Stress, migraines and other sh*t!

I have had a good few days over the last week with no headaches turning into migraines until this morning. Every night though I still wake up and have to change my pillows several time to make my neck and back of my head comfortable. More often than not I end up sleeping without any pillows. Something I haven’t done since I was 18-19 when I had neck issues then. The problem is with being that flat I then quite often wake up with back pain between my shoulder blades. If I prop myself up I end up with back pain in my lower back. If I could just find the one sleeping position that allowed me to sleep through the night without any pain waking me up that would be fantastic.

I can’t really complain though after the years of insomnia I suffered from around 2008 until 2016 when I was given Melatonin. Back in the bad old days I would only sleep between 2 -4 hours a night for two nights then on the 3rd night get no sleep at all. On the 4th night I would sleep 12 hours and then feel absolutely terrible, almost like I was drunk without the fun part. I did absolutely everything I could to get to sleep, lavender sprays, lavender sachets in my pillows, not using the TV or phone in my room, all without any success. This cycle of so little sleep had a very bad effect on my mental health and my pain levels. Everything felt heightened, my pain could be off the scale frequently and my emotions were all over the place.

This 4 day sleep cycle would just repeat over and over. I would occasionally get six hours sleep which would be a treat. The most frustrating times were when I would drop off to sleep and then two hours later wake up and that would be it for the night. I existed on cigarettes and mugs of tea. Usually one of the dogs would keep me company and they would swap over so that they all did a few hours each. Even now if I get up in the night I am accompanied by Dembe. He will either sleep right beside me, like he is doing now as I write this blog post or he will sleep on the sofa opposite to the one I am on, so he can watch my every move.

Dembe the Labrador is curled up on the sofa, the MG Kids leg is in frame along with her Chromebook, which is open on her lap.

I cleared this morning’ migraine quite quickly with a dose of Sumatriptan. However due to the stormy weather ( we have a weather alert for heavy rain and thunderstorms until this evening ) the top of my head feel’s like it is in a vice and being squeezed so hard my eyes feel like they are going to pop from the sockets. For as long as I can remember I have had headaches when the weather is stormy. I feel a bit cheated though as friends over an hour away have had massive thunder storms. Mr Myasthenia Kid’s mum rang us to check we were ok as where she lives they have had torrential rain and copious amounts of lightening. We have had a few showers and currently the sun is shining. It is very humid so I haven’t bothered sorting out my hair. It will stay straight for 30 seconds and then frizz. There is no point wasting any energy on it.

This will sound completely bonkers but I am quite a private person, despite the blog and talking about all manner of things. There are things I keep private because they involve other people or because I just don’t want the sympathy vote. Sometimes I am still processing stuff in my head and just don’t have the energy to deal with the questions that writing about an issue will cause. Things are really stressful here at the moment, we never seem to get a minute to catch our breath. But we keep going like everyone else does because the world doesn’t stop just because you are having a shit time.

There are several issues going on but the one that is worrying me most at the moment is Dembe ( and this was probably the source of the migraine this morning). On and off for a few months poor Dems has had an intermittent limp. Not an obvious one, one that unless you knew what you were looking for you wouldn’t know it was happening. We had him at the vet’s last month to be checked out and the vet couldn’t observe it in him, isn’t that always the way. He was put on some medication a it was hoped that perhaps it was a soft tissue injury that needed some rest and some anti inflammatory medication would help. Within a few days he was doing so much better and no more limping. As a precaution we cut his walks with the dog walkers right down to the bare minimum, ensured he didn’t do anything too physical. Sadly on last Thursday the limp came back, I still had pain medication so I gave that to him. The limp settled and then on Monday was back again.

I rang the vets on Monday evening and got Dembe booked in for an appointment the following day. Mr Myasthenia Kid took him to the appointment as they only allow one of you into the building at the moment due to Covid. This time the vet could see the limp and she gave Dembe a full check over. Since this limp started there has been no swelling, no heat coming off any of the joints in his leg and for the majority of the time his limp is very subtle. You actually have to watch his head as he is walking towards you, every few paces his head bobs down, that’s how subtle it is. It is so intermittent that we and his dog walkers have been unable to catch it on video. So the next step is x-rays of both his front legs. The vet has checked his back legs and his hips are sound. Hip Dysplasia is a massive issue within the Labrador breed and we ensured both his mum and dad had low hip and elbow scores. We also stuck to the rules about not allowing stairs until he was old enough and also we stuck to the exercise rule of 5 minutes exercise per month old. However sadly Labrador’s are also prone to elbow Dysplasia and no matter all the precautions you take with your pups sometimes shit happens and this could be one of those times. I am not too concerned as he is insured, so they will pick up the tab. It is the fact that he maybe in pain, that he has to go to the vets and stay there when he has only ever been left for 30 minutes with someone else in his life since he was 8 weeks old ( other than his dog walks).

Those of you who have followed my blogs will know about our first dog Travis who passed away shortly before his 3rd birthday. As a teenager we also lost a family dog when she went into be spayed as she was allergic to the anaesthetic a situation that was just tragic. For some reason with Dembe I have always wrapped him in cotton wool and my fear about him having to be sedated for the x-rays really has me on edge. Plus the fact that he is coming up for his third birthday has me freaked out. I know he isn’t sick like Travis was but I am just paranoid about it. If you want to read more about the dogs we have had please use these links http://themyastheniakid.com/2014/10/30/the-dogs-in-my-life-part-one/ and http://themyastheniakid.com/2015/08/06/the-dogs-in-my-life-part-two/ . I need to write part three to cover Willow, Frankie and Mollies passing within 55 weeks of each other but even though it is several years on it is still just too raw.

I was much more chilled with the other dogs, than I am with Dembe. I have gone back to being like a brand new dog owner and going to the vet about everything! I did feel when we brought Dembe home I had completely lost my confidence and I was always terrified I was going to hurt him ( accidentally obviously).

So until the X-rays come back from the orthopedic specialist we will be none the wiser as to whether he has Elbow Dysplasia or a soft tissue injury or anything in between. If it is Elbow Dysplasia depending on how bad the joint is the treatment could be conservative, treating it when it flares up, reducing his weight a little etc or it could mean an elbow replacement. The thought of which terrifies me as the recovery period is 12 weeks of crate rest which he will go bonkers, quickly followed by myself and probably Jay. So for the moment all professional dog walks have been cancelled. He is allowed 25 minutes off the lead a day and then small lead walks as he point blank refuses to go to the toilet in the garden. He has had his pain medication increased and hopefully that is helping him. The vet constantly reassured my husband that she felt whatever the issue was it has been caught early so the damage shouldn’t be too great.

Dembe is fine in himself, loving, affectionate, eating and drinking fine. He keeps wanting to zoomies in the house so I am having to think up games we can play that doesn’t involve too much food and too much movement! He is pretty chilled most of the time and is quite happy to snooze. I just thank our lucky stars that he is no longer a puppy as he would be manic with the need to burn off energy.

So the migraine this morning was not unexpected as that seems to be my default setting when stressed and at least they have reduced in number since my whinge post.

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.