louloutinks

In reply to train boy mum, I get that too. Esp in the mornings on waking when I roll over to turn the alarm off and my heart goes wild! Thanks so much for putting the link up - it has explained a few things that I have been worried about - vertigo nausea, chills, fevers, cold hands, stomach stuff,bp variations and the terribly low BP's that my doc said I should be dead with, amongst others! I was diagnosed with Pots and sent on my way, so no real explanation, or information given to me. Excellent article!!

Hi Sally - does it stop the twitching? If it does - where can you buy it from please??

Hi now what I have never heard of that tethered cord. I have had issues when I cannot stop going - 13 times in one night and then have problems trying to go, but this twitching of my legs when I need to go has been going on for about 2 months. Unfortunatley, I have not got a neuro right now but am being referred back to my rheumy. Hopefully she will check out my numb arm and all this trembling stuff!

Hi Jennifer thanks for reply...so the twitching and trembling is to do with ANS? I havent been able to discuss it with anyone but have booked in to see a rheumy who I thought could spread light on things! If not, maybe she could send me to a neuro. The accident and emergency saw me the other night due to numb arm, did a neck xray and wrote to my docs to tell him to send me to a neuro for MRI but my doc refused so I asked him to send me back to my rheumy! Soem days I do not get the twitches or trembling of my muscles but when I do have them this si when I get the twitches when I need to pee - very odd!

Hi all just have to ask this question as it is driving me mad. I often get muscle twitches in my biceps, and thighs if I move them slightly and the muscles start trembling really fast but slight but I have noticed at night (I get restless legs too) if I need to pee, my legs twitch and jerk. I go to the loo and the legs are then ok. Is this to do with POTS - all the twitching? Some days are better than others and then it goes altogether then comes back fully. Any ideas??

Hi all, I get the low temp too. I am always so cold - even in the summer I have my electric blanket on at night! I get terrible livedo reticularis too and that will mean I will not warm up for hours despite tons of clothing and heating on! I get worried for my young son who's temp is regularly 94/95/96 - he really feels the cold too just like me! I hate being cold!

I went to UCLH in London and dx'd with ehlers danlos, autonomic dysfunction and POTS. The Professor told me that POTS was a very common occurance with EDSers. I too have very silky, velvety stretchy skin, subluxtions of hips, knees and Sacro joint - which was the worse pain I have ever felt in my life. Can you not arrange an appointment with a good rheumatologist? You need to find out what all these issues are about

well I have worn a pairfor the first time today and it has stopped all my livedo in my legs. I took them off a while ago and the livedo is back. Dint think to check bp though. Have heart rate monitor on today as been to gym for first time and have left it on since so I know my heart rate is still all over the place!

So the blood vessels get bigger- sorry I am new to all of this! My livedo or whatever is is gets smaller if I get in the bath.

Hi Lieze when you say dilate from warm water, what is that??? On the monitor side, I am after a good one as am planning to take up exercise (haha) and feel I will def need to have one of these as heart rate goes mad just by walking up 14 steps! Is it ok to exercise with this pots thing??

Am hoping that is not lupus. I can see the likeness to livido on my arms and legs, it is just the other rashes I get that make me concerned. Am keeping everything crossed for Monday lol!

Me too. I like tea but coffee makes me feel better.

Hi Dani I have just started to get vertigo on top of the usual dizziness and boy its horrible. If I turned my head the whole room spins and I feel nauseous. For the past year or so though, my ears have a kinda whooshing sensation and amplification of sound that resonates and it hurts. When people talk to me sometimes I wince as it hurts, so was not sure if it was to do with that or if it is just another issue to add to the list. I get the chronic fatigue, but at the moment (which is highly unusual) I actually have some life in me. And at the spur of the moment, I paid my friend a visit! How lovely it was not to feel like crap and be able to get ready and go without debating over every detail - or putting it off. I really do hope that the results are good for you

Hi Autumn Sounds similar to what I get. I have always been on the low side with the BP and have been taking my BP since diagnosed with ehlers danlos and Pots. My blood pressure seems to be all over the place. I can stand up and it can either drop by around 20mg or it has even gone up to 151/?? which I was very surprised at. After walking upstairs my bp can go to 67/60. My heart rate usually raises on standing by 29 bpm and has even risen from 74 to 149 on standing. I have noticed that the longer I stand the faster the heart gets. As dysautonomia is the brain sending the wrong signals, I just think at times my brain activity must be completely screwed to be acting this way! I have also noticed that when my heart pounds out of my chest, the systolic reading is very low for some reason. Oh to be normal again

Went to the docs yesterday and he sent me for ANF and kidney function test, and rheumatic screen. The rash could be levido reticularis or sle. He took my BP supine and standing and needless to say HR went up and BP went down! Since they recieved the diagnosis letter from UCLH they are taking me seriously at last!!! Get the blood results back on monday and am really hoping it is not lupus

