It’s Been A While

It’s been a while since I last posted and I thought I’d better post to keep people updated. Truth be told – I’ve not been very well of late and I’d like to talk about this on this post.

Around the 17th June, I was laid down trying to get some sleep and as you do, trying to get comfortable, tried moving around. This was when everything started, I couldn’t move my legs. It was like they were weighted down with cast iron concrete. I thought it was just the way I was led. I couldn’t move them for like 15 mins or so. It didn’t concern me too much.

A few days later, it was my son’s birthday and I had the most horrible pain in my right hip, but again I ignored this, despite it not going away, even after pain relief.

Then my left elbow felt disconnected from my lower arm / wrist. It wasn’t painful but it was just weird. It still feels like this now but to a lesser degree.

A few days afterwards, I began to have excruciating pain in the back of my head, neck and left shoulder. The left hand side of my body was like it was on fire or someone was holding a hot iron against it. I couldn’t really ignore it any longer. I had to ring the doctors.

So I rang them and to their credit, the GP rang back within five minutes. He went through everything with and prescribed Naproxen. He also booked me in to see him the next morning so he could examine me. So I went the next morning. He had me doing all sorts of things, I noticed I was struggling more on the left side. My grip in my left hand was noticeably weaker than my right. Being left-handed this is quite difficult to deal with and I’ve had to adjust a few things at work, though this is on an unofficial basis.

As a result of this examination, he prescribed Amitriptyline. I have to take this at night as it makes you quite drowsy. So yet another medication to the list, but this wasn’t to be the last. The remainder of that week I spent in a lot of pain, though now it came in different parts of my body. I and I still am – was feeling numb in different areas. I’m having very subtle pins and needles in both feet. I love wearing socks, they’re almost like a security blanket for me. But now even the thinnest of socks, my feet feel like they’re going to blow off.

With the increasing pain, I rung the doctors and I was then prescribed Co-codomal. I was hesitant at first with this, but I knew I needed something to help. I’m in no way against medication but having these three prescribed in quite quick succession left me a bit wary. I had to trust the doctors though. Again though as time wore on, nothing was really helping, it was just being masked over.

I spoke to the original doctor again and he ended up prescribing Gabapentin. I had to wean myself down on the Co-codomal whilst increasing the Gabapentin. So here I am on these 4 different medications. The GP also organised an MRI scan of the back of my neck and shoulder. I’m still to have this, it was meant to be done within 2 weeks of the referral. That was 3 weeks ago.

I spoke to a different doctor yesterday because I have my second vaccine for COVID-19 next week and I’ve had all these symptoms since having my first. I didn’t get taken very seriously and the doctor has ordered blood tests. He wanted me to have them before Monday so I could speak to my original doctor. It’s almost like passing the buck and I don’t like that at all.

In between all this, I’ve attended the urgent care centre at my local hospital who have referred me to physiotherapy. I have my first appointment for that over the phone, this coming Thursday. They couldn’t do anymore for me as the GP has done what they would do anyway.

I’m not in as much pain thankfully, however my mobility is quite impaired. I’m walking around like I’m drunk or like John Wayne on stilts. I won’t lie – it’s a worrying time, but like with anything, it’s something I have to face. Whatever is going on, it’s another fight. I’ve done a bit of research, reading about things and watching videos on YouTube, but I’m not letting that taint my views on what’s going on. I’ll leave that to the professionals. Here is a non exhaustive list of symptoms:

  • Fatigue
  • Staggered Walking
  • Pain in both hips
  • Subtle pins and needles in both feet
  • Shoulder pain
  • Headaches
  • Numbness across my lower back and abdomen.
  • Numbness in my lower legs.
  • Difficulty swallowing

There’s more to the symptoms, but that’s just list to start off with. I’m not speculating about anything. I have a few friends I’ve asked questions of and one of the people I’ve watched on YouTube talks about his symptoms and subsequent diagnosis. I won’t lie, it all sounds very similar to mine.

So – that’s where I am at the moment. It’s very scary, but I’m not scared as such, if that makes sense. I just want to know what’s going on and then I can deal with it. It’s not exactly the update I wanted to give but I felt it was important to give it. I’m still on the Autism acceptance journey, but I think now, I have other more immediate things to think about. I was enjoying that Autism journey! I was absorbed in it, then of course this block in the road has taken over. I’ll still blog about my life as an adult with Autism and my thoughts around the same.

One more step…


  1. Oh my goodness, what a horrible and pretty damn worrying thing to be going through. I’m so sorry, James.

    Amitriptyline didn’t get on well with my body at all. Felt like I’d been drugged in the morning, and that was the least of the side-effects. So you’re still on that, along with the other ones? I do agree that things were being masked over with all those meds. Most seem just to be for pain relief, like co-codamol, gabapentin.

    I’m angered for you that you’ve not had the scan yet. That should be done as a matter of urgency, surely to shit. Do you know if it’s the nearest hospital to you that you’ve been referred to? Might be worth a call to chase up, just to enquire where you are on the waiting list (I’m sure you’re on there, but just to be on the safe side).

    The issues with mobility, numbness, pins & needles, sound neurological or nerve-related. Has this been shortly after your first vaccination, or some time after? I get what you mean about wanting to leave it to the doctors and to have faith in them, and I don’t want to push because it’s totally not my place, but I suppose my experiences have made me desperate to push. I don’t have faith in them, though you do get the odd good duck. Even my mum’s worrying problems lately have been appallingly dealt with because they don’t have a clue what’s wrong either. It’s been me pushing them to do something, me suggesting certain prescriptions, that’s been moving it along. I know that if – IF – you need to fight because they’re not getting anywhere with it then you can. You’re very capable and you know your own body better than anyone. I’ll be keeping my fingers crossed that they come up with some thoughts on this and that the scan comes around asap.

    I’m always here if ever you want to talk, too. Sending my very best wishes your way, James.

    Caz xx

    • Hey! Thanks for your comment.

      Yes, I’m still on the Amitriptyline. I don’t think it does anything but then again, the combination of medication I’m on currently aren’t working very well.

      In respect of the scan, I rang the hospital the referral had gone to at the end of the first week as I naturally expected some form of communication by then. They told me up to 4 weeks, which is this coming week.

      It all started about a month after my first vaccine so not long after.

      I have a lot of faith in my GP – it’s more the waiting around for a scan. We do have a bigger hospital nearby but they won’t refer me there as I’m still mobile – well that’s very much decline, so I may ask if I can go there, should a scan not come through soon.

      It certainly sounds all neurological and nerve related. The guy I’ve been watching on YouTube and his symptoms really hit home.

      Thank you for your kind words, and I’m always here if you ever want to talk as well as I can see you have a lot on too, health wise.

      James xx

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