Dystonia?

**Warning if you hate feet, photo’s of feet this post is not for you”

I have had painful spasms in my feet for as long as I can remember, for a long time I have just assumed that it is part of the Ehlers Danlos Syndrome I have and just put it down to that but I have always felt it was odd that it was only really my feet that were effected. EDS is a connective tissue disorder and connective tissue is everywhere throughout the body, so in reality more parts of me should be going into spasm than just my feet alone. After a particularly bad week with it back in late February / early  March ( before the world went mad ) I ended up consulting Doctor Google to see if there was an alternative explanation (differential diagnosis ) for what was happening, low and behold there was Focal Dystonia.

When I worked out what the issue was it was clear that the UK would soon be heading for lock-down and I didn’t want to be in or around a health care setting for anything that wasn’t urgent and when I say urgent I mean life or death. So I decided that when the madness had passed I would seek medical help but this evening ( I’m talking about Tuesday in Wednesday ) I have been in so much pain with the muscle spasms / contractions I am kicking myself that I didn’t do anything about it. Not that there is a cure but I may have had better medications here to cope with or stop the contractions. When it is as bad as this the pain is no longer just in my feet but travels up my calves along the ligaments and tendons. I can feel the spasms moving along them until it hits my feet and then a wave of pain starts as my toes begin to distort themselves, in rather bizarre ways. I have no control over it at all. I can grab my toes, massage my feet but the minute I let go they once again return to their painful contractions. Often whilst I am attempting to force them out of their distortion I can feel the pain building up again which means another spasm is on its way.

There is no stopping it as the minute I let go my toes move without any conscious effort from me. On a bad night, it is almost always a night I get this, although when I have a very bad night during the day I can feel less powerful spasms on and off all day like I have today, nothing will stop the spasm. Massage will only provide a very short period of relief often just seconds. The only thing I can do is ride it out, apply heat and hope that it eventually goes away.

I have found it very difficult to capture images of my feet as the spasms can be very subtle. Unless you know what you are looking for it can be difficult to see why I am in so much pain. The spasms are always focused around my toes but the pain is felt throughout my feet. On occasion you can see the tension in the skin on my foot as my toes are trying to move in two separate directions. Almost always my big toe and the toe next to it want to go one way whilst everything else goes in a different direction. Spasms have been so strong in the past they have dislocated my big toe ( agony). I have raised this with doctors before who just look at me as if I am a sandwich short of a picnic. Where as now after checking it out on line there is a very real possible cause for what has been happening. I managed to take some photos this evening – my feet are swollen due to the amount of salt tablets I have to take and the toe nail on my big toe is a mess due to having the sides removed over ten years ago due to recurrent ingrowing toenails so my apologies. But without the photos you may not “get” it.

On this photo my big toe is pulling out and down, at the start of a spasm.

 

Just a few seconds later my big toe and the one next to it are twisting and pulling forward whilst the remaining three toes are curling toward the sole of my foot.

In this photo taken a few seconds on again you can see the big toe and the one next to it looks like I am flexing it forward and curling the other toes back. 

As I said it is hard to capture especially as it mainly only shows in my toes and make not look that strange to other people but the pain it produces is off the chart.

I managed to get this short video

The gasping noise is me due to the pain the movements are causing me. This was taken at around 9pm last night and it is now coming up to 2am and my feet are both throbbing still from the pain this 30 minute episode caused me. The pain and weird feeling I get afterwards extends all the way up to both knees. It is always my left foot that is affected the worst and whilst this was happening my right foot was joining in to a lesser extent.

I ended up having to take some pain relief and applying a heat pad to relax the muscles and to stop the contractions. Once an attack is underway I have to be very careful how I move my feet for several hours afterwards as it will trigger another round of spasms. Although to be honest it doesn’t matter how I move if they want to spasm they will I have zero control over them.

I have noticed it gets worse if I am tired / stressed / unwell ( more than normal). I have been pushing myself too hard lately and need to drop down a gear, which will be hard for me to do as I feel guilty when I don’t get all my jobs done.

People have suggested that it is low B12 levels that are to blame for this but as I self inject on a regular basis due to my deficiency being under treated on the NHS I really don’t think that is the case. Plus I have some many neurological things going on that I really wouldn’t be surprised if it is all part of some yet unexplained genetic syndrome that I have.

So for the moment I will just try to capture as many images as possible showing the distortions / muscle contractions so that when the situation with Covid-19 resolves or just things go back to a new normal I can show the doctors who treat me.

Birthday Girl – what a pain in the neck

Well I turn 45 today! Yes 1st November and it’s the exact day of the week that I was born. Which is bizarre! And something stranger it’s Mr Myasthenia Kids birthday tomorrow. So we have two days of celebrations, eating things we shouldn’t and having a few glasses of pop.

