Awake and struggling

Once again I can't sleep, am in too much pain, even Oramorph is not realy helping. Still mad about my appointment being cancelled at the pain clinic after waiting over a year.

I have tried my Tens, tramodol, dihydracodeine, oramorph, gabapentin and tonight nothing seems to be helping.

I just would like some respite and rest.

Hope you all are having a reasonable night.

D

23 Replies

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  • Hi same, just I'm on loads of meds. Is the dose of Oramorph enough for you ?

  • Wish I could have iv morphine, maybe a full anesthetic would be nice, I could just have a few hours break!!

  • Hi.

    I am awake too.I had a bad fall in the house on Saturday night.Ended up with lump on head a huge blood blister on right big toe and broken big left toe.

    Feet are quite painful but can't go to bed as I cannot stand the weight of the duvet on my toes it's unbearable so I have camped out on sofa since sat night.

    Not ideal but I can't stand the risk of my husband knocking my feet with his in bed and I am restless myself at present so I will keep him awake

    Took painkillers earlier and not worked so sat here watching Mexican cooking program with a glass of wine---- aaarrggghhh!!

    It's going to be a long night!

    Crusee

    XX

  • Sorry you are awake. Pain has woken me. This what usually happens going into 6th day of patch and not lasting. I have just got up and put a new one on xx

    Jen yuk

  • Hey

    Sorry to hear that you are in a lot of pain as well. Because I am so inactive due to inguinal neuropathy, my Fibromyalgia is getting worse.

    Desperately need to exercise, but every time I try my pain quickly hits a 9/10.

    Hope you get some sleep.

    Duncan

  • this may sound stupid but it does work as i do it with very painful ingrown toe nail on my foot if my friend stays over and sleeps at mine, i put a cardboard box under the duvet so that im protected from the weight of the duvet or my friend bashing into my toes. a box just big enough to place over your foot and sturdy enough to protect it. just cut a bit out and place it over your foot. that broken toe sound terrible i can feel your pain, how on earth did you fall i know its easy done especially when im on pain killers the other day i made a great organic vegetable juice with my juicer and i like to run it through the sieve as i have gall stones and have problems digesting to much fibre at a time or fat, so i just got the juice an poured it into the seive without putting a glass there to collect the juice i was nearly in tears as i poured all my organce juice down the drain, so had to clean the juicer and go to the supermarket and get more vegetable and start all over again oh i was so upset. i think its the pain killers with me im forever bumping into things as well. its a good job we can laugh isnt it, bless you and try and be careful. i mean that in a nice way. ❤️

  • The cardboard box sounds a great idea! I will give that a go tonight as still camping out on the sofa,but think I may need a bigger box - everything hurts now,not just the toe.

    I have been trying to remember how it all happened.It all seemed to happen in slow motion but I couldn't do anything about it.I must have tripped over something or caught my foot in a chair - really haven't got a clue!

    I have come out in bruises today so the pain is slightly better but have been hurting in places I didn't know existed.purple hip,purple elbow,purple wrist, and the biggest purple knee you ever did see- sounds like a fairy story doesn't it.Tell you what though I don't look anything like a fairy.I look more like I have just done ten rounds with Henry Cooper.Hubby is nervous about leaving me in the house on my own now -3 storey house so not the best with having mobility problems.I am still really shaken up.I haven't had a fall like that for quite a few years and then I was able to get up on my own.which I wasn't on Saturday night so thank god my hubby was here.

    Sorry you tipped away all your organic juice .I have done daft things like that and not realised until it's too late,so annoying isn't it?

    - I sometimes think these pain killers have a lot to answer for

    Take care,and thanks for the good idea.

    Crusee

    XX.

  • oh i know that feeling when it happens in slow motion and we are helpless i nearly laughed when you said you looked at though you had done ten rounds with henry cooper. its a good job we have our senses of humour as i think thats what keeps me going, i'v got some bruises as well and dont always know where i get them all my love that was a nice post thanks, love grace xxx

  • Sorry for you I have just woke with breakthrough pain I've put my heat mat on its unusual patch doesn't need changing until Wednesday morning quite severe. I think I might overlap it.

    Try not to worry to much about your appointment. Think about something positive you are going to do ring up the hospital and go straight through to pain management and tell them you can't wait any longer you need an early appointment asap as you have already waited a year 😡

    Jen x

  • Hey Jen

    I'm trying not to think too much about my appointment. Just wish I could get a little reprieve from pain,

    Duncan

  • Yes I understand feel for you. It's always worse at night and everyone else is asleep. When nothing is helping nerve pain is very difficult to control.

    I know mine/patch is wearing off I have the nasty pain through my hip lumber spine groin buttock & right thigh. Horrid. I'll just wait to drop off again

    Feel for you there is nothing worse than chronic relentless debilitating pain

    Jen x

  • Sorry to hear your news it's vey upsetting having that appt at the pain clinic cancelled do you think that this is adding to your pain? I think it will be I'm just getting into bed myself and heard the email on my iPad what I do at nigh,especially if I'm in any kind of pain physical or mental is I go on utube and select videotapes for relaxation or pain relief. The thing is you've got to try and accept this as that's more than half the battle,I know it's hard but get a tape to listen too that will take your mind of it get a talking relaxation one it talks you through how to relax and let go of worries and might help the pain as well as pain causes us to tighten all our muscles I really hope that you get some relief tonight ,my thoughts are with you Dunkdl xoxo

  • Thank you Grace, I will give that a try.

