I am new to this pain site

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This topic contains 15 replies, has 6 voices, and was last updated by  Eileen Asbury 7 months, 1 week ago.

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  • #43506

    angybaby
    Participant

    I am new to this pain site & was wondering if anyone has been diagnosed with “peripheral & central sensitization pain” as quoted by the aneasthetist I saw in so called pain clinic on Tuesday.He said he can do nothing, no jabs no nothing apart from morphine patches which he gave me along with sickness pills.I don’t want to go along the morphine route, I need my brain & faculties & the thought of morphine patches for the rest of my life is horrendous.It started about 3 years ago I had “bad back” & painful hip so was sent for xray & was told my spine is cracking up so had 2 lots spine injections which didn’t help so they said have hip replacement which I did exactly 2 years ago & it was downhill after that.Another lot spine jabs & 2 lots hip jabs, they said I got bursitis, & then they all gave up on me & said pain clinic will help..Waited 6 months for app.which was Tuesday & that as they say is that.Have pain in hips & both legs & cannot walk for longer than about a minute whithout excrutiating hip & back pain, luckily I am retired so don’t have to work for a living.Any comments will be gratefully received.

    #43507

    Rose
    Participant

    Hello Angybaby and welcome to this wonderful friendly forum. Lots of info on the main pain site for coping with pain. I don’t have the pain you mention but I do have neuropathy pain and I’m always looking for something to suit , help towards lessening the pain without bad side effects. I find the search box on here very useful for finding out about side effects some people have with different drugs. I recently tried Fentanyl patches but had to stop fairly quickly with those due to other health issues I have. I’m sure someone will be along soon or on Monday to offer help. And just as a spur of the moment thought. Possibly think about a mobility scooter. Talk again soon

    #43508

    angybaby
    Participant

    Hi, thankyou for your reply, very pleased to know there is someone out there who understands..I take trammys 6 a day..gabbas 600 a day..mazzys 4ml at night..citalopram for the inevitable depression & zoppies 7.5 to sleep. Have tried mst tabs which I think is morphine but did not like side effects, the same with amyltripteline..The doc said no phisio or massage as this will probably make it worse..Does anyone think that what I have may be fibromyalgia? All I want is to be able to walk without the pain, I don’t feel ready for the scooter but I suppose this is inevitable with the summer hopefully coming soon.I really am not sure about using the morphine patches it seems so final.No one is interested in my leg & feet pain which at times is worse than the back/hips.Perhaps will go to gp when the pain doc has sent him a letter with diagnosis..I am new to all this pain & quite surprised at all the people with long term pain that I have seen here, I thought stupidly I was the only one lol

    #43510

    Eileen Asbury
    Participant

    Hi Angybaby

    You are far from being the only one. I’m a volunteer for Arthrits Care and when I talk to people so many of them say that they didn’t realise there were so many people with chronic pain.
    I’ve had two hip replacements, 1 knee replacement, the other knee has arthrtitis in it. My 2nd hip replacement went wrong and I’m now on crutches permanently.
    As for a scooter its the best thing you could do. Gets you to places you normally couldn’t go to and do things you normally couldn’t do.
    When I was being trained as a volunteer my trainer said,{to all of us} how would you open a tin of beans? We looked at her in amazement. With a tin opener. Oh so you would use something to help you do it? Crutches, scooter or similar is just the same she said. You couldn’t get into a tin of beans without a tin opener it helps you, so its the same with a scooter, helps you to do things.
    Anyway its fantastic to be able to use when I need to. I don’t always need it
    Good luck with everything
    Eileen

    #43512

    mrsH
    Participant

    Welcome Angybaby to our brave army of pain patients.

    I also have problems with standing, walking and sitting aggravating pain and making many activities impossible. I have ME too, as well as fibro-like pain ( but not fibro)

    I totally agree with Eileen about a scooter- brilliant for helping you get around. I would also ask your GP to refer you to OT service locally. They can assess you at home and lend you aids to help with things like showering, cooking, getting out of bed etc. Ours also has physios who can visit too. We only found out about this brilliant service 6 months ago, and frankly it has helped my quality of life more than any meds/treatments. I am just getting over a bad ME flare-up and they quickly got a walker and kitchen trolley delivered next day!

    Best wishes
    Helen x

    #43513

    Di
    Participant

    First of all please do not panic about morphine. Once your body gets used to it you’ll be fine and the side effects will wear off. It’s now 15 years since I was put on morphine. I happened to be allergic to it so was given oxycodone which is stronger so has a smaller dose. NO side effects apart from the usual opiate constipation! ( OH we discuss all sorts on here LOL). I can drive safely- I got myself assessed a couple of years ago to make sure my reactions were still good. If I had a headache I’d take paracetamol so why not take an opiate when nothing else will work?
    The hardest thing I ever did some 10 years ago was ask for a wheelchair. I could still walk but not far so I thought I could push a chair as far as I could manage then sit in it when I’d had enough. Then my shoulder gave out so the only way I could manage was to have someone push me. I hated that, detested being dependant on someone so I got a little scooter I can fold and put in the car myself. Best thing I ever did. I can now go where I Like and do what I want without having to ask for help. I’m now on my second one. IT is difficult admitting that you can no longer manage like you used to but honestly whoever invented the little scooters shoudl have a knighthood- they are areal blessing. I like the can opener analogy. I don’t hesitate to use things like that so why not a scooter?

