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My HR can fluctuate all day long and most of the time it feels quite fast in my chest. If I relax it often wobbles, and sometimes stops before firing back into action. Most times it's around 85-95 and then zooms up to around 125-140 when moving around and by then it is pounding.

I was diagnosed this year with vitamin D deficiency and only found out when I checked out my test results online. I'm taking Solgar 10,000iu per day and I've heard it takes 6-12 months to level out to normal serum levels and the high levels have to be maintained and replenished constantly. People with neurological and auto-immune disorders often have problems metabolising certain vitamin and minerals. I know there can be B vitamin deficiencies and depending on what you have wrong with you; there may be calcium and Co Q10 issues, too. It would be good to have everything checked out once a year.

Good list. ME isn't there and many people with ME seems to get it although there is debate as to whether they have POTS and not ME, but I don't believe this. In my case I had ME some time ago and the symptoms of dysautonomia and POTS came on 7 years ago. Both are maybe linked to the EDS I realised that I had and that is on the list.

I've had ME for years and then dysautonomia with POTS came on 7 years ago. As I looked into POTS, I noted stories about people with EDS and I discounted it as I don't have repeat dislocations or stretchy skin. I then looked at the Beighton Scale and managed to do 3 of the five exercises on the chart. It's not about to what degree you have it to be diagnosed. I also have dodgy joints and pain/clicking/squelching. I also found out that having EDS predisposes people to not just POTS but ME/CFS, too. I used to dislocate my knee when I was younger. I've had the muscle/joint pain with ME for 30 years and since the POTS flared up the EDS symptoms have worsened too, including muscle stiffness. I also get small fibre neuropathy with it which brings daylong burning and prickling. I'm awaiting a proper diagnosis of EDS and POTS. Fibromylagia can only really be ruled in if the majority of trigger points show positive results. I hope you get thoroughly checked out.

statesof, you sound very similar with regard to your reaction to exertion as many people with ME experience.

I have a luke warm shower/bath and then rinse off in cooler water. After I have dried off I lie down for an hour or more depending if I fall asleep or not. I feel fresher if I do this as if I try and move around afterwards I sweat too much and feel very unwell for hours.

Thanks for the link!

It certainly looks like exercise effects people very differently. I kept as active as I could from 1984-2007 with ME although didn't exercise as I've never enjoyed it. I did love to walk as much as I could even though it was very painful to do so. I suffered for days afterwards. Since 2007 when the nerve damage became worse, I can barely function for many days of the week, but try to move as much as I can. Not if I push myself I feel dreadful but having ME/POTS/EDS etc can make for a complicated scenario. It's horses for courses I guess. Some can do it and they seem to do well. Others try it and it makes them feel worse.

I get this if I lean or bent forwards and also if getting up and down from floor, bed or chair to upright even if I do it slowly. I feel very weak and dizzy.

Great tips...thank you! I use a cooling vest and also dip burning feet in cool water and that helps a lot. I also have Del Monte Pineapple ice lollies in the fridge and they have no additives in them and taste divine. I also have a hand-held fan... I put the blind down on the side of the house when the morning sun hits and do the other side when it travels round to the front of the house. I also have a plain spray bottle and spritz myself with it when I get too hot. Like you say plenty of salt and water. Have fun in the sun!

Yes very hot and night and this got worse recently after the one lignocaine infusion I had for pain. I had a bad night last night and ended up with a sheet on and nothing else and I still got hot. I kicked that off and then woke up really cold and within seconds of waking up I got really hot again. I have noted the nights when my bowel is filling up I have more restlessness and heat. I think I may use a suppository before going to bed. I know it sounds horrible but I have noticed that my GI plays a very big part in the nervous system. Yes the veins really bulge and look awful. My feet and hands look bluey green at times and I agree barb10 about them looking as though they have been drawn on. If I raise my arms they disappear temporarily.

I couldn't take part in this one as I can do little in the way of chores and have a carer.

