Iechyd Da: Part 2

On the back of everything that Elysia’s had to go through during the past year, to make things more fun, my own body decided to start falling to pieces too! We are still not sure what’s causing my health issues, but I am going to write about them to share my experiences and have a bit of an outlet for how it’s making me feel.

The Achey Rib

Just around the end of the 2023, I remember noticing while at the PC that I had a bit of an ache in my right rib area. I initially thought maybe this was a posture issue, that I was spending too long during my Christmas break sat playing games with friends on keyboard and mouse. However, this turned into a daily ache that would start showing up towards the end of the day, regardless of if I was at the PC or not. It also felt like it got aggrevated when doing light physical activity, like putting away dishes from the dish washer.

I went to the doctor about it, and initially they suggested it could be an inflamed lining of the lung, perhaps some after effect of an underlying infection that had gone unnoticed. I got recommended to take a course of anti-inflamiatories to see if it remedied it. When the doctor recommended this, I remember him asking “Can you take ibruprofin?”, and my response was “Oh, can’t everyone?”. Typically, it turns out after a week of a taking them, that I am in that category of people who aren’t able to take them.

No-bruprofin

I found myself having what felt like some form of acid reflux. I thought I’d be able to crack on with the medication, but it got to a point after a few days where I was convinced I had a pill stuck in my throat. I didn’t have anything in my throat in hindsight, but the acid had caused a big irritation to food pipe and made it feel like there was an object lodged in my throat – that would move down as I swallowed by then return back to its original position. When looking online, they recommended if you had something stuck in your throat for over two days to go to the doctor. I explained to the receptionist and they got me in for an appointment that day which was great. However, I remember the doctor being a bit cold, as he didn’t classify my symptoms as “emergency”. It was a bit of a negative experience to be honest, since I was only following advice I’d read and of the receptionist. Either way, I got given some medication to help settle down the acid, and got recommended to stop the anti inflamiatories for my rib pain.

Scans

The throat situation cleared up, but the rib pain didn’t. I eventually went back to the doctors about it as it hadn’t gotten any better. The doctor was happy for me to have an xray for peace of mind, and get some blood tests done to check the function of my organs and check for diabetes. The blood tests came back fine, but the x-ray showed that when I inhale, my right diaphram sits 7cm higher than my left diaphram. I remember thinking, crikey – 7cm is quite a lot. I discussed the xray results with a different doctor, who was actually great. As much as he didn’t expect it to be anything serious, he talked through the types of things that could cause this. There were some scary things, like neurological conditions or muscle degregading conditions, along with the possibility that a tumour was pushing against the nerve that controlled the diaphram. Since it was my lung, there was a concern also if it got worse that it’d affect my ability to breathe.

Next on the menu, a CT scan! This happened to fall on my birthday, the same day I was in hospital with Elysia for her breast removal surgery. In fairness, they called me ont he day to try book me in for the following day, but when I told them I was already at the hospital they were able to accomodate and make room for me. I managed to get it done whilst Elysia was out in theatre, which was a great way to keep my mind off things, you could say.

After a bit of an anxious wait, the scan came back and the doctors said that there was nothing showing on the scan of concern. I had a CT scan following a kidney stone diagnosis 3 years prior, and upon comparison, they said it looked like my diaphram was in the same state then. Now whilst this was a great relief, it did leave me feeling unsatisfied when they recommended that there was no further investigative action needed. I was sat there wondering why have I only this year starting to get an ache from it, if it’s the same thing? However, at the time, I was suffering from ongoing lower back issues, so I decided I’d wait for the back heal and when everything else is back to normal, I can try and push for a further investigation – perhaps using my private health insurance.

The Back (pain) Story

When everything else is back to normal I said.. which well, was wishful thinking. It hasn’t been back to normal since. Every day of this year i’ve been in some pain, be it a kidney stone flare up, significant lower back pain, or this rib/lung issue. The back pain started right back at the start of the year, shortly after the rib pain started.

