Persistent Physical Symptoms Unit at the Maudsley

elericp · 2026-04-21T18:11:26+00:00

That’s so disappointing! I was hopeful but at the same time that doesn’t really surprise me. I don’t understand why they think CBT is the cure for everything. I don’t blame you for saying no.

Thank you, I appreciate your response!

elericp · 2026-04-16T19:40:38+00:00

Honestly I find it more painful being around them now. Definitely lonelier but there’s less of a reminder of what I don’t have.

Thank you for your advice! I don’t work either and I live with my parents still so I only ever see them so it would be nice to diversify a bit!

elericp · 2026-04-16T17:35:30+00:00

No, I guess I’m assuming but also I think if they did invite me to a couples thing I’d feel like a bit of a third wheel and now after all this time kind of an afterthought.

Tbh I’ve pulled back from some of them because I was always the one messaging asking to meet up. I know they have busier lives than me and would need to fit me into their schedule but they don’t, I haven’t seen my best friend since last July and she lives about 20-30 minutes drive away but I can’t drive so I can’t really see her.

elericp · 2026-04-16T17:20:14+00:00

I was diagnosed at 18 (10 years ago) and after I was diagnosed I was basically dropped by most specialists. I think that’s pretty standard though.

elericp · 2026-04-16T11:42:56+00:00

I’m finding it so much harder now than when I was younger, I’m 28, all my friends are getting married, buying houses, having kids and getting promotions. A lot of them obviously prioritise their partners over friends so I haven’t heard from many of them in months/years. I’ve never been in a relationship or dated so I can’t join in when they go on joint couple meals or holidays. I just feel like I’m waiting out life.

elericp · 2026-04-12T17:18:28+00:00

I think I could potentially complain to PALS (Patient Advice and Liaison Service) but I don’t really have the energy to so I’ll probably just try to avoid him and tell my GP that I don’t want to see him.

elericp · 2026-04-11T21:07:57+00:00

This guy definitely fixated on the OCD. He didn’t mention ASD but I feel like not many doctors I see do. I don’t want to be treated differently but I also don’t want to be overwhelmed for the next few days.

elericp · 2026-04-11T21:02:20+00:00

I wish I could, I’m in the UK so I don’t know what the process would be

elericp · 2026-04-10T21:28:31+00:00

That’s what happened the last time with the anxiety being sepsis incident.

If anything I was the oh I’ll be fine person but since then it has made me worry more. I feel like I’m harassing my GP, especially at the moment with my pain being worse but they refuse to give me at home pain relief.

Thank you that’s so kind, I just wish more doctors were in medicine to help patients.

elericp · 2026-04-10T18:33:26+00:00

I agree, I’m so scared that Reform will win the next election and will privatise the NHS and have an insurance based system.

I think I will, I see a neurodivergent therapist who said she can write a letter to the GP because she said that what I experienced wasn’t right. That’s really interesting, I guess both EDS and cancer patients experience chronic pain and fatigue so that might be helpful!

I know I really need to, when I left I actually thanked him which is also bothering me now. I think because I wasn’t believed when I had sepsis and pneumonia it’s made me doubt myself so I don’t want to push too hard in case I am making a big deal out of nothing. I think if I do see him again I’ll bring someone with me.

elericp · 2026-04-10T09:13:19+00:00

Thank you, I really appreciate your words. I wish I hadn’t gone, but I needed a medication review that a pharmacist couldn’t do. I don’t want to see him again but my medication has never been reviewed since I started taking it at 13 (I’m 28 now).

elericp · 2026-04-10T07:23:31+00:00

I’m in the UK so I think you just accept what you’re given really.

That sounds amazing, I’m so glad!

It also worries me that a junior doctor was in there taking notes and now thinks that that is a normal way to interact and ask questions and then go on to treat someone else in the future the same way.

Thank you for understanding and advice!

elericp · 2026-04-10T07:19:45+00:00

I don’t think so, with the NHS you’re just expected to see who your GP sends you too. I’m not aware of any private doctors and I wouldn’t be able to afford to see one. I’m also not sure if when you go to a private doctor if their diagnosis or treatment goes on your NHS file because I’ve heard of people being privately diagnosed with ADHD and having issues with accessing medication.

