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  • This topic has 15 replies, 5 voices, and was last updated 3 weeks ago by Gee.
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  • #47427
    Gee
    Participant

    Hello all, this my first posting on any forum about pain (I am rather slow when it comes to tech!). I have had MS for 20 plus years and have had pain for the whole time, it has been the one constant as other symptoms and disabilities have got worse have got worse. Over the years I have gone through just about every med. and treatment from aspirin to morphine, via paom clinics, courses via acupuncture and mindfulness, but still in pain! I have reduced morphine from 300 mg per day and am working to reduce intake to 40 mg on the advice of the pain specialist. I am finding it so hard work to function with pain, lack of sleep and lack of mobility. Without being dramatic, an honest question, is there a point where one should just accept that nothing works and call it a day? I just seem to have run out of steam! Any advice or thoughts would be welcome. Sorry to post such a down message to end the year with. Gee

    #47431
    Lc
    Participant

    Hi Gee , Welcome to this friendly site there is a lot of info. on here at top of page in blue just click the link, also for any forums that speak about a certain problem to the top right of page search forums just put in the box MS click search it will come up with all posts relating to MS warning there will be a lot of threads.
    i have been in constant pain for about 23 years now and like you been on all types of meds and injections ect, I do not have MS though. and over the years and after suffering deep depression (suicidal) and ptsd and anxiety, as well have come to accept that this is how i am now, the pain will never go away, and i will not get better. I live on the minimum of pain killers and nerve pain meds as possible also use alternative therapy to and cope with what i have learnt through CBT and mindfulness, with meditation/ visualization technics and a Tens machine,and go swimming once a week or when possible and use my art and crafts to focus away from pain also do my family tree. it does not take the pain away, nothing will, but this is how i cope. and once i had total acceptance that this was how i am now and that i am not the person i once was and cannot do the things i once did and that i had changed due to pain ,I found that by letting all that go and live in the here and now and not worry about the past or future, and getting rid of baggage that drags you down, I am in a better place now than i ever was, despite the constant pain, i do what i can when i can and be kind to yourself and treat yourself now and again and do the things that make you happy /love doing. no mater how long it takes you to do/achieve something as long as it gets finished at some point that s all that matters, also having a good nights sleep is important,so you are not as drained out and can cope/get through the day, and work out what is most important to you and your life, its the little things that matter.Take care and best wishes, Lee

    #47432
    Gee
    Participant

    Hi Lee, many thanks for the welcome and your kind thoughts, lots to think about! I have just started a new med, which is giving me some much needed sleep, but leaving me a bit of a zombie for the following day, hopefully these side effects will wear off in the next year or so! All the best to all Gee

    #47433
    Helen H
    Participant

    Hi Gee
    And welcome to a very friendly forum that has helped me a lot. The kindness of folk on here has really kept me going during the toughest times.
    I have had moderate to severe ME for the last 29 years, with constant pain for the last 6 years.
    You ask a good question and it is one that I do struggle with, but my view is that I can’t control what happens, but I can choose how I live it. There are no easy answers with pain- we are all looking for that elusive medication that will make the pain disappear, but as far as I know that doesn’t exist.

    There are ways of living better, and many of us priorities sleep and mental and emotional health over searching for cures, as better mental health helps the overall quality of life. I don’t have much energy so I prioritise things that bring me joy, even if just for a minute. I don’t want to be at the end of my life and wishing I had spent less time thinking about being sick.

    Lee is right, mindfulness is not easy but is really life changing.

    Wishing you all a brighter 2020
    Take care
    Helen

    • This reply was modified 3 weeks, 4 days ago by Helen H.
    #47436
    Gee
    Participant

    Hi Helen, sincere th­anks for the reply, of course you are ri­ght, there are no ma­gic pills! I have us­ed mindfulness and mindful breathing and, and, and, I suppose part of the problem is that the pain is worse at night, so sleeping is difficu­lt, so pain gets wor­se! After 23 years it is all such hard work, just keeping​ going day after day. But, hey ho, life’s a bitch and then you die!​ Regards Gee.
    Ps sorry it took so long to reply, I sent this post to the wrong place!

