PLEASE READ
1
Posted Tue 20 Feb 2018 01.06 by Joxx
Hi. I , like probably all of you on here have reached a new level of depression due to psoriasis and to be honest a number of other things, it’s not cureable it’s embarrassing and let’s be honest it hurts emotionally and physically. I speak for all of us I’m sure when I say I’ve absolutely had enough of it. I’m not sure about any of you but I for one am struggling. It’s hard day in day out and it’s even harder when no one in my family and none of my friends understand this, it’s not their fault I understand that and I wouldn’t wish this on any of them, but I come on here because it’s nice to see other people know how I feel. What I’m trying to say is obviously none of us are completely alone due to this page which I’m greatful for even tho I don’t post a lot it’s nice to read and know there’s others out there like me. This website is great but do any of you feel it’s difficult in public? People staring? Some ask? Going to a bar when your covered head to toe and trying to wear something that covers you completely? Looking at everyone else wishing you could wear what they can? Because it’s winter and there’s no sun to help clear you a bit? Or your in Scotland and even the summer is winter or another cold country! Well those and 100 other reasons is why I feel uncomfortable a lot, and Due to the fact I’ve actually never met In person another human being with psoriasis I would love if something like this page could be a social event we could all meet up and have stalls with treatments that actually help instead of pointless moisturisers and 10 second light treatments that ALWAYS result in P coming back. It would be nice to be in a room full of people for once that feel how you do, won’t judge you and aren’t wondering why you look the way you do. Would be nice to maybe make friends that you could discuss this with and maybe even joke about how awkward you look in work going to the toilet to leave a snowfall of skin on your chair, which is horrible to do alone but I guess if I had someone to talk to who does the same thing maybe we could laugh about it, I know barley anyone will read this and less will reply but I wanted to say how I felt somewhere and where better than the only community that will understand it, thanks if you read this. Needed someone to x
Posted Tue 20 Feb 2018 15.05 by Liz
I read this Honey! I agree that talking with like wise people help. Have you tried asking your GP surgery if there is a local group you could join. Otherwise why not ask if they are prepared to put up a notice if you set up a group. That will help you feel em powered. I'm lucky I that I have family that all help me and van laugh with over my PPP.
I commented on another thread in response to you regarding CBD oil...have you tried it yet? Seems to me that it may help you with coping. Sending love and support x
Posted Wed 21 Feb 2018 06.58 by She
Hello! Am new to this site... My mother was born in Glasgow, Scotland.... I live in the United States.
Hello! May I ask what is CBD oil?
Also, I just wanted to say to Joxx that whether you have P or not.... there are a great number of people out here who are lonely and without someone to talk to. I encourage you to be pro-active! Start a group... find someone on this site to exchange your thoughts with... I am positive that you are a person (on many levels) who deserves compassion, understanding and friendships! Thank you for having the courage to share with everyone on this site. Best of luck to you!
She
Posted Wed 21 Feb 2018 12.49 by Joxx
Thanks for replying. I have loads of support regarding p Just always wondered what’d itd be like to know someone who feels the same and really gets what you mean I’m not lonely tho a group does seem like a good idea.
CBD oil is cannibis oil without the THC that causes a high from it, it’s sold In Holland and barrets for around £9 its suppose to help a long list of conditions small and big, I went on Sunday to purchase some and they were sold old so ordered it in, haven’t received it yet but will post results!
