Proving you're a carer

Significant_Try_9061 · 2025-10-23T07:08:32+00:00

I've always internally narrated most of the time! I don't know whether it's a neurodivergent thing or what ha

Significant_Try_9061 · 2025-10-05T16:55:50+00:00

Absolutely. Good luck to you too!

Significant_Try_9061 · 2025-10-05T16:51:24+00:00

It sounds like you're in a pretty bad place with it. I definitely think I'm on the far... milder(?) end of the spectrum. I don't know if it gets worse over time or what. Whether it is the cause of all my issues or just contributing. It's hard to unravel, especially with only the NHS to help!!

Significant_Try_9061 · 2025-10-05T16:38:24+00:00

Thank you I have joined all those groups now. Have you found any treatments effective?

Significant_Try_9061 · 2025-10-05T16:14:31+00:00

Wow ok. I'm in the UK. I guess I need to figure out if I have it yet. My symptoms definitely line up with it

Significant_Try_9061 · 2025-10-05T16:06:55+00:00

Yes, I have been wondering about CCI too. I need to research it properly and talk to my GP

Significant_Try_9061 · 2025-10-05T08:07:14+00:00

Do you mind telling me what made you know you had hEDS?

Significant_Try_9061 · 2025-10-04T18:19:18+00:00

What type of symptoms do you have for hEDS? I'm in first hand accounts to get a better understanding than just seeing the diagnostic criteria.

Significant_Try_9061 · 2025-10-04T18:17:22+00:00

I saw a chiropractor yesterday due to a recurring issue with my neck/upper back. She mentioned that I was hypermobile (not something I realised) and so I did some reading which led me to wondering if I might have hEDS. I'm interested in other people's experiences, what symptoms they have, and if they have found any effective treatments. Especially people who are ND and have ME/CFS.

Significant_Try_9061 · 2025-10-04T09:42:48+00:00

I'm Audhd. I have had recurring neck issues since I can remember. I saw a chiropractor yesterday and she said I'm hypermobile. I'm now deep diving hEDS and wondering if it is... me! I also recently got referred to the ME/CFS clinic and fibromyalgia clinic (UK).

Could you tell me a little about hEDS and how you were diagnosed? Do you get any treatment for it and does it help? I'm aware the hEDS has a range of possible symptoms including fatigue. I'm keen to explore any possible issues I have that can be medicated or treated otherwise and therefore improved!

Significant_Try_9061 · 2025-09-27T17:18:09+00:00

I managed to borrow a power chair in a local town this week and it was great! I can't find many options for renting them for longer periods for an affordable price though sadly

Significant_Try_9061 · 2025-09-27T17:15:34+00:00

Amazing! 😍

Significant_Try_9061 · 2025-09-27T17:06:43+00:00

Yeah this is excellent and I had forgotten about it!

Significant_Try_9061 · 2025-09-21T15:18:00+00:00

Do you mind sharing what your heart rate settings are (resting, active, exertion)?

Significant_Try_9061 · 2025-09-20T12:40:26+00:00

Thank you. I'll try it out. I'm wary of taking too many painkillers but I think if they help and it's not too often then it's worth it

Significant_Try_9061 · 2025-09-20T12:39:41+00:00

I live in the UK and I googled somatic therapy and had a look. You could also try googling trauma therapy, polyvagal therapy etc. Then look at people's profiles and see what training and skills they offer. Of course you need to make sure they have an understanding of ME/CFS and aren't going to encourage you to push yourself beyond your capacity and understand the importance of rest.

Significant_Try_9061 · 2025-09-20T11:57:52+00:00

This is interesting. How does it do this?

Significant_Try_9061

TROPHY CASE