I essentially “put out my back” in a way that felt similar to what I’ve done once in the past. I have memories of sometime in 2015-2016, where my lower back got into a such a state that I could barely get out of the car when driving to work. It took some weeks to recover, but I got over it and got back to normal. I felt this new occurance was going to be the same story this time round. I was struggling to get out of bed, but hoped it would slowly start getting better over a couple of weeks. Whilst it did get better, the difference this time is it never fully got better.

It felt like it’d get to about 70% recovered, but then get no further. The type of symptoms I had was lower back ache / strain, with shooting nerve pain into my buttocks and legs. I’d have great difficulty moving if the motion relied on my lower back and core strength, such as like lifting myself out of bed. I found that after sitting down at work for long periods, upon standing up I would find my back feeling very tight and stiff – sometime’s it’d also lead to pains down my leg rendering me unable to walk for a few minutes until my back had loosened up a bit. I tried iterating between sitting and standing at my desk during my work day, but both had issues: if I sat it would let me back get stiff and make it painful when I stood up; and if I stood up for too long I’d start getting the shooting pains down through my legs. The only comfortable position was laying down in bed, though I’m not sure if it was helping me recover as it’d feel worse once I got back up out of bed.

Physio

I signed up for some online physiotherapy through my work health insurance. It was hard to tell if it was having an impact. When I said it only felt like it would get to 70% better, that’s partly because I still felt very vulnerable in my back, and would get still get lesser verisons of the original symptoms. The fact I’ve retriggered the injury during recovery three times reinforces that it’s never been close to fully healing. One time, it was a sneeze that set it off. I sneezed, and then had to spent the next few days in bed! The injury started on the left side initially, though after exercises and a re-triggering of the injury – it ended up moving mostly to the right side.

Another symptom I was getting during this back injury recovering was hip pain. I found if I was stood in the kitchen sorting dinner for over 30 minutes, that when I’d come sit down on the sofa – it’d feel like my right hip was swollen and really uncomfortable. This would ease after 10 minutes or so sitting down, but another annoyance to deal with while I was trying to care for Elysia going through her cancer treatment.

After some 8-10 weeks, the online physio agreed it would be best to get referred to an in-person physio. This was easier for me now, as Elysia’s treatment was coming to an end. The convenience of doing physio online wasn’t purely from a self isolation perspective during Elysia’s chemotherapy, but I was already missing a lot of work due to the busy appointment schedule of her treatment, so I didn’t want to add another in-person appointment on top of things. On that note, my workplace had been amazing through Elysia’s treatment and offered me more flexibility than I could have imagined.

So I started in person physio towards the end of April, and I must say it felt a lot better to see someone in person. Having someone being able to physically check your symptoms, and see how your body reacts to certain stretches and movements seemed immediately more beneficial. I was given some exercises that differed to what I was doing before, and I felt like the conversations we had and plan ahead was more promising that what I was getting from the online physio. At the point of my first in-person physio, I was exhibiting what’s known as a lateral shift, where my toreso was naturally tilted some 15 degrees to the left due to the issues I was having on the right side of my back. I was seeing good progress, I was able to stretch further, my lateral shift was getting fixed, and I was losing weight to try help with the overall issue.

The Saucepan Incident

Whilst I was still having pain, the hip pain has gone and I am now mostly dealing with lower right back pain, along with occasional shooting pain down into my buttocks. But then, I had another re-trigger at the start of May. I was putting a saucepan back on the shelf after emptying the dishwasher, and the shelf it was place on decided to give way. I instinctivley jerked to catch the falling shelf with my free hand, but that motion retriggered the back injury. I was worried it was going to be another case of spending a week or so recovering, but thankfully, it wasn’t as bad as I expected the next day. Took a few days, but then I was almost back to where I was prior to the re-triggering.