Hope your both well x
Posted Thu 22 Feb 2018 21.10 by Liz
Hi both. Well put Joxx about CBD. Mine arrived today from Holland & Barrett. Still a bit wary and will do some more reading but think I shall be trying it. My sister in law swears by it. She is in remission for MS, has been diagnosed of having an underactive thyroid and takes no prescription meds......she's 62 and looks 40! Xx
Posted Fri 23 Feb 2018 00.07 by Joxx
I’ve been desperate to try it, honestly not even hoping for miracles just a difference! That’s not the first success story I’ve heard with it so glad it’s working for her tho! It’s honesgly suppose to be great for so many conditions, probably why it’s taken so long to be legalised, moneys in the medicine!! Xx
Posted Tue 27 Feb 2018 17.05 by Instantsmile
Yes my wife is covered head to toe skin every where hotel rooms bars hairdresser parties car dealers service will only clean outside of car .a real mess uvb light does work see my other posts
Posted Tue 27 Feb 2018 21.44 by Linda
I can feel your pain been there. Has psorasis for 28 years. Tried every cream , Tar car baths the lot . When being mother of the bride and you go looking for an outfit what will cover you up and find one that does most of the job only to see the wedding photos with your hands covered in P . Was last straw ! Had the light treatment and in fairness although it came back it was not as bad . Like you it made me depressed, i cried alot , would not go to the beach, swimming etc. People looked at me ! I could see their eyes ! The only thing i have found that really helped was by mixing 50% forever aloevera gelly and 50%aloe propolis creme . I can provide the details of who supplies me if any one wants it .
So i have responded to your post but wanted to do one my self but cant just work out how .
For the last 4 weeks i have had chronic back pain with spasms. Couldn't lay down for a week . But been on medication prescibed by the GP - methocarbamol ( muscle relaxant ) , Omeprazole (to line the stomach) and co - codamol. For pain. In my opinion a miracle has happened i am totally clear of P. First time in 28 years ! I phoned the association to tell them too. It could be my body just decided to give up the P up because of my acute back pain . But i find it hard to believe. Only on the pain killers now so will be interesting in the coming weeks if the P comes back. Going to speak to my gp because its possible these drugs have not been tested on people with P. Will post an update in a few weeks .
Posted Wed 28 Feb 2018 02.18 by Joxx
Thank you Linda, I’ve honestly tried everything as well I just began to loose hope, but it’s funny you saying that actually, when I had my tonsils removed last year due to them being enlarged and causing problems all my life, the next day P completely cleared. It was beyond incredible, didn’t last which I’m sure was the result of a further throat infection and taking ibprophen that irritates the skin, it was honestly a great experience weirdly one of my favourite things was taking off a top and not feeling like my ears were being ripped from my head ( it’s the small things) I was also diagnosed a few years ago with back problem they are sure I’ve had from birth due to the way I was born, and weirdly enough a few months ago was prescribed omeprazole for my stomach lining too, had to go to the doctors as it was constantly bloated at the top , painful and extremely uncomfortable, he said this was due to inflamed stomach lining or stomach acids im sure, weirdly my P has calmed down I’m still fully covered but it’s not as red and violent looking and I’m not really casting as much! On my second day of CBD oil and not really seeing a difference but it’s very early stages. Thanks so much for replying Linda I understand what you mean about seeing the after pictures it’s always made me want to make sure they don’t appear anywhere and I don’t go swimming anymore due to mine either, I do find comfort in knowing there’s people who go through the same tho. Heartbroken for everyone who suffers but like having someone who understands so I appreciate your response! X
Instantsmile/ I sympathise with your wife I too the only word I can think of to explain it is cast! I leave trails everywhere and don’t even realise I have to hoover my own bed every day! I tried the uvb and it wasn’t for me at all, didn’t feel to be making a difference and when I stopped it came back a lot worse, I’m sure everyone reacts to different treatments differently. Thanks for replying x
Posted Wed 28 Feb 2018 03.38 by Linda
Joxx
We are here for you ! Winter has always been my favourite season you can cover up and no one knows you have the dreaded P. Im fortunate i dont have it on face/ neck / head. Remember visiting relatives in boiling heat with me wearing trousers and long sleeves and them asking sure you must be hot. Me oh nooo. Just another lie! My entire wardrobe for 28 years has revolved round Psorasis. Its unbelievable how a skin condition can take over your whole life. So you are not alone !
Keep thinking what else might i have done for P to totally clear. Only other thing i can really think is i’ve been adding salt to my food to stop cramp in the night. Never used salt in cooking or at the table. Thought it was bad for you and you got enough from the food you eat ? Now wondering. Something else to monitor / eliminate to see if P comes back x
Posted Wed 23 May 2018 00.52 by JeanneJames
Here to speak with likeminded people and to offer support!
