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This forum active? My introduction LONG - SquidBro - Thu-20-07-2023
Hello,
Just found this forum, have had psoriasis for about ten years but never really looked for a forum before. But in the past few years its progressed to an intolerable point and ive been struggling.
Bit of background on me, 29 y/o male, live in Ontario, Canada. I consider myself very fit and healthy.
I has psoriasis start around the ears and nose at first. That was easily remedied with any lotion. I really first noticed persistent psoriasis on my elbows and then knees. Then my belly button as well. I had a few spots pop up here and there on torso and arms but just adjusted my diet to eat more healthy meals (not eating a cookie for breakfast) and was able to control it pretty well with just a little steroid cream and basic 80/20 kind of diet (eat healthy 80% of time, eat junky food 20% of time), and no restrictions. Sometimes it would flare and be extra flaky but some diet correction and salt baths would get it under control. Over the years a new spot would develop here and there, on my fore arms, shins, torso, the forearms and shins would come on as a result of damage to the skin (cuts) that despite my "healthy lifestyle" wouldn't go away. Admittedly I did smoke on and off and drink from time to time for many years and often eat anything i felt like but I was active and felt like anytime i could reel it in and control flares. It was annoying but i could deal with it and enjoy going to the beach and wearing shorts and t shirts.
In the past 2ish years my psoriasis kind of exploded. It basically covered my forearms, spots popped up all over the inside of my forearms, all over my upper arms, all over my stomach and lower back, my entire lower legs, not just on my shins but all over my calves, and my upper legs as well. Id often get flares and spots on my forehead and other spots on my face around my eyes. I had already quit smoking by this time but was drinking every week or two in the summer before this happened.
I am still not sure why it got so bad. I shortly there after decided I needed to completely revamp my diet. I was eating a pretty carb heavy diet before, oats or gluten free hot cereal with fruit, peanut butter & jelly sandwiches, sweet potatoes, beats, beans, quinoa, rice. Only protein I was eating really was chicken or fish for dinner and paired with rice usually, or made into tacos with cheese and other goodies you'd eat with tacos. All sorts of things but always "healthy". Often having snacks/dessert too though. Chocolate, cookies, peanut m&m's. But I felt I needed to become more strict and get in more protein as well as I have always been very active and lean and muscular. I got diet guidance from the "REMOVED" mostly. I started eating eggs for breakfast with avocado, usually chicken for lunch with rice or potatoes, started eating beef after having pretty much avoided it for years, raw and unsalted nuts, yogurt, whey protein. I decided to give it some time to adjust. It didn't really accelerate my psoriasis but it kind of just stayed pretty bad and spots grew and grew. About a year ago I even went on a probiotic and did a few rounds of gut supplements for leaky gut. Not really any affect on the PSO.
I always felt tired and bogged down before. Since eating like this I feel stronger and more on it. I feel like a beast mostly. But my psoriasis isn't getting better. I still pretty much eat like this except now I eat oats again, less eggs, cut the yogurt, but always try to balance carbs, protein and fats with all my meals. Its the best I have felt physically. I always do coffee in the morning after water. For breakfast I do a big bowl of oats with some fruit, lunch is beef or chicken or sardines with rice usually (just switched from basmati to brown), dinner is chicken or beef with potatoes (did white and yellow potatoes for a long time, just switched to sweet potatoes), i get snacks in, usually fruit, or banana bread i make with oats, banana, eggs, coconut oil or butter, little maple syrup or dark chocolate.
1 - 3 months ago I've found a bit of healing happening. Spots cleared on my lower legs, forearms, face. And alot of spots became less flaky and scally. Stopped waking up to loads of skin in my bed. I was eating whey protein everyday and gluten by way of oats and loads of potatoes and nuts. But it seems to have gone back to being not great again. Think its cause I started having a few whiskeys on saturday nights watching ufc for too many weeks in a row. Still, ive stopped but over a month ago but still find it to be very irritated. I also stopped the whey and try to do gluten free oats. Ive also started eating more veggies as well.
I am just not sure where to go from here. Thinking of cutting the coffee and beef. Already have been upping the veggie intake. I definitely enjoy and need alot of protein though so i don't know what ill replace the beef with. I have a very very strong appetite. I eat loads of food. Im still super lean and muscular. I also hate leafy greens and veggies like brocolli. They tear up my stomach.
