mattsmum

Apart from the meds I've started to exercise and now i've gone from walking to jogging plus doing weights and toning sessions. Also something I wish i had found years ago. Myotherapy where they use suction cups to move the fluid in the legs to a place in your body that will get rid of it naturally. Its painful but i feel like a new woman afterwards.

I just found and watched this yesterday. Had a good cry. Thanks for validating what we all feel.

Since finding out my diagnosis I was allowed to get a cleaner in once a fortnight for the heavy stuff. No more trying to do the impossible floors/bathrooms for me! In fact now I refuse to do things that will make me too symptomatic. This includes other household chores like hours of ironing!

I had a deep tissue massage in Fiji. It was really good for my circulation lasted at least a month before my legs started to hurt again. A heated massage would trigger all sorts of symptoms. I have often wondered about acupuncture have heard its good for circulation would like to try it but like you is hesitant.

I found i needed Midodrine as well as the florinef to help the tiredness. Mind you I still get tired but no where near as much.

Can take 3-4 days for the florinef to get into the system.

Where do people get these headaches? Mine occur at the back of the head straight across like a tight band.

Call it whatever you want. I am FREEZING cold, my hands and feet and I hate it. My florinef and midodrine help many symptoms but not this. I am literally burning my feet on a blow heater atm and winter hasn't really hit melbourne yet. What am I gonna do!

I think pp was directing this question too. We all know its blood pooling but how can we minimise it?

Geez I can I change my POTS to the weight loss kind? Suspected florinef I dunno but am always hungry have gained 10kgs since starting it then took that off last year through extreme agony. Have always been fat suspect always will be fat. So if any of you are on medication which contributes to weight loss I WANT SOME!

You can just see it in the pooling of the legs and fluid in the legs looks horrible I hate it!

1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? Yes I can watch my legs change colour.

2. Have you ever been diagnosed with EDS or suspect that you may have it? I have EDS type Hypermobility 6/9 on the scale.

3. Do you experience symptoms when lying down even after a night of sleep in your bed?Tachycardia if I get woken up suddenly and I have to get out of bed gently to prevent dizziness

4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS?No

5. Have you ever been informed by a doctor that you have low blood volume?Never been tested

6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel?For sure and stress can bring that on real fast.

7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins?Yes always cold in my hands and legs.

8. Did your POTS arrive suddenly?Yes after a dose of Glandular fever that never really disappaited.

9. Is your skin pale?Yes! Oh you look so pale you must be anemic lets order some blood test

10. Please the top 6 worst symptoms that you experience with POTS:

Major fatigue

Unable to stand for longer than 15mins (with medication)

Heat/cold intollerance

Brain Fog

Excessive thirst/urination

Leg muscle pains

In response to the OP I would say Chronic fatigue causes depression. And my dr explained he thinks my chronic fatigue has come from untreated POTS for so long. Body just can't handle it and tries to compensate for what is going on.

Not being able to do what you want to do or better still when running a family etc what NEEDS to be done on a daily basis is definately depressing. Being restricted to what you can do or having to decide well I could take my son out today but I also need to do the grocery shopping and not having the energy to do both like normal people is very depressing. Positive talk gets you through each day but to say that this underlying helplessness doesn't get to you would be in denial. Are you depressed? Well no because you are still getting up and doing things even by force. The day you give up is the day the depression has won.

I always refer to myself as a rechargeable battery. I only have so much juice before I need to 'recharge'. Medication bought me a little more juice but still by no means measures up to what a normal person can do. I have accepted it is the way it is but by no means do I like it.

Thanks for the poll. Ticked alot of boxes. It also allowed me to show my Husband what I put up with on a daily basis.

Since about 1pm today I've been experiencing 5-8 sec bursts of pain coming from underneath my right foot. Through the top part (sorry brain fog for correct name).

The only thing I can think of why this might be happening is at night my legs hurt real bad to the point where I sub-consiously put pressure on my leg using that foot to block off the circulation to numb the pain so I can sleep. Perhaps I've pinched a nerve or something?

Can tell you it hurts and tomorrow I have to go back to work. Feels like hot needles or the feeling if you have glass in your foot, which I haven't. Only lasts a short time though then gone.

Any ideas? Its so intermittent that I doubt a DR would be able to do anything?

Julia

I'm 6/9 on the scale here complete with stretchy skin. I was wondering if it was worth seeing an EDS specialist at all? Seems my POTS Dr is walking in somewhat unknown territory. I don't think there's really any cure though is there apart from taking my POTS meds? Just seems more symptoms to be aware of. Anyone seeing an EDS specialist in Melbourne Australia?

It seems my son doesn't have it have tried to bend his fingers back and he screams. By his age thats how I used to win fights with my sisters and anyone else who tried

I must admit I do better showering in the evening than the morning. If I shower in the morning and go to work my co workers look very worried at me as all the colour has gone. As others have said tho this is hard to keep up. I normally fall asleep after dinner all that lovely blood pooling.

Hi Hollie, just wondering what your Dr suggested for the irritability? I am having severe issues with it atm my poor husband has to put up with me.

I'm very interested in blood pooling atm.