Hi Hearts A neurostim is a type of TENS machine with TENS, EMS and Micro modes. . It promotes healing and helps with pain and inflammation. I purchased mine from: http://neuropathydr.com/ndgen-home-care-products/#!/~/product/category=6800179&id=36037566 Hope this helps.

Thirty years maybe.

I wondered that! We seem to lack the facilities/specialist doctors to do these in-depth tests. I hope we can make some progress soon

I couldn't really answer the last question.

barb10 is a biopsy the way to diagnose small fibre neuropathy?

Yes, CBT isn't ideal and I did mind-training programmes that really helped me to cope with long-term chronic illness and life in general and a therapist came to my home. I wouldn't want to travel to do it. Yes, we learn to read our own bodies and I have diagnosed what's wrong with me long before the doctors do because we end up researching and knowing more. I studied psychology and that was from years of being interested in the mind-body connection and health issues. I was ill with ME for 8 years and worked in that time but haven't been able to work for many years although I have had some periods of self-employment. Thirty years is a long time to have an illness and over the years we do adapt and know what we can and cannot do. Even when I am at my worst I do try and move around as much as I can, but I soon know if my body has had enough. Pacing is the best thing. Deconditioning can be an issue but it's often a word that is also banded about by the psych community who see exercise as the answer and as we know it doesn't work for everyone with ME. Keeping mobile is important though.

That sounds diet-related and that's why gluten and other foods should be avoided. Are GI tracts are so sensitive to foods etc and you can have a massive nervous system reaction. All my worst symptoms are related to my gut. If foods upset me, if I need the loo or if I am stressed it all effects the bowel and sends everything into chaos. You may need to go on an elimination diet to see if it's anything you eat. If it continues you must see your doctor again.

The problem being it makes me wonder how they select their participants. I've had ME for 30 years and I actually improved in earlier years with diet and mild activity however the longer I have had it the nervous-system related problems became more pronounced. I have noted this has happened to a lot of people I know with long-term ME, the nervous system causes more problems and therefore activity becomes more of an issue.

Merlin, I get where you're coming from. I must have had EDS as a child and then the EBV brought on ME and now I have POTS etc. I think it was hasty to dismiss ME as EBV and other things can bring that on. I think you can be pre-disposed to it and then a virus etc can trigger ME. I think POTS can come on as a consequence or as in my case combined with EDS. As you know exercise and ME do not mix and can cause severe relapse regardless of the psych mafia telling us otherwise. The CBT may help you to cope with the illness but will not be a cure and graded exercise is not advisable in many cases.

I hate this too and that's why I need to see an expert in POTS and EDS as soon as possible. I get bitty checks and tests done and no one stitches the whole thing together. Most specialists haven't a clue about such things and only want to deal with things within their own field.

Yes, I get palps everyday and they happen whatever I am doing, even lying down or sitting quietly. I get judders and missed beats and sometimes a stop. I've mentioned it a lot to my doc and they get put down to anxiety, which I know they are not. I have had an echo-cardiogram and other monitoring and they just say sinus tachy and leave it at that. I have had 24hr monitoring and sleep testing done and it's never been mentioned as abnormal.

Yes it's the being upright or evening sitting that brings the pain. When I first get to bed it slowly subsides and goes completely. I wake up without pain and within a short space of time it comes on with a vengeance. It gets worse as the day progresses. I can't wear anything tight and that means compression garments cannot be used. The neurostim does help a lot and I see that as being my lifelong friend.

I think it goes to prove that any health problem can effect people differently. Some people may have a condition mild enough that they can still work, do housework and socialise and others at the extreme end of the scale are house or bed-bound and are having so many problems and complications that they can do very little. Over the past 30 years I have been to both extremes and in between. I think if you have the one health issue and it's not too bad you may be able to live a reasonably good life and work. Many of us may find that this is the case but for many others it's not. I don't dwell on the health issues I have and keep my mind occupied and I am very pro-active within the constraints of the UK health system to find the best things that I can do to improve my health. I practice mindfulness techniques and doing as much as I can to live a fulfilling life as possible. gjensen ~ I fully understand where you are coming from and I wish you well