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Chronic Pain

CatmanCatman Posts: 64Member Courageous
I suffer from Fibromyalgia and struggle to deal with the constant torment of pain. I wake up in pain which worsens over the first hour, whilst my body 'wakes' up. I take my meds as prescribed but they do little to subdue the pain. The only thing that actually helps is cannabis, but I stick rigidly to having it late afternoon /early evening and mostly have just the one joint. How does everybody else living with daily pain, handle it? 

Replies

  • BeccaShark123BeccaShark123 Posts: 46Member Courageous
    Hi @Catman ,

    I have fibromyalgia as well. I found it very difficult (and still do some days) to deal with the pain. I have a low tolerance for pain relief like codeine, and over-the-counter ones like paracetamol and ibuprofen does not touch the sides. I tend to use methods that aren't medication, and I find trying my best to keep a good work-life balance does tend to help!

    Just recently, I was discharged from my local pain management service, and I was wondering if you have ever accessed them before? They were fantastic with me. I had access to a physio, clinical psychiatrist who worked on my stress levels- as that makes pain worse- and a pharmacist to discuss medications with. They are a multidisciplinary team all under one roof to help you live life as well as you can, even with chronic pain.

    They also provided me with a walking aid- a crutch- that really helps.

    There's a link about pain management services, and other NHS services, here:
    http://www.nhs.uk/Livewell/Pain/Pages/Longtermpain.aspx

    As for cannabis, I cannot comment as I have never tried it myself.

    Hope that helps,
    Becca :)
     
  • ms11ms11 Posts: 8Member Listener
    Hi Catman. I started with chronic pain 32 years ago. I had spent 14 years doing work that should have been done by three people, sometimes working 16 hours a day. I thrived on it at the time, but suddenly started slowing down, was forced out of work suddenly found I couldn't climb stairs, couldn't get off the settee, and then the pain kicked in, like nothing I had ever imagined. I remember thinking "I can't live with this". My GP was useless, shouting at me to "go buy some Nurofen", but eventually I changed my GP, spent some time in hospital, where I was quickly diagnosed with Anylosing Spondolitis. In hospital someone said to me that "once they know what it is, they won't be interested anymore", which was very true. After trying several pain killers, I found DiHyrocodine worked for me. My latest GP tells me she has never heard of anyone who has been on it for 32 years, but at least she didn't try to get me off it. I don't actually take it every day now, but when I need to, it works, and my wife says it cheers me up as well. The pain I get, which moves around from hips, shoulders, rib cage etc is like someone tightening a large bolt into my joints, turning the bolt tighter and tighter. I often say that DiHyrocodine helps me laugh at pain.
    I've never tried Cannabis - I hate the smell. I am probably the only person on my street that doesn't smoke it. From addicts, to old guys chilling out, everyone seems to be using it. I learned a lot about harder drugs some years back, and always found it strange that although I knew around 100 people who used the worst drugs, none of them would touch cannabis. I guess it depends what you need it for. They all said "it messes with your mind", but If it works for you, then why not ? The people who make the laws are usually the worst offenders, and prescription drugs can certainly affect your mind as well.
    We are all different, there is no "normal". Surely that's a good thing ?
  • TopkittenTopkitten Posts: 944Member Pioneering
    In 2005 I had major surgery on a cervical disc which had ruptured and I had been taking Cocodamol for 2 years whilst it was diagnosed and then on the waiting list. During recovery I started to experience pain in my lower legs that would never stop and in 2006 they discovered 2 lumbar discs collapsing. I remained on Cocodamol for 2 years before I was switched to Tramadol. For 6 years this was sufficient to enable me to get about a bit but then I had to mix in Dihydrocodeine for flare ups. After a year of mix and match I was finally put onto Buprenorphine patches with Tramadol for flare ups but after 3 months reacted badly so then was switched to Fentanyl. The levels of the patches have continued to increase and I am currently on 75 microgrammes but am desperately in need of a proper review. I have yet to find any but the odd person here and there and terminal cancer patients who have reached or exceeded this level. The pain, which began intermittent, is now constant 24/7 and the number of lower spinal discs collapsing has increased from 2 to 8 plus I now have a second cervical disc rupture (diagnosed 3 years ago and still not operated on). The cervical discs cause pain in the neck, shoulder and arm. The lower spinal discs cause pain in the legs and, more recently, lower back. After 10 years of constantly damaging the nerves in my spine I began to suffer permanent neural damage and pain in my right leg which is also 24/7 and feels like the leg is sitting in boiling hot water. The condition is progressive and slowly chewing it's way up the spine and I will suffer this every day until I am no longer living.

