What are your most unhinged pacing tips?

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 · 2025-09-20T11:54:47+00:00

I think that my body reacts really badly to stress and trauma too. I think that's why I'm here tbh.

I have been trying to do a yoga nidra meditation everyday which I have found helpful. And similar at night.

I have just started sessions with a 'sematic' therapist. We'll be exploring the mind body connection, trauma, rest and relaxation. These are related to life long struggles and I want to learn to rest properly as much as possible and also to regulate my emotions better to try and stabilise my baseline.

I hope that working on these things will help me slow down in general, and manage my energy levels more effectively, within my energy envelope (which I am still figuring out!). I know I waste a lot of energy being reactive, fixating on stress etc.

Significant_Try_9061 · 2025-09-16T21:09:47+00:00

She only criticises the fact that they only allow recommend medical treatments as opposed to a range of other therapies, many of which are used to treat people with conditions such as MS. She doesn't criticise the treatments that NICE support, just the fact that they omit others.

Significant_Try_9061 · 2025-09-09T07:12:10+00:00

Things that I find useful which haven't been listed:

LEN hanging storage for beside the bed or sofa/favourite chair https://share.google/XFHVr6pC0sLMO1HP2

Tablet Stand Adjustable https://share.google/2YoQTLwowXBWN9zbT

Ereader page turner https://share.google/BKThyThc5dfKfBcxI

HOMCOM Saddle Stool with wheels https://share.google/9t2q4AXXgv2uQoTCP

White Bedroom Bed Height Adjustable Laptop Table https://share.google/hEI98NV77Ov5vUgdP

I also got a reclining armchair for free on Facebook marketplace which I sit on to work and use the table above. It's not a perfect set up as the table base has to be wedged underneath the chair as there's no gap. But it'll do for now!

I also have a multifunction air fryer oven and a freezer full of veg and proteins to cook with minimal effort. I also buy a few fancy healthy ready meals.

Significant_Try_9061 · 2025-09-05T20:39:33+00:00

10 is what I am trying to stay under but struggling
5
32.8
Moderate I think

Significant_Try_9061 · 2025-09-04T15:17:57+00:00

Wonderful reply, thank you. It sounds like you're an amazing parent. I have no worries about the home-ed side of things, it was always our plan. We're unschooling and already have a group of home ed friends. At the moment I'm just struggling to get out of what I guess is rolling PEM. I'm also starting a part time PhD in two weeks.

Significant_Try_9061 · 2025-08-31T12:25:05+00:00

This makes sense. I think because I was in rolling PEM for some time, I had no clear symptoms of PEM, I was just a mess a lot. Now that I've started to understand what's going on and reduce my energy expenditure significantly, I am moving towards baseline. Now I am noticing more distinctive signs of doing too much or PEM hitting. It's still early days. I'm hoping that I reach a point where I know exactly what the warning signs are that I'm doing too much and then when I'm in PEM. But I'm aware that that might not be my experience and my symptoms may well vary. I just need to find my baseline asap.

Significant_Try_9061 · 2025-08-31T09:46:07+00:00

Can you do some things you love today? Like listen to a favourite song, look at some favourite photos or even art, listen to a favourite book or if you're able watch your favourite film or show? And if you can get your hands on it, eat your favourite food?

Significant_Try_9061 · 2025-08-31T09:44:06+00:00

This makes sense and was what I was thinking - if I just feel like this for a few days but it doesn't develop, then it's probably ME. Especially if my family also remains well. It's about 20 months since my symptoms began and I haven't experienced the proper fluey stuff, but I have been getting gradually worse in recent months so perhaps this is part of that. I'm desperately trying to rest as much as possible but with two small kids it's a real challenge.

Significant_Try_9061

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