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Hi. I have ME, AN and PN and a gallstone was found back in 2007. This past week I have felt extra unwell and my motions are orange and the size of baked beans. I was wondering if it could be my gallbladder? I'm seeing my doctor tomorrow about the worsening of my sleep problems with gut clenching, sweating, rapid heart-rate and nausea, so I'll mention this, too. I just wondered if anyone else has this? I had diarrhoea for a day and now I've passed a handful of baked beans in the past few days. Weird!

Thanks in advance

I had problems with my gallbladder and a stone was found at teh same time the AN and PN triggered. I'm having serious problems now so may have to have it removed.

ISFJ. Definitely shy introvert artist/writer. Tall and was thin...not now and always pale.

I am 5' 8" and did weigh 144 lbs but now weigh 215 lbs because of the drugs.

Four pints (80oz) of water in winter and 5+ in the summer.

Good luck everyone as I know sleep is so important to our wellbeing.

Hi. I went with my boyfriend to a beautiful woodland that had lots of lakes. I hadn't noticed many biting insects, but he said that he was being bothered by mosquitoes. Rich was being bitten on the hands. When we got home his hands were getting red and as the evening progressed he was really suffering with lumps on his arms and legs. He couldn't sleep at night as his arms and hands had swollen up like balloons. I felt so sorry for him as he was in agony. I thought I had a lucky escape. Then 24 hours later I had lumps come up all over me. They were on my feet/legs/arms/back/neck etc. I had them in places you wouldn't believe. The critters had penetrated through two layers of clothes in some areas. I couldn't believe it and wondered why there was such a delay in them erupting!

Yes lots of weird sensations and more. The leg-kicking and jerking is weird. Some I find creepy like the feeling of cold water trickling down my back; the tight corset feeling around my middle when I need the loo and when I'm in bed and my nervous system is buzzing it sometimes feel like someone has just sat down on the bed next to me.

I was on Gabapentin and Nortriptyline initially when the AN and PN kicked in. I came off the Nortriptyline and for the past year have been on Duloxetine. What a big mistake! All of my symptoms have worsened and so has my sleep disorders. I feel absolutely awful all night and day. I'm seeing my doc this week to go back on the Nortriptyline. I didn't realise until I researched that it is the best thing to take for IBS and AN. It certainly makes me sleep better and stops my gut from clenching in response to my sleep cycles.

It's all trial and error. I like to sometimes try other things but they don't always work.

Good luck and I hope you have it sorted by now.

I have peripheral and autonomic neuropathy, plus ME. I have sleep apnoea, sleep paralysis and act out my dreams. These came on more so in 2007. They are getting worse and I'm getting checked out soon to see what's going on. My gut responds to all my brainwaves when sleeping and I wake suddenly with clenched gut muscles and I feel sick and dizzy with faster heart beat. I feel ill all day and weak.

I would like to hear from anyone who has these symptoms and any advice on good meds to take. I came off Nortriptyline and I wish I hadn't as it helped me sleep and stop a lot of the problems. I am going back on it this week.

All the best to everyone

I had the oxymetry test done and I have been referred to a sleep specialist and maybe a sleep study. I have multiple problems with sleep and various weird conditions and they are getting worse. I think coming off the Nortriptyline did me no favours at all as my sleep is more fragmented and the SA has got far worse. My gut muscles are in constant spasm and it's making me feel so ill and the neuropathy has worsened. Good luck everyone as I think this is awful!

Zzzzzzzzzzz.....

Margiebee....I also act out my dreams and I also get sleep apnoea and paralysis. I'm just going through checks for all of these again.

I haven't been diagnosed with EDS, but I do have:

Skin on soles/palms very smooth and slippery
Hump at top of spine
IBS since aged 23
Over-reflexive elbows

Repeated knee dislocations

Food for thought!

Very vivid dreams followed by sudden waking and rapid heart/sweating/sickness/dizziness and gut spasm. All linked to sleep disorder linked to Auto Dysfunction.

Thanks so much for your reply and good wishes. It's all trial and error isn't it?

