Do People Recover From Being Bedridden??

[Outaker]

Interesting article

[Derek1987]

I've been stuck in bed since September 2018. Yesterday I had a horrible day and I didn't even do anything. Today I felt better but my body is still screwed up. I put some air in my tire for my wife's car. I have a mini pump I got from Amazon. It took me 10 mins. I even sat down in the air while the tire filled up. My heart rate jumped up 30-40 beats and my BP shot up. Lower number was 103. Laying down brings that number into the high 70s low 80s. 

I feel like I'll never be the same. I'm going to Vanderbilt eventually. Maybe they can do something.

We are trying to move soon(hopefully) and I feel so guilty I won't be able to do much at all. I'll hire movers. But packing will not be possible. I'll try and do some here and there.

Still early on in my journey to a recovered state hopefully. 

[DADofPotsSon]

My grandmother was bed ridden for 3.5 years postpartum with the birth of my father which was in 1928, only thing she told me was the doctors thought or called it soldiers heart?  She had a miraculous recovery only to find out she was pregnant again, though the problem never returned.  She had very bad H-EDS symptoms  including OH and at age 95.9 when she died there was not a good joint in her body, but what a sharp mind! .  She had the typical other symptoms of H-EDS though never diagnosed.  My dad was the only one of the 5 children who suffered with problems of H-EDS thought not diagnosed, his doctor said he surely had some type of blood pressure (OH) and joint problem, my son#2 a POTS sufferer and my youngest sister were both officially diagnose with H-EDS.  Though Dad's 1 sister did have problems with subluxation of her toes, of which I do too!  So, it is possible you can go from bedridden to somewhat of a normal life!

[Beacher]

Hello everyone,

I stumbled onto this site looking for a heads up on if I can ever hope to walk again.  I was hospitalized for one year including rehabs and bedridden for 4 of those months.  Both of my knees became infected in June 2018 after several over-the-years TKRs.  The left knee was cleaned out but the right knee needed a complete redo.  The doctors put an antibiotic block in my right knee hence the bedridden months.  I came home January 2019.  At that point I couldn't even transfer myself from a bed to a commode without help.  Fast forward a year and I can use a walker to walk around the house and from the car to a store.  Although once in a store I need an electric cart.  I still cannot walk without the walker.  Also I don't want to give you the wrong impression that I am zipping around with the walker.  It is still a struggle and I have to constantly remind myself to straighten up while walking.

I need to be able to walk without an apparatus, I HAVE TO.  My first grandchild is going to be born any day now.  My children are 39 and 42 and I never thought we would be blessed with this gift, but we have been and we are over the moon. However I will not be able to babysit him or walk him or play with him the way I would have 2 years ago.  I am 66 years old and have always had a fairly active life.  I was "let go" from my job of 32 years while in the hospital so I am now "retired" whether I wanted to be or not.  I always dreamed of being retired and watching a grandbaby.  I can't believe this has happened.  I walked into the hospital but took an ambulance and stretcher home.

Does anyone have any suggestions on how I can walk without aid?  I saw that there is a new drug for MS patients that can help them walk but the FDA hasn't fully approved it yet.  What about steroids? Has anyone had any benefit from them?  I have a physical therapist that comes 3 times a week and she was the one that got me up on my feet and walking the 100 feet but I fear we have stalled now due to an Achilles tendon injury.  I am getting an operation in March to repair my tendon on of course the right foot!!  

Sorry for this long winded appeal. It all came to a head tonight and I had a mini breakdown.  I saw this site and I thought ***.

Thanks in advance! 

 

 

[Elisabeth417]

Dear Beacher,

My heart goes out to you!  You've had such a tough time.  I want to give you hope because you have so much joy happening for you now.  I was a first-time mother when I was 40, 23 years ago, so I know how special it is when you think that you'll never be a mother or a grandmother. and then this miracle happens!  I have one son and he is the world to me!  If you read my posts, you will see my story.  I hope your request opens up a new discussion because, unfortunately, I have not found an answer yet and I have been bedridden for 4 years now.  But, I have a new naturopath and she hopes she can help me.  I definitely have Chronic Fatigue Syndrome now, too, because of all this has taken out of me, but she thinks that if we help that, some of my other maladies can be helped as well, and believe me, I have many--too many to list here right now.  But, if my blood volume can increase by her methods, it may increase my upright ability.  I requested hydrocortisone (steroids) from her to try, but she wants to try the natural remedies first because if you go the steroid route, there can be many problems and side effects, but I may have to eventually go that route.

 

Please, let's correspond.  There is another member that just recently contacted me.  Maybe all three of us can help each other!  Blessings to you, your child and this new baby coming into your life!  Much love to you all and I hope that you're going to be a super-active Grandma!  My mom and my son (his Grandma) have a super-special bond and I know you will, too!  Even being less active than you would like and talking and teaching and cuddling will be just peachy with him, but I know you would love to do more. Please write back when you can.  If I can't answer right away, I'm just too ill,, but I will as soon as I can.  We never give up, right?  Lots of love to you.

