Mermaid

Hope things go well for you.

Me too, it seems to come and go in different places. Had it for months on calf, felt like someone was holding a vibrating phone there, had it in big toe too. Most constant for me is a stinging type pain in thighs, knees, like lots of tiny biting insects. Pants too tight, well!! ('Pants' for us in UK are the things under your trousers, I'm sure you didn't have those too tight either )

It was my POTs specialist who gave me the 'erythromelalgia' diagnosis. I saw him again today and he said the same thing - erythromelalgia goes with POTs in a subset of patients caused by small fibre nerve damage/dysfunction so yes part and par of POTS course. I also had a viral illness, not named as anything, in Jan 2013, which kicked off all this. I had the redness and pain in hands and feet first before POTs hit and at the beginning the pain was very intense. I also have EDS. Still hoping he's wrong. Mine also feels sort of systemic as can affect ears too and scalp - but not so badly. This 'flushing' is my worst symptom as when it happens constantly in hands it affects my ability to type (i work freelance from home) and in warmer temperatures keeps me inside, as well as unupright, near a fan to cool it down. My veins also pop out, a lot, very itchy and with a feeling of intense pressure to add to the rest. My hands don't swell but toes do. Also feel VERY anxious about this after reading around on the Internet. My doctor today said he hoped it could be improved by treating the POTS. Not had great success there yet, still trying different things.

I get the same, also in hands, worse in evenings and can happen sitting or lying as well as standing. My doctor has also said this 'venous pooling' is 'suggestive of erythromelalgia', and that a subset of people with POTS have it (makes me wonder though why it doesn't feature more on this forum as a diagnosis). Also, while this is definitely uncomfortable for me and means activities are limited, I don't have the intense pain that other erythromelalgia sufferers seem to have. I've been reading up on erythromelalgia and looking at a forum, definitely prefer your neuro's diagnosis - perhaps just autonomic dysfunction generally?

Thanks Chaos, very interesting. Wouldn't it be lovely to 'regain autonomic balance'?

The unwanted pair has been taken - any information from UK members still welcome. Becia, hope all goes well with your move to waist high.

Elisabeth, I'm really sorry to read that you haven't found anything to help treat the pain of the erythromelalgia but pleased that at last you have a route to hopefully get somewhere with this. I can certainly understand your frustration with the team not looking wholeheartedly and flat out for a root cause, and with the autonomic team and neurologists there not being on the same page. My situation has some similarities to yours although I do not have the extreme pain that you do. As you know I have seen the same (now retired) autonomic specialist as yourself who has said that the redness and 'venous engorgement' in my limbs with heat/warmth and also in the evenings whatever the temperature is 'suggestive of erythromelalgia which is a problem with the small nerves'.' He said also that a subset of POT/EDS patients have this vasomotor instability. This view seems similar to that of the autonomic team there. I really still am not sure, makes me wonder why there aren't more people on this forum with erythromelalgia and more people on erythromelalgia forum with POTs. I have been reading one forum and could only find two people, although I realise both are syndromes with a spectrum of symptoms. I also have just had a positive ANA 1:400, the NHS rheumatologist that I have seen locally did a test for Lupus (double stranded DNA) which was negative and now seems to think that the positive test is caused by Venlafaxine. I have been trying a low dose of this since October to see if it would help regulate the autonomic nervous system. This is in spite of the fact that I do have lots of autoimmune symptoms as do many with POTs. I was wondering whether you had come across the yahoo group for erythromelalgia? I'm sure that you have but thought I would mention it just in case. They seem pretty clued up on possible treatments. I do hope that you hear back from the NHNN soon and that things move on positively. Wishing you all the best. Barbara

Yes, get this too, standing and sitting. Almost feels like suddenly my body forgets to breathe by itself and I have to take a deep breath and get air in. I think upright it's to do with lack of blood to the chest, as Andy proposes, and sitting, no idea.

