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.

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