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Initially to get a dx I sent lots of information to my Doctor to see what response I got and luckily the doctor referred me to a rheumatologist who diagnosed EDS III and a cardiologist who sent me for a tilt table test for the POTS dx. The rheumatologist put me down to have physiotherapy. The 'tilt-training' was suggested after I had the TTT and the doctor there handed me an information sheet explaining how to do it.

Thanks! Yes the tilt training is supposed to help but there is no cure, it's all about managing symptoms isn't it? The tilt training is as follows: http://www.dizziness-and-balance.com/treatment/rehab/tilt%20training.html I'm trying all that I can to help as much as possible. I have never been a fit person and my body does not like exercise. I know some people can tolerate exercise and others not. The ME makes it hard to tolerate exercise and the nerve inflammation also complains with anything too full on or repetitive. With EDS they advocate exercise and building up muscles to support joints and if you have POTS with it is beneficial to build muscle in the lower legs to help with the blood flow. I have some physiotherapy scheduled to start next week and I'm going to be cautious about it as I don't want to end up in even more pain. How have you found exercise?

I was obviously born with Ehlers-Danlos type III (hypermobility) and have only just got diagnosed with it at the age of 54. I have also been diagnosed with POTS and Neurocardiogenic Syncope. Apparently POTS may have started after glandular fever in 1984 which I went on to develop into ME or was it POTS? The EDS predisposed me to getting POTS anyway. So many questions have now been answered. Many loose ends have been tied up. I am starting the 'tilt-training' exercises and working on trying to get my nervous systems well balanced. Fingers crossed!

I know there is a link with EDS, POTS and neuropathic pain and POTS and nerve pain. Obviously I was born with EDS but the neuropathy and POTS came together seven years ago. Naomi, that would make sense about the connective tissue and nerves. The thing is when I saw the rheumatologist saw me she focused on the joint issues and didn't want to talk about the neuropathy (not her field). I see a cardiologist next month about POTS and I'll see what she says about the nerve pain. She may gloss over it. I have seen a neurologist and he was useless. Thanks for the links.

Has anyone got any gallstone issues?

In my case: EDS > EBV > ME/CFS > POTS + Erythromelalgia

The feelings that you describe are common to any disorder linked to the autonomic nervous system. Your nervous system is compromised and reacts more strongly to external and internal events. When someone who is 'normal' fit and healthy they may have a mild stress response to an event, but to someone like ourselves then this becomes magnified 10 fold. As part of this process we become jittery, anxious, edgy, nervy etc you name it. The gabapentin/lyrica didn't help that in me but the tricyclic antidepressant has helped calm my nerves. My moods have changed and I assert myself more and I'm maybe less calm and accepting. I do tend to have less patience but I think other people have this issue, too, especially when you don't feel well. Overexertion will also make you feel wired and anxious as well as pretty ill. I still get paranoia and anxiety feelings but thankfully they are fleeting. The IBS flare-ups for me are a good indicator as to how stressed I am. Some meditation and relaxation do help an awful lot.

Tried again and it's still not working. Shame as I would liked to have seen it.

Many people like myself had POTS come on dramatically with neuropathic pain, which often travels up the body from the toes. Has anyone had the connection explained? Although I have EDS (just diagnosed in my 54th year), the POTS and nerve pain didn't not occur until seven years ago. They are obviously linked but why?

I'm on chrome. Juts tried now and can't get it. Never mind

I diagnosed myself with ME in 1991 after having it since 1984. A neurology professor confirmed it in 1992 In 2007 I diagnosed peripheral neuropathy and autonomic neuropathy. It was blamed on the ME and anxiety I diagnosed myself with Ehler's Danlos this year and it may be confirmed tomorrow (Now confirmed Type 3 EDS) I am going to see a cardiologist next month who has interests in POTS. If neither of these consultants are up to the job I will go to London to see doctors who can.

Seven years ago neuropathy spread up my body from my toes, feet, legs, hands and arms. This was the beginning of the peripheral neuropathy and autonomic neuropathy. The POTS came with it. Many people I know of with POTS, ME, MS and EDS have it. It's common with many disorders. I now have neuropathy all over, burning pain. I take Gabapentin and Nortriptyline for it. Lying down helps. I take supplements to help with the nerves. The pain I have gotten used to but the POTS symptoms I find harder to deal with.

Arts and crafts seem to be the most common where people have websites or sell on Etsy/Folksy/MISI etc. Some people sell via Facebook pages. Lots of art and crafts that anyone can do, like knitting, needle felting, jewellery, painting, crochet, embroidery, eco-dyeing, pyrography etc and so forth. Some people I know proofread, take in sewing, write blogs (adverts pay), make cards and crafts. I used to make jewellery and also paint. Good luck!

