Flaym
...feeling frustrated Flaym @flaym

Coping, treatment

Do you feel that you have enough knowledge of psoriasis as a condition to manage it effectively?

70

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

70 responses


Ruben
Ruben @ruben

Nope, don't think anyone has. But a whole lot more info since joining Flaym.


Paul
Paul @paul116

Absolutely 100% Enough to know that diet/hydration/exercise is key to this condition, and all medication /light therapy have side effects,However I was a nurse by profession


Chris
Chris @Chris70

I think so,have tried light treatment worked for a while,prescribed creams ineffective won't go down the steriod route. Diet creme that works well and acceptance works for me now as best as it can.


Diane
Diane @froghop26

I am always willing to learn. I can manage mine through diet and medication. People on this site are an absolute encyclopedia of information.


natalie
natalie @nataliemc

no but i do know way more since joining flaym. 👍


Ellen
Ellen @ellen7

Can you have one type of ps on your leg and another type on your hands and face.


Lisa
Lisa @lisa6488

Yes Ellen you can. There are different types of psoriasis. Plaque is the most common I believe but there's inverse, erythrodermic, palmer, guttate and I'm not sure if there's any other but I do know they're all annoying.


James
James @ferns

I've had it for 40 years, on my first doctors visit, he didn't even know what it was, said he thought it was coal dust in my hair (I worked maintainence in a coal mine) being mixed with sweat from the movement of my safety helmet, and forming a hard crust. I learned a lot over the years though, through asking questions, reading etc. This site though, has been where I've learned the most.


Bev
Bev @bev43

For sure the people on this site have helped us so much.


Michelle
Michelle @michelle1021

Yes I actually do. I haven't been to a Derm for more than 20 years and in all this time I managed on my own, but since I joined Flaym, everything just got better. I am open to more ideas of course and would love to have a cure for P, but otherwise, I manage my condition very well.


Lorna Penner
Lorna Penner @lornapenner

NO--I NEED MORE MONEY TO TRY THE DIFFERANT THINGS


ina zeelie
ina zeelie @inazeelie

I itching on my scalp and oit is sre I am usingtumeric , but when its humid it is itcing a lot


ina zeelie
ina zeelie @inazeelie

Nope I am using timeric . But cant find any meds here in botswana


Lynne
Lynne @peachkin

No if I did I would not be on this sight.



 john,Hulk
john,Hulk @chewbacca

Yes that is true Lynne agreed on that, i came here with the thought of leaving here within a week,so many ideas came up from people that were a lot worse off than myself,it did make me feel better but not for those people,they helped me move forward to try new things,i have never had it rule my life which is good for me but, i wanted my arthritis to get better as i was falling over getting out of bed etc and pain in a lot of joints, that was more disturbing than the psoriasis for me though psoriasis did get quite bad for me 2 winters ago, think some berrie capsules set it off?, i wanted to lose weight and improve myself, arthritis is way better, nails are good,a lot of weight lost, skin is okay but up and down as usual,i look a bit different than a year ago,as you can see by my photo, i do look a bit drawn in the face :) i think i manage fairly well Flaym thank you :)


Miguel
Miguel @miguel

I echo Lynne's sentiments: "No if I did I would not be on this site". 😊



 john,Hulk
john,Hulk @chewbacca

I am sure we would rather not be here, i would be stuffing my face with gluten/wheat,lactose,fructose,choccies etc, i am sure right now i would be doing that, i would probably be more overweight than i was a year ago so,making changes has helped me lose weight :)


Paul
Paul @paul116

Good on you John, yep again loosing some weight helps also with the conditions well as all the other benefits of loosing weight


 john,Hulk
john,Hulk @chewbacca

Thank you paul, i lost over 3 and a half stone within 9 months last year,i was near 15 stone now 11 stone,many people ask me how did you lose it, i gave out the diet plan, you can stick that they said, okay , it is a choice a choice for everyone thank you :)


Paul
Paul @paul116

Resect where it's due John well done and I expect you feel better for it??


 john,Hulk
john,Hulk @chewbacca

Thanks paul, well if my back would sort itself out i would be very good, always had back problems but could be worse, i can do my shoe laces up easily now since i lost the weight :)


Sarah
Sarah @sarahuk

I feel that I have enough knowledge to manage it to an extent, but I always wish I could know more 100% bona fide facts about the causes of psoriasis. You know, scientifically studied and proven certainties about the nature of it... i.e. autoimmune, gut, inflammation etc. We all just work on hypotheses really, and have to rely on members of the scientific community to research our condition and get to the bottom of it for certain.


gary
gary @gulagger

It’s impossible to manage it just as you think it’s under control it starts itching like crazy and everyone says don’t scratch it lol yer right that’s like an alcoholic in a locked room with a bottle of wine on the table !!!


Karin
Karin @karinm

To me there is a difference between knowing how to get it under some level of control, which I have learned by trial and error and the wonderful support from people on this site on the one hand, and really knowing what the .... it is. I have no idea what it is, the scientific community seems to not be all that interested in finding out.


Norma
Norma @norma5

No I feel that I know nothing at all!


Judith
Judith @judith96

I have had psoriasis since my mid 20's and am now 69. Been thru the mill of treatments. I would find one that works and my insurance would say you only need one shot per week instead of 2-FLARE. Then another med was a disaster. Now on 2 pills a day and clear but who knows for how long? To answer your question, YES I have enough knowledge to know the questions and the answers I should receive from my dermatologist.


Lou
Lou @lou60

I feel i may never have enough knowledge.


