My Spoonie Journey.

Hello my loves! I hope you’re doing well and are keeping your head up in these difficult times. 2020 has been a year of ups and downs (mostly downs) for a lot of us, but I have had one big piece of good news; I finally got a diagnosis for my chronic back pain I’ve had over the last 4 years.

Some of you may already know that I am a ‘spoonie’. If you’re not familiar with the term, ‘spoonie’ is a term that can be used to describe someone who lives with a chronic illness and pain. From what I’ve heard and experienced, it usually takes people up to/around 8 years to typically get a diagnosis when it comes to chronic pain, illness or autoimmune disease.

So, when did all of this start for me?

When I was around 15 years old, I started to get chest pains that were predominantly in the left side of my chest, right where my heart is; so naturally I was pretty concerned with the fact that I was getting stabbing pains where my heart is. It was the kind of pain that I couldn’t fully pin-point, it was under my left breast, deep and it felt like it was almost at the back of my ribcage, a bit like if a shard of glass was being shot through my chest. What’s worse is that it felt like no one believed me when I said I was having intense chest pains pretty much every day, sometimes preventing me from moving.

When I went to the doctors I was told that it’s anxiety and it should go away once I’d finished my GCSEs. Well it did not. I lived with that pain for another 3ish years, and then the pain began to fade away; then when I was 19/20 I found a lump in my left breast. Right where the pain had been. This led to getting my boobs out for several people (which is not as fun as it may sound I assure you!) and then having two rounds of ultrasounds on my boobs to make sure everything was ok. It was then that I found out that I have something called a fibroadenoma, which is a lump in my breast, but lucky for me it is benign. It just means it’s something I have to keep an eye on, incase anything changes. One thing I did find out at that time that fibroadenomas can cause pain, which would explain the pain I had in the left side of my chest for the previous years.

So, what happened next?

Well everything seemed fine for a little while, and then towards the end of 2017 I started getting a dull ache in my back. To begin with I just assumed that maybe I’d pulled a muscle in my back and after a few weeks all would be well again. But boy oh boy I was wrong. The next few months turned into a year and my pain had gotten a lot worse and had spread to more areas of my back. You might think that after a year of back pain I would feel fine about going to the doctors to get help, but it took a few more months for me to recognise that my pain is valid and I shouldn’t have to live in pain everyday not knowing what’s wrong. And I think part of the reason why I felt my pain wasn’t valid was because of my past experience not being believed by doctors, who told me I was too young to have anything wrong with me.

Once I finally went to the doctors in 2018, I was told that everything seemed fine with my back, and I’d probably just pulled something or bruised myself at some point. After all, how could someone have back problems when they’re only 22 years old? About two more months went by, and the pain was getting unbearable at this point and I now cracked like a glow stick whenever I moved, so I decided to go back to the doctors. After a fair bit of time trying to actually get an appointment, I saw a doctor who told me he thought that I had hypermobility in my back, and that that is what was causing my pain; so they sent off a referral for physiotherapy for me so they could have a closer look.

Fast forward about another month, and I get a letter in the post from the nhs, which I was hoping would give me an appointment date and time but in actual fact it just gave me the phone number of the physiotherapy ward for the hospital that I could’ve gotten off the internet myself.. so after calling up that number it was another 2 months before I could get an appointment with a physiotherapist.

So after much anticipation and waiting, my physiotherapy appointment finally came round and I was hoping I would finally get some answers. I went into my appointment, saw a physiotherapist and was told I had extreme joint hypermobility in my spine and that I need to strengthen up my core and glutes in order to get some pain relief because my muscles had seized up in my thoracic spine (mid back), and I was given some exercises to do at home and then some standard physio classes to take part in over the course of 6 weeks.

Going to the gym for physio.

This did seem like it was a likely cause of my pain at the time because when I was little I had to have physiotherapy due to having problems with muscle tone and not having any in my stomach or bum. In particular my left butt cheek because when I was a toddle I didn’t have any muscle in it.. I had a big dip where a butt cheek should’ve been. I also walked with my feet completely turned in and had to do physio for months with my mum every single day to correct my legs as much as possible.

