Can't sleep been up for two days because ... - Endometriosis UK

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Can't sleep been up for two days because of pain and anxiety

Rosie1989 profile image
5 Replies

Hey Ladies,

What do you recommend I ask my Doctor for to help me sleep or just calm me down? I have to go back to my Doctor soon anyway as she wants to put a mirena in hopefully that mirena works out fingers crossed.

I just got my last slow release dihydrocodeine script filled but have had the worst anxiety because Iv'e had no sleep constant aching and bloated as hell as well as the tearing and stabby pains on both right and left side of lower abdomen.

The dihydrocodeine is taking the edge off my pain, but this anxiety is horrendous I didn't feel safe driving to them chemist today and no sleep is driving me insane also the lady in the chemist who has seen me a number of times always asks why am I on dihydrocodeine and I shouldn't take it anymore in an offensive tone while looking me up and down, didn't help my anxiety and feeling like utter crap I said I'm waiting for specialist referral for suspected endo and I'm in constant pain ... it's not really any of her business what I'm going through at the end of the day is it?

Iv'e tried nortryptyline and some other antidepressants that are supposed to help anxiety they made it worse and had some horrible side effects they were also supposed to help a lot with pain but didn't.

This is the first time in ages Iv'e felt this anxious having the chest pains and all.

I would appreciate any advice and experience you have

Thank You

Rosie1989 :) xx

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daffodil profile image
daffodil

Hi,

So sorry to hear you're suffering so much.Like many of us ladies on here,constant uncontrollable pain can deprive us of sleep and make the whole trauma even worse.After many months of being unable to sleep due to agonising pains while taking 8x dihydrocodeine,max doses of Gabapentin and buscopan.I actually broke down sobbing in front of my Gynae and said that I was at the point of wondering how many pills I would need to take till I got to sleep.She seemed to sit up and listen then and said it was unreasonable that I couldn't sleep and that while she wouldn't give me anything stronger ,she could prescribe a sleeping pill.Wow -I take a small dose of Zopliclone and am out for the count all night! It does make me a bit dopey the next day,but anything to get a sleep.It also means that's I don't need to have another during the night doseage of dihydrocodeine etc so have reduced meds to 3x a day.In fact the sleeping pill is a sort of anaesthetic/sedative and so when I awaken the pain is not so bad that I have to immediately reach for the painkillers to let me get out of bed.I know my Gp hasn't been keen on sleeping pills but it is the only thing that has made this year plus of pain bearable.You could also try some of the herbal sleeping pills,though what I suspect you need is to be in less pain so that you can actually drop off to sleep and not be either not able to sleep or waking an hour later.

Also try a hot bath in Epsom salts,or magnesium oil spray,hot water bottles,or calcium and magnesium supplements to help the pain.Others use Tens machine,accupuncture and meditation.It reminds me that I keep meaning to restart my medittion practice -this helps hugely with pain as it helps to control the anxiety.Stress doesn't cause endo but endo certainly creates huge anxiety as well as physical suffering.

Do go back Gp and see if you can get more effective pain relief.Many are on morphine for pain,though I am allergic and very limited in what pill can have.Ignore that ignorant pharmacist-you should report her for unprofessional conduct.No one has a right to judge as no one can feel our pain.

Hang in there and while you are waiting for referral,try to get help from GP.Can GP speed up your appointment?

Take care,

Rosie1989 profile image
Rosie1989 in reply to daffodil

Thanks for your reply daffodil.

I tried Zoplicone a few years back had no effect on me and left a foul taste in my mouth for days yuk.

Iv'e also tried valarian tea and capsules and herbal teas with all sorts of herbal sleep aid herbs in it.

I also see a therapist every week to talk through issues dealing with feeling like crap and everyday life. Sometimes I have to cancel and make it another day as I have diarrhea problems which the dihydrocodeine helps regulate when I have it.

Can't work Doctor says its a disease that makes you incredibly unreliable (lost my last job due to too many sick days) even tried working part time couldn't even manage that.

Really pisses me off I would just like to get a job and start saving for my future again but feels like I'm a prisoner in my own home

I'm on a semi urgent list to get a gynecologist referral the letter said I will be seen within 4 months. In the meantime I'll be going back to Doctor on Tuesday.