Damian
Damian @FindingDamo

Oh I can manage it fine, but the lifestyle changes necessary made me sadder than the skin flakes. I’m taking a term off to get more exercise and less stress. Fingers crossed.


carol
carol @carol1943

No I have had too many full body flares to feel that I have any control. I just hope for the best and depend on my derm in times of trouble.


Joy
Joy @joy697

No I am into it unfortunately one year


Pegge

Michelle
Michelle @mishlyn

I have learned enough to help manage it, but am always wanting to explore and learn more. So many unanswered questions when it comes to p. I have learned more here than I ever have before. So very grateful for that!


Michelle
Michelle @michelle1021

@Ina zeelie - where in Botswana do you live? Beautiful country.


Gill
Gill @gill4

I don't as when in hospital recently I ask Dr if changing my diet would help and was told no as type of p I got. So only creams and tablet and uvb will help


 john,Hulk
john,Hulk @chewbacca

Hello Gill, doctors and derms are not trained in this area of diets for autoimmune conditions,they are specialists in symptoms not route causes,they cant advise on this, i was told this as a child that diet changes will not help by a doctor, it has been proven to help a lot of people though it is a choice i know to change diet/lifestyle over a year ago now ,my arthritis is near gone because of diet, nails look normal, skin less flakey,creams like steroids did and do help but, they are not good for us with a lot of use,i have thin skin because of steroids ,i was in some pain last year in the start of 2017, i am not now through diet,its toxins in foods we eat/drink can set it off make it bad and cause other problems i know, diet/lifestyle changes is a choice, some changes in diet/lifestyle is better than none but, it is a choice a choice for everyone, i wish you well Gill :)


Paul
Paul @paul116

What John said Gill spot on forgive the pun


Angela
Angela @angela1903

I agree 100% diet has made a drastic, positive change for me. Difficult way to eat - sad to eliminate foods I enjoy...but the benefits outweigh the negatives. Doctors do not know all about various conditions & like us, they're learning (I hope!) Hanging in there!!


Susan
Susan @godcares

Gill as other's have said give diet a go. You have nothing to lose and everything to gain. If I listened to my dermatologist 30 years ago I would still be suffering and still be on medications. I'm just glad I have a stubborn streak.. LOL


ina zeelie
ina zeelie @inazeelie

Help my scalp, ears and hole face, are burning , I am realy scared, , I dont whant to go out


Bev
Bev @bev43

I'm so sorry you are having such a bad time at the momentum. I do hope that you sort it out quickly.


natalie
natalie @nataliemc

ina zeelie. put vaseline on your burning skin. a lot


Ellen
Ellen @ellen7

John. Darts Vader. Could you please give me an idea of what type of diet you used and what you eliminated out of your diet.


Pegge
Pegge @pegge

I would like that as well..Thank you..


Joyce
Joyce @joyce13

I found that petroleum jelly is a blessing to my itchy and burning skin..


Michelle
Michelle @michelle1021

I use aqueous cream. It nourishes my skin. I go into a panic when my cream is finish. I mix my coal tar with the cream and use it right through the day. Been doing this for a lot of years now. I have used vaseline before but it is too sticky for me.


Sarah
Sarah @sarahuk

Where do you buy coal tar from, Michelle?


Angela
Angela @angela1903

Found a new product that I'm getting Good results with: Village naturals Warm & Tingly massage oil bar. Very soothing & stops the itch immediately! A little strong smelling - smells like cloves! Out of the shower, I'm putting this on, then my fav vaseline. It has a moisturizing but not greasy feeling. Diet is going well & skin is still improving 😃 Getting used to a different way of eating!



 john,Hulk
john,Hulk @chewbacca

wooo hooo Angela sounds good,we are easily pleased arnt we us psoriatics,well done, you could try a lemon to stop the itch, i just have and it dont itch now, i have a few small spots on ankles and squirted a bit of fresh lemon on it, itch has gone :)


Joy
Joy @joy697

What diet is every body on


Angela
Angela @angela1903

For me it's no red meats, dairy, peppers, white potatoes, tomatoes & caffeine and snack foods too. Eating lots of squash, broccoli, etc. It really is calming my skin. Good luck! ❤



Bev
Bev @bev43

Joy a lot of us are doing or have done the elimination diet which we got from Susan


Lou
Lou @lou60

I'd like a copy of the elimination diet please.


Joy
Joy @joy697

How do u get the diet from Susan


Bev
Bev @bev43

Private message her


 john,Hulk
john,Hulk @chewbacca

Susan @godcares,her picture is like her posing as a crucifix, ,good luck joy, it will help in the long term,i started diet/lifestyle changes over a year ago,a few people from back then helped me move forward, these people are not here now,good luck :)


Lou
Lou @lou60

I did already Bev.


Susan
Susan @godcares

Joy I just sent you a message.


Susan
Susan @godcares

John posing on a crucifix? Hahahaha! That is just too funny. I always looked at the picture like a bird with wings... You make me laugh out loud sometimes. Seriously you should have been a comedian!


 john,Hulk
john,Hulk @chewbacca

Oh dear Susan, its what comes to my mind with your photo :) good to have few laughs though i was being serious :)


Joy
Joy @joy697

I have tried to download the diet from Susan and it failed twice. Any ideas


Susan
Susan @godcares

Joy I don't really know. I did send you a private message to your email. Maybe see if you have another email I can use.


Ruben
Ruben @ruben

Probably the security settings on the mail account. Is it a pdf file?


Susan
Susan @godcares

Yup Ruben... A PDF.


Ruben
Ruben @ruben

Strange, shouldn't be a problem... That's exactly why they created PDF.
@Joy do you get an error message?


Joy
Joy @joy697

I got the message but couldn't open the diet. Have fun



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