Pain clinic appointment tomorrow: please help!

wynn_
wynn_ Online Community Member Posts: 6 Listener
in Neurological impairments and pain
Hi everyone!

I'm new to this forum but not new to pain, which I've had for the last 7 years or so :(. It's pretty much everywhere - hips, fingers, etc - but bothers my most in my back and shoulders/neck. I tried pregabalin last year and found that it made me extremely tired and barely helped the pain, so I came off it. Instead, I want to try an anti-depressant this time, possibly amitriptyline or duloxetine in the hope that it won't make me so sleepy.

However, I've faced a lot of backlash when I suggested this to doctors. I'm only 20 so am faced with the "you're too young for painkillers", etc often. I have an NHS pain clinic appointment to discuss my future options- according to the doctor who referred me to it, it's basically a barrier before I can get pain killers. I was wondering if anyone has advice as to how I can be pushy/insistent when I describe what I know I need, without being rude? I've been to this pain clinic before and have found it very patronising and not helpful- I know how to manage my own pain, just need painkillers to facilitate that.

Also, although I know everyone's different, I'd be interested to hear if anyone here has had success with anti-depressants for pain!

Also, I reckon they'll try to offer me psychological support instead of physical. I don't want this at all. I'm probably depressed from living much of my life in pain, so would rather find a way to decrease the pain. I know through experience that even a whisper of mental health can quickly prompt them to label all symptoms as psychological, so I'm not taking that risk. However, I obviously can't tell the doctors that I'm suspicious of them in that regard! I was wondering if anyone knows how I can justify my lack of interest in psychological therapy? I am struggling mentally and denying it might make it seem like my pain isn't that bad when it is, so I'm not sure what to do.

Thanks so much for reading this :)

Comments

  • Jean Eveleigh
    Jean Eveleigh Scope Member Posts: 186 Empowering
    I would make a list of all the pain relief interventions you have tried before (medication, splinting, psychiatric, physical therapy) and which have or haven't helped and by what % they helped.

    I would look into a specialist pain management program which will combine CBT, PT and OT to build a coping program bespoke to you and your needs.
  • wynn_
    wynn_ Online Community Member Posts: 6 Listener
    Biblioklept said:
    I think you need to stay as calm as possible but firm and insistent, don't let them fob you off or pass you on. You know your body better than anyone else and they can't possibly know what you're feeling or experiencing. <3
    Aye, it's going to be so hard to be firm since they're the ones with power over my body in this situation, but I'll do my best :)
  • wynn_
    wynn_ Online Community Member Posts: 6 Listener
    Jean Eveleigh said:
    I would make a list of all the pain relief interventions you have tried before (medication, splinting, psychiatric, physical therapy) and which have or haven't helped and by what % they helped.

    I would look into a specialist pain management program which will combine CBT, PT and OT to build a coping program bespoke to you and your needs.
    That's a good idea, I probably have an old list of treatments that I can update - I doubt they'll want to see it but it'll be good to make sure I don't forget things :)

    I've had PT before and I doubt it can do too much more for me tbh, and I'll definitely refuse CBT. However, I don't believe I've have a professional OT, so that could be useful! Weirdly, I'm not based in the city the appointment is in, so perhaps I could ask for online help, if they won't simply give me meds alone.

    Thanks for your reply!
  • Sandy_123
    Sandy_123 Scope Member Posts: 63,057 Championing
    edited June 2022
    Hi @wynn_ and welcome. Have you had a diagnosis or got to the bottom of why your in pain?
  • wynn_
    wynn_ Online Community Member Posts: 6 Listener
    Sandy_123 said:
    Hi @wynn_ and welcome. Have you had a diagnosis or got to the bottom of why your in pain?
    Hi, thanks! It's been suggested that it might be musculoskeletal in nature, or perhaps that my nervous system isn't working well. To me it feels both like nerve + muscle pain. I know fibromyalgia is a controversial condition- it's been suggested it could be that, but I generally just call it chronic pain, so I suppose there's no official diagnosis, no. 

