Do People Recover From Being Bedridden??

[hippychic258]

Do people recover from being bedridden and go on to there normal life?

[icesktr189]

Yup I was for 8 months and after afew meds and getting my muscles back I started working and driving again. Wasnt completely back like a normal person but 80 percent better.

[hippychic258]

That is Awesome!!! That is a long time! Were you completely bedridden I have not walked at all for 4 months. What were your symptoms that kept you down?

What did it feel like to walk after all that time? Did you get sick?

[anaphylaxing]

I did! I'm not back to full normal, but SO much better than I was 6 months ago. Hoping not to go backwards! Keep hope alive, limit stress get lots of rest, drink lots of fluids and stay strong!

The tachycardia and faintness kept me from walking. My heart would race so fast that I felt like I was going to die imminently. I was able to go to the bathroom and for short walks when it wasn't as bad during the day. I forced myself to walk as much as I could physically tolerate even though it felt horrible up and down the halls of the hospital trying to force my body to remember how to do things. Not sure if that helped or not.

[MomtoGiuliana]

I was essentially bedridden for several months in 2002/2003. I am now very much recovered.

[hippychic258]

What were your symptoms and how did you get out of bed? Were you completely bedridden?

[MomtoGiuliana]

I couldn't stand for longer than less than a minute, for months, and to walk from one room to another was so exhausting I needed much time to recover. So I was not totally bedridden, but I was practically so, and I was homebound other than dr's appts. A wheelchair might have been helpful during that time b/c standing really set off a huge host of symptoms.

I slowly improved once I was diagnosed and started a beta blocker and SSRI, and weaned my daughter.

[DoozlyGirl]

hippy,

I also was bedridden for 6 months then housebound for several additional months. By the time I was diagnosed with signficant orthostatic hypotension and autonomic neuropathy, a miniscule amount of a betablocker sent me spiralling even lower and causing a resting HR in the low 40s for about six weeks. I would sleep 18-22 hours a day in the beginning. I have worked my way back to about 40 percent of what I was able to do before. Although I am unable to work, I am able to leave my house several times a week, go shopping and meet up with friends. I still sleep 10-13 hours a night. Healthy foods, walking, and sleep have made a big difference in my life. And now antihistamines, singulair, aspirin and limiting my mast cell triggers have helped me get to the next level.

Good luck in getting to your next level!

Lyn

[ramakentesh]

Some get over POTs completely. All doctors have some patients that do.

For me POTS usually effects me acutely for 3 months in every 3 years, kicks my butt and then takes about 9 months to get over. For me without medication I wonder whether it would ever go away though. It seems that in my case medication allows me to tolerate more, which allows me to get out and about more and recondition what ever goes wrong when POTS kicks in.

I get random relapses every three years and can literally go from standing all day at a concert and then partying at night to being unable to drive or stand over night. Ive worked through most of my POTS fulltime and am back at work currently working 9 hour days - something that in January I assumed would be impossible.

Some improve over time to a comfortable balance.

Doctors and MAYO wrote a study suggesting that patient outlook effected outcome and those that felt helpless or more obsessed with their symptoms had a worse prognosis. Sounds a bit rough to me but if you can try and keep positive and not stress about it you might find this helps.

Many of the suggested mechanisms of POTS would respond poorly to stress so if your stressing about your illness - which of course is natural given how bad you are probably feeling - it could potentially create a vicious cycle.

Knowledge is also power but question everything being suggested as fact about this illness because the underlying mechanisms are poorly characteristed and understood at this stage.

My doctor also suggested keeping in contact with positive fellow patients can help some how too.