First, apologies that this post targets UK members (all comments from other members of course welcome with tips about compression and fit. I have letters from both an autonomic specialist and a rheumatologist recommending wearing of compression. I've been using them for the past year and find them vital to help combat vein swelling/blood pooling. My understanding is that GPs can prescribe two pairs every 6 months under the NHS. Last September I was given two pairs of Activa (a cheap brand). Neither fit or was wearable. I have size 42 feet, very slim legs with ankle 20cm, calf 32 cm and am five feet nine tall. Knee high pair come on and off like socks (in smallest size) and the thigh pair, without elastic top (the nurse suggested suspenders and no she wasn't joking sadly) came to just over the knee. Both were open toe because of my foot size and covered about half the foot. (I do not want open toe in Winter with chilblains etc.). Both were compression 2, as recommended, but turns out UK compression is not the same as US and EU and class 2 UK equates to class 1 US/EU. I made a case to my GP and she prescribed two pairs of Jobst opaque class 20-30mg which come in tall sizes and fit a 42 foot. (They also look OK which is, of course, important in terms of wellbeing etc. for those that have to wear compression every day whilst facing a myriad of other symptoms also.) I have been unable to find any other brand that come in long size and have the same fit and that can be put on prescription. However, my GP is unable to prescribe these again because of the cost (the practice partners are blocking this). I want to write and make a case but first of all would like to get experiences of other UK compression wearers. So, answers to any of below questions very welcome. Are you able to get compression on the NHS? What brand etc.? How often? Does anyone else have hard to fit dimensions? Any brands you would recommend? Any other useful info pertinent to the above? In the interim I have been buying my own. Jobst are available in the UK from a company called BSN medical much cheaper than on websites but still pricey. I've also tried other brands such as Juzo, good but also expensive and have also made some mistakes. Consequently I have a new unworn pair that I am happy to pass on, free of charge, to anyone who feels they would fit. (UK easier because of customs/postage costs). They are: Rejuva health thigh high, closed toe, black diamond pattern opaque, in size small http://www.rejuvahealth.com/rejuvahealth-opaque-diamond-thigh-high.html They should fit someone five five/six or under and with uk size 6 (at a push 7) feet or under that is within these dimensions: Ankle size is 18-21, calf 28-38 and thigh 40-62. Happy to send on to first person to PM me that thinks they would be useful. Barbara

Hi Freaked, yes, I get this too and know the feeling that you mean. My resting heart rate is always low 50s but typically goes into 40s lying down and even high 30s. I was taking bisoprolol (not sure of US name) but unfortunately decided to stop because of lying down heart rate. Now I take propanolol twice a day (not evenings or times when I'm going to lie down). I also have low BP. My GP says not to let it go into 30s - not sure exactly how I stop this! I have seen a rheumatologist who said it's the trade off from taking a beta blocker to combat high heart rates. I am seeing the doctor I see for PoTs at the end of April and intend to ask about this then. WIll let you know outcome. Barbara

And also...the (US) doctor on this link says he hasn't seen a single CFS patient that wasn't hypermobile. There is so much crossover between fibromyalgia, ME, PoTs that I personally get confused, overall there are so many people suffering that it really should be sorted out of course. http://www.research1st.com/2011/10/31/joint-hypermobility-and-cfs/

Hi TCP, well those things aren't present in the majority and so it's possible I'd say. As it's genetic there would likely be someone else in your family with loose, mobile joints, though not necessarily autonomic issues. My brother likely has it, and one of my sons has hypermobile joints too. I have sore lumps around bottom of my feet at times, no idea what they are called. I believe Professor Julia Newton in Newcastle is making links between ME/PoTs and hypermobility too. At times I feel skeptical about EDS as a cause for all the things going on with myself but there's too much research now showing links between hypermobility and autonomic dysfunction for there not to be something in it. There also seems so much crossover between fibromyalgia, PoTs and ME. I don't know whether you've seen the article below summing up perspectives from London autonomic units. http://ukpotsies.org.uk/wp-content/uploads/2013/01/nrneurol.2011.187.pdf Barbara

Andy - Lying in evenings watching TV down to 38-45. It doesn't feel good. Up to 145 walking - I'm not doing much of it...

I'm in the UK and I'm not sure we can easily get Gatorade here. Personally I've never seen it. I use Nunn tablets, rehydration tablets enhanced with electrolytes, and find them helpful. You can get them from cycling shops etc. Again, these are not cheap. I've been ordering them from Amazon and getting them cheaper than in shops.