Having no muscle tone and issues building up muscle tone means that I would have to workout a whole lot more that other people to get even a remote change in my body; and this is part of the reason why I thought that the physiotherapist was correct in their diagnosis (it’s also why I’ve accepted I will never ever have abs and that’s ok).

So, the next 6 weeks go by and.. no change, well not completely true, I did build up my fitness quite a bit which was good, but my pain actually got worse. At this time though, instead of telling the physiotherapist that everything was getting worse, I said I felt a little bit better because I didn’t want to disappoint the therapist. So I left physiotherapy and decided to continue trying to build up my muscle tone by joining the gym and going 3 – 4 times a week, and after that didn’t help and a lot of googling at what else could be wrong with me, I decided to seek out an osteopath.

When I went to the osteopath I was then told that some minor realignments, deep tissue massage and acupuncture could potentially help with my pain after a few months of consistent work. Now, don’t get me wrong, I loved these regular appointments because I essentially got my bones cracked, a massage and then some acupuncture that as super relaxing, but they did nothing for my pain. And at £40+ a pop for 45 minutes on an apprentices wage, I couldn’t justify continuing to go considering I wasn’t seeing results.

Next I decided to go back to my doctors once again. And it was in this appointment that I was told that I look fine and workout so the pain can’t be that bad, maybe it’s anxiety or in my head, because I’m too young to be in that much pain, especially in my back. I was once again told that it’s probably joint hypermobility, was sent for some blood tests and was prescribed some heavy duty painkillers and anti-inflammatory meds.

When my bloods came back fine and my inflammatory markers within the correct range, I decided not to take the drugs that were so willingly thrown at me to shut me up and was pretty frustrated and ready to give up on trying to find out what was causing me so much pain.

I even started to think that maybe this was all in my head. Was I just trying to attract attention? Or is my pain tolerance super low? Maybe it was my fault I was in pain, I can’t be doing everything I should be to help myself.

The medical professionals couldn’t possibly be wrong or dismissing my pain, after all, they’re trained and are experts unlike me and dr google.

I essentially gave up trying to get help at this point. Appointments every single month and paying out for prescriptions I wasn’t using because they were just being thrown at me to shut me up was getting so discouraging and expensive.

Here I am in a very sexy hospital gown on my birthday,
about to go for my first mri scan!

It got to the point where I was crying from pain, unable to walk more than 10 minutes without being in agony and having to take time off work because I could hardly move for me to go back to the doctors and ask for them to look again. And I was given a phone call appointment with a doctor who gave me some blood tests. When I called them up asking to discuss what my results were I was told that they were fine and that I probably have chronic fibromyalgia and that I should take more pain meds daily and try tai-chi. After that phone call I think I just sat and cried for about 2 hours, thinking what a load of absolute shit that call was and that they weren’t even going to try and look at any other avenues before diagnosing me with a crushing incurable illness.

After a good cry and letting my frustrations out, I decided I wasn’t going to take that as my diagnosis without further tests. So, with my birthday coming up, I asked my close family for money to go towards a private mri scan. By this point we’re in January of this year. Using money from my birthday and all of my savings, I managed to get myself an mri booked to take a look at my thoracic spine where the pain originated and where my spine continually pops and cracks like mad. And you’ll never guess what day my mri was booked.. my birthday. My actual birthday. Kinda funny when you consider that I was that desperate to get answers that for my birthday I essentially asked for an mri scan. So, on my actual birthday, in the evening (when I should’ve been having a nice dinner or something) I was in a metal tube surrounded by deafening noise feeling incredibly claustrophobic.

Three days later my results arrived. Pictures and report included. It said I have mild lower disc degeneration, TOTALLY NORMAL FOR A 24 YEAR OLD.

The next day I called the doctors up yet again.

And by some miracle, I finally got in to see the only doctor in my entire practice that I was yet to meet. I told them what the other doctor had said to me, and that I had paid for an mri and gave him my results. It was then that this doctor listed my complete history from my back and then asked me to talk him through what had been going on, which nearly made me cry. I was finally being listened to. Finally being heard.

It only took going through every single doctor in my doctors practice to get to this point..

