Jump to content
Search In
  • More options...
Find results that contain...
Find results in...
Gingergal

Bedridden and need exercise help

Recommended Posts

I’ve been bedridden for 2 years now. It started out with having Lyme disease and then I developed POTS without knowing it. I don’t really have a good doctor, and I don’t know what to do r get myself moving again. I suffer from daily dizziness, and can’t walk on my own. I use a wheelchair when I go out, and stay home in bed most of the day. I don’t know how to exercise if I’m so weak. My doctor told me to use a recumbent bike, but I nearly passed out. How do I get myself to a point where I can use a bike, and hopefully walk soon? I’m really scared about my condition just worsening as the days go on. Any advice is appreciated. Thank you. 

Share this post


Link to post
Share on other sites

Instead of sitting or laying in bed for most of the day are you able to sit in an armchair or couch that still gives you a lot of support, but makes you use more muscles than you are now? I know that if I try and sit in a straight backed chair I'll soon feel like I'm melting toward the ground but in a very cushiony supportive arm chair I last much longer. How about standing next to your bed ( or chair) once every half hour just for a minute and sitting back down? When you're laying in bed do you have the strength to lift your leg and point and flex your foot a bunch of times? This is what I do. It's not much but it's working your foot and calf muscle a little bit, and that's a good thing. 

Share this post


Link to post
Share on other sites

I am sorry that you are still that sick. Please know that inactivity is the WORST thing for POTS. The longer you are in bed the worse the POTS will get. Start to exercise your legs in bed, lift your head and legs a few times, squeeze your buttocks, lift water bottles up and down a few times. And try sitting up slowly in bed every 30 minute or so and increase the time you sit up. Go very slowly though - don't do it too much in the beginning. The more you do this the more the body can start getting used to being upright. Down the road you can try other exercises. Can you get PT at home? I had PT in my home last year and they showed me many exercises that I can do whether I am bedridden or can stand. --- I have a neighbor who got POTS from Lyme disease. She was disabled for a year but now is completely well. If you have been this sick for 2 years you really should see an autonomic specialist or even a cardiologist k knowledgeable in dysautonomia. I wish you the best of luck - keep moving!!

Share this post


Link to post
Share on other sites

Thanks everyone. I know the longer I’m in bed the worse it gets. I just don’t know what to do. I’ve seen a few cardiologists, but they’ve never actually helped me, just said “yup you have POTS”. I’ll look into getting a PT at home. I didn’t know there were people that did that. I do my best to flex my legs in bed. I get scared when I stand, because I used to faint easily. I know I need to get past that fear. I’m gonna do my best. Thank y’all. 

Share this post


Link to post
Share on other sites
35 minutes ago, Gingergal said:

Thanks everyone. I know the longer I’m in bed the worse it gets. I just don’t know what to do. I’ve seen a few cardiologists, but they’ve never actually helped me, just said “yup you have POTS”. I’ll look into getting a PT at home. I didn’t know there were people that did that. I do my best to flex my legs in bed. I get scared when I stand, because I used to faint easily. I know I need to get past that fear. I’m gonna do my best. Thank y’all. 

Call your local PT centers, many do have therapists that visit homes or hospitals and your insurance can cover a lot of that expense but you will generally first need a prescription for physical therapy from one of your doctors. Call your cardiologist or even your primary and set up an appointment to talk about you getting assessed for the need for a PT script because you are very weak and need help.
https://www.webmd.com/pain-management/what-is-physical-therapy#1

 

 

Share this post


Link to post
Share on other sites

Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed.  That is part of the reason they get people walking right after surgery.  

My suggestion is to get out of bed every day.  Take a shower and get dressed even if you need assistance.  Lay on the couch instead of bed.  Elevate your head.  A recliner is good.  A doctor at the Mayo told me I had to "retrain" my body to be upright.  Anything up right is good.  When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very slowly.  You could try one minute, a number of times a day.   I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights.  Stand up right for as long as you can stand it and then add a minute each day.  Or 30 seconds if that is all you can add.  Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. 

I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where.  She told me that was not a good plan.  She said I had to push my self or I would not get better.   

I went from bed bound to going out, driving, walking, being able to take care of myself.  I had young kids at the time I was bed bound and HAD to help them.  I would crawl if I had to.  I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out.  I really do understand how hard it is to get out of bed when you feel so bad. 

Most important is you need hope.  The body is an amazing thing.  You can train it.  You are a team. Cheer yourself on.  Believe that you can get better.   I have known many people with POTS who are 95%.  Those people aren't on message boards because they are back to living their lives. 

 

 

 

 

 

Share this post


Link to post
Share on other sites
2 hours ago, Jan said:

Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed.  That is part of the reason they get people walking right after surgery.  

My suggestion is to get out of bed every day.  Take a shower and get dressed even if you need assistance.  Lay on the couch instead of bed.  Elevate your head.  A recliner is good.  A doctor at the Mayo told me I had to "retrain" my body to be upright.  Anything up right is good.  When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very slowly.  You could try one minute, a number of times a day.   I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights.  Stand up right for as long as you can stand it and then add a minute each day.  Or 30 seconds if that is all you can add.  Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. 

I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where.  She told me that was not a good plan.  She said I had to push my self or I would not get better.   

I went from bed bound to going out, driving, walking, being able to take care of myself.  I had young kids at the time I was bed bound and HAD to help them.  I would crawl if I had to.  I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out.  I really do understand how hard it is to get out of bed when you feel so bad. 

Most important is you need hope.  The body is an amazing thing.  You can train it.  You are a team. Cheer yourself on.  Believe that you can get better.   I have known many people with POTS who are 95%.  Those people aren't on message boards because they are back to living their lives. 

