erikainorlando

Futurehope!!

8-lb weights!!! Wow...I am so impressed!! i use 1 and 1/2 lb wieghts..... everyone laughs at me but it is the best I can do... BUT I remember when I couldn't even walk to the bathroom so I'll take it and I am sure you didn't start at that either!!

Thanks everyone!!

Wow..yes! I am a little short fused nomrally but since I hae gotten ill it is worse. Especially when I have to upright. It is like I am always running oout of time...because my time upright and functional is so limited. My energy is limited too. I have a ton of time for all the niceties anyone...I want to get off the phone, out of the store, ...lay down... I said a special prayer today for more patience and peace...

Thank you for your posting!! I was trying to do some paperwork here and have been trying to hold back the tears myself. I thought I would be better by Thanksgiving..then Christmas...then by spring break and certainly by summer...I went out today and got sooo dizzy...confused...sick.....(it was very hot)....this is hard sometimes. You are not alone.

I am all for trying to find docs with some answers....I know we (I) get scared that they won't be able to help me or belive how awful I feel but I knnow we have to try....

You are in my prayers.

Erika

Yes..and thanks again. It is so funny...only you all will understand. Why I talk of overdoing it I simply mean walking or kicking lightly in the pool for more than 15-20 minutes at a time. I get upset because I don't even really know when I can do this....sometimes I just can't!! As futurehope said...I can't get my legs to work...get very dizzy...body won't work!! I get so upset when this happens!!! It scares me as well...so I wonder what have I done to myself? (why does this happen??? what is the reason my body starts dysfunctioning??)

PS.

My mother (God love her!!) wanted to buy me a little trampoline to exercise on!! Just the thought of it or anything aeorbic like that sends me to the ER in my mind!!!

Thanks all!

I know that I feel better when I do nothing...but that is probably only in the short run...so I get afraid to push myself I hate how bad I feel and I get scared of the backlash...

Most of my family says...don't do that or don't do this because they know how sick I get from activity. But I don't think doing nothing is the answer....I just want to make sure I can't make it worse....

You just hang in there! I have certainly felt that way with this. Feeling horrible with no real medical help can really drain us emotionally.

This will pass. Yoiu will feel different....at least emotionally. Be gentle with yourself. Keep posting and keep talking. This is a very hard walk and we need all the support we can get.

Erika

I got my disabiltiy...but I don't want to be disabled!! Soooo as most of you I am still trying to walk a little and swim. Sometimes I get very ill from this...it is such a touch and go with how much to do.

BUT for example tonight I was walking wiht my daughter. I wasn't feeling well but I was pushing myself a little. We looked at my feet and they were purple/red and swollen. Sometimes I shake when I do too much....but am I hurting my body by trying....or when I do too much?

Somedays I can walk around the block the long way but last week I got very dizzy...I got afraid. I don't know if I am making myself sicker... and I thougth exercise was a good thing to try to get the blood back to the heart by strengthening the extremities...............

Any insight is so appreciated!!

Thanks..Erika

Just my 2 cents .... I have such pain and tightness in my chest (not always but often enough especially if I have been up too long). Like Shoe it is in the center of my chest about 2 inches from my collar bone and frequently goes up my neck.

My throat seems to swell...I get hoarse.. I was tested for GERD etc.....nothing!! It goes away after I lay down for a while. I would give anything to know why I get this pain....you know physiologically what happens...is is the lack of blood?

Before my POTS diagnosis I was at the ER (one of the times!) and I kept insisting they xray my chest and neck....finally I was in so much pain they gave me pain meds....

Good luck...Erika

I saw an EP who told me that POTS and CFS were related. He said see you are fatigued. right? But I have to say, I am not fatigued like I need to sleep. I am fatigued like I can't move and my body has to sit/recline and rest. This has always been confusing for me. I am weak and physically tire so easily but nothing to do with sleep.

Does this make sense?

Thanks,

Erika

I just want to add that yes....that was one of my first symptoms and continues to be problamtic....

I know in the beginning it was because my hr was so high but on the beta blockers I frequently have the same thing. My boyfriend says I huff and Puff!! I am 46...but I am not overwieght and could always do everything and anything!! I am huffing and puffing as I writte this!!

I feel soooooo bad frequently I wonder how it is possible that something so nebulous like POTS can make someone feel so bad but obviously it does...good luck!

Erika

The one on emedicine. And yes, any research is good. Great, in fact. Anyone trying to figure this out is alright in my book!

Wow and hmmm. I have never fainted it seems to just be my hr that goes up when I stand. Did someone previously suspect you had POTS? Does you hr jump when you stand (even at home...poor mans ttt)?

I of course am asking in hopes that if there is something unikque causing your POTS symptoms and can be fixed we (I) would love to know what it is and get it fixed!!!!

Erika

Thank you so much! I learn so much from you and am grateful for all the information. It is really nice to understand why activity is so difficult for me. It is also validating as I get frustrated with my body not being able to do things...or rather I can do things for a short time but then I get sooooooooooo sick.. I think he said after exercise malaise (which for me is the understatement of the century!).

Anyway...thanks again and please keep all the info coming!!

Erika

Great!!! I was approved myslef on Thursday!!!