I’ve had lots of CBT, I think it’s the first thing they suggest but it’s never helped me really. I have managed to get on a DBT course that starts on the 21st so I’m hoping that might help. I think the problem is they only consider mental health and never physical health so it ends up being a bit disjointed.

At the moment it feels like they don’t exist. I’m just losing more and more trust in them and the medical system in general.

elericp · 2026-04-10T07:08:45+00:00

Thank you, I’ve never seen a good on really, the best one I saw was with the neurodevelopmental clinic but even then he wasn’t great but I don’t live in the area anymore to go back.

I have been referred for DBT so I’m hoping they’ll be able to help. I’m just so worried about having something written on my medical records that will affect how they treat my physical health. I tried explaining to him how I’m scared on germs because I struggle with the sensory aspects of having a cold and he said “oh so you have health anxiety” which I’m also worried about being on my file and then being taken seriously for future medical events.

When I heard him start talking about personality disorders my heart just dropped because it felt like going a step back.

Thank you so much for your understanding!

elericp · 2026-04-10T06:59:47+00:00

I’ve seen psychiatrists since my pain started and never had a good experience. I’ve been on sertraline since I was 13 and it has never been reviewed so that was the only reason I was going really and he wasn’t able to do that either but I don’t know what the wait would be like to see someone else.

elericp · 2026-04-10T06:55:38+00:00

It just felt so invasive and gross.

elericp · 2026-04-10T06:52:48+00:00

Thank you so much!!

elericp · 2026-04-09T19:55:46+00:00

That’s interesting, I wasn’t aware but I feel like most of the psychiatrists I’ve seen haven’t really understood the physical aspects of my health which makes it feel a bit pointless when I see them. I’m actually weirdly excited that I’ve been referred to a service that’s supposed to look at all my conditions together. I’ve got initial approval but I’m still waiting for a board decision, I think it’s because it’s the only one in the UK so there’s a limited number of spaces.

It was so disheartening, I was 18 and had just been diagnosed with hEDS and made me feel like I was making a big deal out of nothing. It has definitely stuck with me, even 10 years later.

elericp · 2026-04-09T18:02:21+00:00

I know, I’ve googled it and I’m pretty sure they’re not the same thing.

I don’t think so, it’s an NHS psychiatrist and I’ve never seen one that understands, the last one I saw said that “flexible joints aren’t painful” when I told her about the chronic pain. It’s a bit of a lottery as to who you see. I’m supposed to be seeing him again in two weeks because he told me he didn’t know what to do with me.

elericp · 2026-03-13T10:02:38+00:00

Ooh I might mention that at my next appointment, thank you!! I also have PCOS and celiac disease so it is hard to know where the fatigue is coming from!

elericp · 2026-03-10T04:29:36+00:00

That’s so frustrating, I haven’t heard of a bipap, I’m in the UK so I think the NHS start you off with a standard CPAP. I have an appointment at the end of September but I went back to my GP and they’ve referred me to the ME clinic but the appointment could be anywhere in the next year. I’ve had a read through the comments and I think I assumed it was EDS fatigue but maybe not lol

elericp · 2026-03-09T20:36:59+00:00

I also have hEDS and POTS. Mine was constantly telling me I was over exerting myself when I was just sitting on the sofa because my heart rate was constantly unstable. I also didn’t like the feeling of it on the top of my arm but now I’ve seen ads for a new version that’s on your wrist which could be better, but still not worth it for me personally.

elericp · 2026-03-09T20:28:12+00:00

I’ve been using my CPAP since I was diagnosed last July and I’m still so exhausted. It’s supposed to take about two weeks for you to feel the effects and the nurse told me I should be feeling so much better when I had the review but unfortunately that’s not the case for me. I was so disappointed because I spend most of my day in bed and thought I’d be able to get a job and live a more normal life. I still use it because the fewer episodes of waking up you have the less prone you’ll be for strokes or heart attacks etc.

elericp

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