I had a Lidocaine Infusion today for SF PN
 

Hi Everyone
I have spent the day in hospital in the company of a pain nurse while I had a Lidocaine infusion for approx 6hrs, it was the starngest feeling and by the end I was totally pain free - I have to continue with my usual meds for a few weeks until it settles down.
Tonight my pain level is sitting around 1-2 whilst last night it was a raging 8 - spent the day in bed reading a book and it was wonderful.
I will keep you posted on my progress - the consultant said I will have this procedure every 6-8 weeks if it is successful fingers crossed
Arlene:D

Day 2
Feeling spaced out and tired. My core pain on the inside of my feet has gone but I now have tenderness on the surface of the skin, this is bearable although it feels either very warm or very cold- have spent the day with my feet in a cold water bath or putting thermal socks on.
All in all so far so good

Thanks for the updates. I hope it continues to work for you.

It works for some and not others. Keep positive and that will help too.

Yes, this is interesting and I look to it as an option. I hope it works for you.

Did you have pain or discomfort during the infusion? What did it feel like?

Mere

Thanks Mrs D

I didnt have any discomfort during this procedure, my BP went high and my lips went numb once it had been turned up, so the nurse turned it back down again. I felt lightheaded and sleepy for a time and then rallied back again and by this time my pain had disappeared completely(painfree for the first time in years).
Mere why dont you wait a few weeks and see how my experience is and maybe others will share their experience also - the jury is still out for me but the nurse says it sometimes takes a few days to kick in.

Day 3
Today I slept late and had intended to do lots of chores around the house but this didnt happen as I felt listless.
My core pain is still gone but I am still being bothered with pain on my skin - it is still alternating between hot and cold but I can live with this.
Looking forward to having more energy tomorrow.:)

Day 4

A much better day today, my energy levels are returning and I got through lots of chores. I went to get my BP checked and it is still a little high - 156/90 - Mrs D is this due to the infusion to you think?, my BP has always been great. I have to go back to get it checked next week.
My pain levels are very low and my feet havent been burning or freezing at all, just some tingly pins and needles on the skin surface - can live with that:winky:
Still taking all my pain meds but am not clock watching now - I was one hour late in taking them this afternoon which has never been known.
Best wishes to everyone.
Arlene

Lidocaine can cause both lower or higher BP...I've see "labile" listed for it, meaning rapidly changing.

Hard to pin it down to specifics.

Sometimes it is just the stress of going to the doctor, etc.

Try to avoid salt and salty foods, and MSG, while you recover from this infusion. That may help.

Day 5
Pain levels are still down, slept this afternoon although I didnt intend to - wont post now if the pain stays this level and will let you all know when this starts to wear off(hopefully ages yet).
Back to work on Monday:(

One Week On

Realised that I had slept with my feet in the bed under the covers for the first time in around 5 years last night - brilliant - I usually have them overheating and sticking at a right angle out the bed.
Just thought I would share this wee bit o progress with you all lol;)

Hope you are all well
Arlene

Three Weeks Later.......
 

It is now week three and I can confidently say this procedure has been a success, although I still have some pain it is as though my condition has went back to the same pain levels as two years ago - the parts of my feet which have been in pain the longest are still painful but the 'new' pain has gone.
I am sleeping normally and as a result am feeling normal and alert - I have got my life back(going shopping/out for meals/to the beach etc) and am hoping this will contine.
My dream is that this condition will just disappear if I have more of these infusions - but I have always been known as the Eternal Optimist lol.:D

WOW?! The buzzes have been turned off?
 

Brave person for trying? More brave to tell us how it's working!
My hope and prayer for you now is that THE Pain IS turned OFF!
Besides, who'da thunk? Smart person for thinkng outside the BOXES! Smart doc too? Maybe.
ANY hope of relief is far better than no or little hope at all.
Hugs and keep us updated! I am like a kid with a toy advertised on TV! I WANNA...WANNA...etc.
Tell us if it continues to work, that is key and don't be ashamed or afraid if it doesn't... Since I've not read about this type of therapy? I'm not coming across anything for or against. I'd like a LOT of FOR's!
:hug::hug::hug:!!!!!!!!!!!!!!!!!'s - j

Thanks Dahlek - I know what you mean about I wanna I wanna I wanna - we will try anything if it is going to help.