This doctor then told me that I shouldn’t have been diagnosed with fibromyalgia without exploring all other possibilities, and that my lower disc degeneration is to be expected with joint hypermobility, however this disc degeneration is 10 years too early even in this case. They even said that at 24 I shouldn’t be in this much pain and pain meds are not something I want to be on long term. I was then poked and prodded, and this doctor said they would refer me to rheumatology because sometimes blood tests don’t always show when something is wrong.

After that appointment I’ll be honest, I was finally feeling hopeful. I’d been listened to, my pain validated; I wasn’t imagining this pain, it was real. So, a month goes by and I get a letter, my rheumatology appointment is at the start of June.

Then covid happened. Lockdown is in full swing. Everything feels a little like it’s going to shit.

Then around April I get a letter saying my appointment has been changed to a phone call. Safe to say I was gutted, angry and disappointed beyond belief. I did understand, with covid and everything I was expecting things to change, but that didn’t change the fact that I was disappointed that the appointment I’d waited nearly half a year for, was now going to be a 5 minute call.

So, we get to June, and my phone call appointment happens, after about 5 minutes of chatting the rheumatologist asked if I could come in and see her that day, in about an hour and a half’s time. Lucky for me I live about 10 minutes away from the hospital by car.

Along I went to see the rheumatologist in this deserted hospital because of covid, and she takes a look at my back, has a poke and prod and then right there and then says she’s going to send me for blood tests that day and thinks sending me for an mri to specifically look at my spine is a good idea!

Bloods taken, about 2 weeks later I get a letter with my date for my mri – the end of July. Here’s where things finally start picking up and getting better for me, don’t get me wrong, I was and still am in a lot of pain, but I was closer to getting answers than before and things were finally starting to happen. July came round and I got to go to the still deserted hospital, put on a very sexy gown and got my mri done.

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A special thanks and mention for the lovely mri ladies who played music loud enough to actually drain out most of the machine and for having calming lighting in fading through the rainbow colours to make this scan a lot less stressful and claustrophobic. Y’all were amazing!

About 3 weeks go by and I get my results in the post!

And after years of back pain and many misdiagnosis, I found out that not only have I got some lower disc degeneration, but I also have congenial ‘reversal of the cervical lordosis’.

A mouthful I know. But what that essentially means is that the curve in my neck is going the opposite way to how it should be, and it’s something that I have no control over, so it’s not something I have caused from bad posture etc. So, the curve in your neck should be like a wide capital C, but mine is the wrong way round; most likely causing the rest of my spine to be aligned incorrectly and straining my muscles. And that is probably what has been causing my back pain for so long and why nothing I’ve been trying has been helping because all of the focus has been going towards the wrong part of my spine.

So, although I have sadly got something wrong with my spine that I can’t do too much about, I can’t quite describe how happy it made me actually getting a diagnosis after so many months of waiting and stressful tests. That may sound weird to some, being happy about finding something wrong with my spine, but after years of being told I’m too young to be in pain and that I look fine so I must be, it was a relief.

Now that I’ve finally found out what’s going on with me and my health, I’m hoping I can find a way to manage my pain and I’m looking into if there are any ways I can reverse the reversal of my neck curve!

I’m now waiting on an appointment to discuss what we’re going to do about my spine which is in December, so I’ll definitely give you an update in the new year. Part of me still can’t quite believe I’m so many years in and have only just found out what’s been causing my pain, but that’s a surprisingly short period of time compared to some of the stories I’ve heard; so I do feel very grateful for that.

And that is my spoonie journey so far! It’s taken years of not being believed, a lot of tears, days in bed and days wanting to just give up, but I feel like we’re finally getting somewhere.

Over the last few years I’ve learnt the importance of allowing yourself to take a break and that you do need to listen to your body. And if I need a day in bed, I’ll take a day in bed! You’ve got to be kind to yourself, if you’re having a bad pain day, it sucks and trying to be everything to everyone just isn’t always realistic and ignoring your pain signals can sometimes (usually always) make it worse the next day. So take a day when you need to, and know that it’s okay and you’re not alone.

Are you a part of the spoonie gang? I’m super interested to find out how long it took for your to get diagnosed, and how it made you feel. Let me know in the comments! And with that, I think that’s enough chattering away from me for today. Have a great weekend my lovelies and please stay safe!

Love,