Whats your experience of Lidocaine Infusions?

[shushkin]

Im a long term fibro sufferer. Its been 5 years now and Ive been on everything. They are proposing to give me an infusion of lidocaine. Has anyone else had this procedure and did it help you? Theyve told me the usual it helps some and not others. To make matters worse my fibro has got even worse over the last year. Im in pain all the time (be it standing or seated or lying down) so you can imagine this procedure is most welcome if it works. Thanks for any responses.

[rosewine]

I think when you are in continuous pain anything is worth a try. Never had an infusion but do use Lidocaine patches and they certainly help with certain types of pain. I know several forum members have had the infusion so hopefully someone can come on who will be able to give you good information. Do hope it works for you.x

[Sorebones]

Not had it myself, but there are a good few members who have. If you put the treatment (check spelling first to make sure it's spot on) into the search box you will bring up previous posts about it which may give you more answers. 🐸

[TheAuthor]

Hi shushkin

It is not something that I have personally undergone but I have pasted you a link to the ''The National Institute for Health and Care Excellence,'' (NICE) cache on Lidocaine Infusions.

evidence.nhs.uk/formulary/b...

I want to genuinely and sincerely wish you all the best of luck with this if you decide to give it a try. Please take care of yourself.

All my hopes and dreams for you

Ken

[ksmiles2015]

Hi do you know if this will be a 1 off infusion or a series of infusions. I used to have Lidocaine infusions that started inn2002, at this time it involved a week's stay in hospital, 6 days of infusions each lasting about 8 hours. Blood pressure taken every hour & hooked up to a heart monitor. The first 1 made me feel like the bionic woman lol. Had relief for about 4 months. We used to go in every 6 months and had these for about 5 years. Began to feel that they were working less & less & as this amount of Lidocaine can cause problems for people with heart problems in the family, my dad, grand mother& grandfather all died of heart related problems. During one of my treatments I began to get chest pains but just left it until nurse came to do her checks & said are you OK to my rep!y well feel like elephant is sitting on my chest. Mad panic & diagnosed with massive angina attack, these eventually went a couple of years after stopping treatment.

I have also had a 1 off Lidocaine infusion that lasted about 2 hours, but this was for shoulder pain, which didn't help.

I think when we get so desperate we will try anything, but as long as you are fully aware of risks & hopefully rewards it's something to try, but from my experience & many friends who have had them, we don't believe a 1 off infusion helps with the complexities & possible many areas & types of pain this dreaded disease brings.

Let us know if you decide to go for it & your results

Karen

[shushkin in reply to ksmiles2015]

Thanks Karen for the info. You have confirmed some of what I was expecting. Im a bit concerned about the heart issue. Thats the biggest killer in my family!

[ksmiles2015 in reply to shushkin]

Heart problems are a big thing in my family too losing my dad, grand parents to heart attacks & my mom having hole in her heart when wasn't expected to live past 5. I was very scared b4 the first one but wasn't so scared after having it. Towards the end when I didn't feel I was getting any relief to what possible side effects my best friend who had been having infusions for about 5 years longer than me at 43 had to have triple heart bye pass, sitting in ICU seeing her wired up to all sorts & talking to her saying your not going anywhere etc was what finally helped me stop having them, a lot of people had stopped having relief but carried on because they were scared if they didn't have infusions there was nothing else.

As long as you are fully informed & they know your complete family history, it's definitely something worth trying. They hook you up to heart monitor & blood pressure monitor & these automatically take your readings every hour, but when I first started having them the nurses came around every hour to take them which I found more reasuring. The hardest part for me was being on bed for about 8 hours as I'm very restless and felt my Fibro would flair up while I was having it for the weeks treatment. Where are you having it done ? I know when I was having none there was only my hospital Russells Hall in Dudley West Midland & 1 in London doing them as week long infusions. My hospital stopped doing them after I decided to stop but think that was more down to the newer consultants one of which told me during private consultation that there was no such thing as Fibro it was depression( even though he had refused to examine or test my shoulder for 4 years saying it was Fibro, later turned out to be calcium Spurs & arthritis and had to have 2 operations) I had s feeling he wasn't a Fibro supporter by how he used to talk to the Fibro patients as opposed to others in the orthopaedic ward.

Let us know if you decide to go with them and how you feel after. My first one kicked in about 3 months, I felt like the Bionic woman lol xx

[joed]

Hi I've had a lidocaine infusion unfortunately it didn't work for me but I'm in so much violent daily pain an have tried every med an patch over the years my gp has put me on lidocaine patches I tried my first one last night an have woke up this morning still in pain but feel like I've been hit by a bus I don't want to put you off having it done as we are not all the same and it may work for some take care joanne x

[shushkin in reply to joed]

Thanks Joanne. I appreciate your honesty. Ive got to admit I am pretty desperate so perhaps any chance of easing the pain even a bit would be wonderful.

[Butterfly72]

Hi I have had lidocaine infusions for the last year every 6-8 weeks through the pain clinic. Takes about 2-3 hours depending on how well you react to it (can make you feel a bit dizzy ) . Unfortunately the pain relief didn't last very long and I am now on Phenytoin infusion.

Hope this helps.

[releasethemagic]

I have been having Lidocaine Infusions every 4 months for the last 8 years. I find it reduces my Fibro pain levels by at least 50% and makes life bearable. I managed to continue working full time from 2008 to 2013 with the Infusions and then I retired early at age 55.

The infusions take about two hours and are put into you intravenously through a cannula. A health care worker has to sit with you and monitor your blood pressure and heart rate throughout the procedure, adjusting the speed of the pump if either spike upwards or downwards. You cannot drive for 24 hours after the infusion and you cannot eat in the hours leading up to it. You need someone to take you home and to be with you at home for the first few hours, in case you have a bad reaction. Bad reactions are rare.

It takes a week or so to kick in so don't despair if initially the pain stays the same.

Good luck!

[shushkin in reply to releasethemagic]

Thanks Releasethemagic. That is very useful info. The oh is taking me and bringing me back. He said he would keep an eye on me. Im already very dizzy and fall over easily so this is not good news.