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Coping, relationships, friends & family

Where is your biggest source of support when your psoriasis is getting you down?

89

Please don't include specific medical product brand names or external links.

89 responses

 john,darts vader
john,darts vader @chewbacca

luckily it dosnt get me down, last year it did a bit but, i am on my own with it and have always have been but, thats okay, could be worse :)


Michelle
Michelle @michelle1021

Nor does my P get me down, but luckily I am on this wonderful site and should I feel down, I know I have friends who understand and support me. Thank you Flaym!


Otto_M_Moon
Otto_M_Moon @will21

Jack Daniels , Johnny Walker, Old Granddad , Jim Beam Jose Cuervo


 john,darts vader
john,darts vader @chewbacca

haha otto, thats so funny :)


russ1894
russ1894 @russ1894

Me, myself, and I. as well as this great group of folks on here


Michelle507
Michelle507 @michelle1975

I agree with you chaps - Me! My peeps! Fam! Humour - always and everyday...
Perhaps a Cider but hard liquor...oh my goodness : Nooooooooooooooooo


Laura
Laura @laura1973

My family, my bird, selfies that remind me I’m still me (they are not posted, just personal reminder), goals, comedies and popcorn.


Otto_M_Moon
Otto_M_Moon @will21

I forgot Mr. Nice :-) Not like I could say my doctor , now could I


Heather
Heather @shedugie

I'm thinking it might just be this forum.


 john,darts vader
john,darts vader @chewbacca

only place most of us get to talk to others who understand this ,its great :)


Krhoda
Krhoda @krhoda

A dear friend who also has psoriasis.


Julia
Julia @kelj

This site has been very helpful and I talk to friends who have P.


 john,darts vader
john,darts vader @chewbacca

i have a friend to with psoriasis not like i can get it though, think hes a bit ashamed as he never talks about it with others, not like me,dont bother me, people are interested i think :)


 john,darts vader
john,darts vader @chewbacca

he has a son whos 1 yrs old tomorrow and i think, will his son get it? i dont say anything though, if it happens, then it happens


Julia
Julia @kelj

Yes I think about that as well.


Nermina
Nermina @nermina

Sport activities give me strength. Mostly running...


Sarah
Sarah @sarahuk

Used to be my husband (who doesn't have p). Now it's Flaym! And my local GP.


Susanne
Susanne @SusiQ

I agree with all the responses. I have to say that my husband and daughter aren't really supportive. They have enough of their own to deal with. But my Rheumatologist is the best support. He diagnosed me and also gave me the Biologic which has made all the difference.


Chris
Chris @Chris70

Here and a good friend who's mum had it can only understand it if you've had it or seen the effects


Marietes
Marietes @marietes

My faith in God ,,all of you guys in this site and my boys that do love me regardless how I look..


Nicola
Nicola @Nicky

I don't have one, only the Alphosyl shampoo, although when I am out with friends, I do not scratch as much as when I am alone at home.


Jim
Jim @jim1235

Been dealing with p my whole life. It doesn’t get me down because I don’t know any different. Just another day in paradise.


Ben
Ben @ben7355

Support at work from mates


Susan
Susan @mermaidstar

I just deal with myself. Nobody in my family has it


 john,darts vader
john,darts vader @chewbacca

seems a lot of us deal with it ourselves ,i suppose no else understands,


Mike
Mike @insitegm

Prior to joining this super positive group, didn't really have a support system except that I look at Jon Morrow(owns smarter blogger and can only move his face), his success, and what he overcomes on a daily basis.... I don't need any more positive motivation then his story provides..... just need the support here to make the obvious necessary lifestyle changes as my psoriasis had gotten worse over time


Eileen
Eileen @eil

As I am new to this site, I am hoping my support will come from fellow Psoriasis sufferers


Jeri
Jeri @jeri

A wee dram and a TV binge helps. Oh, and popcorn made with coconut milk. Yes, I am an animal. I reward myself with food :-)


Gerald
Gerald @gerald

I’ve been dealing with P for years, I can’t remember a time when I didn’t have it , a cold beer takes the edge off though, lol


eric
eric @eric1946

im optimistic and lo, and do stuff you like to dook forward to the flare subsiding which it usually does. Keep skin moist with oil, use creams


Susanne
Susanne @SusiQ

I am optimistic also. I have my birds that keep me smiling. Five parrots who need a lot of care which keeps my mind off of negative thoughts and keeps me busy and active.


Dawn
Dawn @dawn21

I don’t have no support.


