I've had enough and I need to put my thoughts somewhere. Sorry for the rant!
I have a well balanced, mostly vegan diet. I eat lots of ant-inflammatory foods. I take vitamin supplements daily. I exercise regularly, I'm a healthy weight. I don't smoke. I tried not drinking, it didn't make much difference, and I'm young, so I want to occasionally drink. I feel like pso already made me sacrifice so much in terms of being young - unable to wear whatever I want, unable to swim and fully enjoy the summers, feeling too ashamed to go home with interested people and reveal my true body under the clothes, constantly feeling bad about myself and having very little self-esteem as a result. After so many years of pso I feel like I'm constantly masking how I really feel. When I tell or show people, they look at me with such pity, it makes me feel worse. Or I feel like I'm making too much of a fuss when other people have much worse illnesses.
I was first diagnosed with psoriasis aged 14 - It was winter and one day I woke up covered in tiny blotches that grew in size and thickness over time. After lots of back and forth I was diagnosed with guttate psoriasis and eventually received phototherapy, which cleared a good percentage of my skin - a holiday in the sun got rid of the remaining stubborn patches on my legs (legs always seem to be the parts that start and go first for me - anybody else?). By this time I was almost 16.
I had occasional patches appear on my ankles and feet, nothing too bad, until I turned 21. My legs once again became dalmatian like, and I had plaques on my face for the first time. After many more months of back and forth (why do doctors always say it will go away by itself after a couple of months and prescribe nothing? I'd rather a steroid to manage it than just letting it get totally out of control) and symptoms getting worse, I received my second round of phototherapy age 23. Again, the phototherapy almost worked - I still had stubborn patches on my legs left over. I was then prescribed Enstilar foam, which cleared up the remaining patches.
I was told to use Enstilar on any future flare ups or small patches - which I did for 4 years. It worked for that time, until it didn't anymore. Last summer, after a very bad sore throat, I had a huge flare up, the Enstilar did nothing. This flare up has has been up and down since then. I was prescribed 3 different steroid creams, some of which helped with managing but don't get rid of it.
I'm now on a waiting list for phototherapy again but there's at least a 10 week wait. I feel so fed up. I was reading online about the connection between female hormones and pso flare ups, and realised most of the time I had minimal pso complaints I had been on the combined contraceptive pill. I have noticed my pso is more inflamed during certain points of my cycle, and I figured it's worth a shot to see if this has any impact on my skin, so I will start that prescription next week. Currently the worst pso patches are on my legs, thighs, buttocks, lower back, tummy, back of upper arms, breasts - other than my legs, areas of my body that have the most fat. No idea why this is. Other triggers for me have been sore throat and covid. And probably stress but it's hard to tell.
No doctor has ever mentioned treatment other than topical steroids/phototherapy. I've never had any intolerance tests. Every time I've had blood tests there hasn't been cause for concerns. This phototherapy wait time is making me so frustrated. I would greatly appreciate any words of advice. How do you love yourself when you hate what you see? Any treatment advice? How do you deal with dismissive doctors? Would you recommend going private? How do you deal with the mental toll of pso?
Any advice greatly appreciated. Thanks so much for reading.
Posted Thu 11 May 2023 11.52 by Steve
Sorry your having a really tough time and know we’re your coming from as many of us. doctors are not well informed about the condition try and stick it out keep doing what you doing and doesn’t matter if you have a drink or anything whatever makes it easier for you. You will get there at some point. I tried loads of stuff and still looking just take it easy.
Posted Fri 12 May 2023 07.32 by Becca’s mum
I think you're very brave to share your feelings and experiences, my daughter is 30 and has psoriasis and when I read your post, I could hear her voice, because that's been her experience too. I remind her and you that psoriasis does not define you, you are resilient and strong and you should never feel shame about yourself or your skin.
Interestingly, when my daughter was pregnant her psoriasis completely cleared, so I think there's a lot to be said about hormonal changes and I'll mention to her about the combined pill as I don't think she's ever been on it, so thanks for sharing that.
We've resorted to hiring light therapy units and found this to be helpful, it's a disgrace that there is not enough treatment options or research done on the NHS , as living with psoriasis is as debilitating as any other chronic illness .
Maybe we could through this forum, lobby the health minister to prioritise psoriasis and research into treatment,
Hold your head up high and don't give up,
I never understand the statements where people describe plant based diet as anti-inflammatory. Meat and fish are fully broken down by hydrochloric acid in the stomach making the broad range of nutrients we need ready for absorption. By contrast plants need to be broken down by gut bacteria lower down the digestive tract.
A combination is probably fine but going veg only, in my opinion but based on the simple logic above, seems like a long term recipe for ill health.
Of course both food sources are inflammatory if not sourced naturally. I consider supermarket foods "frankenstein" foods which inevitably have some sort of chemical intervention which isn't healthy in the long run.
If you can, get from local farms where you can see how they raise animals, dairy and grow veg/ fruit.
I appreciate that this isn't easy for many but it is the best for our health.
Confusion is added to by mixed terminology, and elements of pseudo-science.
For example, which foods would belong in the following categories, or be described according to these terms: inflammatory, non-inflammatory, or anti-inflammatory. (indeed, is non-inflammatory the same as anti-inflammatory).
There are schools of thought that group of plants ( eg so-called nightshades) , are inflammatory or at least contribute as triggers to psoriasis, yet many people consume tham or cut them out with no effect on the severity of their psoriasis (much the same with alcohol).
The sceptic in me also cannot help wondering why an apparently large proportion of American-origin YouTube channels and websites feature people in white coats, calling themselves "Doctor" and offering their subscriptions and DVD-courses and books on how to cure or banish psoriasis, are actually Chiropractors?
Posted Sat 26 Aug 2023 20.15 by New2This
Hi @OhNo_NotAgain?, I totally empathise with your situation. I stopped going to the gym eventually cos of my psoriasis. I agree with others that GPs tend to just prescribe corticosteroids at first and have little understanding of our condition. Its definitely more the realm of dermatologists in my opinion. Enstilar by far yielded the best results for me as opposed to the cheaper ointments and creams. I'm here to listen if you want to talk.
Posted Sat 26 Aug 2023 20.20 by New2This
I would like to add that I often feel baffled by some of the replies on this site in general which is why I don't post often. It isn't a battle of intellect at the end of the day. We all have psoriasis regardless of lifestyle.
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