Upset
Posted Tue 20 Sep 2016 13.05 by sweetie8216
Hey ,
New on here, not new to Psoriasis though.
The reason for joining, is for the first time since having the condition i want to cry.
My Psoriasis started in 2012 i fell over a cement flower pot which had been moved and i was trying to carry too much so i didn't see it had been moved.
It left a red mark on my leg which to date has never gone away.
This year however my psoriasis has more than doubled, both my legs, feet even my hands small amount on my arms but elbows are quite bad.
Two patches have emerged on my face, have it in my eyebrows, and now i think i may have it on my scalp. As i have done nothing but itch the past few days (no small kids so its not nits lol ).
My legs look dreadful i notice people when they stare and its starting to upset me, never bothered me before though.
This year i changed my diet , no processed food plenty of protein and veg, started weight training again. Even gave up smoking. (Using a vape tho).
I have an appointment to see a dermatologist but its not until 22.12.2016 the wait is that long for an appointment. Have tried so many different creams. For the first time its starting to get to me.
Posted Tue 20 Sep 2016 13.20 by PAsufferer
You are not alone. I have a long list of aloe vera products that I would not be without.
They have literally pulled me from the depths of despair.
Posted Tue 20 Sep 2016 13.22 by sweetie8216
Thanks for the reply :)
I know im not but for a long time now i have felt very much alone but it has never been as bad or accelerated so fast as it has this year.
With the Aloe Vera product is there anything particular you would recommend. i have tried a couple but the problem i have is so far no cream even from the docs has done much unless its steroid based.
Posted Tue 20 Sep 2016 14.42 by PAsufferer
I have a drinking gel that helps with my immune system because I find I get a flare when I'm run down/ill. I have a scrub that removes the plaque, I use a soothing gel to help with itching and soreness from itching etc. And I apply a propolis cream as many times as I need to, to keep my skin moisturised.
I stick to a very strict skin care regime that seems to work for me. It took a month or so for any noticeable results.
Posted Tue 20 Sep 2016 15.32 by sweetie8216
Sounds good especially if it works. I have tried so many different things and sticking to a regime i think today has just been a really bad off day. i had some itching today and made a patch bleed. i cant use the cream i have in the morning as its very greasy and not easily absorbed into the skin. evening regime is more rigid though.
Posted Tue 20 Sep 2016 15.46 by PAsufferer
There is nothing worse than a greasy cream. I feel like people notice me more if I look greasy. My propolis cream I must apply 20 plus times a day!!
I use forever products, full of natural ingredients so nothing irritates the skin.
Posted Tue 20 Sep 2016 22.12 by sweetie8216
I just can't use it in the morning and get it on my work clothes. But do moisturise with something that absorbs better.
20 times a day must be a nitemare and u really do feel for anyone with the condition.
I am concentrating on illuminating foods that can set it off lol. Certainly is a trial and error thing :)
12
Posted Wed 21 Sep 2016 12.33 by PAsufferer
I have become so used to it that I don't even notice. I suppose it's only the same as a none sufferer using cream on their hands all the time?
It definitely is trial and error!!!
Posted Thu 22 Sep 2016 13.30 by Daryl
when you see your dermatologist ask about a tablet called methrotrexate and if you are suitable the best meds I have taken for this condition shame it effected my liver function as I would still be taking them ..Always worse I think for females but keep your head up try not to let it get you down and have you tried dovobet ointment your gp should be able to prescribe that. But it would be down to your dermatologist for methrotrexate as this treatment needs careful monitoring hope all goes well..
Posted Thu 22 Sep 2016 13.52 by sweetie8216
Hi Daryl,
I hope things are well with you ?
Thank you :D.
I have to say its not the easiest thing to live with, the worse it gets the harder it gets too. Some days can shake it off and say too bad wearing a skirt / dress anyway. This week has been the worst as i have started itching again. I cant remember which the Dovobet is i have so many. If its the white bottle with the red top have tried it but cant use it on broken skin. It does work to an extent i got prescribed two others one of which i have been unable to get from the chemist and the other (sorry cant remember the names ) very greasy meant to use twice a day but cant apply it in the morning due to getting it on work clothes.