A quick update while I am on.......
I spoke with the Pain Nurse yesterday and she is delighted with my progress and is going to be seeing the consultant today to arrange my next infusion(sounds exotic like a spa day dont you think lol)
I had my blood pressure checked and it has went back to normal thank goodness, I didnt want to be caught for that too.
My pain levels are starting to increase ever so slightly but hey ho they are nothing to what they were and my spa day will be in the next few weeks:p
Best wishes to all

Great news for you malawigirl08. Hope your relief continues.

From your reports? Yep! I WANNA!
 

Almost big time! But there are always consequences and what I call 'pay-backs' somewhere down the line.... I think I go and see what medical papers have to say. Nudge me hard If I don't! Please!
I mean truly, IF I could get only FOUR hours a week PAIN free? I could do all the things I need to do besides medical appointments! And,....I've a lot that needs doing!
Hugs and soo much HOPE and appreciation for your bravery! You are one of my heroes for this week! :hug::hug::hug:'s - j

Ohhh I spoke too soon, this infusion is wearing off big time - I am now into week 4 and have been feeling so normal that I arranged a day out for my 2 children and their friend to the seaside - I drove for two hours, stopping to pick strawberries on the way, then I visited my mums static caravan and gave it a good clean(as you do). The children then wanted to go shopping followed by me making lunch and another 20min drive to a local beach for surfing - we stayed there around 2hrs with me paddling in the water(and couldnt feel the cold North Sea lol).
We then drove 20mins back to the other town and the children went swimming in a pool before buying fish n chips and eating them on the beach bliss.....
Then I had to drive home for 2 hrs - hubby thought I was mad(he was at work) - we had 12hrs of fun but boy have I paid for this my pain is back with a vengence and I am hoping it will just be a temporary blip
Seeing my Neurologist for the first time in 18months tomorrow so we shall see what she has to say.::rolleyes:
Hope you are all well and happy thanksgiving to the Americans:)

It sounds like you had a wonderful day. Hopefully the return of your pain is only temporary. Take care

Quick update
 

I am scheduled to have these Lidocaine Infusions every 4 weeks and we will see what happens - only problem is that I cant start these until mid-August due to Holidays/availability of beds.

I visited the Neurologist on Monday and she is now thinking my SFN is due to a knee dislocation 10years ago! - is this likely do you think?

I think it's a stretch--
 

--no pun intended--for a small fiber syndrome to be linked to a knee dislocation, especially if you have symptoms in other parts of the body than the knee and leg/foot below it. Small-fiber syndromes typically stem from something more systemic, and a knee dislocation would likely result more in compression effects on specific nerves--a monoeuorpathy or multiple mononeuropathy, andmore likely of larger, myelinated nerves.

There is the possibility of some form of complex regional pain syndrome/reflex sympathetic dystrophy post tauma, though; do you have any trophic/temperature changes/discoloration in that limb that does not affect other limbs?

I will have to check references, am afraid I will totally forget to do so if I don't mention this now... I have read, over the years, that these systemic infusions deplete COQ10 from the body, much like the statin drugs. Has anyone else read this... and if so, is it possible to simply supplement with COQ10 to make up for any depletion, if COQ10 depletion occurs?

I truly hope this conitnues to work well for you! :D
~DejaVu

I have never heard of this... It is not in the reference I use, and I could not find any reported studies on PubMed.

I would be interested if you could find the source(s) for this depletion.

Question on COQ10 and Systemic Lidocaine - Still Checking
 

Hi MrsD,
I will keep looking for any reference and will comment either way.
I have had this conversation, repeatedly, with some MDs, with some other people..and have also read this...yet the reading part was long ago...this is why I had posed this as a question. I will continue to look for any related info. Will definitely let you know if I find anything!
Thank you for also looking on this!:)
My Best,
~DejaVu

Thanks to both of you for your input with this, I will certainly ask at the hospital if this is a problem and take the necessary supplements - DejaVu have you had this treatment or know of other who have had some success?:)

There are some posters on the RSD forum here who have regular Lidocaine infusions. If you post over there they will see you.
I don't think they read PN at all.

Hi Malawigirl08!

