OK, so now what?

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This topic contains 24 replies, has 9 voices, and was last updated by  LuckyLeeBeePee 3 weeks, 5 days ago.

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  • #45795

    Astra
    Participant

    Hi everyone

    I went to the Pain Management Clinic at Guy’s & St Thomas’s today.
    The dr told me they have nothing more to offer me. He’s going to write to my GP and suggest I try lidocaine patches, although he thinks they’re unlikely to be much help, and also ask the GP to refer me for another course of hydrotherapy. He also suggested I get more exercise (without actually asking me what exercise I currently get). He surmised that some of my pain is due to arthritis caused by lack of movement. (I disagree)

    I just feel like they’ve given up on me. Do I just have to accept that I’m stuck with this pain? I know I can’t be “fixed” but I was hoping to find something that would give me at least some relief.

    I’m usually a pull-yourself-together-and-get-on-with-it sort of person, but today has left me feeling a bit down. I don’t know what to do now.

    #45796

    Raphael
    Participant

    There is a letter on Neuroplasticity that is worth reading. A couple of days back.
    Duloxetine is a good “additive”

    #45797

    Jan Sadler
    Keymaster

    Hi Astra, we have a trial just starting of the Arc4Health pain relief device, you might like to join this? Here’s the post about it:

    Free 6-Week Trial of Arc4Health Wearable Pain Relief Device


    Jan at PainSupport

    #45801

    lc
    Participant

    Hi Astra , I’m in the same boat. physio and pain clinic/ pain management. have exhausted themselves with me a long time ago now. hospitals can only deal with mechanical and neurology ailments and thats where they stop.after that they don’t know what else to do with you except offer medication to help with pain management. My local has asked if I can attend to there new scheme they have called UP (understanding pain) which I attend to on a monday basically they want me there to help and talk to others how I manage and deal with my pain, also the two women that run it are learning from me , and they are top of there field. I’m asking them questions that i want answered and they just both look at each other and say we don’t know about that. also it is basically the same as pain management course that people have.and sussed that out on the first session. some things have changed a bit but no more than what we all talk about on here. For me CBT and Mindfulness has got me in a better place and understanding than anywhere else, and keeping in touch with people on this site. but we all deal and cope in our own different ways as we are all different to what works for us personally. it’s a case of you finding what combination of things that work best for you. Take care and best wishes. Lee

    #45802

    lc
    Participant

    forgot to say I have also just gone for the trial of arc4health device that Jan has mentioned above, and will be posting my experience of it when i have received it and if it works for me. Lee

    #45805

    PaulT_99
    Participant

    Hi Astra,

    Im a patient of Guys & St Thomas. I was just there on Tues, and back again this Fri. So a bit of a regular.
    Got to say, in my case anyway i have found them very good. They really wouldn’t say its the end of the road, unless that was actually the case. They are supposed to be the UK leaders in pain management.
    What Dr are you seeing there ?, im under Mr Smith and hes presently doing my Spinal Cord Stimulation implant.

    Has SCS been offered to you ?. Although it all depends on your type of pain and where it is.
    Re Lidocane patches, i personally found them completely useless for my Hip pain at the time. They have to be put exactly over the effected area. You can also have “Lidocane Infusions”. Where they inject you with it. Typically 500ml over 1hr, using a special machine to slowly infuse it into your blood stream.
    Works for some, and not for others as in my case.

    Can you explain your pain to us. Where it is, how it feels. What you have tried already etc. Some of us might be able to give you ideas, or pointers that can help.

    All the best.
    Paul

    #45807

    lc
    Participant

    Hi Yes I agree with Paul the last bit explain please some of us might be able to help better take care and best wishes. Lee

    #45813

    Astra
    Participant

    Thanks for the replies. Always good to know there are others like me out there!

    My history: May 2013 I had a very serious car accident. I had a head injury and a back injury, both of which turned out to be fairly minor. The major injury was to my right collar bone. A&E misdiagnosed it as a simple fracture which would heal by itself. After 10 weeks, it became apparent that it wasn’t a simple fracture at all. Smashed to smithereens would be more accurate. I had surgery to insert a plate and have been in constant pain ever since. I have hyperaesthesia all around the surgical scar, which runs from mid-shoulder to the top of my sternum. I also have mechanical pain when moving my arm (it feels as if the bone is still broken). Nobody seems to know why.