[Relax86]

I was not bedridden for as long as most. I think it's because I had no idea what was happening to me and kept on trying to get up. After 4 days in the hospital and ruling out strokes, heart attacks and brain tumors I just figured there was no reason not to get up. I pushed myself to do simple things in short periods such as walking to the kitchen and stand for 5 minutes, be seated at the kitchen table for 30 minutes when the kids came home from school, try and take a shower by 2 pm. I was scared a lot and had to push threw the fear a little. It's so overwhelming not knowing what is happening to your body. I also downloaded a few songs from my childhood that gave me happy memories and would listen in the evening (I usually felt better at night) and imagine getting my old life back. Acknowledge baby steps such as if you do get out of bed and walk 5 feet definitely celebrate it....post it here so everyone can congratulate you. I feel like I credit myself and this forum for my improvements thus far. I have no DR that knows more than the people right here. I believe that you can do it hippychic.

[hippychic258]

Thank You!!!!

[Relax86]

I just re-read my post which said 'i credit myself' ....which sounded awful....what I meant is that I had really very little medical assistance and I was just on an uneducated guess every day and praying for improvements. The hospital made me worse, my family was scared to death and I had no idea where to turn.

[leydengs]

I was in a wheelchair and using a walker. The doctor gave me steroids to build up my strength which helped me to be able to stand up on my own. It took me months to build up the endurance to just go down and up the stairs to do laundry, I remember having to stop half way up the stairs because I was so winded and tired. I'm so sorry for your situation hippychic258, I hope things start to get better for you!!

[Relax86]

I was in a wheelchair and using a walker. The doctor gave me steroids to build up my strength which helped me to be able to stand up on my own. It took me months to build up the endurance to just go down and up the stairs to do laundry, I remember having to stop half way up the stairs because I was so winded and tired. I'm so sorry for your situation hippychic258, I hope things start to get better for you!!

I also got better with steroids. I used HC. Which one did you use and how much - if you don't mind me asking. I just weaned from the HC and I'm pretty much scared to death.

[hippychic258]

Leydengs: How long were you in a wheelchair for and could you not walk because of tachycardia, and what symptoms did you experience?

It makes me sick to stand and I get lots of neuro symptoms.

[leydengs]

I was in a wheelchair for a couple weeks and then used a walker. I could pretty much get up to the use the bathroom and that's it. The tachycardia started it but I think it was due to that and the fatigue where my legs were just so worn out I had no strength to stand and they shook so badly I had to use the walker for support. I'm so sorry to hear that it is so bad for you, I couldn't imagine!!! Does anything help?

[Guest maia]

yes! and you have the perfect outlook =even if you lose it sometimes= to help yourself get through this: Just when the caterpillar thought the world was coming to an end............It became a butterfly

keep the faith hippychick. I was bedridden for months and then given steroids. It took about 2 weeks for them to kick in but when they did i got out of the bed and was able to go home.

Blessings and light!

[comfortzone]

Looking recently over my entire life I've had more episodes than a healthy person for sure - and while bouncing back takes longer at age 55 - thus far I always bounce back. I didn't always know the reason for being bed bound - but I was just 'non-functional' with fatigue being waaaaay over the top. In 2010 while working as a nurse I began sweating in a patients home and took the pulse ox off his finger and put it on mine and my heart rate was 147 just standing doing nothing much - that's when I looked into orthostatic issues and found some vasomotor instability I guess and hypermobile EDS or hypermobility syndrome.

First time was with pneumonia hospitalization age 12 - next was with a mono EBV hospitalization - these each took me out for about 6 months requiring 'school make up days' Then was a 3 month stint with panic disorder at age 30 - resolved with a short 3 month dosing of meds - they went away and never came back. Then was an out of the blue collapse - too weak to walk etc - lasting an entire year - the doctors said I was depressed - I was absolutely NOT depressed - friends and family knew this - but again could barely walk. After that was an 8 m. period after bilat hip replacements - and then the last one was the past 4 years after bilat knee replacements.

I always fight my way back though it gets harder and harder ... I have a lot of determination as do many of you - I get the best doctors I can to rule in or rule out causes unknown to me - and then just do my best. Sometimes it's just walking for twenty minutes. Then over a years time increasing that to doing that 3 times in a day. Sometimes I test myself with jobs where I have to stand - it's hard as hades and may be the wrong approach - eventually I have to quit - but it's part of my fight to function. Work keeps me accountable and out with people.

