Back pain update

The back pain I had last week was awful. I would wake up thinking I was ok and then within minutes know I was in for another day of unrelenting pain. No position was comfortable. lying hurt, walking hurt, sitting hurt . I had to stop what I was doing and just spend time alternating between resting and keeping mobile so my back didn’t get worse by seizing up.  I hate it when my back pain gets that bad because either I am in too much pain to be able to concentrate on anything or I physically can’t manage to do the things that bring me joy, like my sewing, embroidery and now crochet. It also means projects that I had planned had to be paused. 

I really don’t like pausing projects as the slightest thing will stress me out these days. I am very easy to stress out when it comes to be crafting. Usually my crafting projects are presents. I like to have them made well ahead of schedule, by not being able to do anything means the deadlines are racing towards me. That then makes me stressed and tense, which isn’t great when your back is bad. 

So without typing it or saying it out loud as I have known from previous experiences this tends to jinx me, lets just say things are much better. I am being careful, not twisting in only an EDS body can contort, moving more slowly and just being aware of staying in one position for too long. Last week seemed to whizz by in a drug induced haze, this week I feel present and able to do what I want to do. 

Unfortunately due to pain I can’t stand in one spot for longer than about 30 seconds without the pain in my back becoming unbearable. The only way I can describe it is if my back is collapsing down on itself. The pain is right at the base of my spine. Years ago when standing wasn’t a problem due to PoTS, I would have to hop from foot to foot as standing in one place would trigger back pain. I am working on my core muscles again now that the pain has settled. For crafting we have what we term the “camping table” even though we don’t go camping, if I need extra space then that table is brought out and it means I can sit comfortably and get any jobs that would normally require me to stand done safely sat down.

I am still limited presently with the amount of time I can spend doing things as due to the car accident back in August, I am left with crippling neck pain and headaches, whenever I am working with my head tilted down. It is the same with computer screens, mobile (cell) phones, books, magazine and working on my crochet. Anything that has my head tilted down has to be carefully managed so that I don’t cripple myself with pain later. This has been the most frustrating thing since the accident as I had managed to massively improve the amount of time I could work at my crafting ( embroidery / sewing / crochet) without causing myself pain.Now I am back to the bad old days of 15 minute bursts and having to ensure I stretch my shoulders and neck and move away from what I am doing. 

I am not receiving any treatment for the injury I sustained, I got told just after Christmas that my MRI scan was clear so orthopaedics don’t have any suggestions other than it will take up to two years for the situation to get better. In the meantime I still have a left arm that has pins and needles in it every day and a massive flare up of occipital neuralgia that I haven’t had since 2016 and I thought was behind me.

It is very easy to slip down the rabbit hole and get depressed about it all. I love sewing, embroidery and crochet. They are my creative outlet, they are the things that make me feel alive. From 2008 until 2017 I barely existed, suddenly when I found sewing I felt alive. I was incredibly lucky that when my Gran passed away I was left a small inheritance which allowed me to buy the things I wanted to be able to lean how to sew, make quilts, machine embroidery etc. Now with sustaining the injury in the car crash it can sometimes feel like all those things are slipping away from me. 

The Covid situation certainly hasn’t helped things, I have had to contact my doctors so many times over the last 12 months about various issues that I haven’t been able to manage myself. I have also managed to develop psoriasis ( well I think I have actually had it years it has just got much worse this year) my immune system is taking a battering. The last month or so I have had a really angry bit of skin just below my bottom lip on the right side. I presumed it was eczema, I get that when stressed. For the last month I have been treating it, last week I decided to try a different direction and ordered some cold sore cream. Let me just state here and now, it didn’t tingle, hurt, blister etc etc however after 48 hours of religiously applying the cream it has almost gone. Whatever the hell it was, it certainly didn’t resemble a cold sore has almost disappeared. It was about 2cm long and 1cm wide. So not small and very noticeable, I have been very grateful for the fact we are still wearing masks in public places! 

Whilst I am off in tangent land I will let you know that my blood tests have come back all ok so I have now been referred to Neurology- you know my favourite department for my possible focal dystonia. They were trying to tell me it was the mestinon causing my foot problems and then it was an electrolyte imbalance. I got sent a small novel by the local hospital. It was quite ridiculous as basically the letter tells me that they will either a) send my gp a treatment plan to follow or b) they will see me for either an appointment or tests or both. I then received a small woodlands worth of paper all about Covid, wearing a mask in hospital etc. Which is bloody wasteful and totally inappropriate for the letter I received. I also got travel directions – for a letter that just says they are assessing my referral. Now they look after a large region, how much money, paper and time have they wasted by sending out these small forests to people who it doesn’t actually apply to? Ok rant over.

Good news though that my CA125 is obviously ok, I was told any issues they would contact me. Plus the fact that I have the letter from the hospital saying that they are looking at my referral meant there wasn’t an easy fix for the gp. 