This week has been odd as I started getting pins and needles really badly in my wrists, hands, fingers, legs and face. It’s so bad on my left wrist that I just can’t wear a watch because this seems to irritate the nerve. Annoying as I love my watch. Jay bought it for my 41st birthday and I really do love it. 

Initially I scared myself stupid by consulting Dr Google, what came up was a mixture of M.S and anxiety. Yes I am stressed but I was anxious or hyperventilating. So that left M.S but having calmed down a little I actually think the problem is stemming from my neck. I have lost the curve in my neck – to be honest I don’t think I have ever had one. A chiropractor I consulted due to back problems when I was around 16 took x-rays of my neck and said he had never seen such a straight neck. He said it was swan like. Me being vain took that as a compliment, not realising that a straight neck is a major problem and will provide you with no end of painful problems, which I have suffered with on and off since the age of 16 when I pulled a roll cage onto the shop floor at work that was way too heavy for me. I felt compelled to do it as the checkout manager ( a real nasty piece of work and a bully) stood shouting at me until I moved it. Excuse the language but my neck has been fucked up ever since.

It didn’t help that two years later my car broke down whilst I was driving in the pissing down rain, my dad ever the bloody gentleman made me get out and push it whilst he steered it into a safer location. With the road being wet I slipped and managed to sprain my neck. It was absolutely superb timing literally days before my A-level exams took place ( the exams we need to take in England and Wales to get into University, in Scotland they take Highers). I ended up having to sit through 3 hour exams with a neck brace on high as a kite on painkillers. I was given a desk at the back of the room so that I could get up and move around if I needed to. I never did, it was embarrassing enough that I had to wear a neck brace let alone draw attention to myself by moving around in a silent exam room.

A few years later and I am university and guess what? Yep my neck is causing me an enormous amount of pain. I was diagnosed with “student neck” probably now known as Text neck. Its caused by looking down and in my case reading mountains of set texts, these days it’s caused by looking down at a mobile phone (cell phone) or a computer screen. I paid out a load of money to have my neck manipulated to ease the pain.

And that is how life was for years, the last really bad period with my neck was back in 2000 around a month after our wedding and possibly a few years after that. I know I have had to attend work on quite a few occasions wearing a soft collar.

In 2016 I had an MRI to see if they could “see” my CSF leak. On the radiographers report it stated I had reversed cervical lordosis – what this means is that it now bend in my neck is bending the wrong way This link has a great x-ray image that shows a neck with the bend going the wrong way – here . 

The problem is the neck is probably the worst designed  load bearing  area of the body. The head weighs up to around 10lbs so the vertebrae, muscles and ligaments have to spend every waking hour keeping a bowling ball up against the force of gravity. Also the neck contains the spinal cord and at the very base of the skull your brainstem is encased. So anything that messes with your neck can leave you in serious hot water. A break which impacts the spinal cord at this level could mean you end up totally paralysed and unable to breathe for yourself. You’d think something so vitally important would have been designed just a little better. 

I saw my gp in July and told her that I was getting increasing amounts of pins and needles in my hands and arms. I also told her I was getting an increasing amount of pain in my neck and base of my skull. As my mum had just  been diagnosed with  “probably” cancer, I was informed by the gp that the pain and numbness was stress. This diagnosis was reached without any physical examination. Had they bothered to examine me they would have noted that I have pain from the base of my skull down to between my shoulder blades. This pain limits me doing anything sat down at a table, using my arms . Anything at all where my head maybe held in a tilted down position.

I ended up having to have a break from sewing as the minute I sat at my machine the pain in my shoulder-blade would start. I started using a tens machine on a regular basis. I got the pain under control. As long as I took a break every 15 minutes and checked my posture I could manage the pain.

Then as the pain had gone away I started sewing again, in fact quite a bit more, when I was able to. Now as soon as I sit down at my machine the pain starts. If I hold my mobile phone (cell) the pain starts. On Sunday I was chatting with a friend, nowhere near my sewing machine or mobile phone and I started to get a burning pain in my left wrist and fingers. I knew it was nerve pain and I assumed ( wrongly it was due to being deficient in B12). After she left I dosed myself up on B12 and hoped that the pain would be gone by the following day. It wasn’t. It was now down both arms and in my face. I was so frightened by it that I rang the duty dr at my gp surgery.

I must have blood tests and go in and see them towards the end of November. The doctor thinks it maybe a nutritional deficiency, thyroid or electrolyte imbalance. After having a good think about it for the past 24 hours I am pretty sure its my neck. I get some relief when wearing a neck collar.

So today my birthday will be quite a quiet affair. Spent with hubby and friends. Alcohol will be consumed mainly as a muscle relaxant in the hope I can spend the day without being in constant pain and the nerve pain in my left wrist not driving me mad!