Hello everybody,
I realise that I am super late to the party here, but I only joined today and this thread resonated with me so much it’s unbelievable!
I am a long suffering P victim. I am sick to death of colleagues, friends and even random people in the street asking if I am ‘contagious’.
I also am supported by my family, who are aware of everything I go through - although I don’t think they understand how much the P actually affects my life. Literally from waking up in the morning, my first decision is which topical treatment to use first, to which clothes will hide my elbows and ankles? And throughout the day it continues... as you will all be aware!
I was quite lucky to have the UVB PUVA light therapy treatment, and I did meet some people there with similar conditions to me, albeit they were all considerably older than me (I’m 29).
I’m at the point now where the P is starting to affect my work life, which is total carnage. So I agree with you Joxx, it would be really nice and reassuring to be able to meet up with likeminded people who understand what your going through, it’s nice to feel like your not alone! Xx
1
Posted Wed 23 May 2018 15.57 by Joxx
Hi there, this was my thought for the last while there too, when I wrote this I actually thought there was no hope anymore just after I posted this I seen my dermotoligist who said to me she had ran out of options that had no side effects so she prescribed me steroid foam estastar or something, I was gutted, 17 years old and having to start steriods! I thought about it a lot before picking it up from the chemist and then I found out about the CBD oil, which I have been using since well roughly this post one of my last replies I was on my second day, and it’s a slow process but I officially have one patch on my arm and apart from that I am clear! When I got CBD I wasn’t hoping for miracles I wanted the symptoms to go away at least the pain was getting too much, and first of all it took the symptoms away and then the P! It’s not like when u go on holiday and the patches go all white , there basically gone, not red either! And I know everyone reacts differently but it is worth a try, I’ve recently moved to 5% CBD which is stronger ( still no thc) just to keep it away it’s a slowish progress but I would recommend it 100% those of you who replied will see the mindset I was in in February and now in May im nearly clear! I know it could always come back but for the relief I have right now it would be worth it anyway, I know some of you are weary as it is cannibis oil, I done my research and spoke to the girl in Holland and Barrett before trying also, I was discharged from my dermatologist yesterday as the only route I could ever go on was more steroid so I told her I’ll stick to my own treatment!! I have been where all of you are you can see that on here, I have one patch on my arm that still makes me wear sleeves! But if I was willing to wait on my body clearing I will wait on this arm!! Every time I read these forums I thought, why do people that don’t have P not take it as seriously as we do, and even as a massive association I felt we were so alone with this when it came to doctors etc. but now I want everyone to at least try this if you can we can do this and I believe there will be a cure one day and I feel like this is pretty close to it, so anyone struggling and / or looking for a change in treatment please give this a go x
Posted Mon 4 Jun 2018 05.01 by Morrigan (edited Mon 4 Jun 2018 05.04 by Morrigan)
Well Joxx - it is 04.54 in the morning and I have just registered on this association, your post is the very first I read and the words that jump out at me is 'snowfall on my seat' and around the shoulders (I had a person at work who actually made a point of brushing me off) and this was very distressing.
After at least 7 years I am finally having my first appointment with a dermatologist later today. But, what I would really like to know is if anyone has actually shaved their heads to get cream onto the scalp. Not sure if it is excitement or fear that is stopping me from sleeping. x
Posted Wed 6 Jun 2018 16.28 by Kiff
Joxx -
I am new to this forum... I read your post on CBD helping you get clear!
I am very interested what products you tried. Is it a topical salve, or an oral oil?? I've been doing tons of research on CBD oils/creams for P. Looks very promising!
My 13 year old daughter has had P for 8 years now, and I hate to have her on steroid creams, etc... to many scary side affects, and not enough healing!! Suggestions on products?
Thanks in advance!
