mattsmum

No no veins. I thought potsy people would be beyond looking for things like that. Its more likely poor circulation from the blood pooling in my legs. I have a little foot heater that I can burn my legs on and not feel pain. Looks like i'd best be booking in to see the specialist. Thanks anyways.

Hello, For those that don't know me I live in Melbourne, Australia. Just this last week we have had a real freezing cold change in weather ( I don't know if that has anything to do with it but mentioning it. ) Anyway after about 4pm my legs start to give me **** and last night even after taking a sleeping tablet I still couldn't sleep as I was in too much pain. It really feels like someone bruised my legs using a baseball bat. I had a really hot bath about 7pm last night (under supervision from my DH) and it gave me relief for awhile but by 10pm I was in agony again. I am on florinef and midodrine and admitedly about a month ago I started taking a midodrine before bed and it would stop the aching enough to sleep. Is it possible that my body has got used to the midodrine do I have to up the dosage? I'm on 5mg doses. That or any other ideas or things you know that I could try please feel free I am desperate but my specialist is a 2 hr drive each way and I don't have enough time off for at least 2 weeks to even think about making that trip. Many thanks. Julia

Maybe that is why it says to take with food?

Since I have been on a high protein diet I find this very filling. I stick to 3 main meals a day and 2 snacks and I am also on about 1500 calories. Also stick in a tiny bit of dairy. IE one of my snacks is a yoghurt. Typical day i do breakfast with cereal and milk, lunch is a sandwich with meat and salad in it. Dinner is meat with vegies or salad. Snacks are yoghurt/or lite crackers with lite cheese or a weight watchers muffin to get my little fix. Since I've done this I've had less belly aches and the desire for bad foods is minimal.

I was at work yesterday and the boss caught me with me sitting on my leg lol. I tried to explain to her its kind of an automatic reaction thing I do without realising it. All she could tell me was I will increase my chance of blood clots this way. Does that apply to us do you think? Do you think midodrine helps at all with that situation? I love to cross my legs or sit on my legs I can't help it , it brings such relief. How about you?

Well I have searched the www and have not found even a torrent of this episode. Anyone able to send a copy out to Australia by any chance? Would be happy to pay for postage. Can pm me please

Another one here tipping that a big lunch just makes you want to go for a nap. Also at lunchtime theres a couch in our tea room and I go spend half an hour with my feet elevated and I don't know why but it makes a HUGE difference specially if I have to work til 6pm.

I've been doing curves since November and its making a huge difference. There are alot of sit down machines and the fact that you are only on one thing for 90secs then onto the next thing. I am abit exercise intollerant takes a couple of hours after to recharge so i just try to go on my days off. As opposed to a more aerobic workout where I and most you prolly wouldn't last 10mins lol.

My florinef tablets were never pink. Always white and always have to be stored in the fridge. When our fridge started to over freeze stuff i told my hubby that we needed a new fridge cos my meds have to be kept at the right temperature <evilgrin> New fridge looks great!

I really do understand where you are coming from. And it is really frustrating because there are things that NEED to be done staring you at the face. An ordinary person would bounce back and do the same again the next day whereas we are somewhat limited and if we do not pay attention our body just shuts up shop. I was doing really well until this month had not one sick day all year but this month extra things have been on and trying to fit everything in has been stressful. I did not listen to my body and so I got sick big time. I've had today off work my voice does not work and I have had a fever and a cough and I have been feeling very weak and tired. I feel for the people who have POTS so bad they are in wheelchairs, however I do know from the OP how frustrating it is. All we want is a normal life and its just out of reach. And it is refreshing to come here where people understand and can sympathise with you and assure you have a valid reason to be feeling the way you do.

There is one supreme ruler and it is fatigue I hate it.

LOL @ the putting the feet up at the rails at the movies! I thought I was the only weird person who did that! Let's see... I always keep a roll of peppermints in my handbag for those times when I start to feel yucky. I find I last longer (i.e without wanting to go lie down) if I take a complex multiple B in the morning.

Its frustrating when Drs are like that. When i start to hear crap like that I mutter under my breath on how they have NO IDEA about this disease. If he is the only dr you are seeing about POTS I suggest trying to find a new one. Drs like that can make you depressed! Just because they have a Dr title does not mean they know everything. Because you are young they can easily intimidate you. The only person who is going to look after you is you so stick to your guns. Another appointment with him and if he questions you need to say after 7 years of dx of POTS and I am chronically tired all the time and you have the gaul to think I am depressed. Well you try dealing with fatigue for 7 years and see how you turn out!!! Just remember you are not alone and stand up for what you believe in.

Thank you everyone for your heart felt support. It means alot to me that someone out there understands.

