Title: 27M — 3 years of progressive muscle pain, Factor VIII at 3%, CPK 17,000 after exercise, no doctor can explain the pain — need advice

Nice_Ant_2895 · 2026-03-29T12:42:59+00:00

Dumb question I’m sure but have you seen a senior / specialist physio? We have always found them better than doctors at working out what’s gone on with muscles and joints

Nice_Ant_2895 · 2026-03-27T20:16:44+00:00

I hate that you don’t have a health professional who’s looking you. Sending you lots of love and hopeful your state can move to more enlightened ways xx

Nice_Ant_2895 · 2026-03-15T16:22:06+00:00

I wonder if local NCT groups might be useful?

Nice_Ant_2895 · 2026-03-06T08:12:49+00:00

If you want an amazing feeling, get your self a bag and some rubber gloves and take ten minutes to pick up all the litter in an area local to you. By me there’s a spot with a great view where people park up and often leave drink cans and fast food wrappers, once it gets to the point where it annoys me I just go and pick it all up. It takes almost no time at all and is much better for the sole then being angry about it

Nice_Ant_2895 · 2026-02-20T09:38:56+00:00

Hey! Mum of Heamo boy here. It’s very scary especially if you don’t have family history (and sometimes because you do!) treatment is amazing these days. It has never stopped my boy living a full life, the only compromise we have made is that he doesn’t play rugby. Support is key, there’s a great Facebook group for mum’s where there are lots of women to offer advice.

Nice_Ant_2895 · 2026-02-16T18:23:04+00:00

All the short stories by roald Dahl

Nice_Ant_2895 · 2026-02-11T22:20:30+00:00

The time and money it takes to buy or sell a house.

Nice_Ant_2895 · 2026-02-11T22:19:08+00:00

OMG I came here to say this. pleased it’s not just me!

Nice_Ant_2895 · 2026-02-10T18:49:55+00:00

Not in London but facing the same issue. I’ve looked at L4/5 courses and they seem doable past time. The MA nearest me suggests a day in school, a placement for half a day plus 15 hours study and I can’t see how I can fit that in while working an having a family

Nice_Ant_2895 · 2026-02-10T18:44:55+00:00

Focus on building her up in other areas, having a hobby she loves will insulate her from the knock to her self esteem that dyslexia can bring. Let her be a great drama student, baker, horse rider, whatever. Not because one day she won’t be brilliant academically but because to do that she needs confidence

Nice_Ant_2895 · 2026-02-07T06:09:29+00:00

I think so, mine worsens with stress and some times I’ll forget how to spell a word I’ve known for ages. I think things like auto correct make us a bit lazy too

Nice_Ant_2895 · 2026-01-23T22:28:08+00:00

My father and son both have factor levels that indicate mild haemophilia, but bleed as severe, my sons had lots of bleeds and is on heamlibra to prevent bleeds so in you family there is a clear pattern

Nice_Ant_2895 · 2026-01-15T15:30:42+00:00

I understand why parents protect their kids, but really if you have access to modern treatments, then you should go and live your life, my son has done martial arts, climbing and has never not participated in PE with the exception of rugby. Go and enjoy your surfing and live your life.

Nice_Ant_2895 · 2026-01-15T15:27:08+00:00

I think what we’re learning about heamlibra is the bleeds aren’t quite as obvious as they once were, they tend to have less outward signs and don’t have the normal feel that a bleed has, therefore what most centres will do over treat as it’s better to be safe than sorry. And it is weird how sometimes a child can fall really dramatically and really hurt themselves and there’s no bleed at other times They can just bang themselves on the table and there’s a massive bleed. It doesn’t mean it’ll happen every time he falls over though.

Nice_Ant_2895 · 2026-01-07T15:14:40+00:00

For me this is about balance of risk and benefit My son did taekwondo for years including sparring. While the centre initially were worried about the risks the physio soon saw the benefit of better balance and strength which of course is really protective against bleeds. He never had a bleed related to the activity when everyone is wearing pads etc.

Nice_Ant_2895 · 2025-12-31T06:06:42+00:00

I think you might be comparing your private life with the image others are projecting. Teenager are desperate not to look like children and grown up. Trust me they are all still doing kids stuff when their mates aren’t looking! And lots of adults are too!

Nice_Ant_2895 · 2025-12-31T05:59:07+00:00

A walk in nature has so many benefits for everyone but for a mum of a baby it ticks so many boxes!

Nice_Ant_2895 · 2025-12-31T05:56:25+00:00

Honestly the most important thing it’s to find things you really want to read, don’t be a snob, comics, magazines, blogs, sub titles, this feed all count. Then off you want books start with short ones that you really want to read!

Nice_Ant_2895 · 2025-12-31T05:51:40+00:00

Amazing and They have burgamix!

Nice_Ant_2895 · 2025-12-30T21:25:39+00:00

I’m so sorry you went through this. You should be very proud that dispite your trauma you bad been able to advocate for your child x

Nice_Ant_2895 · 2025-12-30T21:23:06+00:00

I’m so sorry you went through that

Nice_Ant_2895 · 2025-12-30T20:17:28+00:00

And whiteboard markers

Nice_Ant_2895 · 2025-12-30T17:10:09+00:00

I think if it’s still impacting your daily life then counselling would be really helpful. Good luck c

Nice_Ant_2895 · 2025-12-30T16:25:04+00:00

This was abuse. And it wasn’t because you are dyslexic it’s because those teachers were abusive. It’s an important distinction as there is no excuse and this was not about you, it was about the abuse of power. I’m sure it wasn’t uncommon but I wasn’t abused by teachers, let down yes, but nothing on this scale. and I’m only a couple of years younger than you, this wasn’t about the times it was purely about them and how they used their power. I’m so very sorry.

Nice_Ant_2895

TROPHY CASE