Marietes
Marietes @marietes

Were here for you Dawn😊


Michelle
Michelle @michelle1021

We might not get the support from the people we wish to get it from, but as long as we know how to deal with P, we can get through it. This site is here for all of us and should one feel angry, lonely, depressed, then rather give a shout out on Flaym and take your frustration out on us. We know and understand where the anger comes from and remember, we are ALL here to support each other. Soooooo...who's first? lol


Annette
Annette @annette79

After having no real support after the 30 years of dealing with it, this site has made a big difference and offers support and a place to get info. It helps knowing how others deal with the issies



Lorna Penner
Lorna Penner @lornapenner

Most of my support is here on flaym--altho I have other support too--with my care/givers and some friends too.


Dwayne
Dwayne @dwayne

That's great for u...


 john,darts vader
john,darts vader @chewbacca

hahaha michelle, i will go first,agggghhhhhhh eeeeeeek sh,t ,b,ll,,x, screeeeeeeeeeeeeeeeeeeam pants is that good enough, it does help haha :)


Michelle
Michelle @michelle1021

haha john. Sounds more funny that frustration.!


Virginia
Virginia @vir

I have one friend who also has psoriasis, her's isn't as bad, but she is the only one who understands at all.


Susan
Susan @godcares

Mine doesn't get me down, but I betcha lots of people love this site for support.


Lee
Lee @lee1981

I use clear warm water & then Aveeno dry skin cream , don't know what else to do . No support . Oatmeal is suppose to be soothing ... I wonder if I put my feet & legs in a bathtub of oatmeal porridge if that will help ?? That's where my P is the worst .


Frances
Frances @frances

My wonderful nurse at hospital Can phone her whenever I'm down or have a problem Lovely to be able to do this


Sid
Sid @sid2

It's really tough sometimes because other people don't understand. I had chronic pain from my PSA and from the itchy spots on my body. My SO tries but sometimes gets frustrated with me. I'm hoping this site can fulfill the support role.


carol
carol @carol1943

Websites are pretty much the only support that I want cause I don't know anyone who has P. How do you support someone when you have absolutely no idea what they are going thru. I don't understand it myself so how can a person who doesn't have to worry about certain things touching their skin or certain foods or prolonged sun exposure or stress etc etc etc. possibly understand how we feel. I gave up long ago trying to make anyone understand and I certainly don't hold anything against the untainted by P population My medical team is kind but still don't really know. I appreciate the online folks.


Frances
Frances @frances

My nurse at hospital had it for several years She doesn't have it now That's why she has so much support for me


Nicola
Nicola @Nicky

I did have a friend who had it much worse than me, i.e all over her legs and arms, whereas I only have it in ears and scalp. However, we have lost touch now. I only got it later on in life, about when I was 45. We were on holiday and I had a very scabby lump on my scalp which I scratched and a lot of hair came out, which has not grown back, but I cover it with having my hair parting much more to the left. Went to the doctor when I got back and he said it was psoriasis. It was about a year later that it started in my ears. The other thing that annoys me is I can never paint my nails as they always break downwards and are very ridged, so they are all different lengths, mostly short. I also appreciate this site and the people online.


Julia
Julia @kelj

Hi Nicola what do you use on your scalp to help it. Mine was at bay for quite some time and I had a flare up and seems to be worse with the cold weather and dryness.


George
George @georgeT

The amazing Flaym and its community!


Ellen
Ellen @ellen6

My sister she had psorasis a lot longer than i have and understands the soreness and itchyness. I take great comfort in talking to people who knows what it is like to have skin condition and hearing what has worked for them it gives me hope..


Nicola
Nicola @Nicky

Julia, the doctor prescribed alphosyl shampoo and that is what I have used ever since, it stops me scratching all day until evening.


Julia
Julia @kelj

Thanks do you need a prescription?


Nicola
Nicola @Nicky

Julia, no you don't you can get it at pharmacies and also Asda at the counter for prescriptions. but you don't need one, it's just that they keep it behind the counter. It costs about £6 per bottle but lasts a long time.


Sue

Debbie
Debbie @debbie5463

Its hard because most folks don’t understand what it is to live with chronic psoriasis.


Chrissie
Chrissie @chrissie1

I love my Phototherapy Dermalamp. It keeps my scalp Psoriasis at bay.


Chrissie
Chrissie @chrissie1

My scalp is my biggest problem. I have invested in a UVB Narrow Band Phototherapy lamp which keeps the scalp almost free from Psoriasis. (Happy me)!


Nicola
Nicola @Nicky

It contains tar but does not smell of it at all


Rita
Rita @rita

My husband is supportive to an extent but like many have commented above, it’s hard to understand psoriasis if you’ve never had it. No one else I know has it so I’ve been dealing with it mostly by myself since forever. Great to have the Flaym community!


RedSpotEliminator
RedSpotEliminator @redspoteliminator

My family and social media/websites dealing with psoriasis.


carol
carol @carol1943

OK I just tried to do a new post in response to Chrissie's post about the photo lamp for her scalp and the site won't let me post it. What am I doing wrong? This happened before when I tried to new post.


eric
eric @eric1946

I dont see where a lamp would help with scalp through hair.


