My Spoonie Story

Today I am going to share with you all my spoonie history, as mentioned in my previous blog-post on Fibromyalgia (FM), I was diagnosed with soft-tissue rheumatism in February this year. It’s taken a lot to get to this diagnosis, and I’m still having massive complications to accepting I have a chronic illness with no cause or no official treatment.


Seeing others on WordPress sharing their spoonie stories has inspired me to do the same, more specifically, personally knowing some of these bloggers such as Writing Wolves (Lucy), with her insightful Medical Mondays, including the newest post about her experiences with Fybromalgia. I found it was a very difficult read for someone who shares the condition too, thus today I won’t be sharing much on how it affects me now,  for I’m still working that one out myself, this post will more so be where I piece my medical history together to explain how I got to my diagnosis, so lets begin.


My earliest start to reporting to my GP about unusual pains goes back to when I was 14 (2009), this was more so to do with my knees and hips aching most days to the point I was finding it difficult to sleep. As a rather “active” teen, (I literally would only walk to and from school/seeing friends, and occasionally skateboarded) it was brushed off that it was simply growing pains. I believe this went back and forth for a few months, to the point my mum suggested seeing her chiropractor (Mr Edwards), located in Ramsgate~ he was actually generous enough to give me a free consultation. As a result of this, he noted how one of my legs was noticeably shorter than the other along with my back being slightly out of alignment, presumably from the one leg shorter than the other issue, I ended up leaving his practice room with a heel wedge to hopefully ease any pains.

A year later in June 2010 (aged 15), I came down with, honestly to this day one of the worst illnesses I’ve had, I remember most of it so vividly, but what I do remember of it was the pain I was in. My skin was so sensitive to the touch, and the pain that radiated in my head made it so difficult to see or hear, it was my year 10 exam season and I remember walking to my math examination, then being helped into a car by my mum, then being in A&E ~thats as much detail as I can offer. My mum made the assumption to A&E that I could have meningitis, to my knowledge they didn’t test for it, and I was given a nice dose of codeine to help with the pain~ it was like Christmas for my 15-year-old self… This is where it started to get funky for me.

Since this hospital visit, I started developing blackout migraines, at first, they weren’t too severe, it wasn’t until I started college in 2012 (-2014 aged 16 to 18) that they started affecting my studies and ability to attend my course. Because of this I took some personal

mde
Referral letters between myself, Dr Dowson and my GP.

time to research migraine/headache specialists in the area, eventually finding a headache service located in Palm Bay, I asked my GP at the time for a patients referred to meet Dr A Dowson of Bethesda Medical Centre, funny story how I got this referral actually ~ I lied explaining a friend of mine had visited him with a positive outcome, even funnier story is when she reads this post (and I know she will), back to Lucy, this on you for that one *haha.
I’d love to go back to Bethesda to thank Dr Dowson, to this day he’s been the only Dr that has taken my pain stories seriously, after a full consultation he suggested to my GP that I could have a pituitary issue, thus an MRI was conducted, specifically checking that area. Luckily nothing showed up and it marked the start to using medication to help with my pains, I was started on antidepressants ~ amitriptyline. After maxing that medication out in the same year of having it prescribed (2014) I was started on nortriptyline (another antidepressant), both sets of medication weren’t working for me, and you could say I rage stopped and detoxed from both sets of medication until 2016, last year.

Between all this (2012 – 2014), I was having sexual counselling alongside counselling with my college, not particularly sure why I was referred to a sexual counselor, but during all my back and forth visits to my GP I was also experiencing very severe pains during intercourse, furthermore my lady region basically hated me, and some of my pains were so severe (alongside my migraines) I was finding it difficult to walk etc. At the time of my sexual counselling, I felt pretty offended that they thought my pains were psychologically induced, also referred to psychologically induced pain syndrome (PIPS) but hey ho I went along with it until the counsellor went into some pretty personal stuff which ended up making me feel so uncomfortable that I stopped attending.

**writers comment here, my sexual counselling was a referral, whereas my counsellor with my college was a suggestion from a tutor, and essentially the counsellor I had at college was in training so you could say we were helping each other.

