Still a medical mystery after 2 years of chronic pain

elenacis · March 2021

Hi, I'm Elena, I'm 21, a neuroscientist and I've been living with chronic pain for 2 years. Well technically I've had scoliosis for 10+ years but the pain has been chronic for 2.
When I was diagnosed with scoliosis at age 11, it was only 14 degrees, so only mild. I followed physiotherapy, did my exercises and at my last scoliosis-related appointment I measured 17 degrees then I was told it shouldn't grow after that as my spine was fully formed.
At 19, after getting the flu quite severely, my back pain started being consistent, with pain and numbness shooting down my right leg. It hasn't stopped since.
I started the usual treatment of antidepressants and anticonvulsant and had whole spine MRIs and head MRIs and CTs to rule out things like brain tumours and MS.
Since COVID-19 started, my pain got worse. I lost the ability to walk without aid and the pain got so severe I am unable to rest and I am exhausted all the time.
I've been seen by a neurologist who diagnosed me with FND and sent me to therapy instead. I was seen by a rheumatologist who made me wait months for an MRI and told me I'm too young to be in this much pain and said it's all in my head.
As the wait for tests was so long, I did an MRI privately where they found that my scoliosis has progressed as an adult from 17 to 30 degrees in 2 years but besides that, no inflammation that was associated with the symptoms I had, Numbness in the sacral region along the sacral joint, numbness in leg, and a positive genetic test HLA-B27 for ankylosing spondylitis.
Since getting that news I have fought to get seen by someone more specialised and was finally seen by a leading orthoaedic specialist. He has ordered some retesting of my brain MRI but overall he is still not sure what is causing this much pain, as moderate scoliosis shouldn't cause severe pain.
I was left quite numb after the appointment as I was waiting for a cure- the pain and exhaustion is currently so bad my quality of life is very poor.

As I am waiting for my imaging I would love to hear if any of you are experiencing these symptoms as I am a very complicated case. I am a neuroscientist specialising and did my dissertation on chronic pain and I still don't understand what is wrong. I really want some advice on how you cope with this level of pain and exhaustion every day, and still juggle a life. I am currently a final year student and have a business on the side and am in need of pacing advice!

I hope you all have a pain-free day!

Oxonlady · March 2021

Hi @elenacis, how dreadful for you, I know from personal experience what a torture nerve pain can be. I fully sympathise and no, I don't believe it's all in your head.

At one point, in 2015, I was begging the neurosurgeons to do something yet they didn't believe me. 18 months later I collapsed and then they were forced to operate. They found adhesion scars from previous operations preventing the normal function of nerves, severe stenosis, herniated disc etc. It was a very complicated picture causing Cauda Equina. In their attempts to resolve it, the surgeons accidentally cut through the spinal cord and of course had to stitch it. I had to remain lying flat for around two weeks and I suppose I'm lucky I survived.

My point is that neurosurgeons do miss things. Especially given the fact that scans don't always give the correct picture. They reveal how your spine is when you are lying down but not when you are trying to move.

I'm assuming you've had your CRP blood levels checked? If the level is high then that's indicative of inflammation.

You might find it useful to contact the Ankylosing Spondylitis society for more information and advice.
It's awful if you can't sleep because your body doesn't get a chance to repair itself properly.

I wish I could take your pain away.

I'm waiting for an MRI Scan of my lumbar spine as I've been in a lot of pain recently. All I can do is distract my brain from the pain by doing things I like, such as my artwork, Sudokus, crosswords etc and praying a lot. Diclofenac has helped somewhat but none of the other medications (Gabapentin, Pregabalin, Amytriptilin or opiates) have ever helped with nerve impingement, which is probably what you also have.
I wish you all the best in getting a diagnosis and the right treatment.

janer1967 · March 2021

Hi and welcome

I an sorry to hear what you are going through

I hope you find some answers and treatment soon

I don't suffer with anything like this just wanted to say hi

Cher_Alumni · March 2021

Hi @elenacis and welcome to our online community. Thank you for sharing your story with us and I'm sorry to hear you're no further towards getting a confirmed diagnosis

That uncertainty must be tough to deal with.

I'm not sure if you've heard of the Brain & Spine Foundation however they have a webpage on 'What if I am undiagnosed' that has useful advice for your situation.

Also, with being a final year university student and having a business (wow, wonder woman!), I completely get how you could feel that you need to better manage your demands to look after your wellbeing. Although written by someone with Ehlers Danlos Syndrome, this 'The power of pacing: Managing energy with a rare disease or chronic illness' article has excellent tips including a pacing diary template you could use.

Lastly, has your education provider made any reasonable adjustments for your impairment in terms of extra time for assessments, extensions for submitted coursework or equipment that might help? I realise you're in your last year, but if they haven't make sure to ask what can be done to assist you as you finish your studies.

I hope some of this helps and please do let us know how you get on. We're all rooting for you.

Still a medical mystery after 2 years of chronic pain

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