TCP

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.

I'm ISFJ distinctively expressed introvert moderately expressed sensing personality distinctively expressed feeling personality moderately expressed judging personality I'm essentially introvert and very sensitive/emotional. I've had anxiety since the age of nine.

I have put my flushing and blotchiness down to the blood flushing in the skin, as I have autonomic neuropathy. I see the same marks on people who are stressed so there is a link. My flushing affects my feet, hands, arms, chest and neck. it seems to get worse as the day progresses. I'm not unduly worried about it, as the nerve pain and tachycardia/BP problems are more of a worry.

PS. I also recommend that you keep the circulation going as if you don't that is when numbness occurs. If you do non-weight bearing exercise it helps pump the blood back up into the body and keeps the blood feeding the nerves.

I have Autonomic Neuropathy from toes to throat, it started in my feet and spread up. Its effect on my heart/liver/bowel/BP and bladder have been the hardest to bare. I get wide-spread burning and deep nerve pain. The worst sensation is the tight corset feeling around my middle. Nerve damage doesn't have to be permanent, as the condition which is causing this problem, if controlled and treated can bring about nerve repair. I've probably had it for years but the past 4 have been the most dramatic. Keeping calm and taking a cocktail of nerve protectors like alpha-lipoic acid and vitamin B's have helped. Acetyl-L Carnitine is very good, too, as well as magnesium and calcium. Peripheral neuropathy is linked to many conditions such as diabetes, but some an be linked to POTS, just like it is to ME/CFS. Meditation helps and knowing your limits is vital. I'm on Gabapentin and Nortriptyline to block nerve pain.

I know that many people with ME/CFS have MCS and it's believed that POTS could either be the cause of ME/CFS or be implicated.

I have just seen a cardiologist who was pretty clueless. He didn't know anything about the nervous system, let alone Autonomic Neuropathy. I gave him a detailed run-down of my symptoms which point to a problem with my heart/BP etc and the symptoms which I endure daily and he dismissed them all. He only agreed that I had tachycardia. I think if I hadn't been persistent he would have just brushed me aside. He did arrange an ECG, Echo and a monitor. I came away pretty frustrated. Surely cardiologists must treat patients with AN and POTS? I was also annoyed to find out that neurologists who had seen me during two hospital admissions had put all the nerve damage down to ME/CFS and not AN, so nothing shows up in my files to support a proper diagnosis. Any tips on getting something done or is it like always like this when tackling doctors? Thanks TCP

Well written piece. I've been ill since I was 23 and I'm now 51. I love my life even though I have a pared down existence. I believe our minds are very powerful when it comes to our physical health and calmness and peace can help many conditions. I don't think of death but life as we have this one life here on earth and I want to enjoy, laugh and love. I want to leave my mark and not let my illnesses define me. Love your life and live in the moment.

I've had ME/CFS since 1984 after Glandular Fever. I was diagnosed officially with ME in 1992 and then unable to work properly since then. In 2007 I went downhill and was hospitalised with Autonomic Neuropathy. I've guessed I have had POTS as most of my symptoms fit. I need to get a proper diagnosis and will see a cardiologist next week. I have unfortunately got conditions that my GP knows little about and that makes it hard to get diagnosis and treatment. I have worked a little with art since 1984 but now have to have more support and care.

Hi. I have ME/CFS, autonomic neuropathy and suspected POTS. My sleep has become more weird as the years go by! I have had sleep paralysis for a number of years, but when the autonomic neuropathy kicked off four years ago I experienced strange pins and needles/burning limbs/freezing and numbness. I was also biting lumps out of my tongue and having night jerking sensations, where my fingers and limbs would move involuntarily. The medications; Gabapentin and Nortriptyline have helped with nerve pain and sleep, but I also got a really flat pillow, to stop the tongue-biting and made sure I had a really good mattress to ease pain. The main help is to totally relax before sleep, as I often have vivid nightmarish dreams which I wake up from. They make me sweat and make my abdominal muscles clench up and shock me into waking suddenly. I have noticed the more stressed and tense I am the worse they are, so the trick is to do meditation and to really relax before sleeping. It does work and the jerks subsided as the fear left me. A good mind/body balance works wonders. Good luck!