I think I've managed to suss out what has been going on and I think it's coming off the Nortriptyline! That is the best for AN and IBS and sleeping etc. I came off it and went on the Duloxetine, which didn't work in the same way. Then over the course of the last year and subsequent flare-up is definitely linked to my sleep disorders getting worse and my gut spasm, sweating, dizziness, diarrhoea etc. I'm going to see the doctor this week and I'm going to go back on the Nortriptyline asap. I knew that something odd was going on and after surfing the internet I have come up with the culprit. I think the Nortriptyline had made my sleeping deeper and with less REM sleep issues. Coming off it and onto the Duloxetine, which I also reduced, made the SA really kick in. The day-time sleepiness and sickness/diarrhoea/sweating and generally feeling well below par where making my life a misery. I haven't been able to do much at all because of the problems.

My gut muscles are so sore from the contractions that take place during REM sleep-cycles. I hadn't heard of the gut-brain and that the gut works with the brain in sleep. The gut has always been the epicentre of my symptoms and as it has 100 million neurons, more than the brain, you can understand the connection! Amazing really. Now I need to calm it all down and it may help everything. I wonder how many of us are needing certain drugs and should stick with others? I wish I hadn't switched!

Wishing you well and everyone else with this weird condition

I know I'm failing miserably and even faked many times mainly through frustration. I admit it! Use of aids has helped as I read that you should keep your naughty bits stimulated or the nerve endings can die-off/become numb. I believe this is true. I also notice that after the act I feel AWFUL...really ill. Much better without the 'O', to be honest.

Many of us have autoimmune or idiopathic. Once doctors knew I didn't have diabetes they were thrown that I had autonomic and peripheral neuropathy. It didn't tick the right boxes and therefore they didn't know what to do.

I hope you improve, Tinks and find a good outcome for you.

I feel like we are having to self-diagnose and monitor our health, which is wrong. I've not been offered Florinef (in UK, too) and am on beta-blocker at low dose. I know a lot of people seem to be on florinef.

Not doing very well at the moment, so wonder if something else would be better for me. I'm currently on gabapentin and duloxetine plus the propranolol. I've been given very little help and advice even though I am very disabled using a stick and needing support 24/7.

I'm at a loss to know what to ask for. I saw a cardio and he was useless...my tests showed tachycardia and he didn't want to help even though I have postural changes to BP/low BP, breathing problems etc. He said he didn't know anything about the nervous system and put it all down to anxiety hence the propranolol. Rubbish!

Yes, it's adapting and coping with things as best we can. The rotator cuff tear was a good analogy as my mum and carer is recovering from one!

I have sleep disorders, too. I wake up from night-time sleep and naps feeling sick and dizzy. My limbs are stiff and I feel rough for at least two hours after waking. Prior to this my sleep wasn't too bad, even with the ME/CFS. I do need to nap and have to at times. I take it easy when I get up and I'm unable to work, so it has to be part of the routine. The BP needs to level out when I get up so I do it slowly.

I'm feverish at the moment but my temp is below normal. My BP has been erratic and although is in the normal range has been peaking high for me.

Having read that the autonomic dysfunction is there before the extremely sensitive reactions to stress/anxiety etc was a relief as most doctors kept telling me that it was the other way around; that anxiety was causing my symptoms, now I KNOW this isn't true. With autonomic dysfunction the body becomes sensitised and reacts very quickly and that's why we have to become calmer and more chilled. Hard when it's now built-in! Balance is key but it takes some doing

I'm having bad relapse at the moment.

I've had ME/CFS since 1984 after glandular fever. I developed full-blown autonomic and peripheral neuropathy in 2007, with all the nerve pain, tachycardia, BP problems etc. Steady decline in last couple of years and this year has been WEIRD. I currently have a very uncomfortable lower spine/gut/head, more so than usual, these past couple of days. I feel sick and very weak. I am going to pass motions a lot. My BP is up and down, it's usually below normal. Everything is aching, nervy, crampy in my body. I keep sweating up and getting clammy but my temperature is below normal. My arms are so weak and I'm resting as much as possible. Just drinking fluids at the moment. Not sure is it's a relapse, drugs, my gallstone or virus etc. I feel extra fluey and spaced out.

I'm on high doses of gabapentin, low doses of duloxetine and propranolol. I'm due to see the GP on Thursday but may have to go sooner if I feel no better. I'm barely able to type let alone anything else. Has anyone else had a really bad relapse like this?

Wow! Amazing how many symptoms related to this and includes many of my ME ones, too, so makes me wonder if they are one and the same! Thanks so much for posting.

All but one for me...no weight loss. All the rest a big yes! Plus I have ME and peripheral neuro pain. Ain't life grand!!