To feel like I can't cope?

[Eeyore86]

I'll try and keep this brief.

I suffer from chronic pain due to an accident seven years ago and was diagnosed with EDS (connective tissue disorder which explained a few things) at the start of the year

At the moment pain is just becoming unmanageable, I was admitted to a&e via ambulance over a week ago as something happened to my knee, it has settled to a degree but not fully, I'm taking my regular meds (morphine tablets plus oral morphine if required) but I really feel at the moment i can't cope with it, it's effecting my life both working and social and I just feel like shit (I realise that even typing this it sounds very self pitying but I'm generally not)

I've been swimming tonight, I didn't do much and a good friend helped me in and out if the pool (very embarrassing to feel forced to rely on others at my age) but the pain has been horrid since, to the point I'm toying with the idea of going back to hospital, however it's Friday night and it won't do any good

Thank god I don't have children, as I really wouldn't be able to cope, and thankfully my godchildren live several hundred miles away and my nephew hasn't seen me horrifically bad.

I just feel dreadful right now and about out if ideas to help, if you've made it this far then thank you and apologises for the length

I'm really sorry to hear that you're in such pain at the moment.

I think that your idea of going back to the hospital sounds like a sensible one. Sure, it's Friday night, but if it's not going to get better of its own accord, you might as well be in pain in A&E waiting to be seen, than in pain at home gritting your teeth.

Wishing all the very best

You don't sound self pitying in the least.

Yes, go for it. GrendelsMinim is right. Have professionals around you.

Thank you for the replies, didn't make it to the hospital, no way I could've driven so just trying to ride it out, heat helps a bit so a hot bath in the middle of the night was a little helpful.

Hopefully it'll begin to settle I don't think there is much the hospital can really do, they gave me the oral morphine to try and stop hospital visits.

I just wish that this didn't have such an impact on my life and I was able to do "normal" things without this level of pain, fingers crossed for a couple of hours sleep and hopefully things will begin to look better

Have you got oral morphine on prescription? I have it for endometriosis, also fentanyl patches are really good. Sorry you're feeling so bad

I do have it on prescription Lauren, think it's been that way for around 3 years. My pain clinic wanted patches (can't remember exactly the type, think they were anaesthetic) prescribing for me but as I live in a different NHS trust to the hospital my GP can't prescribe due to cost issues and unable to buy them privately which is a bit rubbish

I'm so sorry to hear you have so much pain. I have EDS too and understand what it's like to live with as a condition.
Are you under consultant care? I have attended the rehab programme for EDS at Stanmore and whilst it wasn't a cure it has helped me in many ways.

If you want to PM feel free and I can let you know which consultants I see.

Hugs to you OP.

Also have you joined EDS UK? They have local support groups and are great source of knowledge.

Apologies if you've done these things already.

It can be a nightmare can't it thesecret? I've joined a Facebook group but it doesn't seem to have a support group in the North East? Will def look to see whether it is EDS UK.

No not under consultant care, diagnosed in Jan and then nothing, last October I saw a rheumatologist who referred me for the genetic testing, found a letter from him stating that if diagnosed I would be referred to one of the London centres however that never happened and he was a locum at the hospital so has now left and GP can't follow up on that letter so waiting for another referral to rheumatology to try and sort it out.

I'll def send you a pm, thank you so much

There's 2 patches I have had Butrans and then the fentanyl, I can't believe they won't prescribe, can you register at a GP where a family member or friend lives and try there?

That's a good idea Lauren but the majority of my family live under the same NHS trust, although it's definitely something to consider as a very good friend is looking at moving, thank you