Mermaid

TCP, Yes, but don't know how you get one in the UK! Certainly not outside of London hospitals anyway, and then there's the getting a referral and so on... ....

I definitely have temperature regulation problems, seem to feel much too cold when it's cold and much too hot when it's warm. At night, sleeping I get too warm and wake up a blotchy, itchy, vasodilated mess, ears, nose, hands, feet, legs, everything is unreasonably hot. It takes me a couple of hours to get anywhere near normal in the mornings. I'm in the UK and so it's not hot, hasn't been so far anyway). Khaarina, I can see my veins too, green in my case as I'm darker skinned, looks like someone has drawn them on all over. In my hands and arms they bulge out horribly. This is all since POTs started. It's really weird, I try not to look and they do disappear when I'm cooler. I knows this is normal physiology but absolutely not to this extreme extent. Blue, we've spoken about erythromelalgia, although diagnosed with it, I'm still not sure it's what I have. But something is going on, it can look like erythromelalgia but I don't have the extreme pain that others with the seem to have.

I've been diagnosed with POTs and also EDS, small fibre/erythromelalgia by the same doctor but the EDS/small fibre aren't formal diagnoses in that they have been tested and confirmed. EDS is what the doctor believes/suspects underlies it all, he has had a lot of experience in seeing the 2 conditions together. I've always been 'bendy', no dislocations, some joint problems but no more, I think, than other non bendy people. No-one has suggested seeing a rheumatologist for an EDS diagnosis and I haven't pursued it as I didn't think it would help/ make any difference to treatment. I have been thinking about it lately as it might put my mind more at rest and help me to believe that all this is just because of EDS and not anything else. Hholmes - I've been looking at an EDS forum and really can see that these conditions do seem to go together!

I am lucky to be able to work from home, no standing involved just sitting at a computer. As long as I take breaks to move about and am able to keep myself and the room at the right temperature, I can do 5-7 hours a day, but I don't do it every day. It's freelance and so I need to take the work when it's there and there are deadlines. I get blood pooling sitting feet down and so have them up under the desk. So far I haven't noticed any brain fog, other than general forgetfulness, where I've put things etc which I think I had anyway. I would struggle to do an outside job, unless desk -based and in a temperature controlled, by me, environment. Working also helps to keep my mind occupied, which as TCP says is important, otherwise I'm not so good at focusing on the positive (something I need to work on). I've always worked and so I'm really glad I can continue as we need the income to pay mortgage and so on... I realise I am fortunate in being able to do a job that can be done from home.

For me drinking a glass of water fast and lying/sitting down slows things down immediately. As soon as lie down, as long as it's not hot, my HR goes back to 50/55, that, at least, is constant. Standing in mornings is up to 120s. Moving arms can take it up to 130s. I'm taking beta blockers to help control this symptom.

I get the mottled red/white purple legs/arms too unless limbs are up. I like the corned beef description! I do think though, that I've read other people on the forum with hyperadrenergic POTs saying they too have blood pooling and so not sure that it's related to type. In the UK doctors don't seem to talk about type, in my own experience.

Hi Gemma, probably something to keep an eye on. The only thing I've seen re changing patterns is to do with overlap symptoms, that is mixed symptoms of different autoimmune conditions. Perhaps ask your rheumatologist at your next appointment. I've still not had results of my latest ANA. Will keep you posted. Best wishes Barbara

I'm only noticing 10 mg. And not really feeling better. I mean notice it kicking in with goosebumps etc.

I was thinking of getting one of these: http://www.chillow.co.uk Seem to have international distributors but more than 8 dollars. Blue, Agee with you, not the same as having a ice pack next to skin.

Blue Thank you too for sharing your experiences. Not warm today in the UK and I enjoyed a small glass of red in honour of it being the weekend. As you say we have to do whatever we can to get feelings of normal old life.

Hi Gemma, the formal name of the test is Anti- double stranded DNA IgG I think if your doctor said you didn't meet the full criteria for Lupus then they will have done this test as I believe it's one criterion. The pattern of the ANA is also important. For Lupus, the pattern is homogenous, (mine was this) but I believe that this pattern can also show MCTD, mixed connective tissue disease or UCTD, undifferentiated connective tissue disease. These diagnoses can be given in the case of a continuously positive ANA PLUS auto immune symptoms. If my understanding is correct, they mean symptoms of several autoimmune diseases but not meeting criteria for any specific one. I understand prognosis is good as most people with UCTD do not go on to develop a full autoimmune disease and symptoms often remain mild. Some links below to general info http://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp https://www.icgp.ie/assets/9/EB9FF8A7-19B9-E185-830200BC23B0AFCE_document/ANA_43-44.pdf http://www.fpnotebook.com/rheum/lab/anstngptrn.htm I hope I haven't spooked you by mentioning this, at least it's something to check for peace of mind when you see your rheumatologist. But from reading generally and from this forum, my opinion is that testing in the US is more advanced and thorough than in the UK. Barbara

