anyone had a lidocaine infusion ?

[joed]

hi ive had firo and several other things for over 10 years tried every med in the book also patches at present im on duloxatine,zapain and perskindol gel but the pain is constant all day every day in my thighs knees and hips it never lets up im going for a lidocaine infusion on the 9th june but im apprehensive as it only has a 20% chance of working was wondering if anyone out there had had this done and if so did it woork for them thanks joanne x

[TheAuthor]

Hi joed

I sincerely hope that you are feeling as well as you possibly can be today? I have never had this undertaken. However, I have pasted you the NHS Choices link that tells you about it:

nhs.uk/medicine-guides/page...

I want to wish you all the best of luck with this.

All my hopes and dreams for you

Ken x

[Shazzzy in reply to TheAuthor]

Hi Ken , lidocaine infusions are different to this link, they are for nerve pain and are injected or used in a drip as a longer term solution to pain, a bit like botox. Have not tried this myself but I am sure I will at some point!

[TheAuthor in reply to Shazzzy]

Hi Shazzzy

Thank you so much for that, I did not realise that it was something different? As I have not had anything like this when I read it I presumed it was the correct link? So thank you.

I hope that you are feeling as well as you possibly can be today?

Take care

Ken x

[mimiwen]

Hi joanne,

I have lidocaine infusions every 4 months. They vary a lot from person to person. I've met other patients at the hospital who find them very helpful.

They do help me a bit but not dramatically. The worse thing about them is they give me terrible headaches for about 3 days after each infusion. I suffer from bad migraine and hypnic headache anyway and I do find this a problem. Once the headache has cleared up, I feel about 20-30% better for 3 or 4 weeks.

My advice is to try it - definitely worth trying. I do hope it really helps you.

Mim x

[mitziblue]

I tried the nerve blocker, not sure if iy's the same thing. It didn't help me. I'm on Opana ER and now my life is bearable. Hope this helps. xxx Mitzi

[Hidden]

I used to have Lidnocaine Infusions every 6 months, then we used to have 6 days of infusions the drip used to last for about 8 hours, when I had my 1st one about 2 months later they kicked in & I felt like the bionic woman

compared to what I had done, after that they were more hit & miss & after getting angina & with heart problems running in my family I began to wonder if the risk which had obviously been clearly explained were worth it? I carried on about another 3 times then said I would miss the next one to see if the pain was effected as didn't feel the infusions were working and eventually I decided to stop them. The hospital no longer do the week long infusions & I did go for a 3 hour infusion for my shoulder pain but sadly had no relief.

I always think when you get desperate with the pain anything new is worth a try after carefully concidering any side effects etc. Hope if you decide to go for them you get some relief, I used to always get more pain while I was having them done then used to get relief with varying degrees afterwards good luck Karen xx

[joed in reply to Hidden]

hi thanks for your reply im down to have my first infusion june 9th at this stage im in violent pain evrey day so im prepared to try anythinik the infsion is done in day surgery and takes 45 minuted though a canulor in your hand fingers crossed it gives me some relief take care joanne x

[Mdaisy]

Hello Joed,

Please see the information on our website about Lidocaine infusions;

fibroaction.org/Pages/Injec...

I hope this helps

Emma

FibroAction Administrator

[joed in reply to Mdaisy]

mdaisy thankyou for this link joanne x

[Piggysqueak]

Hello joed just read your post from 25 days ago !! I only joined a few days ago but I had my lignocaine infusion on 10th June so really interested in how your getting on ! I was told to take it easy for 48 hours and some days I felt good ish but other no change except at night my ankle feet knees hurt and burn . It's early days yet the said it could take up to 10 days to show any effect. So just wondered how you are ? I hope you don't mind me asking? best wishes

[joed in reply to Piggysqueak]

hi i had my infusion on the 9th june i have had no inprovement at all the pain is more severe if anythink i was told if it hadnt worked within 2/3 days then it probably wouldnt im feeling so low right now my family dont understand and i am struggling with daily life but no one seems to care i get no help from them i could just run away right now sick of violent pain and family arguements my legs have been burning today also where is your pain mine in in hip groin thigh and knees it makes me cry all the time im seeing my gp on thursday see what he says nice to hear from you sorry if i appear to be feeling sorry for myself but i do today and dispise my family for no help or understanding yake care of yourself would love to hear from you soon joanne x