I am at a point where I question if diet even has much to do with this. There were plenty of times I went off the diet and ate lots of chips or processed chocolate or other "bad" things and my skin got lighter and less irritated. Obviously diet is a huge component but I just question worrying about little things like will tomatoes make it worse or will eating chips and salsa one day or eating one kind of nut or skin on chicken actually cause all of this on my skin? I know alot of people say beef is bad, but I just don't know I buy that. I certainly think the fat in beef isn't great but I eat lean beef. I obviously get a little fat but just don't know I believe that a few grams per say of beef fat in my body is causing this.
For about 2 years now, little by little ive cleaned up my diet and lifestyle and intuitively corrected and made changes to optimize my overall healthy but I haven't seen it translate to my psoriasis like I hoped. I don't let it get my down or depressed, maybe the odd day here and there I have that hopeless feeling but i pull myself out. Im pretty positive and motivated. I just don't understand this disease, still.
My plan is keep making adjustments. Like I said I feel its time to cut coffee and eat less beef, just to try. I switched out the potatoes for sweet potatoes and im adjusting to get more veggies. I see it as process of various trials. At this point ive had this so long that the way I see it my only way to beat the disease is to find the formula that works for me. Just cutting this one thing or adding this one supplement or following a basic protocol won't do it for me I don't think.
In addition to diet I know that stress is a factor, as they say, lol.
I certainly have stress in my life. Wife had a baby late last year, we also bought a house last year. Ever since she got pregnant life has changed and my responsibilities have grown. I love it, but it is alot, It was a big life change. That being said, it certainly could be a major factor for me. But I feel like my ability to manage stress is greater than ever. I don't suffer from or experience anxiety. I did very badly in my early 20's but figured that out. Though my psoriasis was easy to manage then even though i ate like crap, smoked, and experienced bad anxiety and depression at times. I feel more fit than ever, sleep better, eat better, have better emotional stability but the psoriasis persists.
Im covered in ugly red spots, often scaly and flaky. I feel embarrassed to take my shirt off around my family and enjoy the lake. I wouldn't want to go to the beach, one of my favorite things to do all my life. Ive always been a person who loves summer and being outside, wearing shorts and a tank top or being shirtless and enjoying the sun. I wear pants everyday though and often put a long sleeve on to go in public. I just seem to have psoriasis pretty badly but i have a healthier diet and lifestyle than most people I know. I know that comparing myself to other people won't do my any good and I just need to look at what I can do to change and what else I can try but its just a tough thing to deal with. I believe that this must be possible to heal naturally. I fear going on biologic drugs.
Anyways, thats alot so thanks to anyone who makes it through, lol. Psoriasis is a strange thing and its tough and noone I know really understands.
Edit by Fred: Mention of website removed.
RE: This forum active? My introduction LONG - Fred - Thu-20-07-2023
Hello SquidBro
to Psoriasis Club. I'm sorry but I had to remove the website you mentioned as we don't allow publicity of other sites. I'm sure it wasn't intentional, but the rules are for all members and it keeps us independent.
You may find this board interesting Natural Treatments For Psoriasis I'm not into the diet thing myself, but do wish you well with it.
Regards.
Fred.
RE: This forum active? My introduction LONG - jiml - Thu-20-07-2023
Hi Squidbro and welcome to the forum . And to answer your question in the title .... Yes the forum is very active and there's always someone here to help.
Read through a lot of your thread and your story resonates with me as my experience was very similar. I don't know if diet can help with the clearance of psoriasis but there are a few members here have had success and I see Fred has pointed you to the Natural treatments boards where you may get some ideas
I would suggest seeing a dermatologist if natural treatments fail to work
There are lots of treatments these days that can give fairly fast relief (not cures ) but certainly will make life more bearable
I wish you luck
Jim
RE: This forum active? My introduction LONG - Caroline - Thu-20-07-2023
Hello SquidBro,
Welcome to psoriasisclub.
We have gathered quite some data and knowledge about psoriasis. Which can be found in a massive amount of posts in the Psoriasis sections of the board.
Fred already pointed to that.
We also have an active off-topic section, as a lot of locals over here have already searched and found their treatment.
Opinions are very various over here and can be said without problems, there are fans of the biologics, fans of Natural treatments, fans of some systemic medications (pills), almost no MTX fans, there is the DMF gang, etcetera, etcetera, there are even fans of buckets of red Merlot wine.
The club is very international, we have members from all over the world.
My tip after reading your extensive introduction is, avoid peanuts and everything made in peanut oil, and avoid tomatoes. For me that has helped.