Hi Gemma Your question/comment: Did they test you for something else besides ANA, like RA, and other diseases. I was tested for a lot, but only my ANA shows positive. Answer from me: I think the ANA was for autoimmune diseases in general including RA, but I don't have the rheumatoid factor. I agree, LUPUS is horrible, I already knew I didn't have that because I'd had another specific test for it called double stranded DNA. It's tricky because in the UK we don't always know what we've been tested for. At one point I was I hospital for 2 weeks and they did a lot of blood work, no idea what it was and the info is not shared. I have high thyroid peroxidase autoantibodies too, no idea if of significance but shows an autoimmune process. Thyroid TSH is in range. Do they test in US for thyroid too? Barbara

Hi blue, I wish I did have suggestions, more like I can say what hasn't helped. Propranolol hasn't - I seem to have Raynaulds type symptoms too and this drug makes this worse. Venlafaxine - ( see comments in this post) not sure about this one, thinking about it, things do seem a little worse since I stopped. I haven't noticed any relation of symptoms to food. Alcohol starts a flare immediately which I am not happy about. I really enjoyed a glass of red wine. I can sometimes have drink in the daytime, as I type it I know that sounds awful! Periods of inactivity also seem not good for me. I can guarantee that if I try and lie down and relax in evenings things start to happen. Hard to get balance right as too much time standing starts things too. Compression socks definitely help. I am thinking of getting some compression for the arms in the summer so I can type for longer and do house work etc. I wouldn't wear them out but then I won't be out in the sun anyway sadly. I've been lurking on an erythromelalgia forum but haven't joined yet. People with this really seem to suffer and I'm easily scared at the moment and anxious about progression. I haven't picked up any tips from my lurking there. I really don't want to have these flares, they are uncomfortable and painful but not enough for me to try gabapentin etc again. Another thing is for me that the flares seem to trigger some sort of anxiety, panic type symptoms too. I know that it's the symptoms first not the other way around. I think erythromelalgia sort of needs a post of its own somehow. My doctor said a subset of pots patients have it but it doesn't seem to feature too much in discussions. Really I think it's just an extreme of autonomic dysfunction in some way? I'm not giving up looking for answers yet or am willing to put this down to EDS, will keep looking and will keep you posted. Best wishes to you Barbara

I've seen a lot of doctors now and think I am starting to hit on some things that work, at least to convey information quickly, if not for useful treatment... For my last two appointments I prepared a one page A4 summary with the following headings and bulleted points under each heading. Headings as follows: Current diagnoses (include what, who by, date) Current medication: bulleted list Current symptoms: bulleted list How the above affect my daily life. (More bulleted points, and think this heading is important) The last doctor referred to 'an excellent summary' in his letter so think it works and it saves wasting time bringing doctors up to speed. I haven't been able to find one doctor to look at anything holistically yet. I think next time I am going to add another heading something like: Why I am seeing a rheumatologist, or cardiologist whatever And under this heading, list somehow what I'm hoping for/ expecting from them. I would not go over to two pages, they can't cope in my experience with that and bullets of facts, no emotive statements, work best. If you have symptoms that are episodic, I have skin colour changes, take photos. I've found flicking through a lot on an ipad doesn't work, so pick the 'best' five or so. Even better take print outs that can stay on your file. I also have a list of prepared questions but haven't been great at either getting onto those in the time or getting answers. Work in progress there. Another thing is demeanour/appearance - when I was first sick and in a lot of pain and couldn't get anywhere other than obscure psychological diagnoses I often got tearful which never helped but really my behaviour in the circumstances was unsurprising as many here will relate to. Now I'm starting to run things more like a business meeting I think I might be presenting too well, it's a point my husband has raised. Hard to figure out a middle ground here. I also can't work out whether I go looking awful or try and look my best with good clothes, make up etc. Hard one, at last appointment the doctor started off with 'You look well. Should you really be here (giggle).' He meant well but not always best thing to say to someone who feels awful every day. I just said something like 'thanks, however I know I used to look and feel a whole lot better' . Hope some of this helps, sorry for length! Barbara

Thanks, the patterns are great! The compression is low but better than none. One thing, as kjay said, fit is key, and one size can be ok if you have average foot size, ankle and calf width. Personally I have very slim ankles and calves and so some of these one size are like wearing normal socks to me. Also for UK people, I've found that ordering in from US carries a hefty import tax, something I didn't realize before. I've ordered some from www.butik21.co.uk, some of the (sadly plain) styles come in slim calf sizes. There is also butik.21.com for non UK customers.