Hi, After reading even a few posts on here I think my problems are probably very small compared to what most of you face on a day to day basis. However I decided to post anyway thinking maybe if I could just vent maybe I could deal with things better. I have come a long way since my dx and on my medication I am somewhat surviving but that somewhat doesn't seem to be good enough. My husband hasn't been intimate with me in months, when confronted he tells me nothing is wrong but still I got a bad gut feeling that is not the truth. I am putting on weight with the florinef but now I go to the gym 3x a week for 30min session. My first weigh in after a month I put ON weight and have toned up a little. I work a swing shift which I had managed to negotiate a 4 day week shift however we are experiencing a staff shortage at the moment where people are doing ridiculous hours. People look at me like i am not sick so couldn't I help out abit more? I felt really guilty this week when I found out someone worked 9 days in a row. So I put my hand up for just one extra day but they don't realise that that is huge coming from me. My MIL helps look after my son after school hours if I have to work and my father in law was a real PITA today when I was trying to negotiate a play date for my son to play with a kid up the road after school. I totally messed up today putting up my hand for the extra shift because my sons xmas present was being delivered that day and I tried to call them all day today to arrange another day and no one answered the phone. My parents are moving house soon and are paying a fortune for the movers. I felt horrible last weekend my neighbours had a big moving truck outside their front lawn. I asked them if they were moving they said no they were helping their parents move. I felt so guilty I know how much I would love to help my parents move. I am angry all the time I feel like I can't get ahead there's always something more I haven't done.I have noticed that my screaming when I get home is so bad that my son has adapted to it and is doing his own which makes me feel incredibly guilty. I get home from work and look at all I need to attend to and I am just too tired. Fatigue will always win in the end and no one understands. Makes me feel like just finding a nice quiet place to hide to cry. Wish the world would cut me a break sometimes. Anyways I know this is really petty but thanks for the vent.

We are just coming out of winter here and I just want to say when I take my midorine I actually feel the circulation coming back into my hands and feet. It was like ohhh a revelation like this is what NORMAL people feel like. As soon as it wears off I feel really cold. Cannot live without my electric blanket and wheat packs. I have burnt my leg on the heater and not felt it. At work if I cannot keep warm I make hot chocolate which helps abit. Sorry not much help but I do sympathise!

Has anyone had answers on how to combat the weight gain with Florinef? I have gained 10kgs and I am now exercising 3x a week and eating better and the weight is not budging in fact last month i still managed to put on 1.4kgs. Its disgusting and depressing I would like to take a diretic but I hear they make the tachycardia worse so thats not a good solution theres gotta be something we can take to even it out!

Same I love hot baths and hot showers I think because I can get so cold hands and feet its a lovely way to get warm! Sometimes I truly do regret it afterwards tho.

At the moment my dear son is my alarm clock he annoys me and the dog around 7am then the alarm goes off at 8am to get up. Gotta hate that tachycardia tho specially if someone wakes you up in the middle of the night (DH often goes to bed later than me) takes forever to calm down to get back to sleep!

Hi Ling, truthfully nothing can fill that empty void of wanting another child. To make peace with myself I always tell myself how lucky I was to have one child. There's ALOT of people out there who cannot have any children at all. That and I love my son spoil him to bits show him every day how much I love him and be sooo grateful I have him. Chocolate always helps too. All the best. Julia

Aren't you supposed to be openly honest with therapists? I would be quietly telling her she has nfi what she is talking about and to do a little bit of homework before next appointment and leaving behind some information. I hope you aren't paying for that kind of therapy.

Sorry to hear you are going through this. I had the same problem with my job. If you can provide simple letters from your specialist or doctor they should respect that a professional has provided medical opinion that shouldn't be questioned! Or if things are getting that dicey get your doctor to call your work personally. And just on another note good on you for exercising and going to church I have long stopped those things because POTS was becoming such a problem I stopped enjoying it.

Sex drive? Like Nina, think I left mine behind in my 20's Only thing sex is good for now is a cure for Insomnia.

Nother one here I had my child before I was diagnosed. And no not planning on having any more with POTS playing a factor. I had 3 miscarriages prior to me having my son. Don't do anything stupid like fly in aeroplanes when you are pregnant even if the dr says you are safe to travel. I wonder often now if POTS and air pressure in planes played a part. I really struggled with my son who was a bad sleeper and the whole sleepless thing and fatigue. Us POTS people need our sleep! You want to see how cleaning up toys constantly picking up after kids does your head in literally makes you sooo dizzy. But I wouldn't swap my son for the world he is priceless to me my little miracle. All the best.

Thanks Melissa, that's exactly what I was thinking, an intollarance to the Florinef. I don't know if anyone is on any more than 0.3mg a day so maybe the dosage needs to go up I don't know. The other attribute could be depression that I've felt since I've looked at all the weight I've gained on the drug. Feel very stuck between a rock and a hard place. Much longer and I feel a trip to my specialist is in order. Thankyou so much for replying. Nice to know someone out there is listening. Julia