Lidocaine Infusion to help neuropathic pain!

One of the hardest symptoms I have and the most difficult for me to manage is pain.......specifically neuropathic pain. I have had neuropathic pain since I first started to get my MS symptoms back in 2002.....14 years ago, wow that's scary!

Like all MS symptoms, not everyone has every symptom. I know a lot of people who don't experience any pain as a result of their MS......It all depends which areas the lesions are on your brain and spine. 

Before I had my first MS symptoms and consequently got my diagnosis, I never really went to the doctor about anything. I'm not embarrassed to say that I was always a bit scared of doctors, especially GP's! I don't really know why but I know I didn't like going to see them if I could possibly help it and it's probably why, when my symptoms first started, I left it a few days before even going to my GP, I was sure that, if I ignored it it would just go away.....wouldn't it? Ummm no! ;-) 

I am certainly not afraid of GP's, consultants, nurses, none of the medical profession now, in fact, I have been and continue to be looked after amazingly well! When you are dealing with a chronic illness or illnesses, you become the best expert of whatever condition or conditions you are dealing with. Martin and I have a wonderful relationship with our GP and my consultants across all my illnesses and my GP has said to me more than once that I probably know more about MS than she does now! 

We have actually stayed with them all even though we've moved a little further away. They are all such an integral part of my support system and I couldn't bare leaving any of them at the moment! They have all been with me across all my diagnosis' and they all know me.....really well!  

We are able to stay with our surgery, even though we now live out of the area, because they do allow it but each surgery is different. You must ask them first if it is ok....our surgery allows out of the area patients but you can't ask for a home visit. I haven't actually ever needed a home visit.....so far.....but if I did have any type of emergency I would just go to the nearest A&E! 

Now, on to the Lidocaine infusion!

I have a great pain consultant who last year suggested to me to try something called a Lidocaine infusion. Now, my understanding of it is that it is what is used for giving anaesthetic and because of that it helps to deaden the pain......it doesn't get rid of it completely but I get about four to six weeks where the pain is taken down a couple of notches and I'll take that! He told me that he'd been getting good results with it and he thought it was worth a try.

Pain is a very difficult symptom to deal with, I remember when my symptoms first started and I had no idea what was going on, I used to think it was all in my head! It is a symptom that drives me crazy and over the years I have thought, a lot, about how best to describe it to help people understand what it is that I'm feeling. It is one of those symptoms that no one can see and so it all goes on what I am saying and I hate that......what I feel may be very different to how someone else feels it.....what if I'm making more of it than I should be? 

Of course that is ridiculous though because whatever I am feeling, if it is affecting me then it matters. It's taken me many years to be able to think like this though and many hours of discussions with a Neuropsychologist.......he would be very proud of me now though!! 😜  

Just to give you some idea of what my painful sensations are like, here are some examples of what they feel like to me.

I get a sensation in my toes that feels like when you've been out in the freezing cold and you go back inside and your toes start to warm up but as they do they get a burning sensation through them. Unfortunately I can get this sensation without even going outside! 🙁

I get a sensation in my lower back which feels like someone is stabbing me with lots of tiny pins or like someone has taken a small razor blade and is making lots of tiny cuts in my skin.........I also get this sensation in my feet and hands.

I also, very often, get a horrible sensation in my fingertips and they feel painfully numb. This always confuses me, how can something be painful if it is numb, surely if it's numb you can't feel it, but with neuropathic pain that's how it works.

So my pain consultant arranged for me to have my first infusion and I had it last year. 

I was given a pain diary to keep a record of my symptoms to show how and if they varied over a three month period. I then sent it back to the pain management department and my consultant decides if it's been any benefit and whether it's worth having it again. I was blown away by the fact that according to my results, I had experienced about four to six weeks of a lesser amount of pain. It doesn't get rid of it and I still have bad days but on the whole, the infusion had definitely been worth it so I was booked in to have it again! 

