Give Me An Idea On What You Think Will Happen?

[hippychic258]

I know no one knows for sure what is going to happen but any guesses or experiences will help. By now everyone knows I am bedridden for about 5.5 months I sit up in the bed short periods of time I have never laid flat always propped up when laying down I stand for my husband to carry me to the toilet so up maybe 3 seconds so I have not walked at all. I take showers in a reclining chair, and get sick twice being in a recliner for over 30 min, so my question is: What do you think will happen if I were to stand for 30 sec or longer or try to walk? Will al my blood go to my feet will I pass out ( I never have) will I be really sick? Sometimes after just going to the bathroom I am shaking and vibrating inside.

Thanks

Pam

[Wendy C.]

That definitely sounds like an awful way to have to live and I hope that it is only temporary for you. I have seen all of your other posts and it sounds like it is pretty bad for you. I really hope that you can find some meds or supplements or compression or whatever that will help you to improve and feel better. The only way I found several methods that helped me were to research, visit doctors, experiment with dosages, etc. My thoughts on your question are:

- it will probably be hard because your muscles are likely very weak after 5.5 months of not walking (I haven't seen you mention in any posts that your legs are paralyzed, so I assume they will technically work for you, if I am wrong, forgive me)

- there is really only one way to find out what will happen - try it, with your husband right there to catch you if you do happen to fall

- fear and worry can be great immobilizers and most often what we fear will happen actually doesn't

- walking is unique in that nobody else can do it for you, it is something you have to do yourself

Good luck! You can do it, I know you can!!!! Let us know how it goes.

Wendy

[HopeSprings]

Oh my goodness. Are you under the care of a Doctor? What do they suggest?

[Relax86]

Would be thinking a short stay in-patient rehab would help so you could be safely monitored and gain strength. Good luck.

[hippychic258]

Doctors just tell me to start slow. I am not worried about the strength part of it I am worried about all my pots symptoms coming back that it may be to much stress on the body and I will have a major flare. I know people with pots are bedridden but most have walked some and it was a huge mistake to stop walking i know, I feel stuck.

[yogini]

It is hard to know what portion of your symptoms is caused by being in bed and what part from POTS. Can you stand from 30 secs to 45 secs and keep increasing it that way. Can you crawl to the bathroom? Sit in a recliner for 1 min or 5 min as opposed to 30 mins and increase 1 min each day? Take tiny baby steps. Try not to worry, that will just aggravate your symptoms.I would be surprised if standing for a few extra seconds would cause a full flare. I agree with the other post that workng with a dr and getting on some meds might also give you the boost you need.

[HyperPOTS8]

Did you try the Florinef or beta blocker Dr B advised?

[hippychic258]

No I haven't tried anything, It seems like the drugs help one thing and make another thing worse i am just confused.

[Libby]

You haven't tried meds? Forgive me if I'm missing something but...if you haven't tried it, how do you know it will make one thing better and another worse?

[Kellysavedbygrace]

Pam, I'm so glad you posted this question. Looks like you've been going downhill since Jan. I havent read all of your previous posts so forgive if you have previously answered

- do you have severe sensory issues?

I'm only still on a few meds and really understand not wanting to take meds.

-which ones have you tried? What side effects have you noticed? Any chance you've kept a journal/notes about them?

I find I do worse when reclining for long periods- and upright is very difficult- even in a chair- BUT. Movement is Good! Movement keeps my cerebral blood flow going. The more I move, the better. (of course that is limited and when I'm symptomatic I'm back in bed.)

I ditto Yogini. And I think you will not faint. - but Id suggest pumping your ankles when you stand. stand/pump for 10 seonds. And then back down. Drink lots, eat lots of salt, breathe deep and when you have rested enough get back up and try 12 secs. Then I wouldnt try to stand- id try to walk. One step, then two. POTS is not a sprint, it is a marathon. Please post on your progress.

Oh, by the way- why are you not lying flat?

[HyperPOTS8]

I agree with Libby! It seems you have very little to lose by trying meds. I could tell a significant improvement from Florinef in 24 hrs with no side effects for example.

[Alex's mumma]

One of my daughters most prominent symptoms is syncope, fainting isn't nearly as bad as being bed ridden and having POTS steal your life from you!. On a good day, she faints an average of 5-7 times... On a bad day (which are the days she's literally crawling around because her leg muscles and knees are too weak to held her body up and she's so dizzy she can't safely walk), she has fainted up to 40 times. Full out fainting- complete loss of consciousness! It's not unusual for us to be in a store and she gets that "feeling", knowing she's going to faint and lays down exactly where she's at, no matter what! Kind of funny the appauled looks that I get from people as I stand there looking at something on the shelf completely comfortable with the fact that my 15 year old is unconscious in the middle of the isle!!! Also kind of sad that 19 of every 20 times it happen.... No one says a thing- no one asks if she's ok or if I need help...but that's another deal.

She woke up on April 10 of this year and started fainting.... A myriad of seriously debilitating symptoms to follow and have not let up much. She was diagnosed with POTS only 2 weeks after the onset of this maddness (which is a huge blessing), she was almost completely bed ridden for the first month + and had we not pushed and pushed to stay reasonably strong and conditioned, I am confident that she would be in a position very similar to what your describing about yourself. Even on bad days she feels better when she gets up and around as it gets her blood moving in her body.

So that all being said... Fainting isn't the worst thing in the world and I can't imagine that your starting down the road to stand & walk will set you back as long as you push to your limit not past it! You can do it... It may not be easy... But it'll be worth it!! Cheering for you!!

Also, if your not already doing so, you might want to get a few light tension exercise bands and work your legs and abdominal muscles while you are in bed... That's what she does on her bad days to at least do something. I always figure that anything she does as far as moving, exercising, walking, being mobile in any way she can on any given day is better than doing nothing, which is many days what she FEELS like doing!

[mully2014]

FLorinef is a great med to start out with if you are worried about side effects. My sister is on florinef and she is managed very well! I hope you can start feeling better soon I would give meds a shot though if your doctors are recommending it. You never know what might help you or get you managed its different for each of us.