[Piggysqueak in reply to joed]

Oh Joanne I'm sorry you in such pain and feel so low. My pain usually in knees ankles but recently well last 6 months it's always in my arms shoulders elbows hands and now neck . I have days often weeks when I could scream. Please tell your Gp everything even about how your feeling. I think the infusion is helping a bit in my knees find sitting on low loo bit less painful at mo lol hope it helps us both more v v soon take care Sally x (piggysqueak) ps let me know how u get on at gp if you want to that is x

[Piggysqueak in reply to joed]

Hi Joanne , only me squeak ( my nickname is squeak because I don't talk a lot ( not) and my brother and husband use to say things like can u hear something ! Oh it squeaking again ! When I was talking so I'm squeak to everyone now and it sometimes extends to Piggysqueak but it's sally to my mum and squeak to my friends and rest of the family. ) no idea why I told you that except to make you smile

Just wondering how your getting on ? How is your pain ? And if I remember correctly your at the GP's today so good luck and please tell the GP everything !!!! I have to write it all down as I forget cause there is usually so much LOL. !!

It's day 10 for me tomorrow which is when they said was how long it could take to work ! It's definitely helping but with everything it's never simple there are good and not so good bits . Up until yesterday I could not stop crying no real reason just feeling sorry for myself. Then yesterday and today I felt like the black cloud had lifted I seemed more my old self . Pain has improved almost everywhere except if the area is touched like someone squeezing my shoulder I thought I was going to pass out from pain ! Then your told not to be mardy "I did n't press hard " I can't repeat my thoughts far to rude but would go something like

BLEEP BLEEP BLEEP BLEEPING BLEEEEEEEP ETC !!!!!

My hands are swollen and sore and my feet and ankles are good in the day . But for instance last night my feet & ankles kept me awake until 2am the burning throbbing pain was awful and ankles and feet swollen. I woke at 4am with pain and the pain stopped me going back to sleep. There not bad at all now they feel like someone else's feet ankles ! I have been sleeping better except for last night which is great . I think in generally it 70% better 30% worst in favour of lignocaine for me so far .

Please let me know how it's going for you and I honestly just wanted to wish you luck and let you know I am thinking about you and hoping your starting to get some benefit from the lignocaine

Looks like Squeak has struck again and gone on & on once again

Anyway reply if you feel like it when you feel like it if you feel like it

Thinking of u

Squeak xx

[joed in reply to Piggysqueak]

hi squeak thankyou for your reply hope you are feeling as good as can be today i : have been to the docters twice this week on tuesday i had to go to give gp info as he has received a form to fill out with regards my pip claim.

i went again today to see my usual gp unfortunatly the lidocaine infusion didnt work for me i basically lead the consultaion today as ifeel im not getting very far and feel like i can no longer live in such severe pain everyday its staring to efffect my mental state of health im fed up of family fallouts my life is the pits right now.

i had done lots of researcg before i went today gp was in a dialema as i seem to have had every med available, im going away in 12 days time to turkey so said to gp i need something to take pain awy abit so i asked about morphine he has perscribed me oramorph tonight is day 1 wish me luck,also i read that alot of people get referred to a physio as they have more ideas so he is doing me a referral should get app end of july i have it in my head what i have is more than fibro im covinced i have bone cancer and i am dying also im going to have tests as they think i may have coeliac desaese to add to ;arthritis in both knees,me/fibro ,ibs,hyermobility,depression etc etc ,sorrry to waffle but its good to offload im glad that its working abit for and fingers crossed it will continue il leave you in peace now take care chat soon joanne x

[Piggysqueak]

Hi Joanne I hope oramorph helps fingers crossed I'm On a morphine drug OxyContin which is like a slow release 12hrly this is prescribed for another terrible constant painful condition which cause v severe abdominal pain back pain and lots of internal probs related to pancreas and now liver and I had this disease first sorry I digress , I also take a tablet which is similar to oramorph but a tablet and double strength called Oxynorm. I was scared when I first took it like I'm sure you may feel but you get to a point where u have no choice and I think your there honey ! ( only u know) ! I really hope it helps you and you can get good night sleep as well . Take care squeak xx ps oh yes I find when I take my Oxynorm I also take paracetamol 1g to maximise the effect I thought how odd at first but it did help me xx