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.

You don’t look in pain

A week or so ago a Facebook buddy of mine posted a quote on  her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don’t want to come across like they are looking for attention or sympathy.

This was the quote my friend posted;

I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can’t find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.

Many people with chronic pain are disbelieved , especially when there is no “evidence” of what is causing the pain or the images from scans or x-rays don’t correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking.  I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it…when the x-rays came back it showed really mild arthritis. Due to it’s location I couldn’t be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie’s. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc

It’s not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying “well it can’t be that bad they manage to do X.Y. Z.” It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn’t have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying ” well it can’t be that bad she is still sewing etc”. I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.

If the pain is that bad why don’t you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it’s worst in 2016. I just couldn’t do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.

The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven’t done anything to cause that pain. My pain is in my hands…great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn’t stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn’t go to dog training as my bowel adhesion’s started up after eating dinner. I have been having problems with my adhesion’s a lot the last few weeks. I managed to get the pain under control with Buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started. 

Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old. 

What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like “are you sure it’s not trapped wind as that can be painful”…my standard reply to that is “how many people do you know have fainted from trapped wind?” or ” how many people have ended up having major surgery due to adhesion pain?” That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn’t suggest they had stubbed their toe. Just because you can’t see my pain or have never felt it, doesn’t mean it doesn’t exist.

Also two people can have the same condition, it doesn’t mean their levels of pain are the same or that the condition will follow the same path. Everyone’s journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn’t work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn’t. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.

I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can’t be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.

We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don’t need to be battling friends and family as well.

Even when I am in horrendous pain he makes me smile.

https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360

http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html