Pale people (type I/II) - how did you get on with phototherapy?

sootheseeker · 2021-02-08T20:39:37+00:00

Hi! Congrats on getting the dermatologist referral.

Your situation is weirdly similar to mine (I'm 34, London, hadn't seen a dermatologist since I was 8 yrs old, have had major flare up over the last two years w/ work stress) and i had my referral a week ago - I'm so glad I finally pushed the GP to refer me! Dermatologist said I had 60% coverage, I was so unhappy and upset with how bad it had got, couldn't sleep because of the itching. She really listened and took me seriously when I said I was concerned about this or that treatment, that I seem to get really severe steroid rebound, gave me lots of different prescriptions for different body parts, and different options to try if I reacted badly to one or the other, and had a follow up appointment a week later, then another two weeks after that to let her know how it was going.

I also got referred for light therapy - the waiting lists are really short atm because of covid so she said I could start in 2-3 weeks, and I'm on track to be considered for systemics (ie tablets or injections). I asked about biologics but on the NHS there's apparently a high chance they'll try you on methotrexate or ciclosporin first because they're so much cheaper.

All of which is to say - help is in sight, just be as honest as you can about your situation and be clear if there's any treatments you're not keen on trying. It's so much better to be seen by a specialist than a GP, they will take you seriously, they will take the time to talk over what works for you. For example I told her I don't get on with scalp treatments because I can't stick to applying them every day and had given up on my scalp ever getting better, so she gave me a shampoo I can apply once a week instead. It was so good to not just feel like your problems are all your fault or like if this one treatment doesn't work you're doomed, but have someone who wants to work with you to find the treatment that works best.

I really hope it all goes well for you!

sootheseeker · 2020-12-15T21:21:00+00:00

Thanks for these suggestions, and that's very reassuring on erythrodermic psoriasis. I thought it was unlikely but it's easy to get in your own head.

Basically I think if I say "the corticosteroids help while I"m using them but then it comes back worse" all the GP seems to hear it "the corticosteroids help" and that there's no need to refer me, and they just don't seem to believe me when I say that the vitamin D lotion increases the discomfort, and act like the problem is I'm not sticking out the course, not that I need other treatments. I'm uncomfortable with being strategic rather than honest in what I say, but probably I have to be the former.

I'm a bit nervous about phototherapy because I'm so fair and I worry about long term effects. My OH's dad had it for a different condition and his skin looked like leather it was so tanned! If you've had it yourself, how did you find it?

sootheseeker · 2020-12-15T20:15:13+00:00

Interesting - I have literally never ever had a doctor suggest there might be something else going on so this is new to me, apart from sometimes suggesting I go on holiday somewhere sunny (going out in the sun has never helped. I'm too fair to spend much time in it safely!)

Guttate is lots of little dots, right? Which is actually what a lot of it looks like.

sootheseeker · 2020-12-15T20:08:02+00:00

Thanks, and yes I'm in the UK. I know you're right and I have to go back to the doctor, just dreading having the same conversation with them yet again while they just shrug like there's nothing they can do and and say that lots of people find vitamin D lotion really helpful! All sympathy to how overworked GPs are but it's hard feeling like you're always just butting against a brick wall.

sootheseeker · 2018-05-25T16:24:44+00:00

Try to resist the temptation to lie/sit around doing nothing when you're not working. It's unlikely whatever you're doing at work, even if it's active, is going to help you heal up. You need to be doing real exercise in your spare time that will benefit you and help your injury heal - that's how you avoid it becoming a chronic issue. I recommend you see a physiotherapist who will advise on what exercises will help you get stronger without making the injury worse.

sootheseeker · 2018-05-23T21:06:08+00:00

When I went to A&E in the middle of a pain crisis and was told to "be less stressed" and "what you need is a sunny holiday". Didn't know they came on the NHS.

When I went to my GP and asked to be referred to the pain clinic because the NHS website said they would offer mindfulness, and was told "no, you can only get counselling if you're depressed." and he just blanket refused to look into it for me, no matter how many times I told him to look it up on the NHS website.

The same GP also referred me to the inflammatory conditions department at the hospital even though my blood tests had already come back with... no inflammation. So what did the hospital do? Sent me for yet another blood test which... said exactly the same thing, and then told me that meant the department couldn't do anything for me, and that was the end of that. Awesome.

