Bedridden / Housebound ? When, Why, How?

[Altruism]

I've been bedridden on most days and housebound ever since I gave birth 2.5 months ago. I was curious how many of you have ever been in such a bad shape, how much time did it take to recover and what is the root cause of your POTS?

I really need some hope and/or to chance my expectations (depending on your answers). I have to get better and take care of my newborn.

Has any of you been bedridden before but not anymore?

Has any of you been housebound before but not anymore?

Has any of you recovered? Are you having relapses? How often?

Thank you!

[k&ajsmom]

ugh I really hate those results. =( I know however alot of us that have gotten better are out gratefully living their lives again but sad face still.

I got really sick in June/July, hospitalized in Oct 12, and by then I was bedridden and still pretty much am. I have had maybe a total of ten days since october that I left the house and most of the days home Ive been mostly bedridden. SOmedays I can shower and cook dinner OR clean the house but for the most part, I feel pretty stuck because of cardiac symptoms.

Im not sure cause of mine since its been progressing since I was a toddler but I have some suspicions with mcas,or some kind endocrine disorder?? its really hard to geuss, waiting on my appointment in June 13...cant wait but it feels like forever. =(

Sorry you have been struggling since the birth of your baby. I cant imagine. I have two kids and was symptomatic during the beginning of my pregnancies and had preterm births but after was fine. Congrats though on your little one, and hang in there. =) I pray medical advancements will happen sooner rather than later. and "fix" all of us... Take care -Sarah

[looneymom]

The worst part of POTS seems to be the beginning stages after being diagnoised because you really don't understand how its effecting your body. Start working with a physical therapist or do some exercises in bed, on the floor, or sitting in chair like leg raises, bridges, arm curls. Start out with a set of 5 or 10 max. Don't expect to see reults over night. Getting your body use to any exercise will be a challenge but you need to start getting your blood flowing through your body. My son was bedridden for almost 5 months and exercise was very hard for him. I have a blog survivingpots.com that tells about his journey with POTS. It will get better and take care of yourself and newborn. Hugs

[MomtoGiuliana]

I remember feeling exactly the same way. It is very likely to get better for you! How much are you sleeping? For me, I feel worse when I don't get good sleep which is typically impossible with a newborn. I know that was a factor for me post partum.

[Tuesday]

I'm not quite sure how to answer your poll, but I do have flares where I am pretty much housebound for sometimes days, sometimes a week or two (or three) at a time. It comes on suddenly, with no apparent triggers, and leaves just as quickly. I just spent the last two weeks dealing with that, only to wake up two days ago feeling back to normal.

It's different for each of us, and it seems almost impossible to predict any sort of "standard progression," which can be incredibly frustrating.

I can say that it seems like we all go through periods of not being able to function, though. So you're not alone in that.

[Altruism]

Interesting and pretty sad statistics 42% are still bedridden and nearly half of the people who voted do not know their cause. I wish I had more poll options to add a question about the correlation between the recovery time and the actual POTS trigger.

In other words - what was the root cause of your POTS if you are STILL bedridden? And how long have you been bedridden so far? (If it's been just 1 year for example, you can still fall into the second category and recover next year )

I hope it makes sense. My brain fog is terrible today.

[MomtoGiuliana]

Keep in mind this poll is not representative of the whole POTS population out there. DINET users tend to be here b/c they are not well.

[Altruism]

On the bright side, 60% recovered/got better in less than 2 years! Keep voting, guys!

[k&ajsmom]

I like those results better too..lol I have to agree with the others comments and keep faith. When you look at how many members are on this forum and how many are active, you have to assume there are many many people recovered we dont hear about. I hope we are all part of "that" crowd one day. Not that I wouldn't miss u guys lol And like looney said, I feel my worst enemy has been letting myself stay sedintary after the hospital stay just not knowing what to do with myself.

[spinner]

My flares are predictable from triggers---dehydration, heat, exerton. They usually last from one day to 3 days.

I guess most of us learn as we go and desperately try to avoid the triggers, and either get better, or

manage things better.

I have the feeling there are also deficiencies within all of us that are unique, if we can learn them we can

drastically improve things.

[Jacquie802]

I got POTS post viral. My dr told me it comes in waves-I'd do well for a while then have flare ups. My flare ups tend to last up to a year. In May 2012 I had a flare up and I'm still not doing all that well. I'm starting Zoloft again, which I believe helped before so I'm hoping it helps again..this illness is very unpredictable :0(

[Jacquie802]

On a different note, I had one dr who said many people with POTS feel better during pregnancy due to increased blood volume. I'm assuming after pregnancy you feel worse bc of the decrease in blood volume and your body trying to readjust..?

[Gerrik1]

I've just spent the last 3 days in bed, I marked month but it never has been that long usually a week or 2 at the most and it just hit me out of the blue. So dizzy I can not sit-up, get-up or even roll over. MD has me increasing my antivert and seeing her on Thursday, unless I get worse then I'm to call her back ASAP.

