Is This An Autonomic Relapse?

[TCP]

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?

[Chaos]

Not sure if it was exactly like this, but I did have a severe relapse this winter that lasted for about 4 months and for several weeks of that, I felt like you are describing. Actually I had bronchitis/pneumonia but never ran a fever (was sub-normal) even though I felt like I should have had one and felt just like I used to feel when I did have fevers. It was quite miserable. This "relapse" was different from the "crashes" that I've had over the past 4 years since I became ill in that it was a much more severe and unrelenting level of illness that put me back to where I was when I first became ill in 2009.

Like you, there may have been several factors involved, in that I had been experimenting with changing my exercise program before I became ill (was trying high intensity intervals), which I'm now thinking may have set me up for this relapse. Then my doc was changing my meds and then I got the virus/bacterial infection that was going around. Think there was the "3 strikes you're out" thing in play for me that may have aggravated it all. Oh, and then I went to a new doc who took 18 vials of blood (some of which were HUGE) so I think that added another layer in as well....

So sorry you're dealing with this now. Hang in there and hopefully you will come out on the other side in the not-too-distant future.

Sending you hugs!!

[TCP]

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