In the evening, which times vary over the world, we can be found in the bar or we are bantering in several other threads. In the morning we mostly can be found in Huggamug, our coffeeshop in order to have a good coffee and croissant to wake up for the day,
Cheers and amuse yourself over here.
Caroline.
RE: This forum active? My introduction LONG - Raxyl - Thu-20-07-2023
Welcome to the forum Squidbro
RE: This forum active? My introduction LONG - Kat - Fri-21-07-2023
Some people seem to have had success with controlling their psoriasis with diet. Sadly, I'm not one of those. I currently am eating VERY healthy and have had zero improvement with psoriasis. Actually right now it's a bit worse than usual. So, I haven't a clue if one can totally take control over it by lifestyle choices. But, it doesn't hurt to keep trying and knowing that making healthy choices will benefit you in the long run.
This forum is filled with tons of info! The people are nice and helpful and I really enjoy being here. It's a great place for questions and nice to be where people understand the itching, the scales, etc.
I enjoyed reading your introduction and again welcome!
RE: This forum active? My introduction LONG - Turnedlight - Fri-21-07-2023
Hi Squidbro nice to meet you
I have to say I’ve never correlated my diet with psoriasis, for me it seems to be linked with stress as I had flare ups during stressful periods, and weather (in that it’s usually a lot better in the summer than winter).
That’s not to say I believe it doesn’t have anything to do with food, just that I haven’t noticed it responding to dietary changes, personally.
Any way I hope your dietary tweaks are successful and that you find the forum helpful.
RE: This forum active? My introduction LONG - SquidBro - Fri-21-07-2023
Thank you all for the replies, Turnedlight, Kat, Raxyl, Caroline, jiml, Fred, I very much appreciate it!
What do you all do to control psoriasis? I'll do more reading on the forum here but just curious, do most people use and have success with biologics? Ive just always been against big medicine and very skeptical but im starting to feel more like seriously considering it. I don't want to give up on a natural solution but its gotten difficult, im already very strict and disciplined and have been for years now. Im not sure I want to start trying really obscure diets, cleanses and treatments honestly.
Don't know other people with psoriasis, it was always pretty mild until it got severe and it just makes me wonder what its like for others who suffer. How psoriasis progressed or regressed for them and just generally their experiences.
There are times when I feel like I understand psoriasis but mostly I dont, lol. Its just a strange thing. Is it mostly genetic in terms of how it manifests and the severity? How much of an influence is environment, diet, exposure to chemicals/irritants/other factors.
I know I always had sensitive skin. Ive had what I now know was psoriasis, at many times growing up but it cleared up with cream or vaseline or change of season. Thinking back it started as it has become now, after i had pneumonia and went through 2 or 3 weeks of antibiotics when I was 18. Shortly after then is when I noticed it on my elbows. Makes me wonder if its a gut thing like you see many naturpath people claim. Or if its a genetic thing and gut and immune issues at one point triggered it.
RE: This forum active? My introduction LONG - Fred - Fri-21-07-2023
(Fri-21-07-2023, 16:07 PM)SquidBro Wrote: What do you all do to control psoriasis? I'll do more reading on the forum here but just curious, do most people use and have success with biologics? Ive just always been against big medicine and very skeptical but im starting to feel more like seriously considering it.
I'm a big fan of the bio's they have given me my life back, you can read more about them here: Biological Treatments For Psoriasis but others do better on the tablets, see here: Oral Treatments For Psoriasis
I understand being sceptical but most of our members use either the bio's or tablets as they have learnt that not much else will keep it under control
(Fri-21-07-2023, 16:07 PM)SquidBro Wrote: I don't want to give up on a natural solution but its gotten difficult, im already very strict and disciplined and have been for years now. Im not sure I want to start trying really obscure diets, cleanses and treatments honestly.
Alan's thread may be of interest: How I Cured My Psoriasis By Diet
(Fri-21-07-2023, 16:07 PM)SquidBro Wrote: Don't know other people with psoriasis, it was always pretty mild until it got severe and it just makes me wonder what its like for others who suffer. How psoriasis progressed or regressed for them and just generally their experiences.
There are times when I feel like I understand psoriasis but mostly I dont, lol. Its just a strange thing. Is it mostly genetic in terms of how it manifests and the severity? How much of an influence is environment, diet, exposure to chemicals/irritants/other factors.
We are all different but I would say stress plays a big part in starting it off and what makes it flare up. Some say it's hereditary but none of my family had/has it.