    #43515

    lc
    Participant

    Hi Angybaby, welcome, I had fractured /dislocated pelvis and 2 spinal ops which left me with chronic pain/nerve damage/pain and now with arthritis as well. so can relate to you in some ways, after years of drugs and trying differant ones, I have found that for me its amitriptyline , naproxen and co- codamol, with a Tens machine and heat pads, also relaxation/visualisation and CBT/mindfulness and a few other techniques like pacing and others i have picked up through pain management/ clinic. tried all them jabs but for me never really worked.and meds some I cannot take or have adverse reactions to, but what works for me, might not work for you, as we are all different. its a case of trying all different methods and combinations of them to find out what works best for you. like me i need to know what day it is and what year we are in. so take the minimum of drugs which takes the edge off my nerve pain and other pains but keeps me awake enough to function normally. at best i walk with a stick or longer journey use crutches and worst cannot get out of bed. but i have hobbies like drawing, wood carving and leather work which keeps my mind occupied and focused on something rather than my pain do this as and when i am able. it keeps me sane and a sense of achievement when finished a piece of work. Hope my story helps you in some way.hope you find methods to help you control and manage / deal with your pain better soon. Take Care and Best Wishes . Lee

    #43516

    angybaby
    Participant

    Hya, thankyou to everyone for your kind messages & advice..I am now looking at motor scooters..They have a new one which collapses completely without taking apart which I may go for, easier for hubby to manage..I have a lovely wheelchair I use but it has its limitations, but just right for when daughter takes me out for retail therapy..Still not sure about the patches though, it may sound silly but I am scared to use them cause of side effects, I know you get used to them but I don’t want to feel “strange” I tend to over think things then go into a panic..They are 7 day ones so cannot just stop or only take when pain is particularly bad.You all seem to be confident with your probs. but it is all still new to me, if only we had hind sight.

    #43517

    Eileen Asbury
    Participant

    Hi Again
    I agree with Di…….The hardest thing I had to do many years ago was ask for a stick LOL Then it was a walker, still felt like an old woman. Then I had to go onto these crutches permanently. I decided if they were going to be permanent they weren’t going to be grey NHS ones so I sent away for some. I’ve got one mauve pair and one pink pair At Christmas I decorate them with lights wrapped around them LOL Loads of people stop me and say how festive I look. Then a scooter for long journeys. You do get used to them. Make the most of them like I did with my crutches….pimp them LOL
    I just wish I could get my scooter into my car, Its a bit too big. Hubby can get it into his car and I hire one if I go to our large shopping mall.

    Good Luck with your search
    Love
    Eileen

    #43518

    lc
    Participant

    Hi Angybaby, the bottom line is and the hardest, is learning to except pain, and learning to live with it. whatever method you take and use of equipement you need to carry on living a life.if you feel happy to go out and enjoy a social life but cannot do so without a scooter or chair, then get one. so you can carry on doing things.if you cannot do something then sometimes you will find another way round it so you can do it. if you’ve tried everything possible and you find you still cannot do something then thats the hardest point of excepting that you can no longer do it.and learning to live with it. and ask for help with that perticular thing whatever it is. No shame In that. as Eileen says be different, and pimp up your mobility equipement, and get reckonised for it. its a good conversion starter. Take care and Best Wishes. Lee

    #43525

    Eileen Asbury
    Participant

    Hi
    Especially at Christmas…….a good talking point.LOL I walked into a large shopping centre feeling a bit scared the first time. People were walking around looking so harassed doing Christmas Shopping.
    Then they saw me and smiled and spoke. It was a nice feeling to make people smile
    Love
    Eileen

    #43526

    angybaby
    Participant

    Hi all..thankyou again for your kind messages.I have bought a collapsable motor scooter, it arrives on wednesday, how about that..A couple of days on this forum & 1 problem solved..Cannot wait for summer when I can fly around the car boot sales grabbing all the bargains, I think I missed that mostly over the last couple of years..So if you ever see a blonde lady flying hell for leather around a boot sale it is probably me..I used to make a few quid as well by selling them on ebay for a profit..Now to get my meds sorted..byeee

    #43527

    Eileen Asbury
    Participant

    Hi Angybaby
    That was quick……..well done. You wont regret it. Just be careful with car boot sales. I go to them as well. Tarmac ones are great but there are some that are very rough and hard to get around because of that.
    Lots of them although not tarmac I can drive around but there are a couple that are so rough I have to give them a miss. Don’t know about you but I’m in the North East and there are quite a few here so I can afford to miss some.
    What size of a car have you got? What kind of scooter is it? I would loveto be able to put mine in the boot.

    Love
    Eileen
    Happy scootering

    #43528

    angybaby
    Participant

    Hi Eileen, we have a toyota prius which is quite big so hopwfully it will fit in..The scooter is Pro Rider deluxe folding mobile scooter £499, look it up on ebay, there is only 1 person selling them & it folds right down without removing anything, you can also pull it along like a suitcase they say, if you want to use public transport. I don’t drive any more which is another thing I miss,the new hip is the right one which gives me most trouble, but I don’t think the scooter would fit in that boot, I gave it to my daughter, couldn’t bear to sell it for practicly nothing..I am in south east & quite a few boots here in summer but I think they are all field ones, will have to see how we get on with scooter.byee angybaby

    #43529

    Di
    Participant

    Just beware the weight for lifting it into a car. Mine breaks down into three pieces and the battery comes off so I can take it indoors to charge. There’s no way I could lift the entire thing. I even struggle with just the battery. If I don’t break apart the base I find it’s long enough to prop on the boot and then just push in so I don’t have to lift it. Sadly they’ve stopped making it now. It was the only one I ever came across where you could take the seat off and use it on its own because it has crossed legs. Most of them have seats on posts.
    Hope you enjoy yours

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