I find knee highs do help too. What companies are these that do different patterns? Are they UK?

Thanks for the information. I'm in the UK and Ivabradine is licensed here,as you probably know since you mentioned it. There is a pots.org.uk website that lists it as a potentially useful treatment. I don't have a POTS doctor under our National Health System, I've been paying privately as POTs isn't really known of in Uk but am seeing a local NHS Cardiologist next week. I don't expect him/ her to have heard of POTs but will take info re ivabradine and try to get hold of it. Will keep you posted.

Mine was 1:400, maybe next one will be fine. Weirdly I'm not sure whether I want it to be normal or abnormal. Abnormal means some sort of possible answer. Strange feelings to have. Thanks for your reply Gemma and apologies for taking your thread off topic.

katybug - another thing I'd like to share with you for your perspective is the connection between erythromelalgia and EDS in case you get a chance to explore with your doctor. On erythromelalgia forums there is hardly any mention of EDS/POTs. Of course it's entirely feasible people don't know they have either conditions and there can be so many underlying causes of EM. However typing 'erythromelalgia' into the inspire EDS forum gets pages of results, this can't be a coincidence?

Katybug - sorry you are having similar symptoms. Did you find the pictures on website of The Erythromelalgia Association? I think that's an informative site. Gofl1 - glad you are seeing improvement. Let me know if you figure out an alternative to the beta blockers. I have problems with heat and cold and had to stop one beta blocker as it caused chilblains. I'm using propranolol as can take according to weather as it's take every 4 hours. But without I'm going from 55 lying to 130 making a cup of tea and so need something too. Figuring this out is such an added pain!

Thanks Gemma, I'm being retested next week so will find out. Interesting you have had same experience. I'm being retested as it wasn't a borderline high, a significant high positive. Hope whatever you decide re SNRI/SSRIS works out for you.

I've been on Venlafaxine, an SNRI (Effexor XR in US), since last October until a couple of weeks ago. I did think that i was lucky to have little brain fog but since coming off I have been having real trouble and so thinking it may have been helping. I may go back on it since I need to concentrate (work from home part time). I didn't experience side effects - I was taking it in case it helped with erythromelalgia symptoms. Coming off it has not been easy for me (anxiety and mood issues). I was told that at doses below 150 mg it acts on serotonin only and not norepinephrine. I was a lot below 150. (I came off it because I had a high positive ANA and the doctor said he's seen this happen with Venlafaxine. Not sure he's right and so am retaking the ANA without this drug to see.)

Try and stick with it for a while Andy - it might help for you - here's hoping. I'm back on it too, (really think it's our shared doctors favourite drug . The thinking is that it might help some of my other autonomic symptoms. I feel like, for me anyway, it's like eating Smarties, but will keep you posted. Re hands tingling, mine have tingling pain anyway, with or without Midodrine so can't comment on that. Sometimes I get a goosebumps feeling when it kicks in but really it's not unpleasant, quite a nice feeling really (Pots perversion?!)

I haven't noticed any worsening of this symptom since starting a beta blocker personally. I'm taking propranolol, don't know whether it's a vasodilator one or not. I also take Midodrine, a vasoconstrictor, but don't think it does anything for the pooling for me. My Doctor has suggested I up the dose and take it more regularly to see if get any benefit, so am trying. Trev - the sudden virus I had was fever, some stinging pain in thighs, fatigue, muscle aching etc - shingles was suggested as a possibility but without the classic rash. It was a week or so after I thought it had gone that the trouble started - intense nerve pain in hands and feet, stinging all over and then weird numbness. After a few months Pots, but it could have been years before diagnosis, perhaps never, had I not found this forum. Bren, has any doctor suggested that Graves, as an autoimmune disease, is behind the PoTs symptoms? I've seen thyroid issues listed as a cause for PoTs. The symptoms are so similar. Anyway, I hope treatment improves your overall condition. When you get hot, red and itchy extremities, do you see your veins popping out all all? I never noticed my veins at all before all of this, now I often think I can see them all and I'm not fair skinned.

Also think that this is a very good warning. Lejones and Bren, I hope these discoveries lead to treatment that help you both feel better overall.