    I’ve tried numerous drugs: cocodamol, gabapentin, pregabalin, amitriptyline, duloxetine, tramadol, zomorph, oxycodone, butrans patches to name a few. I’ve also had acupuncture, a TENS machine and CBT. Nothing has helped.

    I first went to Guy’s & St Thomas’s in February. I’m under the care of Dr Al-Kaisy, but I’ve never met him/her. The first Dr I saw recommended a trial of a capsaicin patch which I had in April. (When I got there, it turned out the Dr I saw in Feb had written in my notes that it was my scapula instead of my clavicle) The capsaicin patch didn’t work (and was extremely unpleasant). I was supposed to get a follow up phone call about 6 weeks after the patch trial. Only after chasing them did I eventually get that call at the end of August! They’d “lost” me. I then got the appointment for this week.

    The Dr I saw this week wasn’t the same as last time. He seemed more interested in whether the accident was the subject of litigation and even asked who was handling it. Not sure how he came up with the arthritis diagnosis. They haven’t taken any xrays or anything else. He also said that opioids don’t work, and they no longer prescribe them. (I didn’t ask for any).

    I said I’d been considering CBD oil, but was confused by the vast array that’s available. He just went on about how smoking cannabis causes schizophrenia. I pointed out that I wasn’t talking about smoking cannabis, but using the CBD oil that you can buy perfectly legally. He just said that can cause schizophrenia too. Feels like I trekked all the way to London for nothing.

    I’ll certainly read about neuroplasticity as mentioned, and also look at the Arc4Health device. I’m willing to try just about anything!

    Thanks again for the support – no-one but a fellow sufferer gets it.

    #45815

    PaulT_99
    Participant

    Hi Astra,

    Ummm, it sounds a bad experience at St. Thomas. Ive never heard of those Dr’s in the 2 years ive been going there. Maybe worth a email to St. Thomas PALS and get referred to another doctor.

    Of course i am no expert. But ive had medical issues since 2004 so have become quite versed. It sounds like a combo of both mechanical joint/bone, plus Nerve issues which result in your pain.
    Did St. Thomas not recommend “Tapentadol” ?. Its a painkiller aimed at nerve pain and is quite new. Only released in 2012. Ive been on it for 1.5yrs and its the only thing thats ever worked in my life. With the exception of the SCS that i now have.
    Thats also a possibility for you.

    A guy on my pain course had horrendous upper back / shoulder / neck issues. He was literally at the point of putting a bullet in his head. But hes gone onto have SCS, and now only has a pain score of 2/10 and off all meds.
    So there are other options.
    This screams 2nd Opinion to me…..

    ** Just another note on St. Thomas.
    1.5yrs ago i was in a bad place, and 3 Dr’s there and 2 pain nurses were all sat in a room with me, and they said Paul. We are not going to stop until we find something that can help you. At the time that was very moving, and true to their word they have.
    Try to see another doctor there and give them another chance 🙂

    #45816

    Astra
    Participant

    Hi Paul
    Thanks – nice to know it’s not just me! I did wonder about asking for a second opinion. The Dr I saw was all of about 12 (well, maybe 15!). I got the impression he thought I was malingering because of the ongoing litigation for the accident.

    Tapentadol is one of the many drugs I’ve already tried. I think I’ve exhausted the list. SCS has never been mentioned. External neuromodulation has been mentioned previously. I did ask about that yesterday, but he said there was no point as it wouldn’t work for me. The only thing he suggested apart from the lidocaine patches and hydrotherapy was amitriptyline. That was one of the first drugs I tried. It did nothing for the pain and the side effects were horrendous.

    I’ll have a chat with my GP (who’s great). Feeling very frustrated at the moment.

