Only lidocaine patches work?! Can I use more? Or anything similar?

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  • #47828
    Rosa
    Participant

    Hi,

    Basically I’m bedbound due to a mix of other health conditions as well as severe fibromyalgia & severe ME/CFS. I’ve gone through a lot of other meds – including neuropathic meds, oral opioid meds, etc. Either didn’t work or couldn’t take due to stomach issues. The only ones left to try now are Butrans patches & opioid patches. I’m also on nortriptyline 20mg however I need to reduce it back down to 10mg due to horrible side effects.

    Meanwhile, the only thing that works dramatically is lidocaine patches. I can’t walk more than a few steps (and I literally mean like no more than 3 or 4 steps) due to leg pain & arm pain. Before starting to use lidocaine patches I couldn’t even pick up my phone. Now after starting them, I can use my phone & type. I had Horrific leg pain today & I put them on, a few hours later pain has reduced to much more tolerable levels. Still can’t walk much more but it makes a big difference to my pain levels in bed.

    The only issue is because I’m only allowed a max of 3 of the 5% patches (or I sometimes use 4 of the 4% patches), I have to choose between arms and legs as it won’t cover both. Has anyone ever used more than 3 or 4 patches? I’m wondering why I can’t. Because when you do lidocaine infusions you’re putting so much more into the actual bloodstream.. so why do they limit the amount of patches you use to just 3?

    And is there anything similar to lidocaine patches on the market that I can use otherwise…

    Also I do lots of meditation, Mindfulness, have tried CBD etc… lidocaine is the only thing that even touches the pain.

    PS I’m waiting for lidocaine infusions. Only issue is due to coronavirus I can’t travel anywhere atm & also my local hospital is saying they can’t do it And I need to go somewhere else which is too far for me atm.

    • This topic was modified 3 weeks, 5 days ago by Rosa.
    #47830
    Lc
    Participant

    Hi Rosa, Oh dear, I do feel for you and you have my sympathy your are dealing with so much at the moment, Your Dr would have told you how many patches to wear and for how long, using more and for longer could have serious side effects.I think it might be a case of where is your most pain area and putting the patch there. while having infusions they can monitor you while in hospital. Personally I don’t have fibro or ME, but do understand and live with Chronic persistent pain, nerve damage/pain SIJ Pain, arthritis amongst other ailments. and like you tried most things over the 23+ years.
    My GP wanted me out of pain and referred me back to pain clinic this year and already had a consultation after they looked at my records and said the only thing that would get me out of my pain is to anesthetize me from waist down but would not do it as I would be permanently paralyzed form waist down with no bladder or bowel control, If I was already like that, then they would consider it. so basically I have to live with it. I use a Tens machine which helps mask the nerve pain on top of amitriptyline which is the only thing I can take, along with the minimum of pain meds as I dont want to be zombified. other drugs and injections/ ablations ect either dont work or short lived. also use the tools I have learnt through mindfulness, CBT, pain management and do a mixture of all these things meditation/relaxation/visualization technics. I hope your pain resides a bit soon to give you some sort of relief. take care and best wishes . Lee

    #47845
    Eddie
    Participant

    Hi Rosa, like Lee, not only can I sympathise with you, I can empathise with you also. I have suffered chronic pain now for the past 40 years. Two unsuccessful Back operations and an unsuccessful total right Knee replacement and resultant consequential chronic pain is so debilitating. Been on all sorts of medication over the years which has had little or no lasting affect. Im currently on oral Morphine which barely tempers my pain and notwithstanding that, I am losing power in my legs, However, I have found prayer, meditation, mindfulness and relaxation techniques helpful. Havn’t tried the patches yet but would consider them as potentially my next port of call. I wish you well and I will remember you in my prayers, Very much one day at a time for me and even at that, I often have to break the day down into manageable chunks

    Eddie

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