    Sleep well

    Duncan

  • Hello Dunk

    Did you get any slepp ?

    Jules

  • Hey Jules.

    Unfortunately not it's 5am and the sun is a rising!

    How about you did you manage to get some sleep?

    Duncan

  • I know the feeling, I have days on end where I get no rest just keep taking my Oramorph Zomorph and half dozen or so meds on top! I get to the stage where I just want to die, then just as I feel I want to give up I sleep but not for 8 hours more like 20 I then wake and the cycle starts again! When I do wake the pain is horrendous, I am unable to move even though I am awake! Normally i really need to pee or the other or even both! It takes an hour or so before I am able to move and when I eventually am able to stand up I am very unsteady, I used to get a friend to stay when I have bad periods of pain and unable to sleep ( on a few occasions I have ended up in a really deep sleep he/she has called me an ambulance) am unable to ask anyone to stay now as had a letter stating that unless I filled in a form confirming I lived alone I would lose my single person's council tax relief! So am now doubly worried " what happens if I am unable to press my carelink button? What happens if I go into a deep sleep and don't come out of it? I could be dead for weeks before anyone checks on me" all this goes through my mind! The pain clinic have told me that as I have had 3 of the injections and they did not last long enough to warrant having anymore, I just have to live with the Pain! Sick and tired of it all!

    I really do understand how you feel,and I really feel for you! I found that if you stand up to your DR he or she will push the pain clinic to bring your appointment forward,it also helps if you tell the pain clinic you would like to be on the cancellation list( if someone cancels on the day of their appointment ,the pain clinic call you and ask if you can get there for the cancelled appointment! Apparently they will only do this twice as they think if you can't get there on a cancellation then you don't really want or need it)!!

  • having someone to stay over with you when you are ill does not mean that you do not live alone, its because you live alone that you need someone when the times are reallly tough. as far as i am aware, that you still count as living alone, when you have someone a few times a week staying because you are ill. as long as thats not thier permanent address and dont pay rent, then you live alone, im so sorry to read what your going throught in your posts, its not right. but then there are so many things that are just bloody wrong now, especially with all those people who are in pain and lost this ESA benefit, this world has a lot to answer for, my prayers are with you and the rest of us who are suffering, its so sad. xoxoxo

  • That's a lot of different medications. I do wonder if some are in conflict with each other. I am really surprised that you have been prescribed Tramadol, Oramorph and dihydrocodeine all together.

    What kind of doses ?

    Dee

  • That's a lot of medication Dunkdl; it could possibly be contributing to your pain & sleeplessness! I know that sounds odd as you'd think, more pain so more meds needed but your body may've gotten to a point of tolerance so no matter how much you take, it won't be having any effect.

    I found the only way to get out of the cycle was to rethink my 'plan' of medication for increased/breakthrough pain. The only way to do it though is to reduce then stop the 'strong' meds to zero. At that point I then had to force myself to introduce one med at a time and see what relief it gave.

    I still use this method today; alongside gentle stretching & breathing techniques - yes I know some people think that they're 'mumbo jumbo' but I definitely find they help.

    It's a daunting thought Dunkdl but I think it's the only way to get these pain relievers to actually give you relief!!

    Start simply with Paracetamol & Ibuprofen (if safe) REGULARLY, spread throughout the day. Paracetamol is really underrated as a drug but it's great as a 'baseline' drug rather than for just when your pain increases.

    Then try one of your stronger meds; don't jump straight to Oramorph though, give Codeine a chance to work (don't forget the breathing!!)

    Could you get some Diazepam prescribed? How about a 'sleeper' like Zopiclone?

    Being a patient patient is a very hard thing to do; I totally understand but you now know that taking all of those drugs don't help. Time to re-evaluate how you approach this.

    Obviously having your injections date cancelled doesn't help but as soon as you get them done and then go to the review appointment, maybe ask to review your medication too? Be honest with them about what you take & when; they may suggest something different.

    I so understand the being awake most of or all of the night thing. It's so quiet outside (depending on where you live of course) yet it's so noisy in your head; pain, pain, pain banging in your skull & the actual pain 'glowing' almost, like a beacon!! The throb can be like a lighthouse light...........

    RJC

  • i think that your right about pain killers as i notice that the more dyhydrocodien i took the more pain i was in, so i cut it right down to the bare minimun however being in a lot of pain and being in hospital about 12 days ago they gave me tramadol and dyhrdo codeine, so i'v got to be really carefull as you say taking to many can make is seem as if nothing is working and they can become addictive, for me anyway, as sitting in the house when the weather is bad its just to easy to take tablets.so i have to be very careful im glad i read your post as i was getting carried away again. thanks. xoxoxo

  • Thank you for all the advice, much appreciated.

    D

  • hi dunkel im thinking of you tonight and hoping that things are a lot better since yesterday and that you get a good nights sleep tonight, your in my prayers. sleep well,❤️love grace xoxoxo

  • Hi Grace

    Thank you for the nice message, I finally managed to get a reasonable night's sleep thanks in part to exhaustion and Oramorph!

    Hope you are having a good day.

    Duncan

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