Hi Anastasia, I haven't posted much on here yet, I do intend to more in the future. I read your post and just wanted to pass on something that was said to me about PoTs/EDS. I have PoTs and have been seeing Professor Mathias, a consultant in the UK. He is generally thought to be the leading expert on PoTs/EDS in the UK and either he himself or a member of one of his teams (ex teams as he is now retired and practices privately only) seem to have diagnosed many, if not most, of the UK users of this forum. He has a wealth of experience in both diagnosing and treating PoTs. I will try and post a link to a paper summarising some of his research. He believes that as well as PoTs I have EDS also. He calls it the 'umbrella diagnosis'. I said to him that I'd read that if PoTs was as a result of EDS that meant it could never improve or go way. He replied 'not in my experience no. I have seen many patients improve.' Also EDS, like PoTs, is a spectrum and joint symptoms can also wax and wane. Personally I haven't pursued a formal diagnosis of EDS for myself yet as joint symptoms for me are mild in that they aren't the thing that's stopping me doing things. My main problem at the moment, along with blood pooling and tachycardia/ bradycardia, is swelling in my toes/fingers overnight and random swelling and redness of hands and feet and always with warmth. Whether this is EDS caused I don't know and I do entertain fantasies of kidnapping a doctor and strapping him to chair until all my questions are answered. I do get over this though! I would also say that I managed to get to 50 without knowing that I had EDS, although when I look back I can see it. Until my symptoms hit suddenly in Jan 2013 I was at the gym 5 times a week and very fit. Yes, over the years I had joint problems but I just thought they were normal. I've had back problems, ankle problems, elbow problems, wrist problems and they have all reared their head, stayed for a time and then gone into the background again. Anyway I hope these comments help you. I often worry about posting because I don't want to make anyone feel worse in any way. Like many of this forum, everyday I wonder what is going on with my body and how I'm ever going to find out. I read and read and it just often confuses me more.

Hi Elizabeth, first of all I really hope that you find something to help with your symptoms very soon. I can't offer any real help but can share that I'm having similar thoughts re Midodrine at the moment. (I am also seeing Prof M and getting a private prescription as my GP won't prescribe it. I saw your post on another UK forum.) I've been experimenting with different doses since end of September. It hasn't changed my low BP or high standing heart rate but does help with the blood pooling in legs in that I seem to be able to be upright longer before the heavy blood sinking feeling. But since the weather got colder I seem to have developed chilblains. Most toes are swollen with some blistering. My GP thinks it's chilblains and I guess this is one condition she will have seen and know about. So I have cut the Midodrine down and have seen some improvement but this could be just because of time, keeping feet warm etc. I do find that Midodrine is a 'take when needed' medication. So, I take a dose now depending on weather and whether I want to try and walk anywhere. But like you, I'm really not sure what to do. I had hoped that it would help more than it has. In the summer I thought my problem was hot feet and now I realise I seem to suddenly have both extremes and so life is a constant battle to keep hands and feet at the right temperature. I've also had hot red ears and red face patches but this isn't every day. I also understand the frustration of not being able to talk medication effects through with doctors easily. We may be in the same situation, GP can't help, and so it's another expensive private consultation to talk about next steps. It's more than frustrating actually.

Hi Galatea, I think that's a great idea. I would be happy to help with any organizing. Barbara (Diagnosed POTS, NMH)

Hello GN1978 and TCP, can I ask who you both see for your POTs treatment?

Hi Galatea, I'm new, just responded to 'anyone else in the UK' post. I also have problems with blood pooling lying or sitting, at least that's what I think it is, hot red hands and feet with huge veins, warmer the weather the bigger the veins. I spend all night making sure they're cool and uncovered. Had a terrible time in the hot weather this summer, shame I used to be a real sun worshipper...

Hi all, I'm also new and from the UK, living in Shrewsbury. I've been reading the forum for a while and the info helped me to get a diagnosis. I'll post my 'story' in a new member intro shortly. I am diagnosed also with POTS/ EDS after a private appointment and tests with Professor Mathias. I'm currently trying midodrine but not seeing any change in BP and heart rate and have now gone up to 5 mg. the whole EDS thing was a surprise to me. I'm not sure what happens next in terms of follow up and trying new treatments. I won't be able to pay for a consultation with Prof m every time i have a question! The STARS website was helpful and I've asked for a referral to a Birmingham specialist on the NHS but I'm sure that will take ages. Also seen a Mast cell specialist in Prof M's team but again this can only be done privately. More tests have been recommended but very expensive and so thinking now about next moves. I'll look at mast feel info on the forum and ask questions to help decide. Nice to meet you all, and know that there are others out there.