Foggy's "Invisible Illness" Support

Pain meds?

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

4 Replies

I wear Butrans opiate pain patches which take the edge off my EDS pain. I also have gastroparesis. I am also just trying a Paingone plus pen which helps too. It takes the pain away for a short time, and I purchased it at Lloyds for £40 this week. Tramadol made me ill, and amitryptiline gave me wierd dreams and didn't help pain. I am seeing a homeopath doctor at the mo too, as I found help for the nausea of gastroparesis with homeopathy after two years. Im openminded to anything. I would ask the doc for Butrans Patches though. Good luck.

1 like

I'm sure those are for pretty severe pain though or a last resort after trying other meds, I've read about the pen thing what exactly does it do?


You hold it on the site of the pain for 30 secs and it turns the receptors off so the pain goes for a short time. It does work, and is worth it for those small amount of minutes to get a bit of relief. The pain patches come in various strengths so you could start with 5!


That's pretty cool I'll have to check into getting one, I've got a tens which helps massively but not always reliable when it comes to being out and about and wearing certain types of clothing, my UCLH notes say

•Severe joint pain all over

•stomach pain when eating

•dizzy all of the time

•Migraines - frequent

•Poor sleep



•Fainting episodes

•Poor temp regulation

•Chronic back pain

•Generalised joint pain and laxity

•instability in shoulders hips knees and ankles

•Foot pain

•Femoral rotation

^ the ever so short list which is my every day life


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