Kiff
Posted Wed 6 Jun 2018 16.40 by Joxx
Morrigan- it’s honestly such an awful feeling even clear I still get parinoid , to be honest there was times when I had literal holes and bald patches in my scalp I really thought about shaving it all, but my school wouldn’t have been kind about it at the time horrible I know but it wasn’t a nice place and I became good at covering it now older I probably would, my hair has never really grew in the same after those patches so that was my worry that it wouldn’t come back properly. I preferred the natural route so much more than all the dermatologist things they proscribe, I hope you get somewhere seeing yours tho everyone reacts to treatment differently so good luck! X
Kiff - I use the CBD oil oral food supplement i put some drops under my toungue in the morning and at night before bed, I 100% recomend it it’s the only one I tried and had amazing results, and I’m nearly 18 and was determined not to go near the steriods, my gran was really ill for years and I watched what they done they really are horrible drugs, I honestly feel for your daughter . I know she’s young but I do recomend trying it they sell it in Holland and barrets im not sure where you are but it’s completely legal where I am as there’s no THC in it, and as I understand your not supoose to give children steriods before they are 18 ( they tried to give me them early too) so I don’t think anything could be said about giving her the CBD oil to try, it’s honesyly worth it I’ve recently moved up to the 5% oil a bit stronger only because having p for so long I couldn’t believe it was going away so just wanted to make sure it’s dear but it’s worth it good luck!! X
Posted Wed 6 Jun 2018 17.18 by Kiff
Joxx- thank you so much for the input!
I am in U.S. so I will look into what/where to get a Cbd food oil supplement! There's so many options and I just want to get the best product for her!
Kiff
Posted Thu 7 Jun 2018 18.58 by Morrigan
thanks Joxx and Kiff for your support. I appear to have shedloads of medication on the way. No one mentioned steroids but I will read the descriptions before I use them. The Dermatologist was very nice (kind of upbeat hippy!!). Anyway lets see how it goes. Take Care all. Morrigan.
Posted Tue 12 Jun 2018 13.26 by wendyloish
Try taking vitamin D capsules. I have a bunch of autoimmunes, the main thing being psoriatic arthritis. But that took 71 years to be diagnosed. I have had psoriasis since the age of 17. But I live in Australia. The UV helps but must be constant. It is generating the vitamin D precursor which goes to your liver where it is changed. It then goes to your kidneys to finally be converted into the vitamin that actually works. The capsules contain the liver product, so you are short circuiting the need for the sunlight. Also try cutting dairy and gluten from your diet and see if that helps. Your gut is actually lined with the same cells as your skin. I wish someone had told me that psoriasis was an autoimmune fifty years ago, I might not have the problems with heart, lungs, blood pressure etc I have today
wendyloish
Posted Tue 19 Jun 2018 17.21 by ScottishGirl
Had psoriasis for 15+ years
It’s funny you said if your from Scotland and I am from Scotland. No sunshine here! Ha! I have guttare psoriasis and Just started on ciclosporin today. It’s not usually prescribed to people with my type (atleast that’s what the dermatologist said) but certain circumstances have let me to this. I’ve read good things so hope it helps! I work with people with dementia and I know they can’t help what they say but people point it out and say ewww what’s that on your arms all dot dot dot... they must think i don’t have feelings. I’ve had many of nights crying about my skin and absolutely hating seeing people walking around in dresses or shorts etc (on a rare occasion it’s sunny im Scotland) and it really gets me down having to dress for he winter everyday! I’ve had all lotions and potions and 3 months of light treatment that only cleared some parts so pretty much nothing had worked so I’ll see how the ciclosporin goes even though I’m worried about it because of the type of drug it is ☹️ I’m always here to listen if anyone needs me!
Posted Tue 19 Jun 2018 19.13 by Kiff
Update!! My daughter has been using a Full Spectrum CBD Lotion for a couple weeks now.... WE ARE SO HAPPY!!!!
Thank you Joxx for helping me along way, and the others who have shared their stories!! I highly recommend CBD products!! No reason to not try it!! No side affects, and it WORKS!!!
She said it was immediate relief, i.e. "relaxed skin" not "tight" and there is NO sting or burn like with other lotions.. and now Only smooth pink patches . Looks like New!
THANK YOU!!!!
To take part, sign in or register with us