louloutinks

I used to get this a lot. I still do but to me it feels like a lactic acid burn/weakness - like being at the gym and your muscles are really fatigued but you just have do do 2 more leg presses and the lactic burn/weakness is felt. I get it just by getting out the car or bending down and picking up my bag or the cat - feels like that extra weight is far too much for my legs!!

Hi Rockiesgirl No I am not on any meds as yet. I had the poor mans tilt at the start of the year and they said salt and water but it has not been helping. I saw my specilist 3 weeks ago and he is sending me to NHNN in London for TTT as my BP swinging high and low and the salt etc is not working. Mornings are def the worst - seems to take about 3 hours of being awake to function better but I do also get the issues at night. Don't get me wrong, I still do get the issues in the day too, like yesterday I was out shopping and bending down, standing up etc had me getting real dizzy, by the time I got to the till I felt real bad, tachy and drawn. All throughout the summer I didn't sweat (well only under my chin and one armpit) and I am finding now, say if I vacuum, I pour with sweat (and its much cooler here now). Wierd. This thread has been handy for me as I have started a diary and used this thread to keep track! What type of pots do you have RG?? I have heard of low flow, high flow, hyper but not sure what the difference is TBH. Welcome back 718mom. Glad you had a lovely time abroad (lucky you) was it lovely over there?? Also lucky that you weren't very potsy as that would have been a real drag for you.

Hi Rockies Girl - Happy Birthday for Friday gone! What an awful time you had though and I hope you are feeling better. Have you spoken to your partner since and sorted things out - you need support not being dumped!! When I went to A and E here they did seem to know what I was talking about when I mentioned POTS. I have found that salt barely made much difference. I added salt to my foods before I was told to take extra so when I did take the extra salt and fluids, I just found my hands swelled up. My high BP seems to be lessening (still does go high) but not all the time and now my HR on standing is doubling. This morning it went from 97/72 hr69 to 110/77 hr 141 and then to 132/95 hr 164 by walking upstairs. But mornings always seem to be worse.

Hi Bren, hope you are well? I had a lot of bother going on this end surrounding my child and it all got too much for me. Will pm you re that. I am not sure if it similar but I was woken up in the night a couple of months or so ago with really bad tachy and I did not feel with it all. The tachy went on for some time then stopped after a while. Felt trembly with it. I thought I must have had a nightmare as it actually felt like eg when you have to slam your car brakes on to avoid a car - like adrenalin kicking in but without the panic. The next night it happened again, same thing happened, and felt not good with it. Took quite a while for tachy to stop. Did not like it at all and was dreading the next nights sleep but it hasn't happened during the night again since. The other day I had a pulse of 180 on waking and that is as far as it has gone lately. Hope your new meds work for you and all is well at home

BP 148/104 HR 112 morning standing. Sorry folks just typing this in for personal benefit!! 143/121 99pm

Cordelia, this is exactly what is going on with me lately and I am really confused about it. Usually in the morning when I take my BP/HR, my BP is something like 83/52 HR 149. Lately this has changed - eg this morning on waking and standing my BP was 148/104 HR 112 (pulse is very low for me). Sometimes its just my diastolic that goes real high like 120/105 and I have changed nothing in my life. It seems when my BP is really high then my HR is slower. It would be great to get an answer!

Hi Bren, that is a lot to deal with there. Before this started I was pretty healthy (apart from pains from EDS) but since this has started I have got lots of other things along with it too. Arm numbness/pain, neck pain and migraines etc which docs said was thoracic outlet syndrome (mri was clear), kidney function issues, rashes, hives,and all the potsy stuff. Such a pain - I had to drag myself out in the car today to take my son out for some fun. It ended up in disaster as he had a complete meltdown and I was feeling real bad myself and found it hard to deal with. Are you in USA and attending a good clinic for your health issues? Hope they can help you Bren as it changes so many things in our lives. Wow, so you have 'double trouble' at home with your son and husband, lol My son was dx'd with HFA. I thought this was the same as aspergers but the Professor said that he was more classically autistic without the IQ difficulties. A year after they tested his adaptive behaviours and they were in the mentally retarded range (I hate that saying) so despite having a normal IQ in abstract tests he has absolutely no life skills. He struggles hugely socially which is really hard as his mum to see, and it breaks my heart (and stresses me out lol). Is your son HFA, ASP or Class, and has he improved with age - how old is he by the way? I hope you don't mind me asking either

