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New here and sleep advice needed

Dec 13, 2016 7:59 PM

Hi everyone :)

I am 39 and live in the UK with my husband and 2 of our 3 offspring (feels wrong calling them kids when 2 of the 3 are adults now and the other one may as well be lol). We are a multi-differently-abled family and for the most part just crack on with life, supporting each other. I have CRPS in my entire lower body and possibly my innards, caused by a herniated disc that went undiagnosed for too long. I still have the spinal problems that caused it.

I have an issue I could really use your knowledge on. It used to be that sleep was an escape from the pain. Nowadays in between massive amounts of sleep paralysis (I have the less common experience where you get it on going to sleep rather than on waking), associated embarrassing side effect of SP and neuropathic pain in the groin area that I daren't overtly describe, and general pain, my sleep is now filled with dreams explaining the pain - getting shot, stabbed, having a horrific monster sat on my back gnawing at my spine etc. There's no escape in sleep now. To even get to sleep I tend to go through at least 1 or 2 episodes of sleep paralysis (with associated hallucinations of something evil in the bed with me) and on my worst night it was over 20!

I was wondering if anyone had any tips on getting deep enough asleep (without any more drugs than I'm currently rattling from and which I'm sure are making it worse) that this may subside a bit? Not expecting miracles. Just hard to carry on when you're lucky to get 2 hours a night at the most and that's like a horror movie lol. I daren't ask elsewhere cos I hate looking like a moaner. I tried to tell the docs about the embarrassing part and they laughed and said I should consider myself lucky. Wasn't happy.

Thanks in advance and lovely to meet you!


Dec 13, 2016 9:06 PM

Hi Kathy and welcome to the community, it's a world wide diverse community that feels more like a family.
As it's worldwide community there may be times that it'll be a while before people respond to your posts depending on what time zone people are in and general life getting in the way.
Everyone is so friendly and supportive here and some really good advice as well.
Nothing said here is embarrassing or too much information as chronic conditions affect every area of our life's from pain to incontinence to our sex lives. No one here will judge you on anything and we only want to support you, give tips and advice and to help you celebrate your good times and listen when you need to vent.

Oh wow that is some nasty dreams you're having and the doctor was way out of line talking to you like that.
Have you been put on any new medication that could of triggered these nightmares? As some meds can cause you to have nightmares and/or hallucinate.
You need to go back to your GP surgery and whether you see the same GP or another GP you need to tell them that it's no laughing matter and it's causing serious problems with not being able to get any sleep plus the trouble you're having in the groin area. If you're having trouble with speaking about with your GP then write it down stating what the problem is, how it affects your life and how it's making you feel. You have to be honest with your GP and tell them how serious it is and if they try to laugh it off tell them it's no laughing matter and they wouldn't laugh it off if they were living in your shoes.
You have to keep going back and not let them brush you off because it is not about moaning it's about lifting your quality of life. If you leave going to the GP's for a long while then they'll just assume that you're ok and able to deal with these issues, please keep going back even if you have to ring for an appointment every day to be taken seriously, it's your quality of life that is being affected and not getting any sleep is going to cause you to become run down and cause you more pain, lower mood and high anxiety.
I hope this helps and I'm sending you positive vibes and warm healing hugs xx

Dec 13, 2016 9:12 PM

Kathy, welcome. You are not alone. This app keeps kicking me off. I also have RSD/CRPS I am going to a rapid detox with little discomfort but I want to start from scratch . Lavender oil helps and I take melatonin and wear a copper infused eye mask from amazon. I am here.

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