Painsomnia and finding the right medication

So I have EDS, POTS, gastroparesis and many other related illnesses. In 2009 I was in a car accident and this triggered my chronic pain and ultimately got me my diagnoses of EDS.

I take cocodamol, amitryptiline for pain and I also use a tens unit and ibuprofen gel. The last few weeks my pain has been at an all time high and affecting me daily to the point I don't even want to shower and I'm a massive germaphobe (I'll get on public transport and press the bell or hold the rails with a anti-bac wipe over my hand or around the rails lol) anyway I'm struggling to sleep and I go to bed after 3-5am and even then it's not a deep sleep it's one of them ones where your eyes are shut but your pretty much awake.

The lack of sleep has caused me to have hallucinations almost every night. One of these hallucinations it was raining in one area of the room and there were birds flying around…messed up I know. The amitryptiline makes my pots so much worse and I'm constantly dizzy and what I'm on now for pain doesn't really help. What medications can I ask my dr for? I'm seeing him on the 31st as I had an MRI for my sciatica which I know the hospital haven't even reviewed yet and it's been over a month. I just want to be able to at least do things at home without being in so much pain that I'm losing sleep over it and feeling like I'm going crazy. When I was 14 I was prescribed tramadol which did nothing for my pain so I don't know if I should ask my Dr to try that again at a higher dose as I presume it was a low dose due to my age at the time.

Thank you in advance to anyone that can help

7 Replies

  • Please consult with a specialist pain management team. Alternative therapies such as acupuncture, Mindfulness, etc are also exploring. Good luck.

  • I'll ask my dr for a referral but I don't think they'll do it as I'm under the rnoh for pain management but they can't see me until they find the root of my hip and spine pain because they think it's not eds related as I had an accident that brought it on and then found out I had eds but had no prior issues

  • Please write down the points U wish to address with Dr: pain intensity; pathways; management; impact on your daily life & family. It's making a case for your referral. No reason why both issues can't be looked at concurrently. There are other meds like pregabalin that help with neural pain & mood. I take 2 copies of things I wish to discuss so that I can give the Dr one copy & I make notes on my copy. I have found CBT & acupuncture very helpful. .

  • Thank you Vina64 I've got apps in my phone that I keep logs with as even handwriting is painful for me. I leave home only when I visit the Drs, Sunday I did a 20 minute walk to the duck pond it took use over 30 mins and I was always behind everyone or had to keep sitting down then on came the stomach pain and dizziness so again I had to sit out but luckily my mum and sister are pretty understanding (when it suits them) so they brought something for me to sit on and made sure to bring salty snacks and extra water for my pots symptoms but at the age of 22 I'd like to for once just be able to go out on a nice day without having to slow others down or miss out on so many activities and social events, I'm at the point where I have more Twitter friends than real friends, I have like 4 real life friends and they all understand how I'm affected but I just wish that I could socialise more, even though I am an indoors person it does get lonely when it's just you, a hamster a cat and the four walls all day every day

  • I fully understand the loneliness & narrowed social field that comes with debilitating health issues. I sense your despair from your post. Stay positive.

  • I feel so sorry for you!. You do need to sleep, it's when you are asleep that healing can occur.

    I have pain because of osteoarthritis but also muscle and joint pain from the medication I take to prevent recurrence of cancer. I'm now prescribed patches which you change every week. the medication in the patch is related to morphine. It means that the pain is kept to a lower level and I top it up with co-codamol, I am not permitted ibuprofen for other reasons.

    The patches are called Buprenorphine Transdermal Patch, I started on the minimum dose of 5 micrograms per hour then this was doubled a month later. Your gp is allowed to prescribe up to a much higher dose if it becomes necessary.

    I didn't find Tramadol could do anything for me at all

    I also exercise each day with gentle stretches and easy pilates moves, plus a half-hour walk (sometimes only ten minutes at a time, three times a day).

    If you can exercise in the late afternoon or early evening before your meal you might be tired enough to sleep better?

    I do wish you all the best

  • Update everyone: saw my GP and he's prescribed me 5mg of Oxycodone to take on top of my 60/1000mg cocodamol dosage, thank you to everyone who commented on this with help and advice xx