    I'm currently getting examined for pcos but that's separate and as of yet, inconclusive.
  • Tailwagger
    Tailwagger Online Community Member Posts: 1 Listener
    I use Amitriptyline for pain & it's very effective. It's used in small doses to control nerve pain/shooting pain for me. I take 2 small pills at bed time when pain is bad. The drug is an old fashioned antidepressant & pain relief was discovered as a side effect. I copied & pasted this from the Internet & hope it helps:

    Why have I been prescribed amitriptyline?
    • Amitriptyline is used to treat many types of persistent pain.
    • It is especially good for nerve pain, such as burning, shooting or 
    stabbing pain, and for pain that keeps you awake at night.
    • Amitriptyline belongs to the group of medicines called tricyclic 
    antidepressants that are also used to treat depression.
    • The dose of amitriptyline needed for pain relief is usually lower than 
    that prescribed for depression.
    • You may notice that information from the manufacturer does not 
    mention pain. However, amitriptyline has been used to treat pain for 
    many years. For more information please read ‘Use of medicines outside of their UK marketing authorisation in pain management and palliative medicine – information for patients’ by the British Pain Society.

    How does amitriptyline work?
    • Amitriptyline works by increasing the amount of specific nerve 
    transmitters in the nervous system, reducing pain messages arriving 
    in the brain.



  • wynn_
    wynn_ Online Community Member Posts: 6 Listener
    Tailwagger said:
    I use Amitriptyline for pain & it's very effective. It's used in small doses to control nerve pain/shooting pain for me. I take 2 small pills at bed time when pain is bad. 
    Oh awesome, I didn't know pain relief was discovered as a side effect, that's really interesting! I'm hoping that being on a lower dose would therefore mean less severe side effects - I suppose I can worry about that once I actually get on it! I'm really glad that it helps you- those shooting pains are horrific, so I sympathise. If you don't mind me asking, do you get any muscle or joint pain? I think I'd prioritise sorting them out before my shooting pains as those as more constant, so I wonder if amitriptyline would work for those types of pain too (although ofc it impacts us all differently).
  • poppy123456
    poppy123456 Online Community Member Posts: 64,463 Championing
    One of my conditions is fibromyalgia. Amongst other pain relief ( which I won’t go into details here) I also take Amitriptyline 2 tablets every night about 1 hour before bed. The reason i started taking it was because pain was so bad at night, it kept me awake. I could fall sleep but not stay asleep for longer than 2 hours. 
    It works so well for me to the point where I sleep about 7 hours a night without waking probably about 5 nights a week. For me that’s a miracle. 
    With chronic pain there will probably be no medication that will take your pain away completely. It doesn’t for me. Over a period of about 12 years I’ve tried so many different medications it’s ridiculous. What will work for others, may not work for you. 
    I’d also advise you to try other methods too as part of a trial and error exercise. For me, heat works very well. If I’m cold my pain is worse. If I over step the line my pain is worse so I know when to stop. 
    Please also remember that my advice isn’t medical advice because we aren’t able to give that here, we’re not medical professionals. 
    Having been to the pain clinic several times in the past I didn’t find them in them slightest bit helpful. I hope they are more helpful for you. 
  • Sandy_123
    Sandy_123 Scope Member Posts: 63,057 Championing
    I take amitriptyline for pain also at night time as poppy as said what suits one person won't another, its trial and error what's best for you.
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Hi @wynn_firstly i am sorry your in so much pain at such a young age and i think this may be the problem, some of the drugs your talking about are drugs i was given in latter years. You don't seem to have a proper diagnosis yet, i think your problems start there, hope that makes sense. Half the battle is knowing whats wrong, with this in mind i think you should be pushing to what is actually going wrong with your body, ie have you had scans etc.
    I was diagnosed at a young age with my problems, if i had been given the type of drugs i am on now back then, then by the age i am at now there would be nothing else they could give me to help.
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Morning @wynn_ how did you get on with the clinic ?
  • wynn_
    wynn_ Online Community Member Posts: 6 Listener
    SueHeath said:
    Morning @wynn_ how did you get on with the clinic ?
    Hi, apologies it's been months but I basically went in there and told them I wanted to try different painkillers. They half-heartedly offered me counselling, which I declined. I asked what else they could offer me, to which the answer was nothing! They were at least helpful with medication -we talked through some options and they sent the prescription to my GP. I'm now on amitriptyline and duloxetine!
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Please don't apologise @wynn_. The most important thing is that you have been taking care of yourself and feel able to reach out to us if you wish.

    It sounds like you had a really difficult experience with the clinic. How are you finding being on amitriptyline and duloxetine? 

    We are here for you if you would like to talk this through further or need any support  :)

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