So for the moment back wise ( and we are talking the whole of my spine ) I am being very careful not to upset it and end up back where I was last week, where I was close to tears on numerous occasions.

Bad pain day

I hate it when I wake up and within seconds of opening my eyes, I am already registering the pain I am in. God knows what gymnastics I got up to in my sleep last night but my back is letting me know it really isn’t impressed. It has been quite some time since my lower back has complained quite so loudly, every step, every movement is met with a counter move of pain coming from the right side of my spine. Again this is unusual as it is normally the left side of my back that gives me the problems. 

Had I been displaying any of the red flag symptoms I of course would have got medical attention. Red flag symptoms with back pain are loss of control of the bladder and bowel, I have had these drilled into me for years by my doctors, purely because I have presented with back pain so many times before. So whilst I don’t have any of these issues I am keeping a watchful eye on my symptoms with it being a different side of my back that the pain is originating from.

Initially I tried to just soldier on believing if I moved around, stretched and went about my day that the pain would lessen. Nine times out of ten getting moving helps.  It didn’t, I even did an exercise session on my bike to see if that would ease things up. Whilst it didn’t hurt to move my legs, after a time my spine got so painful that just having the exercise bikes seat pressing on my spine was enough to make me jump. No positions was comfortable, so the next thing was to try was a lobster hot shower. No relief was provided with that either. 

Contrary to popular belief I don’t run to the pain relief as soon as I have the slightest twinge, this morning I really wish I had as perhaps then I wouldn’t have had to put up with hours of pain that felt like I was being stabbed ( just above my right buttock, about an inch away from my spine) with a hot knife with every movement. I hate having to take more than my allotted amount of pain relief, mainly because I find it makes me really tired ( but so does pain) and it impacts on what I can then do that day because I am not fully with it.

If my back wasn’t quite so sensitive to touch I would have tried my Tens machine but anything touching my back on that right side is causing pain. I do get very sore over the vertebrae at the base of my spine, when the pain is like this it is best to avoid having anything touching it if at all possible.

 As soon as I felt the pain in my back today I knew all my plans for the day had just gone up in smoke. I find that deeply frustrating, making plans at the best of times is always a bit hit and miss as I never know from hour to hour how I am going to feel. I wanted to do some sewing today but I know that this would make my back worse because being sat in one position and not moving around would have put more pressure on my spine. So I have a pile of fabric cut out ready to be quilted to make humbug bags a gift I got from my secret Santa in 2019 and haven’t had the time to make until now. So they will have to wait for a bit longer.

After my shower I took additional pain relief, the hot water hadn’t been enough to provide any relief. This feels like my spondylolithesis  has shifted, it does this every so often, I may have quite severe pain for a day, days or even weeks and then it settles again. (https://my.clevelandclinic.org/health/diseases/10302-spondylolisthesis#:~:text=Spondylolisthesis%20is%20a%20spinal%20condition,treatment%20can%20relieve%20your%20symptoms. ) My Spondylolithesis is at the level of L5 / S1 so at the base of my spine and I have had issues with this for years. You can see a diagram of the vertebrae and their names by clicking https://www.healthpages.org/anatomy-function/spinal-nerves/

It would be great if taking extra pain relief didn’t then cause problems of it’s own, the pain is better managed but at what cost? I find pain particularly bad pain exhausting, like most people. However it is a double whammy of fatigue when I take extra pain relief, as I find that wipes me out as well. I can also end up with really itchy skin when I have to increase the amount of morphine I have had to take to cope with the level of pain I am in. I have to attempt to ignore the itchy sensations on my skin because once I start scratching I will not stop and it wont provide any relief. I will scratch until I draw blood. So it is never a case of popping a pill and everything is made better. 

There is the added complication of increasing pain relief that it messes with your ability to make decisions, work safely and concentrate. A blog post that would have normally taken an hour or so has taken close to three (and I am still nowhere near finished, despite it feeling like I have written 30’000 words). This also limits what I can actually do to while away the hours whilst my husband is out at work. TV shows I may normally watch are a no go because I will have no idea at all at the end of an episode what happened and it will leave a gaping hole in the story line for me. I have been known to watch episodes again when the pain relief has been dropped back to normal levels, and when I do it is like I never watched the episode in the first place because I remember so little of it.

I am pretty confident that whatever has shifted overnight in my spine to cause me issues today will more than likely shift back overnight and I will wake up with the pain having gone. People find that hard to believe, I have to be honest even I scratch my head with it at times. However with the connective tissue disorder EDS, things do move around far more than they should. Which can be met with incredulity by both medical professionals and friends. Many don’t understand how you can be in severe pain one day and then wake up the next day with the pain gone. It flummoxes me regularly, sometimes it doesn’t go away overnight and may stay for a few days. 

So fingers crossed this back pain leaves as suddenly as it arrived so the bad pain days are limited.