Hi all I have had HMB from birth and FMS for 23 yrs. I have had every pain relief going to the point now I'm on 300mg morphine per day.

I am a patient of the CPC again have had every treatment that can be given. I am now going to have the lidocaine intravenous infusion as the last resort in 2 wks. Again it's not 100% or guaranteed to work at all but I am prepared to try anything to try and stop at least part or if not all of the pain disabling conditions. After I have had the procedure on the 10th of July I will let people know how successful it has been.

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  • Hi jofmshms11

    I sincerely hope that you are feeling as well as you possibly can be today? It really sounds like you have endured a great deal over the years, and I genuinely hope that this procedure works really well for you.

    I think many of us on the forum would be extremely interested to read how you get on and how everything goes?

    All my hopes and dreams for you

    Ken

  • I just want to say that you will be in my thoughts and prayers and truly hope that all goes as well as possible.

  • You say you have tried everything...how about Lyrica? I woke from a TIA with permanent debiitating pain so bad clothing, sheets water hurt me - Lyrica keeps the pain away.

  • The pain I have is so life changing that my GPs have put me on zomorph and oramorph , but I find it difficult to explain how much pain I am going through , I hope your pain relief works , because it is the only thing that gives us some type of life ,

  • Have you tried non-medical pain relief? Things like meditation, which doesn't alter the pain but it can help you to come to terms with it and live with it - there is an excellent charity called Breathworks which you can google for info., the have books and CD on meditative practice. You can also consult a hypnotherapist - I went to one that helped me by suggesting imagery that I could use on a spot that was very painful. Hot packs, cold packs, TENS machine, trigger point massage, massage (on average people who had regular massage were able to reduce analgesics by over 30%), distractions (I use audio books at night), if you have face pain/headache you can use mouth frames, also find a physio who can give you advice on simple stretching exercises that you can do with HMB, they would be specialised so that they didn't strain your joints. Also some vitamin supplements help - there are lots of books on helping fibro by changing your diet. If you have HMB it is important to have good posture that doesn't put your body under strain, and I really recommend Alexander Technique therapy which helped me a great deal. The difficulty with taking more and more medication is that they all have side effects and you start feeling ill because of those, so it is a delicate balance. I have so many side effects and paradoxical effects to medication that I try to use these alternatives as much as possible and somehow it has helped me to take back my body from the disease and put me in charge rather than the disease and doctors being in charge of me and making me feel so helpless. I hope this helps, you have been through so much. Love x

  • Hi all thank you for your kind support and replies. Yes I have tried absolutely everything over the period of the years I have had FMS. I have been admitted into hospital 5 times in the past 2 years due to chest pain again in relation to the condition but you can't just say to yourself I will ignore the pain as I know it's my condition just in case it's not. I have also got bursitis in both hips and shoulders again I've had the treatment however not worked. I've had private treatment seen a private consultant as I wanted to make sure I'd not been miss diagnosed as the intensity of pain we suffer I sometimes feel we are not believed in because it's not visual enough for other's to comprehend exactly what our bodies feel and go through both physical and mentally. I also think a lot of consultants and Dr's don't have enough knowledge hence my reasons for seeing a private one as I wanted a 100% diagnosis. I have been on 200mg of zomorph and 200mg of morphine daily for 10 month I have the liquid for the breakthrough pain which only takes the edge off. I have also had all treatments at the pain clinic over the last 5 yrs which haven't worked. This is why now I've been offered tge the lidocaine infusion which contains ketamine. I will be monitored throughout the procedure by my consultant as it can have side affects and it's not always suitable for everyone. Your body can reject it or it can make you violently sick I'm just hoping it will work as I have been told it is the last resort of pain relief that can be given after everything else has been given. I am also in the category to be lucky enough to be given it as I have had fms for over 20 yrs. I wish you all well and will keep you posted on my outcome of the treatment x

  • I want to wish you all the best of luck

    Ken

  • i feel for you as im at the same kind of pint as you are i have just been put on oramorph as the pain inmy thighs are so violent i to have tried every think in the book i has a lidocaine infusion 3 weeks ago unfortunatly it didnt do anything for me but fingers crossed for you we are all differant and was told it has a 20/25% chance of working good luck really hope this works for take care joann x

  • I am really praying for you, constant pain is soul destroying.

  • I'm sending lots of positive healing vibes your way and hope very much that your infusion gives you a good level of pain relief. It sounds like you've been through a lot and need something to work in your favour. :-)

    Foggy x

  • Good Luck I hope it works for

    you! Please let us know how you

    make out. X

  • Wishing all the best luck and success x

  • Praying this works for you sweetheart!!!! xxx Mitzi

  • You will be in my prayers on that day I do so hope that it can give you some relief from the terrible pain you have been inx

  • hope this can give you some releif from the pain best wishes.lilianxx

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