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I'm just about ready to take it. I have ME and peripheral and autonomic neuropathy. I am in the UK and LDN is not licensed here yet, so I am having a telephone consultation with a registered doctor and then the liquid form of LDN will be shipped to me from a pharmacy in Scotland. I will start on a very low dose and all being well will eventually work up to 4+mgs. I've been reading some great results from people.

As my ME started with Glandular Fever, I am hopeful that a drug that works gently on the immune system will help me with pain etc.

All part of the condition. Mine were always cold with the ME/CFS, but since I got peripheral and autonomic neuropathy, I have intense burning in my hands and feet. It's my arms and legs that get cold now!

I've raised mine very slightly, but it hasn't helped the acid reflux or with the BP issues.

I'm not able to work. I can socialise on the very rare occasion and only shop when there is someone to hang onto. Not able to do much around the house.

I have autonomic neuropathy, peripheral neuropathy, POTS, ME and spinal degeneration.

I get it when sitting and worst when eating. I think it may have something to do with the abdominal bloating. I've been told to cut down on the carbs to stop any bloating and I think that helps.

I live in the moment so that I'm not too troubled by other events in the past or future.

If I do any chores, I do them gently and purposefully.

If I find my nervous system getting overloaded, I calm down and breathe gently and meditate.

I let people know if I am having a bad day; that way no undue pressure.

I do things that I love doing and that is great therapy.

I have burning sensations with the autonomic neuropathy.

Elegiamore, I'm sorry to hear of your problems. I also had ME/CFS after glandular fever in 1984, but I am only just starting to suffer from the tachycardia/BP problems at the age of 46-51. I'm doing all that I can to assist the nerves and staying calm and looking after myself. I don't expect to make old bones, but I may be pleasantly surprised. You have been through such a lot, that I hope you can find some respite from all of this hun. I think you deserve it.

Yes this scares me, too. The meds I am on could well lead to dementia, which isn't too good. I have long-term ME/CFS, developed the worst Autonomic Neuropathy with extensive nerve damage all over my body. The Tachycardia and BP problems cause most stress, but the latest test show all is well. My plan is losing more weight, despite a healthy eating plan, the meds won't let me shed any more pounds at present, which is annoying and staying calm 99.9% of the time. I think that is key and living in the moment.

Sit in front of car. Watch the horizon at all times, don't look at maps, etc or read and don't sleep or close your eyes. Sniff peppermint oil or lime/ginger oil. Have food before you go and wind window down for fresh air if car heater makes it too stuffy.

I have it mildly. My elbows/knees flex quite loosely and the right knee has popped out a lot. I get joint pain related to neuropathy and ME/CFS.

It seems that POTS and ME/CFS have blurry boundaries, as do Fibromyalgia and ME/CFS. The involvement of the nervous system can incorporate many conditions or they may be one and the same.

POTS, ME/CFS and Autonomic Neuropathy.

Yes, either from meds or BP. Lots of loud hissing and I miss some sounds. Worst when there is silence, as I notice it more.

It's so easy to get worked up when you have a condition affecting the nervous system. I have dreadful symptoms when anxious...they really do appear quite frightening when I try to sleep. I get gut clenching which makes my abdominal muscles go into spasm, the nerve pain goes up my chest into my neck and arm and feels like cardiac arrest. I get jerking and muscle twitching but the most scary is the body lurching which wakes my up and I sit up bolt-upright, sweating and feeling sick. My heart is going so fast it hurts. I also get sleep-paralysis. I've gotten used to the symptoms and they are linked to anxiety. The calmer I get before bed, then the better I sleep. I wind down gently before bed and do some meditation or visualisations to calm my system.

I get very breathless and cannot sing, dance or even reach the end of a sentence sometimes. I notice it is worse when I am stressed or agitated.

I have to have regular stops and toilet breaks. This helps with stiffness and pain. I also take some peppermint oil to sniff if I feel queasy (and also some lime/ginger oils) and this helps. I stay in the moment and don't fret about it. I look forward to the getting there and tell myself that the journey is fine and will be over before long. Keeping calm is key. Good luck!

I get this fairly regularly no matter what I eat/drink. I can feel my throat and esophagus narrow. I can feel the whole lot squeezing tight and if I drink to free the food if stuck I can feel the contractions all the way down to my stomach. I also get a restriction that has affected my voice making me rasp...it's worse when I am stressed.

I believe that the ME/CFS was in part brought on by anxiety/stress and the loop of ill health began. I believe that the autonomic dysfunction was part of this. I developed IBS soon after and as the years went by the neuropathy really kicked in and so did the heart/lung/BP problems. All connected.

No ones in my family understands how bad it is. I have 3 conditions which are not fully recognised and it feels like I have to justify what is wrong with me. My mum is the best as she sees on a daily basis how limited my lifestyle is. I never moan and because of that people presume that I am healthy. I just crack on as best I can and ignore any silliness from others. I've tried to educate but no one listens so I've given up trying.

I get a real mix of symptoms related to the autonomic neuropathy. I range from stiffness, freezing limbs to burning heat all over. I figure it's the effect on the nervous system. In the morning my legs stiffen up and that eases as the day goes by but the burning intensifies. I think we react so strongly to meds/supplements/food etc and even a slight stress plays havoc with the nerves.

I've had symptoms of blood sugar drops for years but tests show normal. It's a recognised part of having ME/CFS and I am to believe it is a feature of blood pressure changes and may mean fluid is needed??

I have it but it has subdued since I use a sinus rinse. I get less mucus and that was what was making it worse. When it is in full height I stop breathing, snore like a walrus and bite my tongue.

When the neuropathy started it was low sometimes 65/32 and four years on it swings from low to high. When I'm stressed it rockets and my head and upper body go crimson and I feel like I'm going to burst.

I have autonomic neuropathy which some say is a form of peripheral. I take Gabapentin and Nortriptyline in 2,400mgs and 50mgs respectively. I take alpha lipoic acid, high dose B vits, acetyl-l-carnitine, calcium, magnesium, Vit D and general multivit. MSM to help with joints.