My pain and me

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This topic contains 4 replies, has 5 voices, and was last updated by  PaulT_99 2 weeks, 1 day ago.

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  • #46727

    Yv
    Participant

    So yesterday i was diagnosed with fibromyalgia, i’ve been poorly for so long now don’t remember what it’s like to wake up without any pain.
    I struggled for many years with a bad back but put it down to my job as a palliative carer but one morning woke with a dreadfully stiff neck, time went on and it got worse and worse which lead to a numb left hand, pins and needles and the pain was horrendous. I was then sent to have acupuncture, physio and steroid injections but nothing touched the sides, I was taking to many tramadols a day and it caused a massive problem with my quality of life. After a good year or so a locum doctor couldn’t understand why i hadn’t been referred for an mri so this is what happened next, they found that my disc’s where squeezing on the nerves in my spine,vertebrae c5, c6, and c7, 6 months later i had an op where they went through the back of my neck and shaved the poorly area, this had little effect and after another 6 months they went through the front of my neck and put spacers in.Now this has apparently worked but i’m still in so much pain, i then started to get dreadful sciatica and 6 months later i was given another mri to find that L4 and L5 are causing me the same problem, i’ve had steroid injection but again very little has helped.
    I’m now at a point where i haven’t been able to work since January 2014 i take a cocktail of medication, Sertraline 200mg zomorph 10mg twice a day Nitrazepam 5mg Tramadol 100mg Diazepam 4mg Gabapentin 900mg 3 times a day, Amitriptyline 25mg also Morphine sulfate as and when.
    When i visited my physio last week at the hospital she informed me that my consultant was looking to give me an epidural into my neck so that is as far as i’ve got really. I suffer with depression which has got increasingly worse during the past 15 years dealing with this pain.
    I’m not really sure as to what i am expecting from my joining, i guess i’m just reaching out to anyone suffering like i do as it’s very lonely dealing with this day in day out. Thanks for reading Yvette x

    #46730

    Jan Sadler
    Keymaster

    Hi Yvette
    A big welcome to you. There are many of us here who also deal with pain of all kinds on a daily basis so I’m sure you will receive lots of replies to your post. YOu’ve certainly had a tough time recently and you’ve come to the right place for support and advice and hopefully feel more in control of your pain.

    I’ve already sent you an email that contains some useful links to pages on this website. Pages that are packed with information about pain relief and things you can do for yourself to make life easier. A good start is to investigate the Pain Relief link on this page.

    Choose somewhere to start, such as relaxation, say, or pacing. There is a lot of information so take it slowly. Gradually try out ideas that you find helpful to give you some pain relief and a sense of control.

    Keep in touch and let us know how you get on.

    Jan at PainSupport 🙂

    #46731

    lc
    Participant

    Hi Yvette, welcome to this site, looks like Jan has already given you a place to start.
    You have been through the mill, also that’s one hell of a cocktail of drugs your on.
    over the years I used to be on a lot of drugs like that, but I have whittled it down to just a few that i can manage on as i don’t like being zombified and just existing,also made me quite ill, worse than i was without it.I have been in constant pain now for about 23 years. and tried most things to find out what works for me, as what works for one doesn’t mean it will work for you, it’s a case of trial and error. also as you know, constant pain goes hand in hand with mental health issues, and have done counselling but what worked for me was CBT one to one and mindfulness course which gave me a better insight to how to cope and deal with it all. i prefer to go down the alternative root, don’t get me wrong i still use drugs to control most of my pain but then use alternative methods like distraction and gentle exercise as and when i can, like art wood carving ,leather work, swimming, and use a Tens machine as and when, meditation (mindfulness) and visualization, all this has also benefited my mental health as well as this site where you can talk to others that truly understand what living with pain is about. Pacing yourself is a good thing to learn and learn how you are effected each day as no 2 days are the same so need to pace how you are on that particular day. some have gone down the root of SCS to control there pain most recent is a PaulT_99 you can read other posts if you type in say breathworks mindfulness for health in the search forums box it will bring you to that post for which there is HelenH who done a online course and I have joined up with her to help with a blog she is in the process of writing. and her journey through it all with her blogs is worth a read. hope you find some ideas to try and get in control of your pain also to help with your mental health. take care and best wishes. Lee

    #46733

    Helen H
    Participant

    HI Yvette

    and welcome to the forum! I think you will find folk here friendly and understanding. Unlike many in the medical profession, we know first hand what it is like living with constant pain…and the resulting mental health problems.

    It sounds as if you have had a truly awful time of it, and it is no wonder this has not helped your depression.

    As Lee says I have just done an online mindfulness course. I was unable to do a course at Pain management as I am mainly bedbound and they were very strict on attending for the full day, which is impossible for me. This course suited me very well, as it is self paced and you can take as long as you want.

    I am in flare-up at the moment, and the guided meditations are a vital part of negotiating my way through the long days. I wish I had taken Lee’s advice when I first joined this forum 4 years ago, and done a mindfulness course sooner!

    Wishing you better days
    Helen

    #46734

    PaulT_99
    Participant

    Hi Yvette,

    My goodness you sound in a terrible state. And with all those drugs im amazed you can even function day to day.

    Ive taken all those as well in the past. Ive been a chronic pain sufferer for 17 years. But 1.5 yrs ago i was referred to St Thomas pain clinic in London and everything changed for the better.

    They got me off all the cocktail of drugs and they put me onto Tapentadol, just the one medication. Amazing stuff. Its a relatively new medicine released in 2012 in the UK and most doctors have not even heard of it. My own GP included. So the pain clinic prescribe it for me and the chemist has to special order it in.

    Then early last year they approved me for a Spinal Cord Stimulation programme as LC mentions. This is massively complex and a long journey.
    St thomas use the “Nevro HF10” product. Check out the Nevro website.
    There is lots on the internet about SCS and it has developed alot over the years. Old versions were low frequency and felt like old Tens machines. The new High Frequency ones you cannot even tell are running. They just stop pain…

    SCS is an absolute Last Chance at tackling pain, so its the end of the road as it were. Hospitals are very wary of just dishing it out due to the cost. Somewhere near £80k for the total process start to end.

    I have done so much research on it my head used to hurt from it. But i learned that alot of the final result issues that people were having were just down to the surgeons and their placement of the product. The wires must be placed exactly in the right place. And then the unit needs to be programmed correctly and fine tuned. Thankfully St Thomas are Nevro experts.

    My unit runs inside me now 24/7, and my pain is down to 2/10. Sometimes on a bad day 4/10. Where as it used to be 9/10.
    I am having issues with the internal battery placement. As do many. My battery unit moved and now its poking out and is pretty sore. So now that needs to be worked on.
    But honestly, even that is a small price to pay to not be where i was.
    2 Yrs ago i was about to end it all, it was on my mind daily. And im not in that place anymore thank goodness.

    You do not mention Pain Clinic in your post, so i would recommend getting into one asap. And if you can, go to St. Thomas. If its far, done worry about the journey, they pick you up and take you back home again. I know of patients that go there from over 100 miles away.

    Please keep us updated, and you will find it helps a great deal to talk to people in your situation. As it is common that family members just do not understand.

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