody falls for it and gives out any confidential information.
Posted Sat 12 Jan 2019 4.43pm by OhNo_NotAgain? (edited Sat 12 Jan 2019 6.47pm by OhNo_NotAgain?)
Unfortunately the moderators do not seem to work over weekends . Although I reported 3 posts from this same person on Friday morning and they were finally removed this morning.
I reported this one overnight last night, and yet it is still not removed.
Mid-week I have observed that most reported posts are removed in a couple of hours.
However, having said that, I would NEVER give any personal info, a phone number or an email address to anyone on a forum - you have no idea who anyone is, even someone offering to help, or sell you a UVB sun-bed . I am surprised when people do such things.
Some forums have automatic routines to detect and redact email addresses and phone numbers although there are ways around it.
I also take some of the advice and personal experiences posted here with a large pinch of salt also. I find it strange when some posters apparently prefer to take the advice of anonymous unknown strangers than that of their own medical specialists.
There is certainly no point at all adressing any messages directly back to the sender..