    #47437
    Lc
    Participant

    Hi Gee,
    Have a Good New Year, Mindfulness,
    did you do a course with a therapist, or was it something you done on your own off the internet? because on your own a lot of people don’t quite get it, where with a good therapist and guidance it goes quite deep. It is no quick fix and you need to practice most days, the more you PRACTICE the easier and better you become despite being in pain, a bit like the Buddhist monks practice it. you start to see everything in a different perspective.
    to help you try and understand a bit more about it, if you wish, try typing mindfulness into the search forum box and read the posts that Helen and I talk about as there is a lot and go into greater detail when I helped Helen with it all,
    I understand where your coming from I used to be like that and at the end of my tether and thought like you, you need to find a purpose in life to carry on, whatever that may be, there are no pills to make it all go away, the brutal honesty some people need to learn to suck lemons and get on with it and not give a f*** about it all, but at the same time need to give yourself a treat and be kinder to yourself. and not beat yourself up over it all.
    On the sleep side of things I found Amitriptyline works for me, great, as it helps me have a good nights sleep and has the nerve pain under some control, stops my legs jumping around, and also lightens my mood a bit. But what works for one doesn’t mean it works for someone else, it’s a case of finding stuff that works the best for you, I struggled for years with lack of sleep but now I dont. as all the other nerve pain drugs and injections/ablations,were iether short lived,didn’t work , couldn’t tolerate or had adverse reactions to.But like you, after such a long time living in pain and tried most drugs ect. personally I stick to the minimum ,my choice as i don’t like being zombified and not knowing what day it is all the time, I do take the stronger ones when I have had enough and want a coupe of days break from managing /dealing with my pain, then come off of them again until next time mainly when I have flare ups. but that’s usually unexplained or occasionally not paced myself properly. Maybe if you cannot sleep properly it’s time for another visit to pain clinic or GP to try something else that might give you a better nights sleep. Take care and best wishes, Lee

    #47438
    Gee
    Participant

    Hi Lee, many thanks for your very helpful and supportive comments. I have done a couple of courses on mindfulness as well as read the Cabbot-Zin book many years ago. I have found this approach helpful in the past but, a combination of pain, lack of sleep, mobility issues (and did I mention pain!) can conspire to make mindfullness quite difficult. Right now, I am on yet another drive to reduce meds. I think 50% of the problems I have had over the years have been around side effects of drugs the medics have put me on. I have reduced morphine from around 300mg plus to around 40mg each day, and it has been more than a little hard, to say the least! Also, I think I have decided to join Dignitas, not because I plan to make use of them in the near future (or indeed ever) but, I want to have a plan b for the future. Meanwhile, 2020 is almost with us and I have every confidence that the next 12 month will bring, a wonder drug, a pools win and a Nobel prize ( for whingeing!) Happy new year, Lee and one and all. P.s. can anyone help me with my post asking for info on morphine?