    #45817

    lc
    Participant

    Hi Astra you can get arthritis any where in old injury or surgery site to fix broken bones I have it all around my fusion site and pelvis, it sounds like you are just another case like me that they do not know what to do with. I found mindfulness helps me mentally to accept that this is how you are now and to cope and deal with the pain in a moment by moment way. and to keep moving as best you can even while in pain. as it seems you are not doing any more harm. have you tried swimming, or hydra pool with a physiotherapist to try and get your arm and shoulder moving a bit more they must have seen your x-rays to see that no more can be done surgically, have you tried steroid injections around the scare site, some people find this helpful. I am on the list to try out the arc4health device to trial it just to see if it does benefit me. I’m up for anything new to trial it. mentally my pain lives along side me and not my pain controlling me, and found that most of these nerve drugs and pain meds do not work or somewhat does, or i cannot tolerate them. so keep to a minimum on the ones i am on, then when the pain rises i take the higher dose, it then works somewhat so i can manage better. then after a few days go back to the lower dose . I have been doing this for quite a few years now and noticed over this time i can tolerate more pain than before. this method i have found that you can tolerate more, like i dislocated /fractured my toe and put it back in place without any injections to numb it I went to hospital that was just to see if i put the toe back correctly the drs up there just looked at me as if i had 2 heads LOL and couldn’t believe i had done that. any way take care and best wishes . Lee

    #45818

    Laura
    Participant

    Hi Astra,

    I’m another person that was discharged from the same hospital as you … I even saw the same consultant although this was about 6 years ago. I tried the SCS but hated the strong electric shock type of feeling it gave me but PaulT_99 (above)is trying a better device and it’s given me some hope.

    I too have tried all the drugs etc. that are available with no help at all. I think it’s learning to live with what you can do and not to worry about what you can’t.. I know that’s rather simplistic but that’s the only way I can look at it. It’s not a life you’d wish on anyone is it? Good luck, keep in touch, this forum gives you space to have a moan and join in with others who really understand what you’re feeling.

    #45819

    Astra
    Participant

    Thanks guys. I suppose I knew there might come a point when there was nothing left to try, but I didn’t expect to reach it after only one treatment that didn’t work!

    I’m currently not taking any meds of any kind. I just deal with it as best I can. Mostly I try to distract myself so that I’m not dwelling on the pain. Some days I’m more successful than others. Nights are the worst. I don’t sleep well as it’s so hard to get comfortable. Pain usually wakes me several times, so I’m constantly tired.

    Just feeling a bit sorry for myself I guess! I couldn’t get into mindfulness at all, but I do believe in trying to be positive, so I try to focus on what I can do rather than what I can’t. I’ve had to learn to do a lot of things left handed.

    The Dr I saw yesterday said he’d write to my GP so I’ll be interested to see what that letter says.

    #45823

    lc
    Participant

    Hi Astra, If you haven’t tried tapentadol or asked about scs as Paul states then I would suggest that, also as he says get another opinion and get to see someone who’s more senior. I agree with him on that.
    Mindfulness is not a quick fix and needs to be practised regular, it is a way of life, a bit like the Buddhist monks. Did you do a course on it with a therapist After CBT, as that is what I did, rather than trying to do it off the internet ect. as a therapist can answer any questions or the way you felt while doing it and can guide you better for your specific needs. it’s up to you, but If you typed in mindfulness into the search forums box , I have talked about it in more detail on other posts, there is a lot on there so you may have to cyphon through it all to get the picture, as i have answered people individually. Or tried any other relaxation /meditation methods that may help especially at night time to try and get you off to sleep, there is a lot out there. But at the end of the day you just have to exhaust all options and when new ones come along give it a go, and it’s a case of what combination of drugs and alternative methods that work for you, as we all are different, the hardest part is total acceptance that this is who you are now, and that things have changed for you, and it may not get any better,once you have stopped fighting with yourself over it all, it gets a lot better and easier to cope and deal with it all.Be at peace within yourself, I am not patronising you in anyway or form and your pain is real, it’s dealing with it all mentally , SORRY if it all sounds that way to you. I am Ok with amitriptyline as it,s the only one I can take for nerve pain , It doesn’t take the pain completely away but dulls it to a more manageable level ,and use a Tens to help distract my mind away from pain, It also helps me get to sleep and usually get a good one. Hope you get and find things that can help you get some relief soon. take care and best wishes, Lee

    #45825

    Astra
    Participant

    Hi Lee
    Don’t worry you’re not being patronising! The one thing the CBT did for me was make me realise I’d been fooling myself. I thought I’d accepted my new reality, but I hadn’t. Not sure I’m quite there yet. I’m not as angry as I was, but it hasn’t gone away completely. I think only time will do that.

    I forgot to say that the accident was a hit & run and the other driver was never caught, so that’s a large part of why I was so angry.

    I’m so glad I found this site. With the best will in the world, other people really don’t understand.

    I think I’ll make an appointment with my GP when the letter arrives and see if we can come up with a plan.

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