Hi Bren,real sorry to hear that your system crashed and I hope you can get help to try get yourself well and better. Have you got pure autonomic failure or pots or something else?? I have an autistic child too whom has trouble sleeping (2.45am the other night) which takes its toll on me so much as it adds more exhaustion to my situation. I have noticed that my morning BP(esp) is now getting really high as of late and I have had the shakes and dizziness with nausea today - bad day for me. I have a referral to the London Neuro Hosp soon so am hoping it can all be looked at before it gets worse as it does not seem to be settling at all. 2 years ago I only had fast heart rate on standing, then gradually the dizziness set in with low BP and now other things are happening on top too. My specialist told me to 'learn to live within this condition' when I told him how I push myself.

Hi Holmes, thats good news you have found a good combo. I'd stick at the 10mg - I wouldn't want a resting HR any slower than that either! I am 42 now and was dx'd in Feb this year but when I was 18 I was put on a betablocker as my resting HR was about 120. The other thing was that I used to always get dizzy and faint too. Being young I just stopped taking it after some time. Not sure if this was pots that reared its ugly head at a young age or not. Hope you carry on feeling good

Just want to add that I have seen the local specialist about my MRI for thoracic outlet syndrome and he said it was clear. The idiots are sending me to physio for strengthening (this makes TOS worse due to compression). The London specialist said the MRI does not rule TOS out and is sending me to a neuro hosp in London. I have since noticed that I can stick needles in my left arm and cannot feel a thing - even though nothing is wrong!

Good to hear that Traci....just a shame it could not last longer!! My am's are the worst so I dread them but just when I start feeling less dizzy and tachy...the fatigue hits me - one thing or another eh!! Hi POTSYTURVY....think I missed your previous answer but thanks for that. I answered another thread re pots type changing....my BP is getting high on standing lately. At first it was low, dropped a lot on standing, then I got a few odd rises of BP on standing and now it has got more frequent.

Not sure what type of pots I have but I get shivers and jaw chatters for no reason. I also get circular patches of goosebumps rather than all over me.

I am not sure how long I have had pots but was dx'd in Feb this year. I do know that I have had low blood pressure for a long time and I have been aware of my heart rate rising on standing for over 2 years easily and it was getting worse over time. I have been taking my BP readings since about Jan this year and my BP used to drop on standing and I would get very dizzy. I have noticed over the past two months, especially in the morning, that my BP goes high when I stand but mainly diastolic, this morning I went from 90/71 69HR to 149/125 126HR on standing. I have also noticed that with the higher BP my heart rate is not as fast on standing which I think is odd (like last night on standing my HR went from 78 to 100 which is very good for me), but I also feel headachy, can hear my blood whooshing in the back of my head, feel shaky. I am not sure why the change. Every time I stand and take my BP in the past, my heart rate has ALWAYS shot right up and gets higher and higher, but lately my BP is getting higher my HR is lower and a couple of times it has only risen by 15/20 rather than the usual 50/60 straight away - it does raise but takes longer to raise lately too whereas before it would shoot up as soon as I stood - wow there must be something wrong with me rofl!! Not sure what is going on here

Hi ND, do you mean externally on the skin or inside in the muscles. I get burning sensations on my skin so far on my legs, butt and stomach/rib area, but I also get burning in my muscles - I liken it to when I used to do heavy weight training and I overdone it and got the lactic acid build up in my muscles that would cause the similar burning sensation. I am not talking about the aches the day after doing weights which are painful but the burning sensation whilst doing the weights.I get it now for just standing or even if I have got out of my car and lifted my handbag out and that extra weight seems makes my legs/arms burn and feel weak. I can bend over to pick up my cat and my legs get this burning, weak feeling. I did write this down when I went to see the rheumy and he said it's part of the pots.