    #47439
    Lc
    Participant

    Hi Gee, I’m not really sure we can give you the answers you need about morphine only our experience with this drug that’s probably why no-one has answered as it’s a difficult one to say. I would suggest The best person to ask is a consultant from pain management. to ask about damage caused to you.15 years is a long time to be on morphine hence the damage it has caused you. and obviously need to be managed when coming off very slowly and you probably will still get side effects from it. that’s just part and parcel with some of these drugs and poisons they give you. I have heard of dignitas it’s in switzerland the dignity of dying. personally I agree with it in some instances, and in the uk I think they know but push you till the end then just dope you up with so much poison to help with very extreme pain that it’s the stuff they give you kills you not the pain, like in end of life care, for cancer patients and such like. as cancer can be a slow process and you may suffer longer without the meds they pump into you.
    I am in constant pain just varying levels from day to day from manageable to AGGGHH,and have mobility problems to which are getting worse over the years, and use a wheelchair, and been down that road, of suicide,more than once, but when hit the very bottom just thought what a selfish thing to do, Yes i’m suffering and with this pain I cannot carry on, but the people that love you and care for you will suffer the rest of their lives without you and have to live with that pain every day to. so it’s a case of getting priorities right for you and what is most important to yourself and push pain to one side for a bit, pain is part of you like many of us on here, and many have been down the same road on this site we are all on the same path, but it’s a state of mind of how you deal with it. and life can have enjoyment in it, despite the pain we are all in. finding them things and what truly makes us happy in life is the main key, happiness comes from within and state of mind.find these things and pain gets easier to live with. that’s just a fact we all die at some point naturally anyway whatever way that may be for individuals pain itself is not a killer.
    That is what is good about this site people can get together and talk about how we feel and if all put together has more experience than any GP or consultant just by our experiences. and with empathy and understanding help each other get through difficult times. take care and best wishes, Lee

    #47440
    Jan Sadler
    Keymaster

    Have you tried the MS Society?
    They have a programme for using Sativex (cannabis).
    It’s worth a good read to see if you think you may like to follow it up.
    https://www.mssociety.org.uk/about-ms/treatments-and-therapies/cannabis

    All the best to you and everyone else for a Very Happy New Year.

    Thank you all for being so helpful to others.

    Jan st PainSupport

    #47441
    Jan Sadler
    Keymaster

    Sorry, I meant MS Society.
    https://www.mssociety.org.uk/about-ms/treatments-and-therapies/cannabis

    Jan at PainSupport

    #47442
    Gee
    Participant

    Hi Lee, thank you for your care and wisdom. Got through another day and the sun is shining! Happy 2020 to you and one and all.

    #47443
    Gee
    Participant

    Hi Jan, many thanks for you advice, yes I am in touch with the MS society (member for 22 years). I hope you have as good a 2020 as possible! Gee

    #47444
    Rosan
    Participant

    Hi Newbee

    I have used morphine only when in hospital but good to know if any of the users here have used this med. I think it would be good to hear the personal story or experience of others. I avoid drugs at all costs. I had taken medications before but I always was in and out of hospital for the side effects and I no longer have that. But the pain is with me 24/7 and can reduce it if I do not eat food but it is catch 22, if I don’t eat at all, I will have zero energy.

    Look after yourself and a happy new year, we are getting closer to spring day by day😆

    #47445
    Gee
    Participant

    Hi Rosan, many thanks for your reply about using morphine. Because I have MS I have been on larger and larger does of this awful stuff for over 15 years. Over this time I have had a whole range of issues ranging from bone sepsis twice though to insomnia, eyesight problems, depression etc, etc. I have reduced the dose from 320mg per day down to around 40mg now. What I have only just found out is just how many things morphine use in the long term can effect, hence the joy of withdrawal and more pain. What I don’t know also is how permanant the side effects and destruction to hormones,, receptors etc are and, if the damage that has been done over the years can ever be reversed? The “odd” thing is, all the meds I have taken over the years have been prescribed to me by the same medics who are now shouting stop! Meanwhile, I will go back to finding pine needles in the carpet.!

    #47446
    Rosan
    Participant

    Hi Gee
    I am sorry about the plight of your health. One way or another we are in the same boat. I personally have given up on medication and today I bought CBD oil for pain relief. I am using it with cautious because my brain is badly reacting to any medication I take, even eating food. As medicine advances the view of doctors change based on trial and error. Similarly, I have got Fibromyalgia but I am told it takes years before scientist can find out why the behaviour of the brain changes because of memory loss etc.

    So to cut the story short, I would recommend joining Pain Concern, which you may know about it, through this chat line you may find MS Community. It was via this app that I was able to find the Fibromyalgia community within Pain Concern. We chat about our pain and lots of other things to make our days a bit easier. The majority of our talks is about the medications we take and their side effects. Hope this helps.

    I hope you do not give up hope despite our tribulations.

    Best wishes

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