6 Things They Don’t Tell You When You’re Diagnosed With Chronic Pain

When I was diagnosed with chronic facial pain, I desperately searched around for hints and tips of how to cope with my new life, but I couldn’t find anything, other than odd bits in different medical forums. I wish I’d had someone to tell me these things.. I’ve been there and muddled through it, so you don’t have to..

The medication can be just as bad as the pain (but you’ll probably still take it anyway!)

Yes, I have often weighed up whether the side effects of the medication are actually worth the edge they take off my pain. My pregabalin makes me drunk and dizzy, my amitriptyline makes me so unbelievably drowsy and my codeine makes me sick. I would have to say the worst side effect is the dehydration I experience from my night medication – I wake up with a dry ‘hangover’ mouth every morning, my mouth so dry I can barely speak, and my lips are often sore and cracked. Invest in some good lip balms and moisturiser! Sometimes I can’t decide whether I’d rather be in pain or be up to my eyeballs on medication! The only deciding factor is.. it works & I need it!

You have to be pushy with doctors, appointments, hospitals, clinics, tests

I’ve been quite blessed to have such a lovely GP, but that doesn’t mean I haven’t had to do a lot of ‘fighting’ to get myself through the system. The waiting time on the NHS for a non-urgent referral is currently 18 weeks. I personally couldn’t wait that long to be seen by a neurologist, to get an MRI done, to be seen by an pain management team. With an lot of pushing, phonecalls and pestering all the right people, I had an MRI done within a few weeks of my pain starting, a neurology appointment a couple of weeks following that and a pain clinic consultation a few weeks after that. I learned to refuse to take ‘no’ for an answer.

The local pharmacist is your new best friend

The usual waiting time at my local GP practice is around two weeks for an appointment, or if you opt for a phone call from your GP, they will call you once at any time during the morning and if you miss the call, they don’t try again. Some questions don’t actually warrant a chat with the doctor – there are actually plenty of questions that can be answered by your local pharmacist. Your pharmacist specialises in medication; they know which side effects are normal, what other people on the same medication have complained about and tips and tricks for managing on new medications. My GP had never heard of my condition before.. but my pharmacist already knew plenty of people struggling with the same medication I’d just been put on!

It’s completely normal to feel depressed

You’ve just been told you have an incurable condition – you’d be mad to not be upset or depressed about this. There’s absolutely no shame in seeking help for a low mood following a life changing diagnosis. Your GP can either refer you or recommend you for counselling, or you may be able to get couselling at your hospital’s pain management centre.

You find out exactly who your true friends are

You will be AMAZED at people who appear out of the woodwork with support for you. I posted on instagram about my condition, using the hashtag #trigeminalneuralgia and I was immediately private messaged by other people experiencing the same or similar problems. My relationships with my friends and family have been strengthened so much.

Your condition will become an important part of you, but it doesn’t define you

I’m not the girl with Trigeminal Neuralgia, but I am the girl who can’t eat icecream and sometimes struggles to brush her hair.. and that’s okay! I’m also the girl who likes jewellery, cats, Sex and the City and going out to eat! My condition is a part of me, but it’s not all I am.

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Trigeminal Neuralgia

8 Comments Leave a comment

  1. Hello TN warrior 🙂 i have TN myself and i know the struggle.. it can be hard but it does help you in finding out who true friends are.. glad i found you :3

    Liked by 1 person

  2. Hello fellow TN warrior! I have TN as a result of surgery to remove a brain tumour. Even after surgery it took a long time for them to diagnose TN and for me to move from Codiene to Keppra to triptans and then some. I also struggled with medications through pregnancy and now when breastfeeding. A few years ago I had Botox (under the NHS- not for vanity!) to try and help me gain more control of my droopy eyelid. (Another after effect of the surgery) and it has helped somewhat.
    Knowing my triggers has definitely helped too
    7 years on from my surgery and I still completely freak out if someone touches my face, or if there’s a cold breeze. I don’t eat ice-cream and always drink water that isn’t ice cold.
    I’ve had a flares that have been so bad that I’ve passed out, days where my husband had to physically restrain me as I was trying to claw my own face off. But it does get better. The TN support network is amazing. Sending love to you x

    Liked by 1 person

  3. Thank you so much for your lovely comment. I’m so sorry you’re in so much pain following an awful surgery for the tumour. You are a super hero!
    Remember were only given as much as we can handle – you must be the strongest person! Thank you for your support. I hope you have a day that is as painless as possible. Sending you all my love back 💜💙


  4. I am going through this exact thing right now, so reading this gave me hope. I was diagnosed just two months ago. I am lucky enough to live with a close friend who also has TN and she has shown me the ropes. The depression has hit hard. I shaved the side of my head so I could get some relief after fighting an attack for nine days straight. I’ve been given funny looks and quite a few jokes where yours truly is the punchline. The meds are hard to deal with because I am bipolar. Some of the meds they wanted to give me would have made me relapse. I am also allergic to all NSAIDS. However, I wanted to say thank you for your wise words. It has certainly given me hope for a life I thought was gone when I was diagnosed.

    Liked by 1 person

  5. Fabulous advice I am having the worse attack ever after 2 years in remission and due to this lockdown not getting any help. Tooth broke two weeks ago and dentist is not seeing anyone at the moment and now my TN is off the scale and phone doctors this morning to be told all appointments for call back from doctors are full today and need to phone back in the morning can’t eat, or sleep and in so much pain

    Liked by 1 person

  6. Thank you for your post. I have been in a month of solid flare ups. I have been fortunate to be able to see one doctor after being told I had to wait until August to see my neorologist.

    The MRI they put a rush on was cancelled due to my insurance not covering it. It was “out-of-network.” Prior authorization paperwork was done as requested by the insurance company. It was denied. I am hoping to get an appeal written.

    In those 30 plus days, my flares take a break during the day, but hit hard from about 4 p.m. and all night. Last night I had nightmares about the pain. Nothing helps.

    As for the isolation, I don’t see people, because I don’t want them to see me like this. I canceled time with my mom recently because I was at the clinic trying to get the MRI needed and my mom took a bad fall. She never recovered and I will never get to see her again.

    The chronic pain, lack of sleep and TN are hard. But, having to deal with insurance approvals is worse. There needs to be more visibility out there about these conditions, so they can be covered without adding more stress to our situations.

    Liked by 1 person

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