Trish
Trish @trish5

Nurses at the skin clinic


carol
carol @carol1943

I have had lots of photo therapy over the years and my hair is now so thin that there is little or no barrier. I agree though. I never thought my scalp improved from photo therapy.


Marg
Marg @marg0826

I am new to this group and have already felt support just from reading everyone's comments. This winter has been especially bad on my scalp and I am desperate for recommendations.


Susan
Susan @godcares

Marg welcome to the group. Tons of good stuff here. A bunch of us are doing an elimination diet that I would be happy to send you if you are interested. Just private message me. That is how my healing began years ago.


Marg
Marg @marg0826

I would love a copy of the elimination diet. Thank you.


Susan
Susan @godcares

Marg you have to send me a message. I can't send you one for some reason. When I get your message I'll send you the diet.


Marilyn
Marilyn @marilyn5

I try not to let it get me down, but when it does I just have to work through it.


Joyce
Joyce @joyce6

I find fam & friends don’t really grasp that you can’t just “not scratch it!” I don’t stress anymore - about anything! I approach life with the attitude that if I can do something about a potentially stressful situation I do it, otherwise ‘que sera sera’ drives the family nuts 😄😄


carol
carol @carol1943

Something that P teaches you over the years. You learn to do what you can and then roll with whatever happens after that.


Julia
Julia @kelj

Carol I totally agree. This winter has been dreadful on my scalp.


Sarah
Sarah @sarah2552

The itch and Ive noticed that my arms and legs are aching more


eric
eric @eric1946

Different reactions from different people. Mine is always worse in evening I suppose because Ive been on my feet all day and rhe ankles and feet are my worst P. places.

In the morning, almost gone, so that must be because feet .
Sometimes I wrap the legs and feet in saran wrap all night with oil underneath.


Susan
Susan @godcares

Sarah, eric, or anyone new a bunch of us are doing an elimination diet to help figure out what foods are triggers. I am more than happy to send it out if you are interested. I am clear of psoriasis now she I share with enthusiasm always. I'm also a big advocate of aloe vera gel that is not costly at our health food stores. Natural healing plant. As well Moringa is taken internally and I love the stuff. Blessings one and all!


eric
eric @eric1946

sure Id be interested in the diet


Susan
Susan @godcares

Eric send me a private message. I can't message you for some reason. Maybe you need to be following me. I followed you. I'll get that to you asap.


Nicola
Nicola @nicola12349

I'm quite down at the moment with mine, hence me joining this group, no one I know has psoriasis. I have scalp/nail/arthritic psoriasis and it's just started on the skin on my hands.
I would be interested to hear of anyone that's used diet to help
X


 john,darts vader
john,darts vader @chewbacca

hello nicola, diet/lifestyle changes do help but,it does take a while,slow elimination of potential trigger foods is key to success,i have been on an inflammatory weekend with beer and bad foods ,and i can feel slight itchiness nothing bad though and bit of inflammation in my joints in places but, not bad at the moment, i am back on healthy eating so should subside in time, it does help,my scaling has reduced and joints are better with dietlifestyle changes though, it is a choice,some improvement is better than none ,my nails on my fingers look normal after doing diet changes :)


Nicola
Nicola @nicola12349

Hi John, thanks for the advice, I've started taking broad vitamins inc vit D and C which seem to be helping a little with my nails. This only started 2 years ago so still using trial and error with lots of creams and potions, any idea which foods to try and eliminate first? I pretty much eat everything lol


 john,darts vader
john,darts vader @chewbacca

hello nicola, sugar is the biggest evil, slow elimation cutting down over time ,first thing i stopped was caffeine,chocolates,sweets,cakes processed meats,pork and beef,,easier to cut those things out first and see how you go, omega 3 is good,vitamin D and D 3 :)


Rita
Rita @rita

All good advice John. When taking vitamin D3, take 5,000 I. U. Most people are vitamin D deficient and people with psoriasis need more.


Lee
Lee @lee1981

UNSUBSCRIBE !!


Lee
Lee @lee1981

UNSUBSCRIBE !!


Ajibiyay
Ajibiyay @ajibi

My psoriasis is not bad. I Hope I get my support from flaym


Siobhan
Siobhan @siobhan727

Myself, knowing that it will eventually calm down. No-one else knows what to say


Otto_M_Moon
Otto_M_Moon @will21

Nermina, good for you . You realize that healing comes from within! It's a connective tissue disorder not some auto-immune theory


Angela72
Angela72 @angela72

Until now, I have had no support, for 20 years I have coped by myself, I didn't realise there was support on line,



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