03 Jan 17:51
Coping, relationships, friends & family
Where is your biggest source of support when your psoriasis is getting you down?
Please don't include specific medical product brand names or external links.
03 Jan 17:54
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 :)
03 Jan 18:07
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!
03 Jan 18:14
haha otto, thats so funny :)
03 Jan 18:22
Me, myself, and I. as well as this great group of folks on here
03 Jan 18:45
I agree with you chaps - Me! My peeps! Fam! Humour - always and everyday...
Perhaps a Cider but hard liquor...oh my goodness : Nooooooooooooooooo
03 Jan 18:46
My family, my bird, selfies that remind me I’m still me (they are not posted, just personal reminder), goals, comedies and popcorn.
03 Jan 18:50
I'm thinking it might just be this forum.
03 Jan 18:52
only place most of us get to talk to others who understand this ,its great :)
03 Jan 19:01
A dear friend who also has psoriasis.
03 Jan 19:05
This site has been very helpful and I talk to friends who have P.
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 :)
03 Jan 19:06
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
03 Jan 19:09
Yes I think about that as well.
03 Jan 19:18
Sport activities give me strength. Mostly running...
03 Jan 19:37
Used to be my husband (who doesn't have p). Now it's Flaym! And my local GP.
03 Jan 19:38
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.
03 Jan 20:07
Here and a good friend who's mum had it can only understand it if you've had it or seen the effects
03 Jan 20:29
My faith in God ,,all of you guys in this site and my boys that do love me regardless how I look..
03 Jan 20:35
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.
03 Jan 20:52
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.
03 Jan 21:00
Support at work from mates
03 Jan 21:17
I just deal with myself. Nobody in my family has it
03 Jan 21:21
seems a lot of us deal with it ourselves ,i suppose no else understands,
03 Jan 23:09
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
03 Jan 23:46
As I am new to this site, I am hoping my support will come from fellow Psoriasis sufferers
04 Jan 01:07
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 :-)
04 Jan 02:10
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
04 Jan 02:20
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
04 Jan 04:02
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.
04 Jan 04:16
I don’t have no support.
04 Jan 04:46
Were here for you Dawn😊
04 Jan 05:13
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
04 Jan 05:34
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
04 Jan 06:17
04 Jan 06:23
Most of my support is here on flaym--altho I have other support too--with my care/givers and some friends too.
04 Jan 06:28
That's great for u...
04 Jan 06:59
hahaha michelle, i will go first,agggghhhhhhh eeeeeeek sh,t ,b,ll,,x, screeeeeeeeeeeeeeeeeeeam pants is that good enough, it does help haha :)
04 Jan 09:49
haha john. Sounds more funny that frustration.!
04 Jan 11:37
I have one friend who also has psoriasis, her's isn't as bad, but she is the only one who understands at all.
04 Jan 13:37
Mine doesn't get me down, but I betcha lots of people love this site for support.
04 Jan 17:59
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 .
04 Jan 18:11
My wonderful nurse at hospital Can phone her whenever I'm down or have a problem Lovely to be able to do this
04 Jan 18:40
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.
04 Jan 23:23
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.
04 Jan 23:35
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
04 Jan 23:36
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.
05 Jan 18:23
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.
05 Jan 19:01
The amazing Flaym and its community!
05 Jan 20:46
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..
05 Jan 21:02
Julia, the doctor prescribed alphosyl shampoo and that is what I have used ever since, it stops me scratching all day until evening.
05 Jan 22:17
Thanks do you need a prescription?
05 Jan 23:43
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.
06 Jan 04:06
Is it tar ?
06 Jan 05:27
Its hard because most folks don’t understand what it is to live with chronic psoriasis.
06 Jan 07:09
I love my Phototherapy Dermalamp. It keeps my scalp Psoriasis at bay.
06 Jan 07:11
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)!
06 Jan 11:13
It contains tar but does not smell of it at all
06 Jan 11:40
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!
06 Jan 16:51
My family and social media/websites dealing with psoriasis.
06 Jan 17:19
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.
06 Jan 17:38
I dont see where a lamp would help with scalp through hair.
06 Jan 17:43
Nurses at the skin clinic
06 Jan 17:47
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.
06 Jan 21:10
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.
06 Jan 21:37
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.
06 Jan 21:51
I would love a copy of the elimination diet. Thank you.
07 Jan 02:21
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.
07 Jan 17:34
I try not to let it get me down, but when it does I just have to work through it.
08 Jan 14:00
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 😄😄
08 Jan 15:55
Something that P teaches you over the years. You learn to do what you can and then roll with whatever happens after that.
08 Jan 20:19
Carol I totally agree. This winter has been dreadful on my scalp.
08 Jan 23:56
The itch and Ive noticed that my arms and legs are aching more
09 Jan 00:04
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.
09 Jan 14:08
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!
09 Jan 14:14
sure Id be interested in the diet
09 Jan 14:51
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.
09 Jan 18:35
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
09 Jan 19:34
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 :)
09 Jan 19:46
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
09 Jan 21:07
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 :)
09 Jan 21:19
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.
10 Jan 04:36
My psoriasis is not bad. I Hope I get my support from flaym
10 Jan 15:18
Myself, knowing that it will eventually calm down. No-one else knows what to say
12 Jan 21:18
Until now, I have had no support, for 20 years I have coped by myself, I didn't realise there was support on line,
28 Jan 20:34
Definitely not the people around me. Facebook groups and prayer see me through. My GP helps a lot too.
12 Feb 12:04
My husband and my Grandaughter...
13 Feb 21:32
Jon, pls advise kombuka, ginger, ginger pinapple recipe again i cant find your recipe on the responses anymore thanks
15 Feb 10:37
Hey Eric, Steve @beachbum is the kombucha guy 😊
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