 

 

 

 

 

What about those without POTS?  What do you suggest?  Because at times, crazy as it sounds, I wish I did have it.  If only because there’s more out there in terms of mitigating the symptoms, strategies, or even medicine, frankly.  

Share this post


Link to post
Share on other sites

@zerohours000 - if you have symptoms of dysautonomia but you consistently test negative for all dysautonomia ( I am assuming you have according to your posts ) then it might be better to take a different approach. Maybe the symptoms you display have a different origin? Have you tried any of the medications commonly prescribed for your symptoms? Have you looked into vitamin deficiencies? Are you leading a healthy life style ( exercising, eating healthy - I know you used to be a vegetarian - do you have a healthy support system of people that encourage you and help you? I know that for me being able to exercise daily, even in ever so small amounts, helped my sleep hygiene greatly. 

Share this post


Link to post
Share on other sites
3 hours ago, Pistol said:

@zerohours000 - if you have symptoms of dysautonomia but you consistently test negative for all dysautonomia ( I am assuming you have according to your posts ) then it might be better to take a different approach. Maybe the symptoms you display have a different origin? Have you tried any of the medications commonly prescribed for your symptoms? Have you looked into vitamin deficiencies? Are you leading a healthy life style ( exercising, eating healthy - I know you used to be a vegetarian - do you have a healthy support system of people that encourage you and help you? I know that for me being able to exercise daily, even in ever so small amounts, helped my sleep hygiene greatly. 

Well, by negative, they only ran the one test --- the TTT.  But there are other tests they could've ran, I suppose.  I am already Vit D deficient.  I was taking he 50000 units of it once a week for three months.  But I think I'm now out of those.  As far as b12, I was vegetarian for about 2 years.  And, I'm not sure if you have this, but my nails present as someone with severe vitamin deficiencies: they're red at the top, I've lost those "half moons" near the cuticles, and, yeah, they're awful looking.  I mean, I could of course just have something --- like dysautonomia or something else --- that is causing the malabsorption.  What else could it be, if not dysautonomia?  Is it because I don't have the heart issues?  Because I literally always measure between 120-130/70-80 BP when standing sitting and between 70-80 HR when standing or sitting.  I had low pressure on perhaps one day at the neurologists but have not had the issue since.  Perhaps that was a flare in of itself?  Again, I don't know.  There was one day where I know I had shaking but had V8 and it went away shortly thereafter.  I could've been dehydrated the whole time as well.  I was already leading a healthy lifestyle (I thought) with vegetarian lifestyle.  I had lost 90 lbs doing so.  I felt very good.  I was getting a lot of exercise beforehand too.  I was a teaching assistant/job coach and was always taking students all around Boston for jobs and interviews.  I must've walked 20 miles a week.  I have not, however, looked into all vitamin deficiencies.  I read here that sometimes anemia can be either causing or mimicking dysautonomia.  http://b12patch.com/blog/dysautonomia-could-it-be-pernicious-anemia/  But I don't hold out a lot of hope that it's "just" b12 deficiency.  If anything, it's more like autoimmune + the deficiency + autonomic disorder.  Why don't you think I have dysautonomia?  What else would my symptoms present as?  

Share this post


Link to post
Share on other sites
10 hours ago, Jan said:

Even if you were perfectly healthy, you would lose the ability to walk, stand and sit up if you stay in bed.  That is part of the reason they get people walking right after surgery.  

My suggestion is to get out of bed every day.  Take a shower and get dressed even if you need assistance.  Lay on the couch instead of bed.  Elevate your head.  A recliner is good.  A doctor at the Mayo told me I had to "retrain" my body to be upright.  Anything up right is good.  When I started on my recumbent bike, I had it on low tension and could only do a couple of minutes at first and increased it very slowly.  You could try one minute, a number of times a day.   I had a PT who designed exercises I could do lying on my back. I had some weights I put on my ankles after I was able to do the exercises with no weights.  Stand up right for as long as you can stand it and then add a minute each day.  Or 30 seconds if that is all you can add.  Stand next to your bed so you can fall over if you have to. Maybe keep a journal so you can see your progress because it is hard to notice. Once you can start to walk, walk a few more steps each day. 

I told the Mayo doctor I could manage my dizziness by only walking short distances at home holding on to furniture and not going any where.  She told me that was not a good plan.  She said I had to push my self or I would not get better.   

I went from bed bound to going out, driving, walking, being able to take care of myself.  I had young kids at the time I was bed bound and HAD to help them.  I would crawl if I had to.  I believe if I hadn't had my kids, I would have crawled into bed, pulled the covers over my head and never gotten out.  I really do understand how hard it is to get out of bed when you feel so bad. 

Most important is you need hope.  The body is an amazing thing.  You can train it.  You are a team. Cheer yourself on.  Believe that you can get better.   I have known many people with POTS who are 95%.  Those people aren't on message boards because they are back to living their lives. 

 

 

 

 

 

Thank you for this.  I've been pushing myself to drive around and do a few little exercises each day.  Walking around.  It is hard but I do believe it is helping.  I'm still making my own food too.  The kids are helping a lot with laundry and dishes though lately.   Well, my daughter pretty much always did the laundry.  I do fold sometimes and I used to bring the load up from downstairs.  I need to get back to the stairs again.  I did a half flight at church on Sunday.  

I like to be reminded about how are bodies are resilient and always trying to heal.    I think it's good to keep that in mind.  I think I used to tell myself that after 35 the body starts to deteriorate.  And that's probably true.  But it is still working on healing.  Otherwise people would last as long as they do.  It's not like you lose resiliency right at 35.....  Or so.  It doesn't just vanish. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...