suffering with chronic pain — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

suffering with chronic pain

System Posts: 588

Scope community team

This discussion was created from comments split from: Welcome to our new group on dealing with chronic pain.


  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    If you tried to ring the Pain Clinic then I am not surprised you got no answer. I was forgotten by them for a year. During that time I rang twice every month and only got to speak to anyone twice. Neither contact had any effect. In the end I only got their attention by making a complaint. Suddenly they couldn't do enough to sort things out. I got an appointment, ineffective surgery and discharged in a month.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I guess areas are different. You can only see a consultant here if you visit the hospital. So, if you have a consultant then you would have to be registered with the hospital. Back then I complained through PALS but last time I tried to complain PALS told me they didn't handle complaints any more. You should complain to your MP and also try to find out who handles complaints in your area. There will be someone who does it. It seems to me that PALS are useless now. It was difficult enough before because they would back door complaints as a quiet word to the doctors first.

    That seems to be the done thing now anyway. GP's complaints are supposed to be handled by NHS England but 3 times I tried to make a complaint about a GP and 3 times they ignored me and had a quiet word with the doctor instead. They are all too busy protecting each other now.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
    RIDGEY Member Posts: 2 Listener
    i have had chronic pain since January, sciatica they say i kept going to my docs crying on the phone to then i just got more and more pill and nothing worked , i was referred to the pain clinic who said i should start reducing the pills as none were working. and after a week i had 2 steroid injections in the hip guided by ultra sound. then i had a whole 3 weeks with no pain wat so ever.
    it has gradually come back, from my knee up and in my hip at the present tiem it iis at its worse Iam waiting for anothe MRI  because the last was for my back . pain in the day is easier to cope with than at night , but now i cant cope day or night tonight is my third night with NO sleep  i cry most of the time i am not coping.
    my husband goes to work around 3 am i see no one all day. hes home about 3 hours before he need to get sleep. the nest day i repeat the same pattern  my probelms mainly are pain and lonleyness ( i have algerys to morphine codine tramadol)
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @RIDGEY I understand well how the nights can be bad. Having been up and about during the day I always suffer much more at night often only able to sleep after extensive resting. I also have nights when I simply cannot sleep until exhausted. Not seeing people also makes life more difficult and, as pain often limits our ability to go out, this can become a vicious circle.

    Just to correct something you wrote, Tramadol is based on Morphine Sulphate so, if you have problems with Morphine, you are almost certain to have problems with Tramadol. It is unusual to have issues with both Codeine and Morphine though. Unfortunately those two substances comprise the majority of higher level pain killers. Do talk to your doctor about trying other options though as sometimes different chemical formulas affect people differently and something called Buprenorphine is very stable and cause much less problems with those that struggle with most Morphine products.

    Sciatica is more nerve pain so maybe the mid-nerve pain killers might be useful and these are Amitryptylene, Nortryptylene, Pregabalin, Gebapentin and Duloxetine plus they all help with depression often caused by constant nagging pain.

    I would also suggest that you ask your GP to refer you to the Pain Clinic as they can teach you a number of ways to cope better. I wouldn't have lasted long myself without the things they taught me.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


Do you need advice on your energy costs?

Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.