I know I am not truly bed bound now - but if I gave into my fatigue - I sure could be. I'm at that in between stage where I can actually make myself mentally do a few things a day. But function? My house is a disaster, my car, my bills, my everything feels a train wreck. This could very much be a case of the triad of joint hypermobility, orthostatic intolerance and chronic fatigue (syndrome) - perhaps began in my teens with the first round of mono/pneumonia - I just never pulled that gold thread before as no doctor ever gave me CFS - reading the criteria I meet all of it even down to the doctors always finding slightly swollen neck nodes...

So my story may be different from a POTS only type loss of function - but I do know I've had this experience of fighting back to working many times and I just as determned now as I have been in the past to get there - even though this four year 'down' time is daunting.

[hippychic258]

Thanks everyone. What do the steroids help with? Do they get rid of neuro symptoms? Which one were you given?

Thanks

[friday7]

Do people recover from being bedridden and go on to there normal life?

Yes.I was more or less bedridden when I was first diagnosed.. I've had ups and downs since then but much better off now. I can get out. I can't work ..yet. But sometimes I can drive and go to stores and volunteer to take care of the cats once a week at Petsmart. I went to a few concerts in the park this year. I even got up and dancded for one song(my versionof dancing.I can't move my feet , just my body or I'll falll over.LOL) I think at this point i have other problems such as an inner ear disorder that also keeps me from doing things. If iI didn't have that I'm sure i'd be much better.

I still can't do all that I used to do but so much bettter than 7 years ago.

Mostly what helped me is the salt loading, and getting my BP up. And also I got my overies removed. I had a major problem with my POTS symptoms when I had my menstural cycle.. So in my case it's helped a lot.

[Elenapap11]

Hippychic are you on any medication at the moment?

[leydengs]

Relax86 - I can't remember what the steroid was but it was something they gave me through the IV for like 4 hours and then I got a break and did another 4 hours or something like that. I just remembered it burned REALLY bad going in so they have to go back and dilute it more.

hippychic258 - I apparently was very lucky (after hear your story and many others), I was only in a wheelchair for about 2 weeks. The steroids really helped. I had to build my endurance back up, I used to have to stop and take breaks when going up the stairs so each day I tried to push a little bit more. I got on the treadmill and started out only being able to do like 5 minutes so I just kept doing it and adding time (as I could) and I built up my endurance. Your situation sounds so much worse, and I'm so sorry for that!!! I wish I had a better answer for you.

[hippychic258]

No Im not on any meds.

[looneymom]

My son was bedridden 4 months. He could not walk, crawl, or sit up on his own. I had to use a lift to move him. Eventually I was loaned a wheel chair that tilted back so I could get him to the doctor. When he was at his worst, our cardiologist did run test to check seratomin and dopamine levels. These levels were very low. I did research and checked with our cardiologist about giving him an amino acid supplement. He takes the GNC Amino 1000. Three weeks later he sat up. I thought this was a fluk but I told the neurologist what happened and she had me take him off of them for a week. Twenty-four hours later, he can't sit up. Six days later he has a spinal tap and he does not feel thing because she gives him a local. She allows us to stay will our son during the whole procedure and keeps asking questions about other symptoms that have showed up. After the procedure that day, I was told to start my son back on the amino supplement. Twelve days later, he sits up again and he is also able to stand. During the time he was bedridden, we always had a physical therapist coming 3 times a week and Occupational therapist 2 times a week. When he was a his worse, the therapist were actually having to lift his legs and arms to make them move to keep the muscle tone going. This was a very long haul but since he has been on the aminos, he has always been able to sit up and use the wheel chair. So far taking the amino supplements and a few other prescriptions along with exerise, he has been able to walk as long as his shaking does not start. This last summer, he starting shaking from waist down. So the next step is to find out how to make this symptom go away.

[chipper]

Most of 10 years, but after seeing Dr.Coglan, my life was back to almost normal. There has been backslides.but I work hard and start to feel better again.