TCP

Thanks, ramakentesh. I've not heard this so it's interesting. I shall look into the mestinon med to see what it does and if it would work for me and if it's available. Take care TC

It started with EBV in 1984 and then led onto ME/CFS. At the same time I had an ovarian cyst removed and I suffered a miscarriage. I then got IBS and eventually in 2007 the nerve damage really came on really bad. I now have autonomic and peripheral neuropathy, POTS, Glaucoma etc I have degeneration in lumbar and cervical spine. I wondered about EDS as I have dodgy knees and my elbows overflex. I also am able to do lots of the movements with my hands.

I was put on Propranolol for 'anxiety' the cardio said even though I have POTS and autonomic neuropathy. I generally has low BP and tachycardia and in recent times my BP has gone up or fluctuates.

Seems to be part of the POTS and autonomic neuropathy for me. I have permanent tachycardia regular wobbles and stops/starts. I presume as we have nerve damage in our bodies and the nerves fire-off spasmodically in our hearts and other places.

I used to eat gluten-free bread but found most are too high in sugar. I follow the neuropathy diet and it has to be low carbs and sugar, no gluten and dairy. It stops the bloating.

Xrobin, I'm with you on that!

Hi Liz. I'm sorry to hear that your visual fields are getting worse; this seems odd if your pressures and optic nerves are OK. I wonder what is going on there? Have you asked why this could be happening? Good luck with your eyes and treatments, though My dad finds it hard to get the drops in and I think he squeezes most of them back out. I don't have my first proper check until the 8th of April even though the higher pressures were noted in November last year. I am pretty shocked how log it will be and I'm hoping we can get another one fixed up sooner. Take it easy and thanks for the info. TC

I usually have cavities filled without any pain relief but if I had to have an extraction I would ask for a local without epinephrine, as I don't want to risk my heart going weird! srb, how did your body react to the Lidocaine? I am due to have three infusions very soon,

I guess most people end up seeing a cardiologist, neurologist, gastroenterologist and respiratory and pain doctor. I hope you gets lots of help.

I think it's wise to ask for the anaesthetic without epinephrine. Adrenaline isn't good for autonomic dysfunction.

I think in most cases it isn't fatal, but in extreme cases I believe there can be issues. My heart has been going haywire since before 2004 and I'm still here. I try not to overdo the moving around (I won't consider exercise as such). When my heart goes mad, I really relax through meditation and it really helps. My heart is my biggest concern and I am doing all I can with the water/salt/low carb diet etc to help myself.

I had ME/CFS from 1984 and struggled to work until 1991 (off and and on). I haven't worked outside the home since then. I have been self-employed off and on for 7-8 years. The nerve damage became more pronounced in 2007 and I have gradually worsened since then. I would love to work but I have nerve damage all over my body. I can't walk far without the use of a stick and holding onto someone. I have a full-time carer.

Hard slog to get up them as my heart races and I get out of breath. ON coming down my breathing isn't so bad but my joints click and that's because of the peripheral neuropathy.

Don't do heat! I used to love hot baths and realised that after having them I used to overheat and feel very light-headed and dizzy. I would feel rough for hours afterwards. I now have warm showers or baths and take it steady after so as not to overdo it and make myself ill. You will sweat with this in the night and maybe after eating. I react strongly to temperature changes and it can be quite dramatic. My limbs can freeze and movement helps. If it's too hot I overheat and feel very sick and flushed. I bought a cooling vest and that helps in the summer. I also like cool baths when I overheat.

Hi. Since the neuropathy started in 2007, I have noticed that my toes get very sore especially the two big toes. They are red, swollen, lumpy, skin peels and I seem to have more problems with toenails in-growing. My toes get more sore when by bowel is troubled, I have to cut my toenails regularly and check my feet a lot as I have had a tendency to get so sore around the toenails and even gets pus there which isn't nice. The skin also peels off my toes a lot. If I walk a little too far in hot weather I get really red and swollen feet with lots of visible fatty lumps showing. Very odd! I keep feet very clean and dry well after a bath or shower. I massage y feet daily to help with the circulation. Yes my feet have been cold for 30 years and my soles get purple-red and my big toes go purple-black when it's very cold. I make sure my feet are well covered in thermal socks in the cold weather.