My medication detox started in late 2014 and finished in late 2016, personally between this time I was rather dandy with my pains, I feel this was related to how active I made myself, as a female who was on a weight loss journey I did all the above with exercising, but it didn’t mean I’d have my moments where my mum would actually have to collect me from various locations as I couldn’t stand or walk. Also between this period in early 2016, I was given a new GP who I’m now currently with, although my rage stop with my meds I hadn’t given up on racking her brain with my various pains. During attending maybe my second visit to her about a sprained ankle I decided to bring up my history with it all, she brought up the most random assumption to it all ~ her exact words were “don’t you think these pains are related to your rheumatoid arthritis in your legs?” in a flustered rage to this I was very confused by this, and it turned out my previous GP had some nerve diagnosing me with this condition aged 14 without a thorough checkup or actually telling me.
Can tell you all now you would have not wanted to experience the tension in that room, my outcome of her being very unimpressed was positive though, and it was straight onto blood tests, scans and check-ups for the next 5 months. The stages of this started with;

  1. blood tests to check for all sorts, such as; endometriosis, cancers, MS etc. which I got the all clear for .
  2. next was onto scans, I had a few x-rays conducted on my back (pelvic region) and legs, which ended up being fine , it was then onto ultrasounds, again on my legs, but they also scanned my digestive region as I complaining about needing the toilet more than to the point it was uncomfortable when I couldn’t go, the outcome of these scans showed I pretty much have IBS.
  3. the last checkup was at the QEQM hospital with a rheumatologist, who did an all-around assessment of my spine, joint responses and more specifically my posture (which he wasn’t too pleased with), he acknowledged how my spine bends inwards more than it should, known as lordosis, thus confirming I’m a spoonie!, which inevitably explained my IBS (due to it bending inwards on my intestines).

When all the results were sent back to my GP there wasn’t a massive outcome, which has lead to my fibromyalgia diagnosis this year on the 17th February. And to treat it I am taking Neurontin Gabapentin 600mg x3 a day, but I’ll be moving onto pregabalin soon as the gabapentin is ineffective.

I hope you enjoyed reading my spoonie history, in the future, I will be readdressing fibromyalgia sharing how my FM as affected me, some subjects I hope to address is having this condition while working and attending education.

Until next time.

**writers edit, what is a spoonie? A spoonie is involved with someone who suffers from a chronic illness (long-term illness), it can also be associated with the shape of ones back bending inwards more than it should, known as Lordosis.

emma

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6 thoughts on “My Spoonie Story

  1. Stephanie

    Excellent read The struggles to get a diagnosis is frustrating and to find a GP that actually really does have an interest in your health and help find a solution is rare!!!

    Like

  2. I had no idea about you using me to get to see a doctor, you minx! I’m glad it worked though.

    It’s mad how similar some of our experiences are – the curve in your spine is called lordosis; I have it as well & it’s what causes my digestion/bowel issues too… As well as my lower back pain & it’s caused my facet joints to become inflamed, which I’m waiting for injections for. I’ve not been diagnosed with IBS but I’m sure I have it & doctors have said they think my exaggerated curve is why I struggle with emptying my bowels etc. I also have it in my neck & my specialist thinks it’s the cause of the burning in my shoulders & neck – for me, my spine is more like the shape of a spoon than an S because my neck is too straight & my lower back is too curved! (https://www.healthline.com/health/lordosis#overview1)

    I hope the gabapentine works for you, I came off of it because it did next to nothing for me but I’m on morphine now so I hope you don’t have to do that too 😩 I’ve had amitriptyline as well & am now on nortriptyline 😂

    I also remember being told everything was in my head, which is probably one of the most frustrating moments of the past 5/6 years! And I was told that my spinal scans were normal by doctors & then a receptionist told me I had a hole in my spine?! 😂 I didn’t find out what that meant until I got the Syringomyelia diagnosis nearly a year later 🙄 so I understand your anger over not being told about your legs! The medical care around here really can be horrific & I hate that you’ve dealt with the same bullshit I have.

    Well done though, for writing this, it takes so much strength to put this stuff out in public so I’m really proud of you – you’ve come so far in the last few years & it’s amazing to see you starting to get used to the idea of having fibromyalgia because I know how difficult it is. Stay strong girl, you & me are warriors ♥️

    Liked by 1 person

    1. I love seeing your responses Lucy! It’s nuts how many people’s are similar 😮
      I’m now nagging my doctors for a scan on my spine as it’s been causing all sorts of issues lately. lordosis! I knew it had a name but I couldn’t remember what the rheumatologist said to me ahha.
      I’m on the max dosage for gabapentin now, and it still doesn’t work 🙄 absolutely useless! Haha

      Liked by 1 person

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