Pain affecting sleep…lack of sleep causing ... - Action on Pain

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Pain affecting sleep…lack of sleep causing hallucinations and mood problems, Drs not listening.

TianneD28
TianneD28

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

9 Replies

I've also been trying to find something that helps. I'm 29 and I've had back problems since I was 12. I am no longer on medication because nothing seems to help. Over the past few weeks I haven't been able to sleep either. I was up from last Monday til early this past Monday and slept all Monday and woke up yesterday morning. Now I'm wide awake again lol. My back has been hurting so bad I can't get comfortable. I too was hallucinating and had to force myself to shower which is something I usually love doing. If you find something that helps, please let me know and I will do the same

TianneD28
TianneD28 in reply to RoseC88

My dr put me on 5mg Oxycodone to top up the 2 30/500mg cocodamol and 30mg amitryptilines and it does help to relax me a bit more and catch some sleep, have you tried a tens machine? It works great for me I got the brand Kinetik wellbeing from superdrugs and it was £30

RoseC88
RoseC88 in reply to TianneD28

Yes I've bought the icy hot tens unit and that does help sometimes. I thought about going back to the pain clinic but I'm not sure it's worth it.

TianneD28
TianneD28 in reply to RoseC88

I say go back, if they see you've been there more than once then at least your consultant and GP can see that your pain IS getting worse and it's affecting your QOL and a bad QOL can make your pain worse so it's a vicious cycle and that in turn will help you to meet certain criteria to try a stronger pain killer, ask your dr to try an opioid pain killer and discuss the pros and cons of certain types and do a trial week with whatever is prescribed and if that doesn't work then they can at least try something else

TianneD28
TianneD28 in reply to RoseC88

Have a look at this site, it's the pain ladder and what doctors look for before prescribing paineurope.com/tools/who-an...

RoseC88
RoseC88 in reply to TianneD28

I'll definitely ask them that and thank you!

TianneD28
TianneD28 in reply to RoseC88

You're welcome 😊 make a list of the medications you've tried the doses and if they helped your pain as Drs will try and have you do a combo of things so for me it's cocodamol ibuprofen gel heat pads and tens and if that's not helping then I can try the Oxycodone and one more cocodamol an ur doc may give you a low dose of a strong opioid to incorporate into whatever you use for pain relief as the pain killers never kill the pain 100% it has to be a ladder so ibuprofen gel kills 20% tens 30% and opioid will do 50% so it makes a routine of it whilst protecting our kidneys and liver from constant massive doses

RoseC88
RoseC88 in reply to TianneD28

Oh I actually have problems with my liver too 😟 well I suppose I can ask what can be taken with it though, and thank you again! ☺

TianneD28
TianneD28 in reply to RoseC88

You're welcome 😊 I've got liver problems too and had my gallbladder out and renal failure runs in my mums family so my Drs are always cautious with me but they say as long as my symptoms aren't worsening and I get a blood test for liver/kidney function and ultrasound every 3-6months and the results come back the same as last time or with little changes I should be fine to continue taking meds so there is hope for you out there! Fingers crossed your dr can prescribe you something and you can get some relief and a good sleep!

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