Flop I have the same dx as you. Hypermobile Eds with POTS to boot. I get extreme amounts of pooling to the point where my legs ache badly. I get my husband to rub my legs at night and after that the muscles seem to relax abit so I might be able to go to sleep.

Anyone else experience this? Just wondering.

Julia

actually, I was told my POTS would get WORSE at menopause.

NOOOOOOOOOOOO say it isn't so!

I'm sorry whoever that pharmacist is who told you you could just 'stop' Florinef should be shot. As many previous posts have stated it is a steroid. You have to wean yourself off the drug.

I have only once forgotten to take my florinef because I was working night shift so got home in the morning and went straight to bed and when I woke up about 2pm wow symptoms off the chart I thought I was going to die. Then realised DUH didn't take my meds! I would even suggest if weaning off it going under the directions of your Dr. They maybe able to help you counter the side effects along the way.

It was on A current affair on monday night...This article from the website

Greg Page Fund for Orthostatic Intolerance

Former Yellow Wiggle Greg Page was diagnosed in 2007 with Orthostatic Intolerance. Greg has helped establish with seed funding an important research project that you can also contribute to. The Greg Page Fund for Orthostatic Intolerance raises money to support Baker IDI research into this debilitating condition. 100% of funds raised go direct to the research ? donate now.

OI (Orthostatic Intolerance)

When you stand blood tends to 'run to your boots', collecting in the veins of your legs and abdomen, momentarily reducing the return of blood to the heart where it is needed for the pumping action which maintains blood pressure and blood flow to the organs of the body at normal levels. The body has reflexes, involving an autonomic stimulant system called the sympathetic nervous system, which in healthy people almost immediately adjust to these changes with standing, making the veins less stretchy and causing the heart to pump at a faster rate, so that blood pressure falls very little and blood flow to the brain is well maintained.

In some people these automatic responses fail, such as to cause one of several disabling disorders of control of the circulation, because the heart and blood pressure controlling reflexes do not come into play as they should. 'OI', short for Orthostatic Intolerance (the term literally means 'intolerance of standing') is a prime example of these disorders, the one which struck down Greg Page, the former Yellow Wiggle. Symptoms brought on by standing include dizziness, sometimes leading to fainting, a racing heart beat, weakness, chest pain and incapacity to think clearly ('brain fog' as described by some OI sufferers).

There are several other conditions which are similar to OI, almost identical in their disabling symptoms, but apparently different in their basic cause. One closely related to OI is POTS (Postural Tachycardia Syndrome), special features of which are that the heart really races on standing (as high as 160 beats per minute) and that fainting sometimes occurs even without a fall in blood pressure.

OI and these related disorders do involve a failure in one form or another of the sympathetic nervous system circulation reflexes. Baker IDI is trying to uncover the causes of OI and these related conditions, to provide a clear path to diagnosis of each, and a logical basis for treatment. Our molecular research on the sympathetic nerves is providing some exciting leads. At present treatment is sometimes but not always helpful, as it is often not firmly based on an accurate diagnosis, or on a sufficiently precise understanding of the primary, initiating cause. Through our research we will endeavour to overcome these deficiencies.

You can donate through the Baker Institute. Would be really good if something exciting comes from the research. I'm being treated by a different hospital but I might give them a call and offer to be a lab rat

Yes the first one is the test I took. The only reason why I can't put my hands flat on the floor is because my knees bend back so far lol its really disgusting. And my elbows are only a little bit, rest of it definately. I am sure a POTS Dr would be able to test you to see if you have EDs.

That's probably why its a total score out of 9. Skin being one of the many things being stretchy. You have to reach at least 4 to have a probable diagnosis. I reached 6.

Heres a picture on this web page that shows stretchy skin

Sorry link didn't work here is the address.

http://www.mayoclinic.com/health/ehlers-da...ECTION=symptoms

My POTS specialist only did the flexibility test but we are looking into the genetics now. I also have the stretchy skin, bad teeth etc. Not alot extra can be done but it certainly explains a few things.

Julia

Hi all

In May this year I posted about my legs getting worse with achy pain. I just wanted to thank those who told me to get EDS checked out. I've been classified as hypermobility type. I scored 6/9 on the flexible scale. My specialist had thought I was making progress and was going to take me off my medications and instead now he's doubled it. Last night was the first night in months that I slept with no pain and right through the night. My specialist was curious as how I knew where I had found my information and I mentioned this forum is a plethora of information and great support. I have sent him the link to here so perhaps he will be doing some of his own research here as he is doing a study on EDS and collagen.

Can't wait to see my managers face when she gets a letter saying I must work with my legs elevated

Thanks again for your support.

Julia

Hello,

Also from Melbourne Australia here. Took me along time to find anyone who could diagnose me properly. I see a Dr Chris O'Callaghan at the Austin hospital. I am on midodrine you can get it easily enough its just a phone call by the dr to authorise it and a couple of forms signed. I have heard tho that only the Austin dispensary supplies it cheaper than anywhere else. To contact where they are ring the Austin and ask for the clinical pharmacology unit. The swelling in your ankles is there to stay for as long as you have POTS. Its the pooling in your legs I get it so my whole bottom calves are swollen. You are lucky you found someone who would follow up your research I live at Mornington and its a LONG way to the Austin but its worth it for proper treatment. Good for you that you got diagnosed so early.