Neck pain / back pain / whiplash?

I hate to admit it but I am really struggling with my pain levels at the moment. For some reason towards the end of last week my neck started playing up, waking me from sleep because the pillow felt like a house brick and I was unable to get back to sleep due to the pain. It is interfering in everything I do. It is very rare for me for pain to cause me to stop eating, I am famously the girl that was still hungry and eating when I had a partially obstructed bowel. Basically nothing stops me eating or drinking ( normal fluids not alcohol ) other than my menstrual cycle years ago when I used to get through the first two to three days on sugary tea or coffee. So believe me when I tell you that the pain is so bad I am struggling to eat.

Since around Wednesday last week I have woken up at 2.30am, with the feeling that my pillow has been swapped by some sort of sadistic fairy, to a house brick. The only way I can describe the pain in my head and neck is that it is like someone has hit me with a shovel. I spend the next few hours trying to fall back to sleep but I can’t get comfortable. It doesn’t matter how many pillows I have, rolled up bath towels used as a neck support I can’t get away from the pain in ,y neck. I started amitriptyline a few weeks ago because I couldn’t tolerate the neck pain any longer. It has taken me a few weeks to get it up to 30mg a night and then it just takes the edge off the pins and needles in my arm and hand. I have to up the dosage slowly because I end up with the dreaded amitriptyline hangover the next day which leaves me feeling disorientated and pukey the following day.  I have permission to go up to 50mg a night from my gp, I am loathe to go that high when I am not supposed to be on this medication due to having PoTS. I was offered gabapentin but that turns me into a zombie and does nothing for me, I didn’t want Lyrica again as that took me an age to come off. So amiltriptyline was the only option I was given for the nerve pain I have.

What really grinds my gears is that this pain has not been caused by something I have done, this was caused by the twat that reversed into out car, back on August 11th. I had a really crap assessment done by a private doctor over WhatsApp back in September ( a call that lasted all of 8 minutes 22 seconds!!!!) who informed me it would take a year to get better from this injury. However this doctor knew absolutely nothing about Ehlers Danlos Syndrome and didn’t ask me if I had any previous issues with my spine or neck. In fact he barely asked me any questions at all if I am honest. I came away from that consultation and burst into tears. I had prepared notes, printed off my medication list but once this doctor found out that I didn’t work he wasn’t interested. Every time I tried to provide an answer to a question or give him some information he talked over the top of me. To put it bluntly this doctor doesn’t even know that I am a wheelchair user or that I use a mobility scooter when outside the house that is how little he asked me. Nor did he ask me how the accident had impacted me. He was only interested if I had taken time off work which was obviously a no.  I was so distressed by the lack of an assessment, as this will be used to base my claim for injuries that I sent an email to the insurance company telling them what a crock of shit the whole thing was. I was told there would be a report provided within 21 days and that they would send it to me so I could check for inaccuracies. I am still waiting.

The pain in my neck, back and base of my skull is so bad today that I have had to resort to wearing a soft cervical collar. I really try not to use this as I am always warned by physio’s and doctors that this will leave my neck muscles weaker in the long run. However this has always been the best form of pain relief for me as it lengthen things out and takes the pressure off my neck. 

On Friday last week I ended up in agony from raising my arms when threading my embroidery machine. I got stuck with my elbows raised and my ribs feeling like I had suddenly been put into a very tight corset. Every time I went to move I felt like I had been zapped with a cattle prod. In desperation I filled out an e-consult form, the current way to access the doctors surgery, it was late at around 2pm, so I didn’t think there was much chance of me actually getting a response. Unfortunately I was right, my back did ease off a little bit, probably due to the amount of gin I drank as a last ditch attempt to get the muscles to relax after trying everything else in my arsenal first. I did get a call at 9.30am on Monday and got some diazepam. That has stopped the spasms in my back but it hasn’t stopped the muscle spasms in my forehead, it is these that lead to horrendous headaches and occasionally migraines like I have endured today. 

I am writing this on Tuesday, Mr Myasthenia Kid has already told me that I don’t have to go to dog training this evening but that would mean I had missed the last session of the last two courses. The last one I missed was because I was in hospital being checked out the day of the accident. I have already missed one session from this set of 6 due to being unwell, I have never missed so many sessions as I have this year but then my health has been an unmitigated disaster this year. I know my health is poor but I like to pretend it isn’t and when I am confronted with the fact it is shit like I have this year it makes me miserable.

I had got to a sort of place where my neck / back wasn’t getting any worse but it wasn’t getting any better. It was liveable and although impacting what I could do, I could still do ( for a limited amount of time ) the stuff that I like to do craft wise. However now I am really struggling again and I feel like I am back right at the beginning again of when I first got injured and have absolutely no clue why last week it got so much worse again.

If you couldn’t tell I am seriously pissed off today.

Lock down again?

So it seems we are looking down the barrel of another lock down here in England ( Scotland, Wales and Northern Ireland have devolved governments so make their own decisions ). Not that the first lock down made much difference to my life other than having Mr Myasthenia Kid home with me for 7 weeks whilst he was shielding as he is at higher risk from Covid than me. People don’t seem to understand that I only leave the house for dog training on a Tuesday night or going out in the car and staying in it whilst Jay walks Dembe. I only shop online, I actually can’t remember the last time I went food shopping or clothes shopping if I am honest. So lock down changes very little for me.

