NEUROPATHIC PAIN, ALTERED SENSATIONS AND THE WEATHER!

Neuropathic pain and altered sensations were the first symptoms of MS that I experienced back in June/July 2002. I wasn't really one for going to the GP about anything and my initial reaction was that I just thought I had slept in a strange position but it continued for days.

It turned out they were the start of my MS journey and I can honestly say that those altered sensations and the neuropathic pain have been with me every day since. I haven't had a single day without feeling strange sensations/pain in my feet, legs, lower back, arms and hands. But you learn to find a way to live with them. You have to. Don't get me wrong, I have my days where the pain gets really bad or the sensations feel so strange that they affect what you can do, but you learn to take each day as it comes. 

I have Relapsing Remitting MS (RRMS) and for some people this means that they will have a relapse and when it is over they go back to "normal" and are able to function without any, or very few, issues. Unfortunately, in my case, my pain and altered sensations have never left me. There will be days and times that are worse than others but it is always there.

 

Over the years I have tried many different medications, some that are better than others but I've always given things a try, because what have I got to lose? 

One of the things that was suggested to me by my pain consultant was a Lidocaine infusion. Now lidocaine is a local anaesthetic and so therefore can be used as a nerve block - do I sound like I know what I'm talking about.....it's all an act really! 

I am currently waiting for my lidocaine infusion, which helps me with the painful sensations I feel all over my skin. I have been having these infusions for a few years and I find them very helpful. It's not a miracle cure and it doesn't get rid of the pain but it just helps make things a little more manageable.

The problem that I'm experiencing at the moment is that the hospital has changed the routine. They were giving the infusions around every eight weeks. I would find that after about six weeks, the pain would start to increase and by the time the eight weeks was up, I would be more than ready for the infusion.

Now though they have moved us all to every twelve weeks, which means between weeks eight and twelve, my pain can get much worse. I believe the reason it has been changed is because there is not enough space or nurses to cope with the demand. This is incredibly frustrating because when you're given something that gives you even just a little relief, it is so important to keep it going. 

So my problem at the moment is that it has been ten and a half weeks since my last infusion and I am struggling. I have had my appointment for my lidocaine infusion, 11th December, and it will be exactly twelve weeks since my last one. My GP has written to my pain consultant to see if I can go back to eight weeks and I am currently waiting for an appointment to see him. 

Things haven't been helped by the weather turning so cold, my body cannot tolerate either being very hot or very cold, it's incredibly frustrating! In the summer, when there's beautiful weather, my body goes haywire and I need to keep myself cool, unfortunately there are only so many clothes you can take off! But in the colder months, especially when we get the bitter temperatures, my body can't handle that either. My pain increases and I get incredibly uncomfortable.

So of course now the weather has changed, the temperature has dropped significantly, so my pain has gone up another notch. I am desperately counting down the days until I have my lidocaine infusion.

 

On top of that my left leg is doing a dance of its own while it spasms every few seconds. I take a medication called Baclofen which has always helped with my spasms and in general I'm not really affected by them but, at the moment, I am finding that the spasms are happening in the afternoon, especially as it gets colder, and that is really annoying. My leg will suddenly try to kick out, involuntarily, and I have no control over it. I am taking extra Baclofen when this happens as it is the only thing that calms it down. 

When this leg spasm happens, I am finding it more exhausting too, because it is quite physical, even though I am just sat down. It's quite disconcerting!  

I have got a week before I have my lidocaine infusion and it's going to be a long week! I have plenty of distractions though, a certain fluffy girl keeps us very entertained! 😹 

Please keep warm out there. 

Sending love and Rosie cuddles 

XxXxX 💕