Painsomnia affecting every day life

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

8 Replies

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  • Good morning TianneD28, waking up from a few nights of little sleep I can really feel for you xx My daughter like me has EDS, but with a lot of spinal involvement and worse pain than me, and has been on the pain relief merry-go-round. She has recently been prescribed Gabapentin (Neurontin) and says after couple of weeks of getting past initial side effects of sleepiness and whoozyness, which did go away, they seem to help a lot.

    I hope others on here are able to give you more suggestions too.

    xxxx Tricia

  • Thank you for your advice Tricia 💕 my rheumatologist said my spine is very hypermobile so that could be why but my hips are really playing up these last few months and my hip pain began after a car accident which then led to my eds diagnosis but prior to that I had no problems, my old GP was going to try gabapentin but she's left the practise now so I'm unsure if another dr will do that but I'll have to wait til tomorrow to find out xx

  • Hip pain was a lot of my daughter's problem (she has scoliosis & chiari) and it was doctor at a pain clinic who prescribed the Gabapentin, stupid question but have You been referred to one? xx

  • I'm under the RNOH for it but they can't actually do much for me until my GP finds the root of my hip and spine pain as they can't order images to be taken they can only request our GP does it then send the results to them and they will then advise the GP on what to prescribe next but of course my GP is being useless and blaming it all on my eds and not hearing that this began prior to me even knowing I was hypermobile and only came on after an accident xxx

  • Of.s! Why is it all so disjointed? No pun intended! At an orthopaedic hospital and your GP runs the show (my GP is useless too, and she's head partner and other's follow her 'hypochondriac' mantra😞) My daughter's general rheumy at local hospital referred her to pain clinic, perhaps your GP could refer you to pain clinic, I don't know, perhaps someone on here could clarify that! I am so disgusted with way i've been treated by my GP surgery I would complain, but we are in process of moving once new house is made livable, and hoping that next surgery is staffed by empathetic humans! 💓💓

  • I am on tramadol, which helps me sleep like a log at night. That is its main benefit. It does also somewhat reduce daily general pain. My husband can take 4x my dose and feel no effects at all, so it obviously depends on your physiology. I would definitely try it, and you'd need to try for a few days, especially if you get any spaced out or sick feelings from it.

    Literally the first night I had Tramadol I slept soundly for the first time in 8 years. That is a long time with insomnia (due to pain), and must have contributed a lot towards my daily pain.

    Cocodamol does nothing for me at all.

    (written sitting in my dressing gown, waiting for the tramadol to deal with the pinging sharp pains in both hips this morning - will follow up with paracetamol in an hour which you use as a booster for it)

  • I do recall at the age of 13 I was prescribed tramadol and it did zilch for me but I'm unsure of the dosage which was probably low due to my age, I've tried naproxen and celecoxib which again did nothing and my dr has me on 20mg amitriptyline but it makes things so much worse and really messes about with my pots and I think this is what's causing my frequent dizzy spells. I was told by another dr not to take it due to having pots but this other dr tells me it's a low dose so I'll be fine taking it but after the first day I felt the negative side effects come on again :/

  • Naproxen damaged my stomach lining over 6 months and now I cannot take any NSAIDS - some people are resistant to the proton pump inhibitor you take with it. If it agrees with you, it should be removing a lot of pain-causing inflammation.

    The amytriptyline should be helping you sleep and if it isn't I'd ask the GP for something else. You can take tramadol with it, I understand.

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