    I was under the Pain Clinic for the first 5 years but then passed onto GP's to maintain which has been a nightmare. The GP's will not read all the way through my notes, do not want anything to do with treating such high pain levels and almost always misdiagnose to something far less painful. My conversations with them are stressful and fraught with problems and consequently I have been deregistered twice by surgeries. Having been forced recently to register with a new surgery I am already having problems and the Practice Manager has ignored my requests to intervene so that I can receive proper care. I have lost count of the number of overdoses I have taken. Most were simply taking more pain killers than I was supposed to but at least a dozen were suicide attempts. I almost managed it last year, putting myself into a coma for 8 days but unfortunately I recovered. More recently I have been trying to help myself more (having never received any assistance from Mental Health in the 2 and a half years I was under them) but last week tried again... unsuccessfully again. I used to have care but it was taken away when a trainee Social Worker screwed up badly that it was my care or her job. The reasons were downright lies but I had made a complaint previously and the internal complaints procedure was a whitewash, so I didn't bother complaining again.

    My pain levels are way too high but I simply have to put up with it as I get little or no support (not even from my family now that mum is dead). I sleep badly (when I sleep at all), eat meals infrequently and shower only when I am desperate or want to hide the fact that I don't keep clean. The system just isn't designed to support an unknown condition and the Government rules about doctor patient contact just makes things worse. My condition doesn't have a name.

    I am intelligent enough to thoroughly understand what is happening and what the medication I take is for and how it does it but most doctors will not listen. Being bright simply makes things worse because I know exactly how I will progress. I get fed up with people calling it back pain. It isn't, it is spinal damage which is very different. Every day I have to walk about and function with pain levels similar to or higher than sciatica.

    I wouldn't describe my situation as "coping" but I somehow get through day after day. It's a case of having to.

    I have never used anything but prescribed medication.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • LuluALuluA Posts: 2Member Listener
    Hi, I have intense chronic pain which can only be calmed by morphine. I dislike morphine however as it makes me feel extremely nauseous, the answer to which was another blinking pill! A very good friend recommended Binaural Beats which you will find on YouTube and which, despite my scepticism do have a very helpful impact on and diminish my pain levels. Try a short one first, use headphones for best results and drink lots of water to prevent a headache as it can be dehydrating. Good luck. 
  • dogfatherdogfather Posts: 61Member Connected
    I hope you all get some sort of relief from your chronic pain. Pain is an awful thing it's always there and never goes away. Topkitten I just a thought, could you ask your GP to refer you back to the pain management team again. The request should be to see if you are a candidate for neruomodulation, they in plant a battery in your body, with leads attached to various nerves,along the spinal cord.  The aim is to block the pain reaching your brain. It's just a thought, that it may help you. 
  • TopkittenTopkitten Posts: 944Member Pioneering
    Lulua, all of the strongest pain killers are man-made morphine derivatives (morpheats), starting with Tramadol. When the pain is sufficiently bad, nausea is a much preferable problem.

    Thx dogfather, I have been referred back to the pain clinic, which has been moved from the hospital into the community healing program in this area. Unfortunately the so-called specialist has already screwed up. Tried to shift the focus onto the neck issue so he could get out of trying to deal with something he doesn't understand. My only recourse is to complain and that has not worked well in the past but I am considering. I'm still under the clinic though and am supposed to be placed on courses similar to those I attended in the past. I'm awaiting a date for the first but it's a slow process. The course may not help but it will, at least, put me in touch with practical help.

    Unfortunately things have gotten worse recently. The GP wanted me to try Duloxetine... again. Admittedly it did help with the neural pain but, instead of helping with the depression, the dramatic side effects made it less and less possible to cope at home. Consequently I spent most of last Saturday in A&E recovering from another overdose. The only reason I am still about is that my body physically rejected the tablets I took. I needed to take 20+ to make it happen but couldn't keep more than 18 down. I have stopped taking the Duloxetine and, despite a 24 hour medication crash, am doing much better albeit with the pain levels back up. I do have the energy to eat reasonably well and go out a bit more now. During the 2 weeks I was on the stuff I only managed 4 hot meals, 1 sandwich, half a packet of biscuits and a couple of boxes of jam tarts. I lost a stone in weight total over the period. The day after the crash I began eating better and resumed getting things done once more. Even managed to book a couple of days in Italy with my son which will happen in September so I have something to look forward to. Mum's death hit me very hard but at least she'd have been happy that the money she left me has given me the freedom to begin living again.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
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