Opioid medications becoming limited in the UK? - Page 2 — Scope | Disability forum
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Opioid medications becoming limited in the UK?

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  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I tried amitriptylene initially but wasn’t tripping out of my tree and still in agony and I went to my g p crying from the pain and side effects that’s when they gave me Gabapentin for chronic pain. 
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    Oh no @debbiedo49 that’s no good. The Amatryptaline only help me sleep, not every night but I went days and days without sleeping. The Pregabalin i’m Trailing now to see if that helps with the pain. I’ve just looked at the savella online and i’ll Speak to my Dr about it. But i’m Betting you can’t take the two at once.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Ok I am going to look it up. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I wonder why my g p hasn’t suggested it?
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    Thanks @debbiedo49. I’ll speak to my Dr, he may want me to see how go with this because the hospital said is usually around 300mg twice a day is what you need before you experience any relief from Symptoms.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    It did take me s while to get used to Gabapentin then I was diagnosed wit him fibro and the pain was bad so I went up a dose. I get about 4-6 hours sleep on this dose at a time and I drop off in the afternoon wit him fatigue after work.  I can’t manage without a nap as I get more exhsusted which just get some worse. I’m not keen on sleeping tablets as I get a hangover feeling 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Thanks @debbiedo49. I’ll speak to my Dr, he may want me to see how go with this because the hospital said is usually around 300mg twice a day is what you need before you experience any relief from Symptoms.
    Feel free to message me and let me knod how you get on
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    @debbiedo49 I can’t nap to save my life, if I nap in the day I can’t sleep at all. I can no only sleep with Amatryptaline soon as I lay in one position for to long it’s like lying on hot coals. So I get stressed out moving then i’m So stressed I can’t sleep. I can sleep for 3 hours most nights and wake up, then eventually i’ll have a night when i’ll be asleep for 14 hours. But when I do I wake up in agony because I don’t move when I sleep it’s a bit of a no win situation. The shower gives me the most fatigue, and the stairs walking up them by the time i’m half way i feel like I’ve run a marathon. Do you suffer with alladonia, or restless leg syndrome?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Yes I get restless legs. I have a body pillow which helps me feel supported during sleep. 
  • DavidJohn1984
    DavidJohn1984 Community member Posts: 99 Courageous
    Not heard of a body pillow, will have to have a look at them. I did started sleeping with a pillow under my legs to help relieve lower back pain but it didn’t work.
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    Or a V-shaped pillow. Works for me. Hug it like a body pillow, and also fits between knees, so hips are straight when lying on side.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    A body pillow is just a long pillow. I got it in lidl lol you can bend it. My neck is really bad so I have lots of pillows to sleep properly
  • [Deleted User]
    [Deleted User] Posts: 58 Connected
    The user and all related content has been deleted.
  • XenasMum
    XenasMum Community member Posts: 27 Connected
    Hi I've just looked up Savello and it mentions seizures. I'm epileptic but 11yrs free, has anyone tried this that is epileptic? As I really like the sound of it and up to yet I only take Baclofen and amitriptyline but the amitryptaline is for other things too. Gabapentine did nothing and I can't take ibuprofen 
    Btw I have cbd oil in a vape but it doesn't really do anything but I do know someone else who takes it and it's been a lifesaver for her. You can get gummy bears with cbd oil @debbiedo49
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    @XenasMum Hi there,

    Never heard of Savella, sorry. Have you tried Pregabalin? It's related to Gabapentin, but sometimes it works when Gabapentin doesn't.

    I'm curious - I get horrendous back spasms - they're the most painful and limiting part of my chronic pain syndrome. I've never been prescribed any muscle relaxants/antispasmodics like Baclofen (aside from the occasional benzo for emergencies). Does it help?

    Apparently CBD oil varies depending on a bunch of things, the most important being whether it's made from hemp or actual MJ. There are a bunch of sites that discuss this if you search for them. I use Vine CBD E-liquid, and it seems to lessen the frequency of my spasms somewhat, although it doesn't help with the pain.
  • XenasMum
    XenasMum Community member Posts: 27 Connected
    @Waylay Pregabolin did nothing for me and @debbiedo49 had mentioned Savella so I thought I'd ask my GP about it. I'm going to Charing Cross to find out if the problems with my legs are a side effect of an accident I had years ago as I fractured 4 vertebrae in my spine and I think I might have bone spurs pressing on my spinal column is narrowing. As I have spinal stenosis now.
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I've never tried savella and forgot all about it till now lol #fibrofog
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    EmmaB said:
    Gabapentin isn't an opioid but it is a problem drug along with pregabalin - the prescribing of both drugs has gone through the roof in recent years and both are problematic and have 'street value' such are their effects.  

    Nothing is going to change with this in a hurry but the bottom line is that many of the drugs being looked into are ineffective or damaging when used long-term.  

    Psychologically it can feel like they may be helping [at least initially] but then ineffectiveness and addiction kicks in, also the effects of coming off medication can be misinterpreted as 'relapse' when in fact it is just the effects of coming off the medication.  

    The bottom line is that there may be better alternatives including non medication routes.

    This investigation is a good thing as it should mean people will get more effective treatment rather than just being dumped on drugs that don't work...

    @DavidJohn1984 your anti seizure medication should be fine because the thing is that they know how such medications work i.e. they have a clear effect, same as meds for diabetes, heart conditions etc.  

    The problem is that they really don't have a clue how medicines used to 'treat' mental distress and pain work, they've been winging it and its not working so something has to change!  


    Where do you get your information from please? 
  • Waylay
    Waylay Community member, Scope Member Posts: 973 Pioneering
    That sounds very unpleasant, @XenasMum! Good luck!

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