I've never found any exposure makes it worse, but you do want to keep the skin well moisturise, Coconut Oil is your friend there.
(Fri-21-07-2023, 16:07 PM)SquidBro Wrote: Makes me wonder if its a gut thing like you see many naturpath people claim. Or if its a genetic thing and gut and immune issues at one point triggered it.
Some say, it's a gut thing, but I'm not so sure.
As you can see it's difficult to treat as like I said we are all different, personally I would suggest get an appointment with a dermatologist, but I'm sure others may say different.
Tips to help you on the forum: As a member you can use the Search facility with things you think may interest you to find others threads, or you can start new threads asking your questions and someone will usually reply.
Also if you click a members name you can check out if they have mentioned what they use or see what threads they have started, also on the right of each members posts you will see those that have chosen to put their treatment in their profile.
Pheeeeeeeeeeew almost as long as your post.
Have fun at Psoriasis Club, just shout out someone will find you.
RE: This forum active? My introduction LONG - Caroline - Fri-21-07-2023
(Fri-21-07-2023, 16:07 PM)SquidBro Wrote: Thank you all for the replies, Turnedlight, Kat, Raxyl, Caroline, jiml, Fred, I very much appreciate it!
What do you all do to control psoriasis? I'll do more reading on the forum here but just curious, do most people use and have success with biologics? Ive just always been against big medicine and very skeptical but im starting to feel more like seriously considering it. I don't want to give up on a natural solution but its gotten difficult, im already very strict and disciplined and have been for years now. Im not sure I want to start trying really obscure diets, cleanses and treatments honestly.
Don't know other people with psoriasis, it was always pretty mild until it got severe and it just makes me wonder what its like for others who suffer. How psoriasis progressed or regressed for them and just generally their experiences.
There are times when I feel like I understand psoriasis but mostly I dont, lol. Its just a strange thing. Is it mostly genetic in terms of how it manifests and the severity? How much of an influence is environment, diet, exposure to chemicals/irritants/other factors.
I know I always had sensitive skin. Ive had what I now know was psoriasis, at many times growing up but it cleared up with cream or vaseline or change of season. Thinking back it started as it has become now, after i had pneumonia and went through 2 or 3 weeks of antibiotics when I was 18. Shortly after then is when I noticed it on my elbows. Makes me wonder if its a gut thing like you see many naturpath people claim. Or if its a genetic thing and gut and immune issues at one point triggered it.
Over here we all use different medication, some biologics, some pills, some light (very few), some creams, some alcohol (
), some natural, some no treatment at all, some humour. It really is a search what is working for you, at this moment it is not possible to define what will work for you. The project Next Generation Immuno Dermatology is going to try to make this possible, but it is a long running project.
They have found genetic elements that may make it a family-inheritance and will make you more vulnerable, but over here in this forum, we overall think that literally everyone can get it.
Triggers for getting it are widely known, things like stress are very important, trauma, streptococcus and staphylococcus, are the among the most serious.
Also smoking, alcohol, environment, BMI, etc. Are seen to have an influence.
Psoriasis of course is no skin-disease the problem is much deeper in our bodies, but exactly where….?? Well no dermatologist can tell you that.
So… most of the known medications are all suppressors of the problem. We know that the problem is in our immunesystem, so suppressing certain parts of the immunesystem (what biologics do) does work. But why the immunesystem reacts, that is not clear.
It is not an auto-immune disease as it lacks the definition of an autoimmune disease, which are antibodies… Psoriasis has no anti-bodies.
It does have comorbidities…. That is that you can get other problems, that you are more vulnarable for e.g. Crohns, or heart problems, or… well to many to want to know. Except for Psoriatic Arthritis, where you should be very alert for.
Why? Well they think that the permanent inflammation activity in our bodies can cause that.
I very much doubt that the problem is in the gut. I have never heard a dermatologist talk about a leaky gut or so, things that are popular in alternative medicine.
That the Microbiome can play a role, that is very much possible, as e.g. Alan, with his total change of diet, and more like him, do reach success.
Myself I think the problem is deep in the centre of our cells. In our cells all kinds of chemical reactions are executed and if such a reaction has a problem, it can cause waste of that faulty reaction to kick off the immune system and so cause our problems. This hypothesis has already been described, but has not yet been investigated.
Myself I am one of the DMF-gang
, as Fred always tends to say. There is enough written about it here on the board if you would do a search. It is rather common in Europe, but probably not available at your side. As Fred says, any questions, just pose them
Caroline