Thank you for the advise though have quite a wait for Dermatology appointment but just glad now that i have one :)
Posted Thu 22 Sep 2016 15.29 by Daryl
yes thanks honey I have had many years to get use to it 33 but this condition is not only skin deep don't want to alarm you but want to pre warn you that psoriasis can effect virtually any organ in your body. With me at the moment its started to thicken my heart and its starting to attack my pancreas in one way you are lucky as the earlier you get it the more chance you have of this effecting the body in this way you may also go on to get pa which is a type of arthritis but then again the earlier it starts the more chance you have of getting these complications was diagnosed with the pa at 28 had the psoriasis since I was 12 had 8 weeks in hospital to get it under control (they said 2 weeks max) but only a certain percentage get these complications so hopefully you will be ok on that front but if you think your joints are giving you some pain you will need to see a rheumatologist it started in my spine now starting in elbows and shoulders but hey ho life goes on but there is someone on here that thinks drinking the right water will cure all so lets hope hes right lol don't give up hope keep well let me know how you get on and if they do prescribe methrotrexate you will soon notice a difference good luck...
Posted Thu 22 Sep 2016 16.08 by sweetie8216
Yeah i had only read stuff about the skin side of things until Monday when i found a site that explained about other conditions it could cause and i think thats what upset me initially.
Mine started four years ago i had a fall and banged the front of my leg and i couldn't work out why it wouldn't heal. Then a smaller bit above it appeared but like i said the worst has appeared over the past few months.
I read about the PA arthritis which worried me because i already suffer on occasion with Sciatica.
In a way i feel bad for feeling as bad as i do about my own condition as it so does appear others such as yourself have it so much worse. It really puts things into perspective.
Thank you :)
Posted Sat 24 Sep 2016 16.00 by Izzie
Hi there. I'm quiet sure my post won't be of any help, because it's actually the "upset" title that I liked.
I must tell I find you all really brave. You're fighters and this fight is tremendously exhausting, thus you don't let go. Fall on your knees and back again into fighting. Real warriors you are. I hope you are proud of yourselves cause it's one of the most terrible disease affecting each aspects of life. For myself I feel like the leppers of the bible, version 2016... So yes, I'm upset. Tired of treatments, losing hair, which damn clothes to wear, no human contacts, plenty of jobs you can't do, what to drink, what to eat, etcetera. So big up to you all for continuing the combat.
This is my contribution for you being upset. This is your most rightful right to be upset. So be upset but don't let goI... Like me.
I'm sick and tired of all this and do nothing about it since years. Also I couldn't afford none of the treatments... Now I'm a leaving plague, when I go to work I'm closed alone in an office, crying all day long. Everybody stares at me in disgust and say the dumbest things ever, and I'll never have the chance to have a boyfriend again or get married, have babies or to wear a skirt. I know it's silly. But don't let this damn thing brake you like it did to me. It ruined my life and it's not worth it.
I hope I offended no one. It's the first time that I use a forum like this one because I feel so lonely and despaired. It'll changes nothing for me in the end but if my testimony can help someone it will be a nice slap in the face of this disease.
Good luck you warriors.
1
Posted Sat 24 Sep 2016 20.02 by sweetie8216
I am so sorry that you feel the way that you do. I have my bad days then I pick myself up again. I hate the thought that you are shut away at work and cry.... that is awful. Somehow you have to find something to make you smile and something that makes you happy. Life really is too short to be so sad, I actually wish I could hug you.
You need to find a way to hold your head high and the strength inside that says "screw you" and then smile its so empowering. I don't like it that you are lonely and suffering in silence.
I had never used a forum until I found this one and there are so many nice people here. At the end of the day we are all suffering in different ways.
