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TCP

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Everything posted by TCP

  1. 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.
  2. Your thermostat has definitely gone haywire and you need to see a doctor to help regulate it. I know in some conditions it needs to be checked out in case there is something going on there. Most of us overheat with autonomic dysfunction and a beta-blocker has helped me a bit. In the summer I wear a cool vest, use a fan and have cool baths. I overheat in the winter if the heating gets too high, if I have eaten or overdone it etc. Autonomic neuropathy may disrupt the brain's ability to regulate sweating throughout the body. Consequently, patients with autonomic neuropathy may not be able to properly regulate body temperature, as the skin's blood vessels do not effectively dilate to reduce body heat; patients cannot sweat so exercise or exertion may cause the body to rapidly overheat. Alternatively, patients may inexplicably sweat profusely while sleeping or eating. I hope you find a solution.
  3. I note that many more drugs are available to people outside of the UK. I haven't been offered any of these, then again there is no one doctor who has been knowledgeable about this condition.
  4. I take Alpha Lipoic daily to help heal the nerves as meds don't. I believe it helps with the micro-circulation around nerve endings and stops them dying off. I know it was trialled in diabetics at high doses of 600mgs+ and seemed to show improvement in neuropathic pain.
  5. Raisin, no offence taken....not to worry on that score.I was never a high achiever although did well at school and university, I had no big plans with a career apart from my love of art and writing. I got really ill at the age of 23 so nothing really got started for me, although I have worked for myself and other businesses, I have spent much of my adult life too ill to work. I think what amazes me about all the people I know with ME/CFS, AN/PN and POTS is how clued up they get about their illness and treatments. I think because there is so much confusion out there that we all have to become pro-active and learn about our bodies, health and what we can do to make our lives better. I know more than the cardiologist, respiratory doctor and neurologists I have spoken to. I think we all have to take over and become experts. We have one life and we need to live it as best we can. We do support and that is vital, whether that be from family, friends or outside agencies. Having a good doctor helps. It has taken me 30 years to finally find a good one. She doesn't question or dismiss my symptoms and gets me referred where necessary. The tests etc can often reveal a lot. Have you joined any of the POTS charities for support? I've just joined the POTS UK on Facebook...there are quite a few around.
  6. I started the muscle twitching and popping sensations back in the 1980's as part of the onset of ME and they were worse when I had been walking. My legs would fizz and make popping sensations for hours afterwards. Over the years I got used to them and with the onset of neuropathic pain, I noticed them less as I haven't walked so much. I do get various weird nerve sensations that can be stabbing, burning, freezing and irritating. This can be mild or painful and can either be fleeting or lasting hours or days. I get the jerking problems but not as much as back in 2007 when I was twitching and jerking all over day and night. I find keeping my body as relaxed as possible helps...
  7. Love and Gratitude

