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Thread: the beauty of being pain free (almost!)

  1. #1
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    Red face the beauty of being pain free (almost!)

    Hey,

    My story is physically I have a very bad lower back. It hurts right in the middle on the very last "bone" or the end of the spine I think. The pain doesn't move, doesnt radiate or shoot or anything, its chronic on that bone. Nothing I do makes it better or worse, aside from standing which makes it worse while I stand.

    Im 29 and for YEARS going to the doctor they tinkered around with things like codeine, tramadol, paracetimol, gabapentin, orphenadrine, diclofenac, nefopam, the list is very long it continues.... But NOTHING ever got rid of it, the pain was maybe 8-9 of 10 quite often, 10 being burnt on the skin equivalant. So it was very bad.
    My sleep was very sporadic and perhaps these medicines got the pain down to a 6 or 7.

    That might sound good, but out of 10, and 24/7, its awful.

    Anyway I asked out right if I could try for arguements sake morphine and guess what? No doctor would give it, ever. The surgery had lots of locums so it was rare i saw the same doctor twice, and I gave up hope that any would ever give me something strong.

    It was all a case of "you're too young" "abuse potentiol" "addictive" "dont want to cause more problems than you already have" etcetc

    I was really annoyed. I thought they get paid just as much if they give me something that eases the pain bearable than if they dont. So they dont... its easier for them.

    But one day this lovely doctor right out tried a fentanyl patch. Its a very strong pain killer, but you dont have to take tablets, you stick it on. Well... Not much happened at first but once the dose was increased to 50micrograms My pain was down to a 3-4 which was pretty much amazing as it had not been like this for many years.

    Now perhaps I was being greedy, but I thought, wouldn't it be nice to have pain down to a 1-3 most of the time, so we went to increase to 62.5 but the small patch kept coming off. So we converted the small patch into morphine (which also I had never had) and now I take 90mg of morphine together with a 50 patch

    All I can say is the pain is so much better. I can lay down without it hurting and sit, walk, do exercise etcetc, and its really great.

    I never go a day without being so greatful these medicines exist and that there is a kind doctor inbetween the ones who dont care. Anyway I had to see a different doctor another time and was very worried they would stop my medicines because of the previous "your too young" type examples I gave above, but all they did was ask why I took them, and then printed me some extra off for the christmas break so I didn't run out!

    I cant believe it really. Im not sure I was asking in the wrong way for help, I mean, there is only so many ways you can say something really hurts and you need something a bit stronger than what is being given. I do feel quite annoyed that several years of severe pain went by with probably 20 doctor visits and not very much done, but that is overidden by the extreme joy I have now of being virtually pain free.

    So thats my story. Has anyone else had similar experiences with getting strong pain killers when all other routes have been tried without much success? I am very interested in this because I read an article a few months ago about strong opiates being under prescribed in the uk with many doctors "fearing" addiction etc.

    My personal view is that becoming tolerant and dependant on tablets should really be secondary to reducing pain to bearable levels. I mean, in my view, its no worse than eating lol. You gotta eat and your dependant on food or you get some nasty side effects, same with the pain medicine (alright, it doesn't quite translate - but i think you understand where i am coming from).

  2. #2
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    Hopefully I'll have a chance to tell you my story in more detail when I finish work for the week (god I live Friday!), but I can empathise with everything you have said.

    I've tried Fentanyl (several years ago) and although it took some of the pain away, the patches caused major pain/rash wherever they were placed. They also meant I couldn't work/drive which isn't an option in my eyes.

    What I really need is a painkiller or combination of that will reduce my pain down to manageable levels but I can drive and work whilst taking them.
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  3. #3
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    I've been refused meds and treatment on the grounds of costs.

  4. #4
    Senior Member mikeydt1's Avatar
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    that doesn't sound too good wobble.

    before my stoma i was paying using the 6 monthly scheme and if i had been denied meds like this i would of seriously wanted to know why.

    it is like antibiotics they have been told to cut down and having a stoma comes with many risks and even for me it is getting harder to get infections treated. they would rather let things run their course or get seriously worse before dishing anything out, usual case it does get worse and then the complications set in.

  5. #5
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    that is disgusting wobble1. Are you in the UK or USA or somewhere else? I have read from an old forum I used to be at before it shut that many Americans were denied help because of cost and it really annoyed me because those who need the help the most are often those who can't work (not always, but often) and they can least afford the help. I happen to have the BNF (as an app) which is a book doctors/nurses use in the UK which describes costs. I have been denied an MRI for my back based on cost, but they seem happy to prescribe endless years worth of pills instead which must work out more expensive. Anyway, here is a breakdown of the common medicines:

    60x 30mg morphine tablets cost 9.61 (so thats 3 weeks worth for me)
    5x 50microgram patch cost 36.59( (so thats 15 days)

    Total cost: morphine 46pence per day
    patches 2.44 per day

    If three quid is what stands in the way between your doctors giving you some pain relief then I am very cross

  6. #6
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    Born and bred UK. Many GP surgeries are responsible for their own budget and as such these situations arise, I thought it was common practice. It also applies to NHS trusts.

  7. #7
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    My doc first prescribed me Fentanyl patches 2yrs ago, but 6mths ago i was asked to try the cheaper version called Matrifen. Strangely they seemed to work better. My problem is that i am up to 50mcg per hour but they are not working very well any more, but i am worried about taking higher and higher doses. Don't know what else they can offer as i am already topping up with paracetamol too.

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    I would ask about possibly going 62.5 or even 75mcg/hr because I have heard of people taking 300mcg/h so there is defintely room for manouvre. I understand the nervousness of it though because so much dependant on these little stickers.

    Are you able to ask for something for breakthrough pain instead of going for permanent patch increase? You may find the doctor is willing to give you the 50 patch still and a bit of morphine or similar. I find the morphine can make me quite dizzy sometimes which isn't always ideal, but its better than being in pain anyday.

    I am glad I have met some people here already in my short time here

  9. #9
    Senior Member galeforce81's Avatar
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    I was on Pregabilin for a few years and then when i found out how much it cost (at least 60 per week maybe more) i felt a bit guilty so asked if there was anything cheaper. I'm now on Gabapentin and along with all the other meds i take, i haven't noticed any difference. My pain has stayed around a 5, which i can cope with. Only now because of my condition i've found that im getting secondary pains in other areas like my back and my joints (from being on crutches and other reasons). I see my doctor regularly but it seems like there's something new every time and the doctors rarely do anything to help so im worried they're thinking im a hypocondriac. Doesn't help that there is at least 7 different doctors at my practice.

  10. #10
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    Quote Originally Posted by SpeedBird View Post
    I would ask about possibly going 62.5 or even 75mcg/hr because I have heard of people taking 300mcg/h so there is defintely room for manouvre. I understand the nervousness of it though because so much dependant on these little stickers.

    Are you able to ask for something for breakthrough pain instead of going for permanent patch increase? You may find the doctor is willing to give you the 50 patch still and a bit of morphine or similar. I find the morphine can make me quite dizzy sometimes which isn't always ideal, but its better than being in pain anyday.

    I am glad I have met some people here already in my short time here
    Hi Speedbird
    Will soldier on a little while longer and do as you say and just go up a small dose. i already take paracetomol for break through pain. Not sure what else i could try for that.
    Thanks for your help Speedbird x

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