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?

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!!

My breathing improved with the beta-blocker and I'm far less breathless now.

Yes there will be flares and almost normal times. I'm used to that with other disorders too. Not good but could be worse!

Lying down is the only time most of my symptoms abate but I wake up feeling awful

In the UK you can get it over-the counter at Chemists and it's called Motilium.

I have tachycardia and am currently on beta-blockers. Still beats fairly high and then get recurrent jigging of the heart that can go on for several seconds at a time. I don't like that as it can happen at any time. Had all the checks including ECG, 24hr monitor and echocardiogram and although sinus tachycardia diagnosed no major problems. Unsettle me but I tell it to keep beating.

Both sides flush but the left side has always been worst affected I often get flushing up my chest and neck and left ear, but that has settled since I've been on the beta-blocker. My left hand, foot and limbs are worst on my left side. When the neuropathy flared up my left foot went blue and numb, but luckily the feeling came back over the course of a few weeks. In the bath my left leg is always yellowy but my right is pinker, although I am having more trouble with my right ankle and knee now. It's the nerves and circulation...best advice is to keep moving and get the blood flowing to keep the nerves alive.

I've not heard of this and it's prescription only in the US?

Hi I have ME/CFS and extensive Autonomic and Peripheral Neuropathy. I've been having the symptoms of Obstructive Sleep Apnoea for several years and I finally saw a 5th GP who actually referred me to a consultant. I am currently being checked out ahead of a possible CPAP trial. I have all of the symptoms of OSA, including heavy snoring, stopping breathing, restless sleep, frequent waking, sleep paralysis, night terrors, unrefreshed sleep, extra daytime fatigue and lethargy. I score 18+ on the Epworth Sleep Scale. I have put on 5 stone in weight since on Gabapentin and antidepressants which hasn't helped, but the snoring started before the weight-gain. How many more Autonomic Dysfunction sufferers have this problem? Thanks TCP

I've been taking Alpha Lipoic Acid for some time at lower doses and am about to step it up. It's been used for diabetic neuropathies in trials with great results and on the continent it's even prescribed medicinally. It's worth a go. It works well in combination with Acetyl-L-Carnitine, although this one makes me feel unwell, so I didn't benefit...but many do. These two are very beneficial as is Benfotiamine, a synthetic form of vitamin B1. All aid nerve growth and regeneration.

My neuropathy extends right up to my left ear and it's bright red and burns a lot. The Propranolol has helped ease this, though. I only take 10mgs as I have ME/CFS.

Just experiencing one of the worst relapses I have ever had. The whole of my nervous system is jangling. My gut and back are the most painful and my joints. I also have extreme nausea, dizziness, weakness, prickling, burning all over. Very shaky and feel awful.

Bloating, meds etc 5.5 stone increase.

Both have affected me. I am on 2,400-3,600mgs of Gabapentin now and still have problems, but nothing else for the pain. Many side-effects and can often feel worse. If you can do without then do so. Now on beta-blocker and that has calmed BP etc and good for anxiety.

Very vivid dreams...all the time. Jerking and twitching and sweating and heart pounding and waking up suddenly. Every night!

Thank you. I think there definitely seems to be a link with this. I have my bed inclined, but await the consultation/tests to see what 'they' say. Angela, my family have noticed me stop breathing which is a worry! I also get sleep paralysis and night-terrors, too! All rather odd, isn't it?

I had glandular fever followed by ME/CFS in 1984. In 2007 developed peripheral neuropathy in feet and into legs. Progressed to hands and arms and eventually into torso resulting in autonomic neuropathy and POTS.

I know it's hard for you, but don't be scared. Get checked out and see what happens from there. Good luck

I was put on 80mgs of beta-blocker Propranolol and my hair dropped out in clumps. I then found out that I should have only been on 10-20mgs as I have ME/CFS. I gradually reduced the does (I informed my doctor) and the hair-loss stopped.

Hi Has anyone else had this problem and been checked out by a specialist? I've had sleeping issues since the autonomic dysfunction flared up and now I regularly stop breathing and sound like a walrus! I know it's OSA and so far 4 GPs have shown no interest when I tell them and finally another is sending me to see a consultant at the hospital. I bite my tongue if I have a higher pillow, so opt for a flat one. I have nasal inflammation and polyps. I get head jerking, like seizures and need to see someone very soon. I know I'm not alone with this. Take care TCP PS I've put on 5 stones because of the Gabapentin and Anti-depressants, which hasn't helped.

I feel like crap when I wake a lot, although the all over nerve pain subsides when I lie down. I hate the jittery tremors and feeling sick. I'm drinking more and I hope it helps. Good luck!

I'm on 2,400-3,600mgs per day for severe neuropathy. Not sure if it helps that much but not prepared to come off it at present.

I seem to get sinus headaches and then headaches when my bowel fills up. Once I go to the loo, it eases. Pressure on the nerves, I guess!