Has anyone had lidocaine infusions ? - Fibromyalgia Acti...

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Has anyone had lidocaine infusions ?

Fificat50 profile image
13 Replies

Hi ! My private pain consultant has suggested the above for pain relief. I have looked it up and know that people have had these but I am wondering if they are cost effective ie how long do they last in terms of pain relief and any side effects ?

I am currently weaning myself off of pregablin. ( taken for nerve pain / fibro wide spread pain ) and wondered if this treatment would help me get off of pregablin ?

Happy to hear from you and any comments or thoughts you may have.

Thanking you all in advance

Fiona xx

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Fificat50 profile image
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13 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

quite a few people have although people are finding them more difficult to obtain. Relief can be 3-6 months which is one of their big benefits. Typically they are higher on the therapeutic ladder so other treatments must be tried first and ruled out.

They do not work for everyone either.

Fificat50 profile image
Fificat50 in reply to desquinn

Thank you. What other treatments should be looked at first? We did not discuss any other treatments but I would be interested in what they are ? Thanks

E3178 profile image
E3178

I had a lot of small injections of lidocaine in my back by a g.p. in Spain. More as an experiment for him and me at the time.It did work although my neck and mouth were numb for a couple of hours afterwards.

Unfortunately it didnt last long enough to have the pain of actually having it done.

This was about 10yrs ago. It may be done differently now.

Fificat50 profile image
Fificat50 in reply to E3178

Thank you

releasethemagic profile image
releasethemagic

I have the infusions at Leicester General Hospital and have been having them since 2007. I used to get 4 a year but then the management cut it to 3 and then to 2. During Covid they stopped them completely. The infusions enabled me to work full time but the cuts meant I had to retire and claim benefits that cost the state far more than the infusions did. I find the infusion lasts 3 months and reduces pain by 50% straightaway and then after about 10 weeks it suddenly increases and by 4 months has worn off completely. I find complaints to the NHS result in rapid offers of infusions so my advice to others, if you do not get offered your treatment, complain in writing and get your MP involved if you don’t get offered the treatment, your clinician says you need.

The NHS prefers giving people tablets as it keeps them away from hospitals and takes less staff time. An infusion costs the NHS £1,300. A box of Pregabalin is £10. Going private for an infusion, if you can find a hospital willing to do it, is £2,650 in Lincoln which was the cheapest I found and £4,350 was the highest price I was quoted. All the private hospitals willing to offer it were too far to travel and too costly.

Anita54 profile image
Anita54

Hi, I had this done for chronic pain, unfortunately it did not work, after that I also weaned myself off of Pregabalin, cut down on Co codamol and halved Amitriptyline by half to 50mg to see if they were actually working and it made no difference, so Iv been taking all this for nothing which is often the case with long term pain, I’ve been discharged many times by the Pain clinic as they are saying there is nothing else to offer me ☹️has anyone been given anything that does work ? Xx

Duffy2021 profile image
Duffy2021

Hi, I have had diagnosis of fibro for 3 years-have also got prolapsed discs in my neck and lower back and plantar fasciitis. I recently had my first lidocaine infusion. No problem with procedure, however no improvement so far. Had it 10 days ago, told to continue my regular medication of gabapentin, 300mg, 10mg baclofen, 30mg amitriptyline and paracetamol until my follow up which is in 4weeks.

Fificat50 profile image
Fificat50 in reply to Duffy2021

Thank you for your response and interesting to note that no improvement had been felt. Please feedback your overall conclusion once you had had your review.

HUMBERVIEW47 profile image
HUMBERVIEW47

This sounds interesting, as I am just starting on pregabalin and would rather have something like the lidocaine infusions, rather than the capsules. I'll see what my doctor says on my next visit. Thank you for this.

Fificat50 profile image
Fificat50 in reply to HUMBERVIEW47

Your doctor will probably keep you on the pregablin capsules. If the fusions work they could be effective for 3-6 months that is what I am hoping as want to stop taking pregablin.

Charliebear1234 profile image
Charliebear1234

Hi fificat yes iv had the infusion didn't work for me , everyones different tho try it you have nothing to loose xx

JayCeon profile image
JayCeon

I only had tiny quick injections in my back, like E3178, in conjunction with some of my acupuncture - neither worked for me. This is called Neuraltherapie in Germany, an alternative therapy, maybe comparable to LDN and other low dose therapies of otherwise pretty potent meds, in this case using procaine or lidocaine or similar.

This is something totally different to infusions, which have been used for chronic pain, incl. fibromyalgia: Kandil et al, 2017 ncbi.nlm.nih.gov/pmc/articl... fibromyalgia, according to a study from 2009 (Schafranski et al) also reported in this link, you get "IV lidocaine 2–5 mg/kg 2 h. Five sequential intravenous 2% lidocaine infusions with rising dosages (2–5 mg/kg, days 1–5)".

The study abstract also answers your question which arose from Des saying they are higher in the therapeutic ladder: They are called an alternative to opioids and typically used when these do not work. So that'd be pretty high up the ladder nowadays, unless that's now changed due to opioids being taken out more.

And the following links to a (albeit short-term) patient experience that contends Charliebear1234's comment that you have nothing to lose: painnewsnetwork.org/stories.... You can read other patient experiences on Pain Concern on health unlocked, e.g. healthunlocked.com/painconc... (in this case not successful).

Lidocaine is a local anaesthetic. Its side effects are enough, but more limited if injected in the periphery of the body, but injected i.v./infused it can affect i.e. do similar things to central parts of the body like the heart or brain. During and after the infusions you are monitored very closely - not necessarily comforting. Doesn't sound funny or easy at all to me...

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to JayCeon

On the ladder point and opioids I thing it is more a case they are still where they are but there are large quantities of grease on the rungs now. I.e they are still there but harder to get at

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