However, this is where things started to get a bit more worrying. After that incident, I noticed my right quad just aching, even when not using it. I’d be sat at my desk, and it would just start aching as if it’d been punched and given a dead leg. It acually ached less when I was walking and using it. A few days later, I remember at the end of a work day feeling drained from the ache mixed with some back pain, so decided to go to bed early and watch something on my laptop. Whilst in bed, half laying/sitting, I noticed my right leg go numb. I moved it and it started to come back to normal, but this worried me as it wasn’t a normal for my leg to fall asleep – my leg was just resting straight, no unconventional position. I figured I could speak to the physio about this in my next session, which was 4 days away.

Tingles, Tingles, Everywhere

A little later that night a tingling sensation started in my hands, feeling a little numb. This caused me to starting worrying even more. I was finding it harder to rationalise this as being related to my back injury. When I tried to go to sleep and lay down flat, the tingling worked its way into my face too. As we all do, I did a little research online and was felt confident it wasn’t something like a stroke, but it was really hard to shrug it off as “nothing to worry about”.

I decided to book a GP appointment through my health insurance the next day. With an eye on this potentially being something serious, I figured my health insurance might get me seen quicker if I needed a referral to a specialist. I explained to the GP what’s been going on, and they agreed that the lower back would maybe explain the legs, but not the rest of it. They tried to re-assure me that sometimes things like this can come from a vitamin deficiency, but when I had mentioned I’d had a blood test just a month or so ago for my rib investigation that hadn’t flagged any issues, she recommended I got referred to a neurologist. She ultimately said that it can feel worrying, but as long as its not causing a loss of function, such as slurred speech or inability to grab things, that the tingles and light numbness can be harmless.

A referal was made, and that is where I currently am – awaiting my first appointment in late June. Even through private healthcare, there was still over a month wait time before to see a neurologist. I decided to keep a daily log of how the symptoms are progressing. I’m hoping this gives more useful info to the specialist when I do get seen.

One of the following days after that GP appointment, I remember the face tingling turned quite painful – it’d felt like I’d had a football kicked into one side of my face. However, that returned to just normal tingling after that, and I haven’t had a great deal of pain since at least. The tingling is persistent though, every day, and seemingly getting more intense. It seems to be sporadic, but throughout the day some part of me is tingling, be it leg, feet, forearms, hands, face, or even more crotch – which is fun. The crotch stuff made me worry a bit, because when you get a referral for lower back injury, they always ask questions about numbness in the crotch – as there is some condition that’s a symptom of.

More recently, I’ve started finding that my limbs will often feel like they have falling asleep and gone numb in the middle of the night. This wouldn’t wake me up, but I’d notice when I’d naturally wake up and roll over in the night. Typically it’d be the limbs I’d been leaning on, so my right arm and leg if I was sleeping on my right side. If I moved them and rolled over, it would fade away pretty fast, but I’d then find it happening again a few hours later. This happens most nights at the moment.

It’s worth noting, that unlike proper “pins and needles”, what I experience isn’t painful when the limb starts waking up. We’ve all had our foot go to sleep before by sitting on it awkwardly, and when that starts “waking up” you are greeted by an odd mix of pain and tickling. I’ve not experienced this sort of “waking up” sensation with any of my numbness.

Present Day

Usually, day to day, I’ve been dealing with tingles travelling around different parts of my body. My left leg is quite common, as is my scalp, or parts of my face, and my hands. This morning, however, it seems to have progressed a bit further again. My left leg has felt gently numb all day, instead of just tingles. It feels like its lightly “asleep” and just not waking up when I move it. It feels a bit “warm and fuzzy”. When my clothes are brushing against my leg, the skin can feel extra soft and smooth, as the surface isn’t as sensitive to the touch as normal. This is mostly in my left thigh, but extends down my leg and into my left buttock a bit. I’ve had hints of it on the right rhigh, but thankfully they not stayed.