1
Posted Wed 28 Sep 2016 12.14 by Daryl
Hi there Iizzie the problem is not yours its the ignorant people around you there are people out there who see past the skin they see the person behind the skin, do not give up hope of happiness and having children as there is someone out there,i sincerely hope that you find that special someone I don't know what area you are from but try to a psoriasis group who meet often and discuss all topics about the disease being with other people who are going through same as you its not about being brave its about life carries on all the best for the future and I hope you find the happiness you deserve..Daryl
Posted Sat 4 Feb 2017 09.40 by Izzie
Hi Sweetie and Daryl, I really appreciated your words. It felt good for once in a while to be understood. I'm sorry I couldn't thank you sooner. I'm a bit closer of the edge, with more bad things happening pushing me... Anyway. A hug and meeting people would be great but I live in a country/city with no support group. In fact I feel like I must be the only one in this country to live with this condition. Well enough of me. Tell me about you two ? Still upset ? Holding on ? I know that the answer won't be a Yay we're walking on sunshine..., but maybe something good happened ? Even a little good ? I send you a virtual gigantic hug and don't despair, some things really do work if you have a little of time or (normal) money.
Posted Sun 5 Feb 2017 21.45 by sweetie8216
Hi Izzie
No reason to apologise honestl. Its a shame so much is bad for you and i just wish you could find something to negate the negative in your life. i am sure you are not the only one in your country suffering.
For some reason my psoriasis dissapeared off my elbows just randomly. I got so fed up with applying the creams all the time i stopped using all of them except for the Cetraben. My legs look a little better but its still bad on my feet. I had three deaths in the family but no major flare up so it cannot be down to stress.
My hospital referral was a bit dissapointing because it was no where near as bad as it had been when i went to the docs and got the referral. They have given me another steroid cream just waiting the prescription. But the nice thing was the doctor i saw said if it flared upbadly again to get an emergency appointment with the dermatologist.
Apart from that i havent allowed myself to worry about it but then things have been upside down with events and being made redundant. ((Hugs back at you))
I really do hope you can find some positives something to smile about even if you have to imagine a guy in a bikini ... hee hee.. works now and again xx
Posted Thu 9 Feb 2017 21.42 by Ali
Hi izzie,
If you can let us knowwhat country/region you are in then maybe there will be someone reading who can get in touch with you. There are a lot more people suffering around you than you think who may want to contact you.
Posted Sun 9 Apr 2017 21.28 by andymiller101979
I live in Lancashire UK and i am now 36 years of age, was diagnosed as having this when i was about 30 and the doc said it was due to throat infection and i was prescribed all these wonderful cocktails of creams which had to be applied once or twice a day twinned with an emollient and that should have worked, well it did for a while then all came back still using the crams so they change again, for the past 6 years there have been so many things i have tried and had light therapy which only lasted for a week or so and now i have kinda had enough, i work in a hotel and find guests look at you in a weird way, staff treat you differently etc i went back to the hospital after using enstilar and asked about tablet forms of treatment and was told i was not covered enough so they would not even look at it, they told me light therapy is no good because it comes back to quick after and the creams are not really helping so i told them that i have now had enough and i will not put any creams on my skin at all to let it flare up just to try something other than oily sticky crams that are causing me a nightmare, i don't even go out when not at work because i am fed up with the way people react to me, in the beginning i would just shrug it off but after the years of constantly trying different things and keep having to go back i just don't really know what to do any more and don't really feel the hospital has really helped.
Posted Sun 9 Apr 2017 23.08 by Sue P
Hi Andy,
I really understand & empahise with you, but there is hope, please read my comment under "Sudden widespread flare up"
My feet are so unbearably sore but each morning I have to get up & take my baby "Noodle" out for a walk & then 9 hours at work. I'm 57 & have always been in good health,my experience of my lovely Dermatologist has been "treat the organ" : the skin. But when I told him no more & what I was going to do he said " he believed in what I said. I'm now his Guinea pig. Hang in there x
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