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.