So where does this leave me right now? Well, I don’t know what’s going on with my body, and right now it feels like a LONG time until my appointment on the 21st. Whilst the tingling is concerning, the numbess is certainly more concerning. What if this numbness starts spreading to more than just my left leg? What if it gets more intense and affects my ability to do things like walk or use my hands properly? Whilst I’m aware (and hopeful) this could be a short term flare up, it’s hard not to wonder if its going to keep progressively getting worse given my story so far.

They Say Not to Self-Diagnose

In the mean time, I’m left trying to work out what is causing this. Researching online is scary, but I am also trying to balance it with some of the conversations I had with the nice doctor after we got my lung xray back.

• We can probably rule out a cancerous tumour, as the CT scan was clear and its affecting so many places that it rules out the idea of something “compressing” specific nerves.
• We can also rule out my back injury as the explanation, since its not just affecting my legs and back. However, I can’t quite shift the correlation of when I re-triggered the back with the start of these symptoms. Perhaps it just brought to light an underlying issue by causing trauma to some nerves, I’m not sure.
• The doctor and I had previously discussed what could stop a muscle from reacting, like with my diaphram. He said that typically: either the nerve is not sending the message properly, or the muscle isn’t reacting to the message. He did suggest if it was muscular, that I’d likely have issues with weakness in thighs making it hard to stand up, double vision from my eye muscles being affected, and general muscular fatigue. Whilst that does give me some hope that it may not be muscular, when I have this constant ache in my quad and now my other thigh is going numb, I find it hard to rule it out.
• The more likely situation is that somethings affecting my nerves on the whole. This can be caused by a few things, such as autoimmune disease – where your body starts attacking its own nervous system, or some forms of diabetes can also cause damage to the nerves. At the moment, I don’t think it’s diabetes related, as the recent blood test I had should have flagged that.

Essentially, the tingly sensation is often associated with some form of nerve damage. Its now about finding out what is causing the nerve damage, in my opinion. Multiple Sclerosis (MS) is something that has come up in my research, and the early signs of it matches an alarming amount of my symptoms. It includes tingles and numbness in legs, arms and face. It also discusses bladder issues, which is a whole separate health issue we’ve been trying to diagnose for the past few years. As part of me developing a kidney stone, we are trying to figure out why my bladder struggles to fully empty, along with needing to pee more often. We still don’t have clear answers, but it isn’t far fetched to think it could be nerve related. When we also look at my diaphram issue, that seemed to be nerve related. Alongside the new body-wide tingling sensations and numbness, I’m finding it harder and harder to rationalise that what I’m experiencing right now isn’t going to just go away and be “nothing”.

I learned that MS can affect people in different ways, and some people will have flare ups and then go back to normal, whilst it can impact the mobility of others significantly. Ultimately, there’s no cure, but it’s something they can try and slow down the progression of it with medication. Whilst I am still far from getting any such diagnosis, right now it feels like what would make the most sense to explain the symptoms. We’ll find out more after I see a specialist; right now I just hope that the symptoms don’t progress much further between now and the first appointment. Similar to waiting for Elysia’s chemotherapy to start when we knew she had cancer, there’s a sense of worrying that the time waiting is only giving it opportunity to get worse.

What’s next

It frustrates me that it’s been one thing after the other, and I’m very aware how people (including doctors) might start thinking I’m a hyperchondriac. I do acknlowedge that worry and stress may contribute to symptoms, though I’ve no doubt there’s more to this than “worry”.

I’m a bit scared by it all, to be honest. I think not knowing is probably what makes situations like this scarier. Drawing a paraellel with Elysia’s diagnosis – once we knew for sure what we were up against and spoke to the doctors about the treatment plan, we then “toggled on” our survival mode and adapted to the new norm. For me right now, I don’t know what sort of new norm could be ahead. I’m not expecting the worse case; though those cases do scare me. The idea of my body slowly losing the ability to function and losing independence is scary. But who knows, perhaps it’ll all subside and I can go back to just having a bad back. Right now, I think I’d settle for that!