Hi Jana, I have looked up SFN and some things ring true like the bed sheets being uncomfortable on my skin etc. Not sure if I have read it right but it seems to be a constant thing where as mine comes and goes and maybe lasts a week. I can relate to it saying it affects the upper layers of skin as when I dig the needle in my arm I can only feel pain when it gets quite deep but am aware of something deeper inside when I poke my wrist. The ball of my foot is worse but not sure if because it is a harder type skin. Have also looked up Lyme - they seem to be a ring with a circle in the middle however mine were very dark red but just single rings. I do not think lyme is prevalent in uk. They were going to do an EMG but decided to do the mri but now that has come back normal they have discharged me but I am really unhappy with the decision. Unfortunately in the uk we cannot demand what tests we want. Just have to go along with the GP's decisions.

sorry arizona girl it is thoracic outlet syndrome. Thought it would have been known on here. I have had test for lupus and the ANA was negative. The rheumy said the rashes are due to ANS which baffled me a bit to be honest as he said they will deal with that at NHNN in London. I am in UK. I have had no real answers from my local GPs as they know NOTHING about dysautonomia. I got a sweeping explanation from London doc too and then a referral on. I have eds, pots and thoracic outlet was being looked into but MRI came back negative. My kidney function egfr was 49 now is 86 nd they said it could be caused by dehydration. I have had ANA test, ESR and FBC which were done a few months back - all ok. My local docs are not that good as my last lovely one left just before my dx of pots and eds. I was seen in London by a certain Professor who EDSers may know of and then I saw a new rheumy this week who is now referring me on for TTT as salt and water are not helping my tachy or BP. Thing is, when I saw the 1st rheumy, I didn't realise that they deal with skin issues too. I have had dark red rings on my left hand and arm( that takes a day or so to fade. I get the oval/ circular shape rash on my arms only - they faded but left a feint mark and then come back in the same place and this seems to be if I wash in really cold water. I had red spots (petechiae) all over my legs, inside my lips and on my gums that last for about 5 days but I now only get a few rather than being smothered. The rest I hope is understandable as in my first post. Edit to add the hives. They just come up for no reason at times - other times if I sit in the sun for a short while and I get tachy and headaches with that too. A few years back I was told it was a sun allergy. That is all I have been told by my docs/gps and to be honest I feel they have not given any explanation.

Hi all and thanks for all your great replies. I do have EDS and was told that I have POTS (poor mans tilt) by Prof in EDS and he said I have autonomic dysfunction. The rheumy I saw the other day told me that all my sx's were to do with the ANS. Bit worried as my left arm felt odd to touch with not much sensation, so I squeezed the skin with no feeling so I dug a pin in my wrist and felt nothing until it got half way up my arm then I jumped. This is not right and I am feeling real worried. I really do not know what to do but have been fobbed off today by the orthopaedics. Should I go back to my GP and tell him I am not happy or should I email the original specialist that deals with TOS or wait for Neuro Hospital but it could be up to 8 months wait to see them, I will have a google of all the suggestions from you all. Thank you so much again for your help I'll get back after a google

Hi all Sorry if this is a long post! Back in March I went to A and E as I had pain, painful pins and needles in my arm and I couldn't even pick up a spoon. The London physio done some tests and I was sent to a specialist who said it was thoracic outlet syndrome, but wanted to do MRI to check as my veins were sinking in when I raised my arm. Today, I went to see the specialist (not the same guy though) to discuss results. He said that the result was normal and there was nothing wrong. Which I argued as I have had numbness in my hand for over 5 months now, along with the most horrendous arm and neck pains, headaches from ****, vertigo and hearing problems and arm weakness. He said that if after another 6 months my hand gets weak then to come back. They even said I had a diminished pulse in that arm and I get different BP's in each arm. I asked if the numbness could cause any long term damage and he said no. But he said I should have more physio locally. I asked him if TOS always shows on MRI and he said yes (even though I have spoke to others online who have tos and they said it doesn't always show on MRI) I also see a London rheumy yesterday and he said that he is not ruling out TOS despite nothing showing on the MRI. He also is sending me to a neuro hosp in London for TTT as he said they can deal with ALL my problems there. But the thing is that I do not get is the rheumy said all my other symptoms are due to autonomic issues. I find that hard to believe but if I list them, I wondered if you nice people on here would agree with him or disagree Here goes..... Burning painful patches of skin that are painful to touch that even clothes or bed sheets can hurt. Have had this on back of legs, stomach/ribs (lasted a week), left hip, right butt cheek. Pins and needles in arms and legs that wake me up at night Fatigue aqnd exhaustion but find it hard to sleep Tremors in my left bicep/tricep that wake me up at night and my arm aches in the morning Whole body aches - feels like flu but no temp. Wake up daily with sore throat Hot, cold, hot, cold, never seem to sweat apart from my neck. Get patches of goose pimples for no reason. Bright colourful flashes in vision (like windows media player alchemy!). Grey spots in vision Feel twitchy and trembly. Hamstrings, biceps seem to move by themselves. When I stand, my legs shake really bad but its more of a muscular shake (if you know what I mean) as they do not feel weak. I get the usual pots dizzy and tachy and BP stuff on standing. Crawling restless legs at night made worse if I need to pee. Peeing loads during night. Bowels changes volume/constipation/IBS Breathless and tachy when walking up stairs Chest pains (m shaped p waves and concave upwards st elevations on ecg but no heart attack Brain fog, can't find words, concentrate or follow conversations at times. Very forgetful Hearing problems, get pain with certain pitches and sounds Have a numb ball of left foot that I can stick a needle into without feeling it and I get pulsing buzzing feeling on front part of my foot/ankle. Electric sharp shocks in my shoulders and neck if I turn head Packed on loads of weight (2 & half stone) for no reason now losing weight for no reason Livedo reticularis. Lilac knees and shins. Dark red rings. Hives. Blotchy circular/oval rashes. Petechia all over legs and inside mouth. So....are all the above really controlled or caused by the autonomic system?? Sorry for such a long post but just need to know. Thanks in advance for any help/answers

