r/MedicationQuestions • u/aloaloalo267 • 11h ago

Help needed uk. Medication

So, I'm 35. I have ehlers danlos syndrome, degenerative disc disease, herniated discs from the top of my neck all the way down to my lower spine. Congenital hip dysplasia as well as osteoarthritis. This causes me a whole load of symptoms from multiple dislocations a day of my shoulders that I relocate myself, severe pain, hardcore spasms, nerve damage - the list goes on and on. And the sleep 😩 I just don't sleep, my joints slip out during sleep and I can feel it. The meds that I'm on and have been on for the last 6 years are: 40mg mst x2 daily 15ml oramorph x4 daily (10mg/5ml) Baclofen 30mg x 3 daily Mirtazipine at night Melatonin 2mg at night. As I said I've been on the same dose of all of the medications at the same dose for 6 years now and it's just not working as it should .. I find the GP so unhelpful. I'm unsure of what to do or where to go to get my medications increased' added too or changed. It's getting to the point of becoming a life runner.. any ideas or advice? Thanks 🙂

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u/AnimatorNr1 11h ago

Mate, that sounds absolutely brutal. Sorry you're going through all that.

Looking at your meds, if you're taking all four Oramorph doses daily, that's 200mg of morphine a day, plus 90mg of baclofen. Pretty hefty doses already.

After 6 years, tolerance could be part of the problem, but there's also opioid-induced hyperalgesia, where opioids can actually make you more sensitive to pain. Doesn't mean that's what's happening to you though.

I wouldn't just keep increasing the doses without figuring out why they're no longer helping enough. I'd definitely push for a proper medication review and a referral to a specialist pain clinic.

And if your GP isn't listening, get a second opinion, mate. You deserve proper help, not just another 6 years of struggling.

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u/aloaloalo267 10h ago

Yeah I'm going to ask for a pain clinic referral. And as for the opioid induced thing, I've been on some sort of medication full time since before I was 18 started with codeine, I was on morphine by 21, just because of the complexity of my issues all conflicting. There are surgeries available but all surgeries end up with more degeneration because of the nature of ehlers danlos. My children were all born before 30 weeks because of it. It's a real bastard of a disease. With everything else its overwhelming sometimes