TCP

I am sorry to hear about your daughter's nerve pain. My neuropathy came on 8 years ago. I have it all over my body. I have also found out that apart from POTS I have Ehlers-Danlos Syndrome. It took 54 years to get both of these diagnoses. I am hoping to get the neuropathy diagnosed. I think it may be small fibre neuropathy which ties in with the other two conditions. There is also neuropathic POTS to be considered, also Lyme's disease, Diabetes etc. You don't have to have stretchy skin to have EDS, I don't. I have had an EMG but some nerve damage showed but it won't show small fibre nerve damage you have to have a skin biopsy for that. I am taking alpha lipoic acid/acetyl-l-carnitine, D and E Vitamins, B vitamins, calcium, magnesium etc to help with the nerves, exercising, using an EMS/TENS, changing my diet etc does help. I eat vegan, no sugar, gluten, dairy or processed foods. Gluten damages nerves and dairy causes inflammation in the body. I wish her well and hope she finds some relief. Getting to the bottom of what's causing it can help, if that is treatable, otherwise it's about management. I take Gabapentin and Nortriptyline for this nerve pain.

I am on Ivabradine. I tried it earlier in the year 2 x 5mgs per day. OK at first then it upset my bowel and made the buttocks and varicose veins there gorge and become very painful. I came off it. It did lower my HR a tad though. Saw a different cardio and I am on it again only 2.5mgs per day so far. If I try to up this does my bowel reacts. I will see cardio next month and we'll see where we go from there.

I have EDS and POTS

PS I am now wearing them for part of the day mainly when I exercise. I will increase their usage as time goes by and my legs get used to them. I have purchased a variety of compression items to go with those that I already own.

Sorry I can't help with this one, barb10. My cardiologist also suggested compression 2 in full length stockings. I had bought some previously but had issues with the nerve pain, but I am thinking it may well help me to persevere with them in the longer term. Like my doctor says it does help squeeze in and cause the blood to pump better. He suggested I just wear them when exercising to begin with. Thanks for the heads up on the brands. I won't ask my GP as the new head of practice is proving to be very tight with money and even refused the Ivabradine and myself and the consultant had to fight to get it prescribed. Well done for wearing them for so long. Have they helped a lot? How do you get on with them in the heat? I hope that they keep helping you.

1960 Born with EDS H-T 3. 1984 Contracted Glandular Fever, left with autonomic issues and Chronic Fatigue 1992 Diagnosed with ME/CFS, after I pushed for diagnosis. Professor of Neurology diagnosed me. 2007 POTS symptoms and Neuropathic pain (Small fibre neuropathy) came on suddenly hospitalised 7 times. 2014 EDS H-T 3 diagnosed after I mentioned it to GP. Rheumatologist confirmed. 2015 Diagnosed with POTS after I pushed for diagnosis. Had two tilt table tests. Hoping to get the small fibre neuropathy diagnosed.

Yes, it sounds like an exposure to something that could be the link and it's not been picked up.

Yes, gone are the days of a nice refreshing shower! To me having a shower is a real chore now. I can't believe that I used to have a bath every morning and now I am reduced to 3-4 showers a week and they are by no means pleasant. I am hoping so much that with more leg exercising over time this will improve.

I've been using a shower stool for about a year and so long as I don't have a shower that is too warm, I'm not flushing up as much. I still need to take it slowly after a shower. I went to my sister's recently and I had no stool and all of the worst overheating issues came back even with a cooler shower. Eurgh!

Great find! I flush and have patchy redness on my chest neck and head.

Although I had already got EDS 3 , then autonomic issues/chronic fatigue from 1984 after glandular fever, the worst of the POTS and nerve pain came on 8 years ago. Both were in tandem and very sudden with low BP, Tachycardia and burning neuropathic pain throughout my body came on over a period of days. I still take Gabapentin and Nortriptyline to help with pain, which is constant. To begin with the nerve pain overwhelmed me, but now the POTS symptoms are far worse, as I have gotten used to the former. I know with the blood pooling the pain gets worse as day progresses. Lying down eases it a bit. I've yet to get a diagnosis of small fibre neuropathy, a punch biopsy, I believe is required and it is hard to get that done in the UK unless you have a referral. I know that SFN can progress and cause autonomic dysfunction and there is a link with both EDS and POTS. I am hoping now that I am doing the fluids, salt, exercise thing that it may ease. I hope so.

My second tilt table test shows a good margin above the 30bpm required and yet I was less confident as I am now on Ivabradine at a low dose. Funny how it goes. The first test showed signs of Vasovagal Syncope and this one didn't according to the technician. Did anyone else have similar happen to them? I faint and nearly faint daily.