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Hello. I have read of similarities and links between EDS and MS. Has anyone on the forum gone on to develop MS as well as being born with EDS? I have read that there is people with MS are 10-11% more likely to have EDS than the general population. I know that there is certainly an overlap with symptoms. I also note with MS that there is a link to EBV and vitamin D deficiency. Personally I have low vitamin D despite eating foods rich in it and taking supplements and I was exposed to EBV which predisposed me to getting ME. I have many of the MS symptoms, although this was dismissed 7 years ago after some neurological tests including full MRI. I am starting t wonder if I may have MS. It would be interesting to know if others have the same issues. PS Sorry for typo in topic title

I don't swim but any exercise for me even a short walk wipes me out. I get very out of breath and my heart goes nuts. My legs and feet hurt because of the nerve damage and later on I get bad cramps. I boost my magnesium levels to help and for this I use oral and topical magnesium.

Yes, I get that, too. If I get hot, tired, just eaten, bowel upset/needing loo, overdone it walked too far, bent/leaned over and shouldn't have etc. Lots of things can trigger it. As day progresses I have upper body flushing mainly on chest and neck and into face and left ear. Yes, cooler shower helps to calm it down.

Mornings can be grim for me. I tend to wake up sweating, jittery, jumpy, nerves going mad and feeling sick. I then get up and feel weak, spaced out and sometimes feeling sick for hours. I've had this for 7 years and meds I take are: Gabapentin, Nortriptyline and Propranolol. I remember feeling icky before going on these meds and I often wonder if they make me feel worse.

I must have had vague POTS symptoms when ME started in 1984 and seven years ago when I was 46 the worst of the symptoms came on over a period of a couple of weeks which hospitalised me. I am now 53 and have no sign of them going and like barb10 have underlying EDS symptoms. I was also under the impression if you had it when you are young you may 'grow out it' and the later you have it the less chance of this happening. This has also been said about ME.

Wow! Well done for finding out so much with your research. You did really well. I hope you can work on this and get some good results. At least you know now what is going on. I wonder if I could get my doctor to refer me for an MRI? I would like to know as I would like to request one as my spine isn't in good shape at all. I have cervical and lumbar degeneration, a buffalo hump, twisted pelvis. Noticeably my waist is 2 inches higher one side the the other. It would be interesting if I have any compression. Many thanks and again well done.

With dysautonomia there seems to be a link with eyes. My pupils are slow to react to changes in light and my left pupil is often larger, too. My optometrist saw a slow reaction. She said it was linked to the nervous system. My sight has never been good in the dark and I wondered years ago if it was linked to my dad's retinitis pigmentosa, but latterly I think when the ME started it was linked to the nervous system changes. There seems to be issues with eyesight with EDS, POTS and ME. Many people get dry eye, too. (Quote: vision problems. This could be blurry vision, or the failure of the pupils to react quickly enough to changes in light.) I was recently dx glaucoma suspect meaning I may get glaucoma as my eye pressure can be a raised. Stephsurf In answer to your question I have major nerve issues with my bowel and when my bowel is upset everything goes haywire. I feel really unwell when needing to use the bathroom. The pressure on my nerves makes my nerve pain much worse and I feel sick, headachey, weak, shaky etc. Not good at all. When I have managed to go to the bathroom, I then get widespread spasm in all the nerves and muscles in and around my gut for hours afterwards. It helps if I drink a lot and my motions are softer. I always know if I need to go more from the way it affects my body rather than from the bowel itself. The way it has been explained to me is that your gut has more nerve endings than the brain and is often called your second brain as it responds so strongly to events, emotions and changes etc. If anything is going on in our body then chances are that the gut will be responding or causing many of the events like, pain, discomfort, nausea etc. So if you have head pain, like I do, it may emanate from the gut and may also affect the heart. After I eat my heart often flutters or judders. I also often get nerve pain extending from my thigh right up the left side of my body into my neck. So you can see how it's all linked.

Resting pulse is 'normally' 70-80 unless your super fit and it can be very low.

Yes as the weather either warms or cools then my circulation changes especially in my limbs. When it gets warmer I start to feel less pain in my limbs and as it cools I get more. Around this time I feel more edgy.

Yes, it's all part of it. I guess dizzy from not enough blood flow to head or maybe even too much with some people. The blurry vision and brain fog from often overdoing things or even if my bowel is upset. It can be a mixture of causes even my hormones playing up. With me the only way I can get everything to settle is to lie down and relax. Nothing else has the same effect. I also find drinking lots of liquid and taking salt tablets helps with the blood volume and makes me less dizzy etc. I hope you can find something which helps you.