The second infusion was booked in for just before Christmas last year......I was actually delighted because it meant I would possibly have a bit of relief over Christmas.....and I did! Unfortunately as I was coming to the end of that infusion I came out in a bright red rash.....I was given a big dose of antihistamine and it went away so I was able to go home but my consultant was concerned that it had been an allergic reaction to the lidocaine. He was then unwilling to let me have any more infusions until I had been tested to see if I was allergic or not. Obviously all this took time but I had a challenge test done, which is where I was injected four times, once with just saline solution, the second was a Lidocaine mixture of 1 in 100, the third was 1 in 10 and the fourth was purely Lidocaine.......happily I am not allergic to Lidocaine! 

I was actually fairly sure I wouldn't be because, after speaking to my MS nurse, I had found out that a rash, can be, a side effect of the new disease modifying drug I had started last year - Tecfidera! It is a strange rash, it's almost like a heat rash and it comes up on my left forearm, the upper part of my right arm and all across the top of my shoulders. It is prickly like a heat rash and can come up bright red too......but at least I know I am definitely not allergic to lidocaine!  

Unfortunately, because of all that, I had missed my slot of having my third infusion because they wouldn't let me have it until they knew for definite that I wasn't allergic to it.......I totally understood why they had to do it and even though I had a proper explanation for the rash, they would not allow me to have another infusion until they knew for sure. But in the meantime my pain was escalating quite severely. 

I had an appointment to go to the hospital, to the Day surgery unit, which is where they do the infusion so I put two and two together but came up with five because when I got there I was told I was having a pre assessment for having my collar button fitted in my ear......this is to help the vertigo I get from having Ménière's Disease! But that wasn't so much the problem, what really upset me was the fact that I was being told it would be September, at the earliest, before I would get this treatment....I was devastated!! 

Now, as I have said, I generally do not go to my GP unless I really need some help.....or I'm really desperate.....at this stage.......I was really desperate! The idea of having to wait about four more months before having treatment that I knew was likely to help, I couldn't imagine how I was going to get through that wait so I went to my GP who was brilliant and she phoned the hospital straight away to try and speak to my pain consultant.......to my amazement she got right through to him! She explained that I was in a lot of distress and asked if there was any chance of getting the infusion done quicker but he explained to her that as this is a relatively new treatment he is only allocated two 2 hour slots a week, by the hospital, to administer the treatment, which means only two patients a week get it but because the treatment is becoming fairly successful, the more patients that have it, the longer the list gets for repeat treatments and that is why I am having to wait so long for my slot. He did say that he would try and look into it and see if he could get me in any sooner but in the meantime I just had to wait! My doctor did increase one of my pain meds, PreGabalin. I was on 150mg twice a day but the maximum dose is actually 300mg twice a day so I was able to increase that and I got to the dose that I am now on which is 250mg twice a day. It helped a small amount but ultimately what I needed was the infusion! 

That phone call must have helped because a couple of weeks later I got an appointment through......I was going to have the infusion on 8th August. It was still about three weeks away but it was better than September! 

It is so frustrating though because I knew there was a treatment that would lessen the pain I was in, so naturally, I just wanted to have that treatment as soon as possible but I was having to wait and it is so hard to explain how unbearable that waiting is. You have to live your life and get through each day because what other alternative is there but the pain just eats away at you. I am one of the lucky ones because I have Martin and he helps me through every day, every hour, every minute and without him I'm not sure that I could cope with it. It sounds like I am being a bit over dramatic.......I'm not, I'm just being honest. 

Anyway, the 8th August finally came round and I have had the infusion and finally my pain has started to lessen slightly. It's not a miracle cure and it will only last for four to six weeks but I will take that over nothing at all! When I had my infusion, it was given to me by some nurses though rather than my consultant because they are setting up the nurses as an extra service to enable the treatment to get to the patients slightly quicker........It effectively means that the waiting will be down to eight weeks in between treatments rather than twelve weeks.......that was music to my ears.......I'll take that! 😋

Hugs to all

XxXxX