Hi Friday, I have taken some pics and am seeing the doc today. I did not see anyone about it after I came back from Dubai. I did go when the rash came back and they said they wasn't sure, siad it could be acne, said it could be perioral dermatitis and gave me liquid antibiotics and that was that. As for the dischidrotic eczema, I went back a few times as nothing was helping it so gave up in the end. Thing is I have had these symptoms since 2001 and what I thought was blood pooling, i have had that for years and called my self corned beef legs. However for the past few years it is becoming darker, more frequent and more distinct. Thing is, when I went to London UCLH, I didn't think to mention any of this as I didn't think it was related. I dont tend to visit the docs much to be honest when I get things and Ihave never thought that skin rashes and joint pains etc etc could be linked! I know in Dubai I had heat rash and urticaria and then I had the other blotchy rash like pooling too. Hopefully my doc may be able to tell me from the pics what all these odd things are

Hi everyone, Just wondered if anyone could explain the effects of lack of blood to the brain? Can it cause vision disturbances and confusion? A few nights ago I was laying in bed watching tv and I had an odd feeling - like a wave inside my skull. In my vision I could see blackness from all sides which made my sight like tunnel vision and I felt confused and peculiar. I felt really tired and went to sleep. Could this be due to lack of blood?

It seems that since 2001 I have just gone really down hill and the rashes I get look so like the lupus rash. This is probably the wrong place to ask but you never know - someone may have it as well as pots!!!

I am waiting for the appointment and will not turn it down. I hate talking about these things esp face to face but as you have all said it will get me the right help and diet. I thought I ate pretty healthy, lots of fruit, veg, fibre etc but hey ho!

Hi Sandy Have just looked at that and it doesn't seem like that. I have read the lupus site and been through all the bits and it seems like a lightbulb moment! Not sure if you can have EDS and lupus?

Also have severe constipation, lump comes up in right elbow and terrible headaches daily with flare ups. I also have BP issues. Really low 37/30,low, normal, and high. Why the heck did I not put this all together before and go see the doc.

Hi all agian, just wanted to ask if blood pooling looks the same as lupus erythema on the legs. After being dx'd, I have really taken a good look at ALL my issues and so have been googling - not such a great idea I know but I am not sure if I have come upon an idea. 8 years ago I went to Dubai for 2 weeks, and within the first week I was covered with hives - like a nettle rash. It then progressed into a huge odd rash over my face and round patches all over my body and I was very unwell. The paramedics at the hospital did not know what it was. Since then, I cannot sit in the sun for long - I used to worship the sun - but now I come out in rashes if I sit in the sun. Now this is around the time I felt some differences with my body, like getting stiffer esp at ankles...I have always had joint pains due to ehlers danlos. I have since had this rash on my face a few times with swollen glands and mouth ulcers and was so ill I had to stay at my mums so she could take care of my son. The docs saw the rash in the last stage and they said it may be perioral dermatitis. I then started to get a rash on my feet about this time too. The dcos were not sure but in the end said it was dischidrotic excema but the creams made no difference. The skin on top and just below my ankles has become extremley thickened - so much so that I can pull at it and it will stay stuck out. The right ankles skin will also have a purple ring and the centre will dry up. The right ankle has gone purple and swelled right up on two occasions. I also had tiny red dots appear on my legs but they go but come back. I also have hundreds of brown dots on my legs if I stand for any time or am cold (which is more than not).Get neuralgia in my legs - burning, weakness, shooting pains. My ankles and legs are mega stiff in the morning and can be very painful. And what I thought was blood pooling looks like erythema. My hands have got so old, knottred and thick and they also swell up and a red/purple rash is present in between my finger joints. I think I also have raynauds my hands are freezing and go white in patches - almost a greeny white on the palms.They will then go bright pink with loads of white tiny blotches under the surface. My hair thins out in patches then grows back again. I get a net like purple/brown rash on my feet and legs and recently I have noticed I am ghetting a rash on my arms that is either circular or nearly circular but white in the middle. I get red patches on my face for no reason. Swollen glands for no reason and it makes it hard to swallow. I am sure I get chilblains in my toes - it used to be in just the right foot - I thought I must have broken my toes and they just were playing up and then it started in my left foot too so obviously not a break. I also have stomach issues, POTS and all that fun stuff!Get issues with hearing. Weight gain and loss for no reason.Severe fatigue - some days better than others.Dry eyes and conjunctival ulcers. Please can anyone on here enlighten me if they know about lupus or if they can help me with this.

Oops just seen the date of first post....d'oh! :rolleyes:

Hi Macks mum, have you checked out for general essential telangiectasia (GET). It can follow on from scleroderma. It can start off as a tiny capillary then spread. Just a thought. Funnily enough I am visiting my docs as I really think that I have this scleroderma. My hands are so old and I am 41 yet thet are so wrinkled and knotted. Raynauds is present too. I have been looking up about this the past couple of days thats why I recognised the look in your photo - I may be wrong. Since being dx'd and I have looked into things, I realise now that I should have seen the doc about more things....all the small things add up to make the larger picture

Hi Reen, thank you for the link. Have taken a look and am quite surprised at what you should and shouldn't eat. Seems liquids are good - and it states that coke is ok - if I read that right - not a big lover of the fizzies.