  8. Take care and I wish you well
  9. This is exactly what they used to say about ME/CFS sufferers and that's how the YUPPIE FLU tag came about (Young Upwardly Mobile Professional)...it was deemed high achievers got it. I would say only about a third of the 40+ people I know with ME/CFS were high achievers.
  10. I do feel for you this can be horrid to accept. I think some family are in denial and don't want to acknowledge the illness, they want us to be the cause of it and for us to have the solution in our own hands, so they do not know what is going on or what they can do. They feel impotent and afraid that they can't mend you. People latch onto one version of what they believe is going on and close their minds to the truth. Your parents think they are doing what's right; like tough love. I have heard these kind of family stories time and time again and feel very sad and angry for the sufferers who have to endure this kind abuse and ignorance from people who are not appearing to be supportive and kind. I know of whole families that have been torn apart from this kind of ignorance. One lady I know had a good and loving husband but his family would not accept her ME/CFS and snide remarks started about her 'laziness' and being a bad wife. Not once did they ask about her illness and how is affected her. One even said it was the menopause and she needed to pull herself together. In the end she distanced herself from his toxic family and got on with her life with her husband as best she could. I'm not saying that this is the best course of action for you but I think they must be made to understand the nature of autonomic dysfunction and how it affects people. Epstein Barr started mine back in 1984 and my condition has changed and evolved over the years and now I am unable to do do much and haven't worked from some time as the nerve damage is all over my body. The only time I leave the house is to go the hospital and my mum is my primary carer. I try to keep family and friends informed but most still don't get it, to be honest. They accept I am ill but that's it really and they never ask how I am, but ironically I am the one they turn to with all their health problems! You aren't causing your illness and taking advise from those who no nothing about cause and effect can be dangerous. You must let your parents know how hurt and upset you are by their words and you understand that they think they are doing this for your own good, but they obviously don't truly 'get' the condition like you do, as you are the one who has to live with it and no doubt understand what it does to the body. There are many sites that explain about the autonomic nervous system and how dysfunction effects the body and many from well-known doctors, hospitals and clinics. It's not fair on you to apportion blame for the health problems that your suffer from. The 'de-conditioning' theory is banded about by the psychiatric lobby where ME is concerned and that sufferers have practically brought the illness on themselves and perpetuated it. If people including doctors don't know the answer they say it's psychological. That's a cop-out, an easy way out. I also studied psychology and can see what's happening here. I wish you well and hope that your parents start to understand you and this illness more.
  11. Hi Jennifer. How can you tell the difference?
  12. I think with having ME/CFS and the Autonomic/Peripheral Neuropathy and POTS as part of this nice bundle of conditions which no one fully understands or knows how to treat properly...well at least in the UK anyway. I explain to people what's wrong with me and then it washes over them and they come out with stupid comments such as I look well and they get the same problems etc. They acknowledge that they don't understand it and then go on to make suggestions about what I should be doing, like I've been on another planet for 30 years and have learnt nothing about my condition. The fact is I know more than anyone what it is like, what it is and what I can and cannot do. I have become my own physician and adviser. Apart from my mum no one knows what I go through or problems that I have. I have had some crass comments from family and friends over the years. My ex-boyfriend typically made remarks about what I should be doing like going out walking and socialising as if that was some sort of cure. He didn't like me to use my walking stick as he didn't believe that I needed it, but he regularly witnessed my wobbly walking, falls and extra pain. He thought if I did normal things that I would be healthy, which is basically what he wanted me to be and yet this guy never did anything other than watch TV. Doctors find lots of things wrong with me but just offer me drugs and send me on my way. No is there to look at my problems as a whole. I have had several doctors say that they don't understand my condition and that equates to them not being sure what to do with me. However, I have noticed a few doctors in the past year being more accepting of the ME which definitely led to the autonomic dysfunction and POTS. I think we all have to educate and inform...
  13. Andy, no worries! Yes, I am intrigued and a little apprehensive, to be honest. I will give it a go and report back to the forum. All the best TC
  14. 1984 ME after EBV. By 1993 I was using a wheelchair. Made lots of progress and working towards recovery and then BAM! by 2007 Autonomic and Peripheral Neuropathy kicked off big time after years of vague symptoms appearing. POTS etc were part and parcel of it all. I have now been dx'd with EDS! That all ties in now with ME, POTS and neuropathy.
  15. I had a little anxiety at times felt panicky, but not excessively so, in my earlier pre-illness period prior to 1984. I developed ME when I was 23, after EBV, and seven years ago Peripheral and Autonomic Neuropathy became full-blown. As part of the autonomic dysfunction the POTS appeared. I have read many articles on AN and many state that the anxiety comes on afterwards as a consequence of a damaged nervous system that reacts more strongly to stimuli both external and internal etc. I wouldn't dispute this as I think I note as I have damage all over my body, that at certain times my body buzzes like when I am stressed, scared, excited and so on. If I watch a horror film my body tingles all over and I am generally very jumpy and nervy and it all ties in. Our nervous systems do not act the same as healthy people. I do meditate and use self-hypnosis techniques to try and help with the anxiety and panic attacks, but sometimes it's a struggle.
  16. PS I don't think lidocaine destroys the nerves as it wouldn't be used. It's a local anaesthetic which calms the nerves down and blocks any pain.
  17. Take it steady and see a doctor if you can and see if you can get checked out again and your meds reviewed.. Are you drinking enough and keeping your circulation going? Have you been extra stressed recently? I ask as my symptoms get worse when I am stressed. I'm working on my breathing now as I know I'm not getting enough air into my lungs. All the best and try and not worry TCP
  18. Andy, I see no one for my POTS, ME or PN/AN. I get treatment for each and every problem.
  19. Thanks guys. I've been reading up on this since it was offered to me, yesterday. I'm not aware of the morphine element as it was made clear during the consultation that I cannot tolerate it and I can see no mention of that in articles I have read. Andy, how is your Lidocaine treatment being administered? The link below explains a bit more about its application. https://www.bcidaho.com/providers/medical_policies/pd/mp_50116.asp As IV means into the vein, I have no issues at present with this and as it's a local anaesthetic is calms the nerves down when all else fails. I've been told it's delivered by a drip and the effects should last about three months. The consultant said that some people really benefit from it and others may not get much relief. It seems to have been used for Fibromyalgia, ME and other neuropathic pain. I have read lots of articles about it on the internet and will look into it further. All the best TCP
  20. Has anyone tried Lidocaine by IV? All other pain relief options have been tried and exhausted. I have ME/CFS and AN and PN. Many thanks TCP
  21. Thanks everyone. It would appear that it does seem to be an issue. I think we really hope that there is going to be true understanding and acceptance that our condition accounts for what is going on. I got the distinct impression that this pair of robots hadn't got a clue and had no compassion or interest in the struggle I was having and it seemed to irritate them. When I see Dr Ali, I shall tell him about my experience and see what he says.
  22. I went for a Spirometry Test today and it didn't go well. The two health professionals weren't very pleasant to work with and the pressure was on all of the time, even though I explained that I was feeling extremely dizzy and my nervous system was buzzing. I didn't do very well and after repeated testing got more and more breathless. I felt dreadful and finally I said to stop as I was getting weaker and weaker. I explained that I had autonomic neuropathy but it made no difference. I was so weak and giddy when I stood up but there wasn't much understanding or help, the guy was more concerned that I didn't knock his table! Has anyone else met this wall of indifference? I am noticing every medical professional is clueless about autonomic and peripheral neuropathy and POTS.
  23. I have Peripheral and Autonomic Neuropathy and POTS. I also have ME. I have just been diagnosed with Intraocular Pressure/Glaucoma and have to be checked out more thoroughly and monitored. My eye pressure is currently 24 in both eyes. I wondered if this had any link to the nerve damage or the meds I am taking. I am obviously concerned. Anyone else have eye issues? I notice that the pain gets worse in and around my left eye when my bowel is full. My nerve damage is worse down my left side.
  24. I would say that the majority of my family and friends either don't get it or don't really care. I've tried to educate everyone as to what's wrong with me but in truth most people don't understand the complexity of the problems aren't interested or don't care. My last boyfriend's parents for example initially asked me what was wrong with me and I told then in-depth, but thereafter they never asked how I was and expected me to be able to do what any healthy person can do. I gave up or sometimes said what I thought. I had to. I have one close friend and even she at times questions why I can't do this or that. People forget so easily.
  25. I'm sorry to here this, Becia. I hope you can find some help with it. I'm currently being checked out for a plethora of sleep issues and it's believed that I have some sort of seizures. I had a polysomnography and the doctor is going to send my to a dedicated sleep centre for more tests.
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