Although...I have to say...I am so depressed as I reallly don't want to be diabled. I didn't think I would react this way but I am so down...as the reality hits me I am disabled..at least for a whiel...

Anyway..it is good news...at least financially.

Eria

I know what you are saying even tho I am no longer that young (I am 46). But...I in addition to haing to sit, need to put my feet up so if I am with friends or at a meeting that is relievely informal I pull up another chair and put my feet up. I know most think I am a slouch but I feel so sick I am just not caring lately as otherwise I can't attend!!

For some reason, putting my feet up on another chair helps alot!! My feeling well and your feeling well (and not fainting) is worth a lot more than what others think...but I still forget!! I think most of us go thru this...

I sometimes get bradycardia laying down. I an on beta blockers and sometimes they get my hr low...so standing it is normal but then lying down it plummets to like 50...sometimes lower. I never know how to balance it out...I have to take beta blockers for my tachycardia but then sometimes laying down my hr gets too low.

Just my experience...good luck.

Erika

I could not take florinef. I had terrible headaches on it. I think that is one of the possible side effects.

Good luck.

Erika

I have Cigna but I think it is a specific policy thing because I work for a large corporation.

I was out on disability on and off a few years there because I had a severe bout with Guillain Barre. I have pretty significant nerve damage in my legs and severe fatigue. I was never expected to work again but I wanted to try to go back to my career.

That being said, I learned to compensate and go on. Then this POTS thing kicked my butt!! I couldn't work for more than 3 days in a row or I would land in the hospital. I would shake and not be able to walk more than 15 ft. from sheer physical exhaustoin. I am so weak and sick.

I think due to my previoius condition and a great EP combination my case got approved. My neurologist loves me and knows I would work if I could..he has known me now for years.

I have a great EP (electrophysiologist). He knows a lot about POTS. He spoke with the doctor at my insurance company. So did my neurologist. They both really went to bat for me.

It was so frustrating as you all well know as they say "well...when you are sitting your hr is normal so why cna't you sit and work"... my EP I think explained that it is a syndrome.....not just the hr. Thank God for him...Many EP's don't seem to know as much as him regarding POTS.

I think we just have to be persistant. When you cna't work, you can't work and you know it and I think you just have to find the right doctors who are supportive and really care about you.

Anyway...sorry this got so lengthy...

Just wanted to give you alll an update. I was finally approved for long-term disability from my long-term disability insurance!! Wow. It took both my neurologist and EP calling the insurance comany!! You know I would really do anything to feel well enough to work!! I guess in all fairness most insureance companies and many ohters have never heard of POTS.

Anyway...at least that hurdle is over..thank God! Now...I would love to be able to really feel better. But for today that is a tleast some good news.

Erika

I am sure this topic has been posted a million times but I have long term disabiltiy insurance and am really struggling to get it aproved!!

My EP hgas provided my TTT and notes and holter montior and event monitor but as my hr is normal when I go in the office on my toprol (sitting). They are saying why can't I do a senditary job (I am a computer programmer). I can't do a sedintary job as I can't be even sitting for any length of time (have to lay down)....this is true even on toprol.

Anyone have similair experience trying to get disabiltiy? Any advice?

Thanks!!!

Erika

I have never fainted!!! I thank God for that every day!!!

But my first EP stood there and we watched my hr go from 80 to 150+ immmediately and sustained for I am not sure how long....but he didnt' even make me stand there the whole time. He jjust said POTS. I am so grateful for him. Young guy....he said he wanted to email all my previous docs and tell them of POTS as he was so upset it took soo long to get me diagnosed. However from what I read here I am onne of the lucky ones as it only took 6 months to get diagnosed....but they were 6 horrible months!!

Good luck....Erika

Thanks guys! I know you understand. I am not at all sure the rest of the world understands but I know you all do.

I tried to explain to my kids and boyfriend, who are all supportive, that it isn't that I am tired...or just a little weak. It is that if I don't lay down I feel like I won't make it!! There is no choice....it is not that I just want to take it easy...I have to lay down or fall down. Anyway it is a comfort to know I am not alone.

Erika

Hi.

Just wanted to post my frustration. My kids are out and I thought if I rested this morning my boyfriend and I might be able to go see a movie. I hardly ever do much as I usually don't feel well. But I thought I would try tonight. I slept in have not done too much and took a shower. I was drying my hair and then ..............too sick.....have to sit, sweating, weak. Have to rest and there is absolutaely nothing else that will help me really other than lying flat.

I know people in my life get frustrated with me and I probably get more frustrated than all of them but I really have absolutaley no other recourse than to lay down. My daughter is antsy and wants me to take her to her friends house... sure wish there was a pill I could take and get better faster!!

Erika

Hi.

I also live in central florida so feel free to PM me. I see a cardiologist in Davenport. He is wonderful so you may want to see him for follow-up.

I haven't seen either docotr at Mayo but I had a friend who saw Dr. Cheshire and was not all that impressed.

Good luck.

Thanks,

Erika

Thank you....I agree and am feeling a little better ( on my spot on the couch!!) I am freezing my kids out tho. I have the ac on very high. Tomorrow is my birthday. I just want to feel better. I was so excited about the Cymbalta...I guess I just jumped too fast. I got real scared. I don't like anytthing that makes me feel worse than I already do.............