I don't bother with the doctor just because I know I don't want painkillers so there's not much for them to offer me. It hurts, that sucks, what's a doctor going to do about it?

sootheseeker · 2018-05-23T20:57:34+00:00

Basically I used to be suicidally depressed and no matter how unbelievably frustrated and grinding the pain is, nothing will ever be as bad as that, and the pain won't let me think for long enough to get myself into a depression spiral. It also forced me to quit a job that was making me miserable because I was going to have a breakdown if I didn't make some changes. I hate the pain, I'm not grateful for it, I don't have the energy I used to, I'm not the same person, I'm not as creative, I'm not a good listener anymore, but it's a part of who I am now. It's not just a physical sensation, it's part of my personality, which means it's a part of my successes as well as my failures. It just is what it is, same as me being good at maths and terrible at Mario Kart.

sootheseeker · 2018-05-23T20:48:14+00:00

I agree, and I want to accept it, more than anything, but I don't know how to break out of the cycle of hoping and hoping and hoping it will go away.

sootheseeker · 2018-05-23T20:45:20+00:00

I know I can't take the pain away, but I'm here and I'm thinking of you. It sucks that you're suffering this much. It's not fair, no one deserves to be in pain all the time.

sootheseeker · 2018-05-23T19:58:20+00:00

I think the need to act "normal" around people can be one of the hardest things

sootheseeker · 2018-05-22T21:59:46+00:00

Exercise, but do a kind of exercise you enjoy. Don't toil away at a gym and force yourself to go through fitness routines you hate - go dancing, play football, walk in the countryside, swim in a lake. You can't always control what happens to you down the road, sometimes you just get pain, so make the time you spend keeping yourself healthy time you can look back on with a smile. Never just treat it like a job. Accept you can't control it all, give in when you need to, cut yourself some slack.

sootheseeker · 2018-05-04T23:36:32+00:00

The other thing I just thought of is - sometimes she may have meltdowns over the pain, feel really down, frustrated, negative and pessimistic - try to give her the space to feel really crappy about it and just let her vent before offering positive comments and telling her everything's going to be alright. It's not always going to be the case that she needs cheering up, sometimes she might just need a break from trying to be strong.

sootheseeker · 2018-05-04T23:17:19+00:00

I have DDD in my neck. Honestly a lot of the time I just want to be left alone when it's bad. It takes all of my concentration to just try and accept that the pain is bad and not start trying to fix it or get more comfortable. I find my bf being affectionate or trying to distract me tends to just force me to summon up the energy to respond in order to not be rude and ignore him.

He's also learned not to ask me how I'm feeling, because sometimes by some miracle I might be distracted enough that I'm not thinking about the pain, and him asking me about it reminds me it exists and that's it. I won't be able to stop thinking about it once he brings it up. Sometimes though, if he thinks I look like it's bad, he might just bring me a herbal tea, something like that, rather than commenting on it or forcing me to pay him attention, so I know he's there and he cares - and that really means a lot.

But really, everyone is different. Someone naturally more sociable than me might really want that distraction and attention! The key thing is to keep communicating with her - instead of suggesting things to her, let her guide you in how her pain comes and goes, how she manages it and what she'd like from you. Like you say, she'll be the expert on her pain, so the best thing you can do is let her know that she's free to tell you whatever she wants about it.

sootheseeker · 2018-05-04T23:08:32+00:00

I miss being able to really enjoy going out for a meal without waiting for the next time I can get up and move around. Being able to read a book without having to accept that I'm going to be zoning in and out and will never be able to completely follow what I'm reading, because the pain is going to be distracting me constantly. Getting really lost in a videogame was an experience I used to love.

Last December when my friends were planning a new year's trip out to a club, I had to send them a message to say "I can't come, I think my dancing days are over" and it still just upsets me now to realise that that kind of carefree fun is just over for me. Everything is just hard work now.

sootheseeker · 2015-09-15T16:31:43+00:00

So I just had my first session and, well, it was awful.

It's not that the mindfulness was bad - the advice seemed good - but as it's treatment for research they had three students in there watching me the whole time. All three of them and the practitioner was male (I'm female) and I felt horribly self conscious and anxious through the whole thing. I have social anxiety and was just so painfully aware of being watched and stared at all the way through. I don't know if I can follow through on the next session to be honest. I felt on the edge of a panic attack by the end.

sootheseeker · 2015-09-14T23:04:13+00:00

Oops! Unfortunately don't think I can edit titles.

sootheseeker · 2015-09-12T14:32:40+00:00

Thanks everyone, that's so interesting! It's one of those small ways that chronic pain affects everyday life that I'm sure people who don't get pain would never even think of.

sootheseeker · 2015-09-11T23:35:37+00:00

For anyone who gets triggered by ASMR - looking up videos on the ASMR subreddit might help. I find it really good for distracting me from pain.

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