Am I an annoying patient?? GP / DOCTOR / NURSE QUESTION

[Sausagedog3]

I’ve had a problem with my skin for several years now. It started out of the blue and I had massive patches of weeping, oozing, scaly skin on my scalp, face and ears. I’ve posted about it before.

I’ve had countless appointments with the GP and nurses and everyone has been so nice and helpful, but I feel bad as I’ve taken up a lot of appointments. I was referred to dermatology but obviously with covid and waiting times it was around a year and a half and in that time I had countless appointments at the GP surgery because it kept flaring up again. We tried so many different antibiotic tablets, steroid creams, emollients and all sorts of shampoos and other things. We even tried antifungal tablets too. I tried hibiscrub, different elimination diets in case something in my diet was causing it, everything I could buy off the shelf. Some things helped initially but then it would just flare up again.

Once I was seen at dermatology (recently) they diagnosed it as psoriasis and gave me some stronger steroids which worked initially but then stopped. I’ve tried to get in contact with them to ask for another appointment as it’s flared up again but there’s a massive waiting list for appointments and understandably something like psoriasis isn’t urgent or as serious as other problems. I think I’m just supposed to go back to my GP again in the mean time. But I feel so embarrassed going back because I’m being that person who keeps coming back again and again. I’m also a massive over thinker and worry myself silly about nothing but I just felt so bad going back again and I didn’t want to be a frequent flyer that you always hear people talking about, but at the same time, it’s all flared up again and I’m really upset about it all. am I being a frequent flyer by going back again?

I could actually burst into tears- it’s all over the back of my head and my hair is literally soaked and tangled with liquid from the wet patches. It’s starting to move from my head to my neck and ears now too. I’m so worried because nothing seems to be helping it and I’ve followed all the instructions about applying the treatments. I just want it to stop 😢

My FIL suffered similarly.

It took a long time but eventually a type of autoimmune disease was diagnosed.
Once a suitable drug regime was worked out, he was fine.

Like I said, it took a very long time to diagnose it as doctors weren't looking for it.

@snowsilver

I use an older version of this.

Being out in the sun makes the psoriasis on my body completely disappear. The lamp doesn’t make it go away completely but certainly helps. UV lamp

It looks a bit like dermatitis herpetifomis. I have coeliac and suffer with this on my legs if I accidentally eat gluten. It itches so bad I want to peel my skin off. It weeps, it crusts, it's sore and I feel bruised all around it.

I feel a lot better about it all, thanks so much 😊

nobody has ever made me feel like I’m being annoying and everyone has been really helpful, but I just got it in my head that I was being one of those annoying people you always hear about, by going so many times and because it’s still not improving. I’ll definitely go back and see about if there’s anything else I can get to help it. I was just so worried about being annoying or wasting their time especially with how busy the nhs is.

It’s like the entire back of my scalp is on fire, it’s like big sticky open wounds which alternate between being open and wet and crusty and scaley. I’m so fucking fed up with it- my hair is permenantly a sticky mess because of my scalp, and brushing it is agony I end up crying doing it. I’m having to sleep sitting upright because it hurts to much to lie on it.

I really appreciate all the suggestions on the thread so far, unfortunately I’ve tried them all and haven’t had any real success- sometimes it gets better for a day or maybe even a week, then it just starts all over again. But thank you very much anyway I’m really grateful for the suggestions.

it’s itchy and uncomfy but I don’t think I’m scratching it, I guess I could be during the night, but I’m a nail biter and have got 0 nails so I physically can’t.

This started pretty much overnight and before this id never had any sort of skin problem. It’s so embarrassing and painful and I’m so fed up of it

That definitely does, thank you very much! The NHS is obviously really busy and overworked especially at this time of year and I just didn’t want to be annoying and add to it when it’s not really serious or a huge problem, it’s just unpleasant but it’s not exactly serious. I’m a bit of a worrier aswell so I didn’t want to be annoying, not that anyone has ever acted like I’m being annoying, I think i was just overthinking it all!

I'm not medical but don't feel worried about going back. I have chronic eczema and the problem is there's no cure so you do have to go back loads for treatment during flare ups.

It's sadly how chronic conditions work and the doctors know that.

And I'm on the biologics mentioned by a PP. it took me about five years to finally get to the point they would put me on them. There's a lot to try before they'll offer them.

Don't give up hope but you do have to keep pushing for further treatment and investigations.

I used to have psoriasis on the palms of hands and soles of my feet. It was dreadful I couldn't touch anything or walk. I was in agony all the time. I know how miserable it can make you, so I really feel you op.

I like you tried diets and was on strong steroids and creams from the doctor. They changed creams all the time nothing seemed to help.

I had had it for around 2 years when I decided to break up with my boyfriend of the time (who was a nightmare and massive source of stress.) Mysteriously the condition disappeared shortly after and I haven't had a flare up since, its been over 10 years!
I now wonder if stress was a major factor. You did mention that you're an over thinker. Perhaps you could try taking a breather where possible, work on making time for yourself and try to keep things as stress free as possible. I know it's easier said than done.

I hope you get your appointment soon. My thoughts are about how you can get the best out of your appointment when it comes. It sounds like you have tried many things - take a written summary. You’ll not remember all the details and it will be hard to convey it all. For example there is a difference between ‘tried T-gel - didn’t work’ and tried t-gel for one month washing my hair everyday. Noticed no change (neither better or worse). What differences does your cycle make? Weather? Diet? Soap/washing powder/frequency of showering? Stress levels? What about any medicines?, topical creams. Eg steroid cream x (5days) helped by (described) (when). Tried again in (date/days) made it worse by (xxx). You might spot patterns, but the main purpose is for your dermatologist can assess all this information alongside their knowledge of all the other patients they have treated. It also hopefully prevents you coming away thinking you haven’t been heard or being given a treatment you feel you have already tried. I also agree with the posters recommending trying to be as compassionate as possible to yourself. Whether or not stress has has an impact on your condition, having a skin condition (especially when it interferes with sleep and is painful and itching) is immensely stressful.

I agree that you need to see a specialist. Dermatology or as a pp suggested, rheumatology. You’ll need a biopsy to confirm diagnosis and then further investigations and proper management by a specialist in whatever condition it is. Your GP may have been kind but they have also been ineffective.

Hello,

I know this post is a few years old, so I'm sorry about that.
Has your scalp cleared up? I really hope so, or that you are able to manage it.

I have similar patches to those that you've described and also get psoriasis. It was psoriasis, but mine has developed into this. My sister advisor me to get Nizoral shampoo and my GP has prescribed me similar (I have prepaid prescription which helps!!). I've also tried Fucidin (hydrocortisone based cream), antibiotics etc. but it's a nightmare.

How did you manage to sort your scalp if you did and if not, how are you coping?

Take care,
Alice

I have been suffering from chronic spontaneous urticaria since 2020, my GP initially referred me to dermatology at my local hospital, who didn’t seem to understand, and quite frankly the department was shambollic. I went back to my practice,and when I told another GP about taking ice blocks to bed to cope with the itching, she referred me to St Thomas’s allergy clinic, treatment much better as are communications. I suggest that you find a hospital with specialist psoriasis clinic.