I have not know anyone, personally, having had an infusion.
I hope this works well for you, with long-lasting great effects and no issues at all! Wouldn't that be great!:D
In retrospect, I should have found the reference(s) on the question about the lidocaine and the COQ10 prior to posting a question on it. I was talking with some friends and they, too , had recalled reading this. Since I could not find the references, I thought I'd ask. It feels backwards to post about it first; yet, I also thought maybe MrsD had seen this concern before.
I am still looking for the reference(s). If they cannot be found, I guess it is not an issue of concern.

My very best to you!:)
~DejaVu

Just a quick update
 

I thought i would update you all on this treatment, as you will have read I had a blissful 3.5 weeks back in June before the pain returned so my consultant wrote a script for me to have this treatment every 4 weeks and in good old NHS fashion I am still waiting....... Firstly I was told summer holidays meant I couldnt get the treatment and then they booked me in mid-August but that was cancelled and the reason given was the hospital has run out of the drug(aye right!) I decided to plague them with phone calls and the truth is the long infusion has been banned in the UK so rather than run it for a shorter time the consultant is just not doing this treatment......I always knew this 'cure' was too good to be true.
This morning when I called I was told they could offer a 90min infusion instead as this was still ok - but I would need to go to another consultant and would I mind this??? - I was very polite in telling this woman that this was a form of torture to give hope and pain relief and then snatch it away so of course I would have the infusion from any person at any time of the day or night(I dont sleep anyway with the pain so it doesnt matter).
The only drawback - THEY CANT FIT ME IN UNTIL END OF SEPTEMBER - what do I pay my taxes for -any way sorry for sounding off but I just need people who understand my situation GRRRRRRR - NHS!!!!!!

Just to update everyone, I had my second infusion last week, although this was a shortened dose,90mins instead of 6hrs.
Day 1 I was pain free and floaty and day 2,3 and4 I had a lot of discomfort from surface skin pain- my deep bone pain had disappeared.
Over the weekend my pain has been considerably less, I am going to try putting shoes on today-I have worn sandals all summer but now look rediculous as the weather has turned cold.
Best wishes to all:grouphug:

Hello,
Do you take this like an IV and do you know what the mixture is composed of. I have lidocaine creme and thought of using it in a enema mixture just to see about what kind of results. Thanks for your post concrning this type of treatment. I've had 2 surgeries and was put under and always felt pain free for about 24 hours afterwards. I was told never to have a spinal block done due to my PN.

Please don't self medicate with lidocaine, in enema form. Things given by enema can kill you quickly. There was just a guy who died from a sherry wine enema! Most of the few magnesium deaths yearly come from enemas, and not oral forms.

You could set your heart off... that way. Lidocaine changes heart rhythm. When done in an infusion, the rate administered is carefully done/minute, and doses carefully calculated. Even then infusions are monitored carefully because of heart effects.

This is why Lidoderm patches have a 12 hr off time for administration. Lidocaine is a sodium channel blocker, and many important nerves run on sodium channels.

I second what Mrs D said, I have this IV and there is a nurse monitoring your BP and heart rate every 5mins.
During my first infusion the nurse turned the dosage up and I went spacy and my lips were tingling, only try this under medical supervision.
Good luck

A quick update- my second infusion hasn't been nearly as successful as the first, but it was only 25% of the dosage of the first one.
Has anyone on our PN site had this treatment and what dosage is best?
I will also post on RSD site as there are some there who have success with this treatment.

There is one poster there still doing the Lidocaine. I just can't recall her name now. Sorry. Put Lidocaine into the search at the upper right of the main index page at RSD and it will come up.
Then you can PM her for details etc.;)

sorry for the intrusion
 

But I have been gone for some time and this is the post where I saw that Sheba Has passed. I have a friend who I gave a kitten to him and his daughter. At his wife's suneral he said words to this meaning - I had given him the best years of enjoyment in his life. I had to smile as I knew what he meant and no one else would have and I hope if they heard, they listened to the reason, for sure.

He had wanted to keep his beloved cat alive as long as a friend of his had. I believe it was 17 years. I have to see if he will ever get another one and tell him the bar is set higher. n The to,e was pretty close.

He had to have the cat put to sleep as his wife was dying with cancer. A truly lovely couple.

I have said no more animal after my last pet dies but if I could interest that man inmto gettinmg another cat, I'd sure give it another try myself. I believe he did try one amd it attacked him so perhaps it may be impossibe. Sorry for the interruption.