Hi potsy, I was dx'd with EDS in Feb too and the pots was attached to that. What are the emboldened things above Potsy? Hi Cm and welcome! I have one friend who has seen ALL my bad and good days- he came to London with me yesterday to see the specialist so it was good for the back up as I forgot lots of things that happen to me lol! Me too - I have complete blanks with word finding to the point that I forget what 'type' of word I was thinking of!! Hi Corina,Wow you must have had it real bad but I am glad you are feeling much better and life is good again. I saw a specialist yesterday and told them things are getting worse despite salt and water and now they are sending me to London for TTT. Why do you need a TTT to get meds for this? If they have done the poor mans tilt and they can see the effects then why do they not go from there? Or is it because there are different types of pots and they need to investigate and then know how to treat it?

Hi all, I see Prof *** in UK back in Feb and he did the poor mans tilt. Said it was pots. Scored 19 on the autonomic dys list. DX od EDS too. Went back to the rheumy team today and they said ALL my symptoms were to do with AD. Foot numbness, pins and needles, always cold, choking, tremors, coloured flashes/black spots in vision, painful hearing,gut stuff, and even my skin rashes (etc etc etc) - said some are petechiae. Didnt mention the others or what they may be. I am surprised that every symptom I have is to do with the ANS. Told them that my BP is all over the place and goes really high or really low (and normal sometimes) on standing and they are doing a referral to Prof **** in London. Back in Feb when I see Prof *** it was only my HR that was affected but now I am finding mornings one of my dreads as I feel terrible and they are my worst. Day times I get through and night times are bad. Salt and water has made no difference - it did at first but not anymore. Have read that there is a waiting list for up to 8 months!! Is it true that they inject you with things - what are they and why? Why do they not medicate after a poor mans tilt instead of having to go through TTT.....eeeek. Could someone explain the TTT to me please.

Hi Corina, hope you are feeling ok? Is it becasue of pots that you use a wheelchair...(hope you dont mind me asking!)I like your positivity!

Sometimes helps to come on here to have a vent!

Seems like everyone is having a pretty hard time of it on here right now so sending you all hugs and heres hoping for a better week ahead!! And by going through the threads, it seems that a lot us do not have much support from all our families really - is it because we don't look sick and we just deal with this autonomic dysfunction?? Such a shame really. I am having to go over my writing today as my hands are not typing what my brain is thinking lol....for autonomic I wrote something like cnatmco(what the !!)....brain please get in gear!! Hope you all have a better day today

I went from a uk size 8 to uk size 14/16 for no reason at all. 2 and a half stone in weight went on for no reason at all. This was 2 1/2 years ago. The past couple of months I have lost nearly 3/4 stone for no reason too. Is this down to autonomic dysfunction then??

My HR is more noticeable in the morning but I think that is due to high or low BP I get when I wake up. My HR is a tad more settled at night I suppose but it always rises on standing. I dread waking up in the mornings!