[lissy]

I suspect having mild POTS since I can remember, which got worse after every pregnancy especially after the last that was in 2008 I was bedridden 3 months after delivery and I barely took care of my children but did the best I could, moved a mattress to my childrens room floor I couldn't move very far...It was a serious battle for a year to do minimum things. My situation didn't allow me to not get up no matter how bad I felt When a bottle was needed I had to crawl hold on to walls whatever it took. Mental strength is the most important!!! Even when brain fog takes over and you feel your mind and body is no longer 1 you must make yourself believe you can do it! Keep fighting and resting trying to balance the two. I am not 100% yet I still have days that feel like day one ( June 21 2008) but I have plenty more days showing how far I've come. I wasn't able to leave the house, drive, walk in stores (I held my babies on motorized scooters), I had to leave events, restaurants, get indoors just because I felt like death. I can now drive 40 mins, walk for hours with breaks, go to family outings and get my kids ready for school and take them 85% of the time it took years and the most important thing Ive learnt is staying mentally strong is the only thing that has gotten me where I am- Ive taken 0 meds I wouldn't recommend that, but that was another issue for me , I might be better than I am now if I had tried meds... So thats my story we all have one;) but they are probably all different with different outcomes

[Altruism]

Lissy, your response made my day!!! So it is possible! Even the worst pregnancy POTS can be reversed! Can' wait!!!

[lissy]

Altruism

Anythings possible just prepare yourself this is me speaking after I consider a hard almost 5 year battle...Make sure to minimize your stress and take care of You, and move around like another poster suggested its important. You will learn a New You and its not easy I basically lived on this site for along while ( health issues consumed my life) and that was a bad idea not saying this site is bad Lol I just was on a Mad search all the time.... so just balance everything we're all here for you:)

[Altruism]

Thanks, lissy, sending you a big hug for your support!

Based on the results, I might have to create a second poll for those who are still bedridden to see what their POTS cause might be and how long has this been going on.

[Batik]

Could you edit this poll to add an "I've never been bedridden option to the second and third questions, please? It won't let me answer unless I answer all three questions.

[Freaked]

Was bedridden for two months when I first got sick (kept expecting to get better), then when it became clear I had something more than a post-viral fatigue problem, I started moving around the house more, and even managed to go to a friend's for an evening. Then a stress programme (my mystery illness gave me terrible anxiety) forced me to actually get out of the house and sit up straight in a chair every day, but made my symps a lot worse. So, most days I can get out of bed, but it does still make me feel like crap four months in. However the only treatment I'm doing atm is high fluid and adequate salt intake; not very tolerant to beta-blockers and afraid to start exercises without a doc's guidance, which I'm pretty sure will be necessary if I'm going to recover. Atm, it's either house, medical place or boyfriend's house for me.

[kayjay]

I got better after pregnancy- The birth of my first child was definitely a trigger. I have been essentially bedridden (I crawled to the bathroom). I was most recently bedridden a few years ago after a viral illness. It's not uncommon for me to be semi-housebound although it is much more rare that it used to be.

I don't recover well from viruses if I have a fever. My normal body temp is high anyway. I was told to avoid fevers which is pretty hard. My children are expert hand washers and stay pretty healthy but I have nieces and nephews. It seems that in the winter I can't avoid contact with sick children although I do try to limit it. I get really stressed out about it because I have relatives that will send their children to my house and I find out that someone had a fever the night before or was throwing up.

Recovering from a severe illness (pregnancy too) takes a long time. Improvement was very slow but it did happen. Please be encouraged. For a long time I couldn't even ride in a car without a bucket. Eventually I was able to drive my children to the bus stop. Then I was able to drive them to school. Tomorrow I am making a 2+ hour drive. (I will have to stop half-way but that's not too bad).

I used to sleep for 10-12 hours at night with at least 2 naps during the day. I woke up just to say good bye to my children and basically slept all day when they were in school.

I have to lay down and I sit a LOT, but I usually can get through the day without naps.

I rarely have migraines anymore. I rarely have vertigo. I almost never vomit at this point. I'm still exhausted but I don't sleep all day. I went to church this morning. I don't stand and sing and I do put my feet up. A few years ago I really couldn't go. If I did I was very sick when I was there and in bed the rest of the day.

[blueskies]

I've never been really bedridden for more than a day or so at a time. I am couch ridden a lot though. I spend a lot of time sitting up on couch with feet elevated but mostly I can get my own drinks etc. We moved 9 months ago to temporary accommodation and during the day I have to go upstairs to pee -- a lot -- as the toilet is upstairs. I am managing stairs so much better now because I've had to. What with having to go up there to use the toilet, shower, do the laundry, tidy up, get dressed and go up and down tidying etc. I think I'm going up that flight of stairs nearly 30 times a day. There are 16 steps in a flight. It's made a difference to the muscles in my legs -- much more pronounced. So, for me, very short sharp burst of exercise interspersed with resting seems to be good for me.

Although I will be glad when we move out because I have been knocking on wood about those stairs. I don't like that I could possibly become suddenly unable to tolerate them. The lease here ends in 9 weeks so any time spent living here after that I will feel more relaxed about this as we only have to then give 3 weeks notice to leave. Until our lease is up I'd have to pay the remaining time on the lease -- that would be a lot of money. BTW, when we moved here I stored our dining room table and chairs because I haven't used them for years. I can't sit up straight with feet down and eat.

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