After a long hard fight I have finally managed to get a diagnosis of POTS and Vasovagal Syncope. I was referred to a local doctor trained in these areas of expertise and I got the diagnosis confirmed, Previously to this two other doctors would not commit to saying that I had it. He was very thorough, attentive and actually listened to me and understood all that I had been going through for so long. I am relieved. He appreciated how debilitating my condition was along with EDS, neuropathic pain and chronic fatigue. I could have kissed him, but that would have scared the life out of him! He has given me lots of advice and is trying me on Ivabradine again with a much lower dosage. I am also going ahead with his advice re-fluid intake, salt, exercise (twice daily) and compression stockings etc. I said my main worry with compression stockings is the nerve pain, as I have tried them. He said to just use them when I exercise if they are too uncomfortable. We'll see how I get on with the Ivabradine and adjust or change as and when necessary. I will be assigned a nurse with an interest in this condition who will be a source of support and advice and also some follow-up appointments. He told me it takes time to make changes that will help me, but it will make me feel better than I do now. Earlier this week I had the nerve conduction tests and EMG. The neurologist I had seen a few weeks ago said nothing would show up. I knew that the more widespread small fibre neuropathy would not show in conventional testing on the longer nerves, but some damage has shown up in my calf muscle. It's been a very productive week and one that I am extremely grateful for.

I'm in the UK. It would cost me £4000+ to get to see the right doctor in London (there are plenty of them there), but it's going to take me a long time to save that sort of money. If I could get a referral on the NHS it would be free to me. It's just a struggle getting that sorted.

PS Now I am off meds everything is going haywire with my BP and HR. My GP didn't seem too concerned about the tachycardia leading to Cardiomyopathy.

Thank you so much for your time and trouble to post comments. I finally saw my GP hoping something could be done about my problems as I am no longer on any medication for the autonomic issues. Unfortunately he wasn't sure what to do and wouldn't refer to a. Any clinic in London or anywhere else as the Cardiologist had not suggested it in her letter as a follow-up and b. He said he wouldn't know where to send me even after I threw some of the specialist's names in his direction. He finally decided to refer me to a neurologist for nerve tests and said he couldn't book them in himself. Today I got a letter to choose and book Carpal Tunnel testing at my local hospital. I called the hospital clinic and they said that I wouldn't got full body testing done anyway as it would take 4 hours and suggested I come along have the Carpal Tunnel tests and so what happens from there and if more testing needs to be done. It's all pretty farcical and frustrating. I seem to get nowhere very slowly.

In my case I would say that back in 1984 after Glandular Fever I had what was later believed to be ME/CFS, which I now think was maybe Autonomic Dysfunction. Then 8 years ago, POTS symptoms flared and neuropathy. I do think I have the neuropathy so mild before that which resulted in no pain, but nervous system changes/sensations. This also applies to people with diabetic neuropathy in the early stages no actually nerve sensations are present but damage is already being done. Once the neuropathy was fully switched on 8 years ago it's spread all over my body and it intense burning. Luckily it calms down at night when I lie down. Last year I was diagnosed with EDS at 54! All of these symptoms tie-in and make a more complete picture, but there are still many unanswered questions. I'm actually going for some nerve testing soon. About time.

I know that 8 years ago the dysautonomic issues and neuropathy came on dramatically at the same time.

Hello. Does anyone else have gorged irritating veins in sensitive places, like buttocks and lady parts? I know pregnant ladies can get them. I just wondered if anyone else has them and what was done about them? Thanks TCP

I thought this was worth a read http://hyper.ahajournals.org/content/45/3/385.full

Hi. Yes, I had all the symptoms, of pooling in my legs (and buckling of legs as test progressed), making the neuropathy worse, dizziness, nausea, weakness and sweating. This was all noted by doctor and nurse attending and was mentioned in the test report. My symptoms seemed to have been ignored though in this case and even my mentioning syncope and pre-syncope to the cardiologist has been ignored. Not good, is it?

Has anyone been told to try Tilt Training? I know it works for some people, especially if you are young. http://www.dizziness-and-balance.com/treatment/rehab/tilt%20training.html

Years ago with the ME and possible PoTS, I could sleep in the afternoon and feel OK when getting up. When the autonomic problems increased then the sleeping in the afternoon made all the nausea I feel get worse. I was dizzy, sick and disoriented. Unfortunately I need to rest to relax the nerves because of the pain, but I try not to sleep which is hard!

It looks like being upright in the morning after lying down; when standing and when exercising brings on the worst of the symptoms. No surprises really.

Kkb1216 You sound just like me. Your symptoms match mine! I am having a hard time trying to get a diagnosis of anything. My heart is pumping fast all of the time and I black out and get severe gastric issues and feel very unwell. My brain isn't functioning as it should and it's all very unsettling and I am getting frustrated trying to get doctors to take in what I am telling them.