Mr Myasthenia Kid is classed as a key worker with him being in retail, so even if we do head into a stricter “circuit breaker” ( who is paid to come up with this shit?) lock down of two weeks the only thing that will change is that I won’t go to dog training for 2 weeks. I know many people in the chronic illness world whose lives are identical to mine or worse,  a lock down isn’t something we fear, getting Covid-19 and being assessed as not worth saving due to ventilators not being available is.

It seems that Covid has already made it’s presence felt again in my sleepy little town. During the first wave we were aware that there were many people coming down with it although I wasn’t aware of any deaths ( that doesn’t mean that there weren’t) . Yesterday the gossip at Mr Myasthenia Kids work place was that someone had tested positive at a local gym. There were now a few people having to get tests and self isolate. Jay joked as it was a gym and he is so unfit as are many of his friends it was highly unlikely that he had come into contact with them. It doesn’t stop me panicking though. 

His job in retail put’s him at higher risk, just from the sheer volume of customers coming through the door and number of staff. They have already had staff members come into work with Covid symptoms, despite all the government infomercials, news programmes and his work place carrying out regular briefings telling staff what to do. It makes me so cross that people have done this especially when there is no reason to, his workplace have been excellent in ensuring staff members do not lose pay if having to isolate or if they have a positive Covid test. 

He along with his colleagues are also at risk from those customers who should be self isolating due to being in contact with a Covid positive person or having Covid themselves who for whatever reason decide that they have to come shopping. I know some people don’t have a choice, they are a single parent, live on their own and just don’t have anyone who can help them out in an emergency. During the first lock down there was plenty of support available for people who had no one to help them out, now however people seem to be under the impression that the danger has passed and no one is isolating. Despite the fact the city next to us is a Covid hot spot due to the number of university students and staff who are having positive Covid tests.

Please don’t get me started on the Covid deniers or the ones that insist that it is no worse than flu or that just a tiny amount of people get it. I help admin a group on Facebook for people with PoTS ( postural orthostatic tachycardia syndrome ) / Dysautonomia and we have had a sudden influx of people who are suffering from what is currently called Long Covid / Covid Long Haulers.At one point last month we were having at least 5 requests a day from people who had developed PoTs post Covid. We normally get 5 to 8 requests a day to join, so it was crazy that we had so many people turning to us for help as they were getting nowhere with their own Gp’s. 

Long Covid sufferers tend to be  people who were fit and well before getting Covid. When they had Covid they were poorly but not poorly enough to be hospitalised however instead of getting better as they and everyone else expected they have gone on to develop a whole host of strange symptoms. Many of them have developed PoTS or other Dysautonomia symptoms. Their lives have been changed forever due to these symptoms and apart from the occasional newpaper article or short segment on TV or radio very little is being said about these patients whose bodies have been ravaged by Covid.

There has been talk in Parliament that the government / NHS will set up clinics for Long Covid sufferers to help them. In some areas these have been implemented but the majority of the country has been pretty slow. Of course this is all very galling for those of us who have been left with no consultant at all whilst CCG’s & hospital trusts hold pissing battles over who is allowed into their area’s for treatment. Since June I have had no consultant to over see my treatment for PoTS/ severe autonomic nervous system dysfunction, the CCG where my consultant worked has banned him seeing anyone outside that city’s postcode. The hospital nearest me, has no consultant for PoTS as the last consultant retired. The story is similar up and down the country with many CCG’s and hospitals refusing to fund PoTS clinics stating that it is a condition that can be managed in primary care / general practice, yet the majority of the medications for PoTS are Consultant Prescribing only. So if you have no consultant you may not get medications like Ivabradine / Midodrine / Pyridostigmine the latter being an off label medication, it is primarily used to treat Myasthenia Gravis. 

So we now have a situation where PoTS clinics are desperately needed up and down the country ( because those still in operation are buried under new referrals and existing patients) and the hospital trusts and CCG’s have been closing them down or refusing to replace consultants that have retired. It is a perfect storm. And predictably it is leading to bad feeling in PoTS groups, where people believe that they have suffered for years, are still suffering and are struggling to be referred to a Consultant yet those with long Covid are having the red carpet rolled out for them. The animosity isn’t against the long Covid sufferers but the decision makers who have decided these are more “worthy” than them. Personally I see it as an economic / ideological move, if we have thousands of people now economically dependent on the state for benefits, lots of people that have previously never experienced this awful system you have an issue that you may lose your voter base. Some people who voted for this current shower of shite are going to have a rude awakening when they find out living on benefits means living in poverty and not the lives shown in the usual Government propaganda. God, I must be getting old to be so cynical. 

It isn’t hard to see why some PoTS patients are upset that it would appear long Covid sufferers are being taken more seriously than they are. Personally I am happy with whatever brings PoTS to national attention but I do want the same facilities that are being offered to Long Covid patients to all PoTS patients, many who have had to battle for years for a diagnosis. Something good has to come from this surely?

So we wait whilst the government makes up it’s mind on whether we are heading to another lock down or not.

Apologies for the blog post doubling up there. I have no idea what happened.