Unfortunately night sweats seem to be a problem. I know mine get worse when it's cold and I'm muffled up, when it's summer and too hot anyway or when I'm having vivid dreams or the hormones are kicking in. I also notice they are worse when mu bowel is full for some reason. All very odd. I know I'm never cold in bed whatever the time of year.

I know I have intolerance to heat and the cold, but also my body temperature isn't under control either. I have had these symptoms for years and I've linked them to the autonomic dysfunction and I've had issues since 1984. There are many scholarly articles on the internet about this problem with body temperature: http://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=1&ContentID=2090 'SweatingDamage to the nerves that control sweating means that the person has trouble regulating body temperature; night sweats or sweating while eating also may occur.'

Hi. No you're not mad or making it up...your symptoms are real and we all know what you are going through. Don't despair as there are lots of things that you can do to make life easier and take it steady and learn to read your body when you need more water and rest etc. All the best and keep in touch on here as it's a fab site

I found Dr Mathias and noted that he retired from the NHS last year and only takes on private patients now, however there are two other doctors who treat POTS and EDS patients.

Thanks, Ladies. I can't see my doctor prescribing either unless she gets some guidance from a specialist and as I don't have access to one anywhere near me, it may be a problem. Is this Dr Mathias(?) that you mention by any chance? I've not heard of any doctor being a specialist in this area and all the scores of doctors I have seen over the years (cardio, respiratory, gastro, neuro etc), have all just put my symptoms down to ME and nothing more and yet the nerve damage is the most crippling of all. None have really offered me any help despite me having notable symptoms. Thanks for the information and could you tell me how to get in touch with the doctor in London? Many thanks TC

I have read that it can go when you are young. I'm not sure if mine started with the ME in 1984, but looking back it probably did after glandular fever. I was 23 and we just didn't have much knowledge about it then. I think if people early on do the right things and get the right help then it just may go. I think it also depends on how much damage has been done to the nerves. I wish everyone well and we all hope to get well or at least feel better. Thirty years on I am still searching and living my life as best I can.

Does anyone in the UK have access to Florinef and Midodrine? I'm not sure if they have been licensed over here.

I take 15-20 meds and many supplements. Each year I add more meds onto the list. This year I already have two new ones to add. The meds help to control or manage the condition, but none of them are that effective and they do have side-effects. Meds don't repair or regenerate nerves, so I take the supplements to help repair and regenerate where possible.

Hi Valiz. I wonder if the link we should look at is diabetes and glaucoma? I have the same symptoms of autonomic and peripheral neuropathy like diabetics get and they are also prone to getting glaucoma. The start of all of my health problems was Epstein Barr Virus back in 1984 and that is classed as an auto-immune disorder like diabetes. I know that when my bowel is upset the pain and discomfort in my eyes increases and the ophthalmologist didn't dispute the link between my bowel and eyes. I know many bowel medications you cannot use if you have Glaucoma. Strange isn't it? How is your glaucoma, is it stable? Yes, we need to have all the links tied together and treated as a whole and not separate symptoms with 5 different doctors. I diagnosed myself with ME/CFS and then it was confirmed in a clinic. I also diagnosed the AN and PN as the doctors wouldn't say that I had and I told them I had it and now they acknowledge that indeed I do have it. I knew months ago I had glaucoma and have only just had it diagnosed. I think we know our bodies, don't we? Take care and I wish you well TC

I have a resting HR of about 95-130bpm. If I exert myself just a little my heart nearly pumps its way out of my chest. My breathing also gets short and laboured. I cannot do any real exercise as much as I want to. I used to walk miles and loved it and now I cannot. I have peripheral and autonomic neuropathy and ME. I know many people advocate exercise and I have read that the autonomic neuropathy can revert back to normal with steady exercise. I am very wary of this as I know that problems with the heart and breathing can be very risky where exercise is concerned. I have been advised to try lighter forms like simple yoga, swimming, tai chi and qi gong. I would never try anything too heavy. Like you, I have a recumbent bike and am very careful to only use it for a few minutes a day.