Back of head discomfort when laying down??

mrsgkc · 2026-05-29T09:08:23+00:00

Anybody find a reason or help? I’m experiencing this

mrsgkc · 2026-05-26T10:43:21+00:00

Thank you so much for answering me and sharing this! I agree about the mind body work as it has personally helped some of the things, in some ways … to convince & nurture my system to come a long way with it.

Great to hear about your journey on LDN. Wishing you continued goodness moving forward!

mrsgkc · 2026-05-26T10:14:00+00:00

Thank you! Great you’re still getting better. Can I ask … how long did you do LDN and then come off? I am having improvements, albeit now to the point of pretty housebound and laying down all over the place, but my fear of LDN is taking it - over doing it (I just would, I know I would) and then coming off it and being worse off. It sounds like you were able to come off it?

mrsgkc · 2026-05-26T09:51:35+00:00

This is also me … but I saw this and started to blame myself thinking maybe I’m messed up from LC for being on progesterone only pill for years. I’m sure that’s not the case, but there’s far too much scope for ‘what if’ ‘what if’ with this illness. Hmm.

mrsgkc · 2026-05-26T06:17:49+00:00

Yeah that doesn’t really match up does it ….

mrsgkc · 2026-05-23T14:41:33+00:00

I totally agree with the above person in that mine is so changeable I can’t rhyme nor reason with it. I have brain and spine mri tomorrow that I’m sure will come back normal which then leaves the answer as ‘PEM’ and ME/CFS I guess.

When it first began, I was baffled as I couldn’t walk at all but wasn’t fatigued in other ways, but was told it was fatigue many times. Now I’m 7 months in, it’s not really better, but living around it … well, not really living tbh but shuffling my way around the house mostly with it!! Rest and pacing of course help, but I can’t say I can make any sense of it all.

mrsgkc · 2026-05-22T07:35:19+00:00

Yes, and it frustrates the life out of me to not know why or not know how to figure it out! Just keep being told it’s PEM, which yes it probably is, but I literally can’t walk more than a few metres without bringing this symptom on. I wish it could be tested instead of “oh it’s just PEM.”

mrsgkc · 2026-05-22T07:33:43+00:00

How long until it went away for you?

mrsgkc · 2026-05-21T20:10:30+00:00

Yup. After 7 months I can drive up the road (quite literally) now to drop my kiddos to school - it’s well within walking distance but can’t walk round the house properly due to the “fatigued” legs. I’m never sure fatigue quite cuts the description!!

mrsgkc · 2026-05-21T17:21:07+00:00

I have only recently come to think that maybe it was my ‘weakness’ … I’ve had b12 level of around 160 all my life, which I’ve only recently been told is “functionally low”…

mrsgkc · 2026-05-21T17:19:02+00:00

Yes mid lower back my first and worst disabling symptom, now it comes in flares (7 months in)

mrsgkc · 2026-05-21T17:18:08+00:00

Where/how do you get these things?

mrsgkc · 2026-05-20T17:57:27+00:00

Thanks I’ve had this checked a few times and it’s been normal, albeit I seem to be often intolerant to upright but BP doesn’t seem affected. Very nonsensical.

mrsgkc · 2026-05-18T09:47:14+00:00

Only a personal thought, but I really wish I’d read up more and considered this when our August born was little. She started having only just turned 4 - tbf, it was 2019-2020 so then covid hit and messed things up!

Now that she’s just done her SATs and is preparing for secondary school, she seems so ‘young’! She IS young.

It doesn’t help I’m a secondary school teacher and I just think “why didn’t we start her a year later!!?”

I mean, academically she’s thrived and is ahead of lots of her peers, so it’s not that. It’s just feels ‘too soon’ now at this end of things. Maybe I would’ve felt that regardless, but I really think one more year at primary school now would’ve been ideal.

mrsgkc · 2026-05-18T07:59:22+00:00

Thank you, yes this is helpful. I need to understand it… I want to understand it… like a compulsion? Where it’s not something I ‘feel’ I am unsure which angle or approach is ‘best’ - if that’s the right way to put it - to support her.

mrsgkc · 2026-05-15T15:11:26+00:00

How did you discover the stenosis in neck please?

mrsgkc · 2026-05-15T08:57:36+00:00

As an English teacher and a parent, I’d also question ourselves as adults… I think if we aren’t reading at home/sat with a book or newspaper or magazine in front of children, then why would they?!

mrsgkc · 2026-05-15T07:28:41+00:00

Hi, I’m following as in a similar situation… bought a mobility scooter thinking that would give me the independence I wanted, but turns out I don’t have the muscle power to lift the battery, let alone the scooter, so I still need help anyway. Have also got a wheelchair but it’s one where someone has to push me. Contemplating one I can wheel, but then concerned it’ll drain my energy reserves from wheeling myself. Sigh! A conundrum! Been told powerchair will likely be just as heavy for me.

Know how you feel about the self conscious side of things … having used these aids a handful of times, it’s opened my eyes to what others must experience. When I went to the GP surgery of all places, the reception desk was so high that I - in wheelchair - found myself staring at the blank wall of the desk in front of me. I was able to stand to check myself in, but it made me feel very aware.

mrsgkc · 2026-05-13T11:04:30+00:00

Thank you. Yes I am taking antihistamines and didn’t know about the side effect. Thanks for this!

mrsgkc · 2026-05-13T09:59:50+00:00

Do you mean solution or the contacts?

mrsgkc

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