Living with pain

[matthew55]

Until you feel pain for every waking hour you cannot understand me. My neck pain has spread to my upper back and shoulders. I can't move my arms in certain ways and I can't turn my head. Oh and now I get hot, sharp flashes of pain. I have tried neck brace, hot and cold treatments and various drugs to no avail. I'm praying that the patches I have coming later today help. If I can't find solace I will take my pills. That's not a threat it's a promise. 😢x

[TinyDancer]

Sorry if this is a daft response but can't you have liquid morphine? Do you have district nurses coming in or anything? My mum won't accept any contact from medics but the GP wants to set up district nurses through GoldLine (not sure if you have that where you are) They talk about liquid drugs like loranzepam and morphine for pain and breathlessness. I'm sorry you're going through this and I feel you shouldn't have to be in this pain and I really hope you can have something stronger x

[matthew55]

My district nurses are as much good as chocolate teapot and my doctors practice don't seem to understand MND, well my personal one is trying but he's hardly ever there. It never rains because it pours.😁x

[TinyDancer]

I'm glad your GP is trying but sounds like he needs to go further. Is there an MND nurse he can link up with? It just seems to me your GP needs to be getting specialist advise from the MND team about how to make you comfortable. This is very tough I know and probably hard to be assertive when you're in so much pain. I appreciate you can't pick up the phone too and have to email etc but please don't give up. Fight for stronger pain relief x

[DJW]

TinyDancer morphine = concrete stools, for us suffers pooping is already an ordeal.

matthew55 read this book. IMG_20210221_095939872.jpg

[matthew55]

No thanks

[matthew55]

Actually I can juggle with constipation producing drugs with a brilliant constipation relief drugs. 😁x

[DJW]

Sex drugs and rock n roll,
Pain, shame and to be named,
Motor neuron disease,
Is to no one to be pleased,
So read it to impede it,
Or pop it to stop it,
With pain comes no gain.
For you a poem,
To know you are not alone.

[Ellie]

Mate, do you know who understands pain? Hospices. Now, don't dismiss the idea immediately as it not being for you - if your pain is that bad, it must be worth changing the goalposts for.

I checked your local hospice and they need a referral from any of your Consultants, senior Doctors, GP or district nurse (I know you said she's useless, but she might be happy to move you on)

Think about it x

[matthew55]

I get the local Hospice magazine and I would be happy to get referred to it but you are the first person to mention it to me. Thanks a million 😟😍👏👍x

[Mary C]

Hi Matthew,is it worth ringing the local hospice and ask if you can self refer.?The hospice/palliative care team really understand pain control as well as about your quality of life that you express and not that anyone assumes.My local hospice/palliative team have been great from day one of diagnosis.The lead nurse spent a great deal of time going through my wishes and discussing my concerns re Pain control .She took the lead from me about what I needed to know at that time.Therafter a member of the team rings me every few weeks to check how I feel and importantly how my husband is coping.During lockdown this support continues and the hospice OT has been to visit when needed.You are going through so much.The hospice advised me to always contact them first as they know my wish is to keep out of hospital and remain at home.Also they are experienced in supporting us people who live with a life limiting illness.Best wishes.Mary

[matthew55]

Didn't I say that my Doctor is a superstar? He's agreed to let me try liquid morphine! 😁👍x

[slp]

Matthew I take Oramorph every day before bed. It relaxes my legs and I sleep well with it. I know that it contributes towards the old constipation but I don't notice any difference to be honest. Go for it x Stay safe x Sarah xx

[Ellie]

Liquid morphine is quite short acting - are those patches you're waiting for morphine too? Hope they are, given that you probably can't take continuous release tabs?

[matthew55]

I can't swallow pills and my patches have Methyl Salicylate and Levomenthol.😁x