 

Truly, Elisabeth

[Dawn knight]

Does being bedridden  for a month make you dizzy when you do get out of tge bed and try walking again.my supraventricular tachycardia caused me alot of issues as well as meds .and being scared of heart rate going to 146 bpm if i walked to much. So med anxiety  and the heart issue had me jn bed awhile,so, how do you get right  again. 

[Pistol]

@Dawn knight - welcome to this forum! -- As to your question: yes, spending a lot of time in bed can cause deconditioning, which shares similar symptoms as POTS. Due to lying down so much your body needs to relearn how to adjust to being upright. POTS or not - the recommended treatment for this is slow reconditioning. This is often obtained by doing leg and core strengthening exercises while lying down and getting up slowly from a sitting position to standing several times an hour, increasing the time standing by seconds every time. Once you can stand for a bit you can do orthostatic tolerance training: stand with your back leaning against a wall, feet in front of you and aligned with your hips ( about 1 1/2 feet apart on average ). Slowly slide down the wall until squatting, remain in this position for a few seconds and slide back up. Remain standing a few seconds and slide back down and repeat. 

Sometimes the dizziness upon standing can be caused by a sudden drop in BP, so it is important to measure your BP when you get symptomatic. In general, for the symptoms you describe increasing water and salt intake is often recommended. But with your history of SVT I would definitely see the cardiologist. 

[CallieAndToby]

On 7/31/2019 at 3:57 AM, Derek1987 said:

I've been stuck in bed since September 2018. Yesterday I had a horrible day and I didn't even do anything. Today I felt better but my body is still screwed up. I put some air in my tire for my wife's car. I have a mini pump I got from Amazon. It took me 10 mins. I even sat down in the air while the tire filled up. My heart rate jumped up 30-40 beats and my BP shot up. Lower number was 103. Laying down brings that number into the high 70s low 80s. 

I feel like I'll never be the same. I'm going to Vanderbilt eventually. Maybe they can do something.

We are trying to move soon(hopefully) and I feel so guilty I won't be able to do much at all. I'll hire movers. But packing will not be possible. I'll try and do some here and there.

Still early on in my journey to a recovered state hopefully. 

I'm sorry Derek. I've been bed bound once in the complete dark for a year. Now I am there again. The issue is, doctors aren't getting at the root causes. 

I have some rare form of chronic blood cancer but the medication I was on severely suppressed my immune system and I suspect an infection; so for me this is not autoimmune, steroids and those types of things have always made me crazy sick..... one of the most helpful things was a 6 month clinical trial of IVIG. My mom asked for my testosterone levels to be checked and they have came back crazy crazy high. I'm waiting on Vanderbilt as well. 

If I sit up, I black out, if I stand I tend to collapse and have seizures. I've been diagnosed with ME as well but IDK. Every sound and light is shocking to me. My mother is a nurse caring for me but we have no idea what to do. 

I have been to UAB for my bladder so I have an establishment there and can self referral..... Am I allowed to ask for any suggestions at UAB?  I have heard great things about dr coghlan as well but I think he's retired. Getting tired signing off. 

 

[CallieAndToby]

On 5/11/2017 at 5:22 PM, Elisabeth417 said:

Hello All!

I'm wondering if this thread is still active and how everyone is doing.  I, too, cannot seem to recover from being bedridden (1 1/2 years now).   I can stand up for about 3 minutes max just to go to the bathroom (thankfully!) and then I crash.  I have seen so many doctors and have had many tests and no one knows what's wrong with me.  I feel it's a combination of Dysautonomia, Adrenal Fatigue,  Extreme Adrenaline, Hormonal Problems, Panic Disorder, Migraine Headaches and Chronic Fatigue Syndrome.  Yet, no doctors agree with me and will give me no help whatsoever and just tell me to exercise which leaves me totally exhausted.  I've even been referred to Stanford Dysautonomia twice and they have denied my case without even seeing me.  I've had MRIs, MRAs, CATS Scan, EEG, blood tests, urine tests, etc., etc.  The only thing that I have tested positive for is SIBO, but that doesn't explain all of my maladies.  I've actually been ill for 6 years and bedridden for 1 1/2 years now and I just keep getting worse and worse no matter what I try--graded exercise, salt loading, rest, different diets, caffeine, no caffeine, much more.  I seem to have tried it all with no results but downhill.  I'm so upset that no doctor even takes me seriously.  While bedridden, I have so many other symptoms, too, besides "just" not being able to get up--digestive disturbances, brain weirdness, tingling, ringing in ears, tight body, extreme heaches, body aches, low body temperature, too hot, too cold, can't sweat, too much sweat, deep depression now about my situation, just everything.  Is there anyone still out there that I can talk to and who is open to going through this "journey" together?  Thank you so much.  I find this website so hopeful and inspiring!  Thank you to anyone who answers.  Truly,  Elisabeth417

Hi Elisabeth, wondering if you ever got help or answers? I'm in a scary situation myself and my doctors don't care either and I keep getting rejected from different places as well or recently referred to the wrong physician! 

Dr. Coglan was a special physician that solved the unsolvable, I wish many more of these doctors existed.