Thanks :)

daffodil profile image
daffodil in reply to Rosie1989

Have you been referred to a pain clinic? Sometimes its worth trying different combinations to find what helps.I have been through a pharmacy of pills and though I hate having to exist on pills,without them I cant get out of bed and spent last October - February in bed,before finally I was given Zopliclone.I so so feel for you,as am in a similar situation though I am in late 40s and at the end of the road for endo treatment and now I am not allowed any more surgery due to my other health issues.So for me it is swallow pills and hope that when I do hit menopause I will at last have less oestrogen.

I havent worked as a teacher since 2003 when I was struck down with what was eventualltydiagnosed as ME/CFS AND chronic pain syndrome.This has hampered endo treatment (which have had since 14yrs) as many of my endo pain where put down to "chronic pain" and I was not listened to .However even if I hadn't had ME and Meningitis,I would not have been able to function with endo,

Go to your GP and say you're at the end of your tether with the pain.Its al lvery well them sending you to a therapist to talk it over,but what you need is to have the pain treated and for that you need a lap to excise any endo,as well as treatments to stop periods.

Hope you have some joy with your GP.

Rosie1989 profile image
Rosie1989 in reply to daffodil

Thank you so much for sharing your experience with me daffodil.

I sincerely hope your pain and suffering goes away soon.

Dealing with the past doctors I've had has really made me lose faith in the whole health system I nearly have a panic attack going in to see my new one, she has been really good and suspected endo on my first visit and was annoyed with the way all the others had treated me but still have the that crippling anxious feeling when I go in there.

I suppose being fobbed off for the last 7-10 years and making out the pain can't be that bad, it's in your head, it's normal, here have some paracetmole and then saying here have some antidepressants they will make you feel so much better, then telling me I have Ibs (irritable bowel syndrome) which I thought finally a name for this pain and other horrid symptoms but every medication I tried plus the diet made everything worse and they still said its definitely ibs ..... what a pack of morons!

I'm always afraid and anxious going to the doctor even my new doctor she seems to be lovely , truly listened to me and specializes in lady bits, I'll be in there on Tuesday fingers crossed It will be a good day pain wise.

talking to you has helped me feel better mentally :)

Once again thank you daffodil xx

daffodil profile image
daffodil in reply to Rosie1989

Reading your experience sounds like mine and its just so upsetting to see that so many ladies are still going through being fobbed off by unsympathetic medics and people in general.I know things have come on since I was 14yrs and spending 2 days every month in bed with my periods -I was told by my Gp that this is why periods are known as the curse and that really I just have to take the brufen and get on with it! At 19yts ,when I was the happiest Id been in my life -at uni with a steady boyfriend,I took what I now recognise as an endo flare and ended up in hospital for 3 weeks having lost 2 stone over a month as was in so much pain I couldn't eat.I was tested everywhere except gynae bits and when the tests turned out ok,it was suggested that it was stress and that I should see a psychiatrist.Well my mum put a stop to that and demanded I have further tests.I had a lap aged 20yrs which showed pelvic varicosity and possible endometriosis but I was told it was merely a hormonal imbalance( suppose that bit was true) and that it would be righted by taking the combined pill back to back.Thankfully this did work for me ,for many years until I had my children and then decided I wished to come off the pill as Id been on it 10yrs.Even then I was unaware I had endo,and was simply tried on various other pills,depo provera then GNRH agonists.Like you I was told all my digestive problems were due to IBS,but went gluten and dairy free and they all ddisappeared but still left the endo pain.I have begged for hysterectomy and excision as it appears I have endo ad adenomyosis buy consultant refuses as says I am near the menopause now and it is too risky given my other medical issues.I am disabled from mE and Meningitis and am on crutches and power wheelchair and have already had suspected blood clots.

Why d we have to fight to be taken seriously.If this was affecting men,we would have a cure by now or at least know what causes it.I share all your frustrations with the medical profession as my life since 19yrs has been as a medical mystery,with misdiagnoses and suggestions that its all imagined.Along the way though there have been some very caring medics,o I try not to let myself get totally disillusioned.If your new Gp is caring try to keep with her,as an empathetic doctor is a necessity.I am not surprised you feel anxious with how you have been treated -but the anxiety/depression is due to your pain and how poorly you have been dealt with raely the other wayround.Even so it is sensible to have this treated as you will cope better when emotionally less stressed.

Have you tried meditation ,like mindfulness?Look online and there are lots free demos.I find it very helpful with the emotional aspects and it helps me to panic less if the pain worsens.

Please feel fre eto pm me as Im mostly around,but if no reply its a bad phase when I cant cope with the computer.

How you get some sleep and do let me know how you get on at the Gp.

Sending you a big hug.xx

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