Do People Recover From Being Bedridden??

[Elisabeth417]

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

[haugr]

Welcome to the forum Elisabeth!  I'm so sorry to hear that you have been struggling.  1.5 years is a long time to be bedridden.  I was pretty messed up like that too for a couple of months, but I was lucky enough to learn how to manage it.

What happens to your heart rate and blood pressure when you stand?

[BuffRockChick]

Hi!  Welcome!  I'm not bedridden, but after 6 months bedrest (during pregnancy, twice 8 years apart) it was incredibly difficult to start moving again.  My latest bedrest was 2 years ago now, and it was partial bedrest where I was taking up to 2,000 steps per day.  It has taken 2 years to really recover.  I am finally beginning to be able to walk 10,000 steps per day without a huge crash and taking days to recover.  I am just beginning to be able to lift things I have been unable to lift since that pregnancy.  I'm still in bed at least a third of the day.

I have no doubt that strength and stamina can be restored, but I know it's not a fast, easy, or comfortable process.

[Elisabeth417]

Thank you so much for answering!  I'm sorry, I didn't see these posts until now.  I thought I checked the box that said "Notify Me of Posts", but I'm not sure what happened, so when I logged in and saw your responses, my heart was so warmed!  Also, one other special person contacted me directly, so thank you so much to her, too.

Mainly what happens when I stand up is that my body, mostly my right side, contracts so much (feel like blood vessels, muscles, nerves) that I don't think I'm getting blood to my head and I feel like my whole system--starting in my head and working its way down to my feet--is caving in and I cannot remain standing.  My last doctor checked my blood pressure (although I couldn't stand up very long before I collapsed, so I'm not sure what happens with more time--I could really only stand up for 2 minutes or so), he said that everything was fine!  Well, it's not fine.  I think that my system is contracting to elevate my blood pressure so that it "looks" fine.  Also, I get so much adrenaline in me and I think that's because everything is failing and my body is trying to keep me going.  I've been to a dozen doctors and nobody really knows what is going on, but I keep getting worse and worse.  As a matter of fact, my last doctor just dropped me because he said that he couldn't help me and has referred me to a PTSD specialist.  But, I feel like if I could get some blood-enhancing medications (Florinef) or a small dose of Hydrocortisone just as a trial, it might help, but he refused to do so.

In the meantime, I'm trying to recondition with exercise and be upright minute by minute, but that is just really exhausting me.  It also is creating all kinds of digestive dysruption which is also affecting my entire system and head.  At this point, I can barely think.  I have actually read that the body tightens up with Chronic Fatigue Syndrome because of low blood volume.  The body is constricting everything to get blood up to the head.

When my illness first happened, I felt a lightning bolt strike me in the forehead.  Has anyone else had this happen?  It feels like this lightning bolt shortted out my nervous system, especially on the right side, and is causing this dysautonomia.  I may have a neuropathy going on, too, because I feel this dysfunction from head to toe.  At first, I could continue to stand up even though VERY dysfunctional (for several years), but then 1 1/2 years ago, I had to lie down and I actually started to feel better because I felt like I was finallly getting some blood back in my brain, but then when I tried to get up again, my body couldn't do it.  Lying down actually eases this huge amount of adrenaline I feel and my body and brain feel more at ease, but trying to get up causes so much dysfunction, I'm not sure that I'll ever be able to really accomplish it.  My previous doctor just thinks that I'm deconditioned, but this whole thing started when I was fine.  Deconditioning may be an issue now since I've been lying so long, but it is not the reason I became sick and no one seems to be able to find that reason.  I honestly feel that my body has so little blood in it that that is why I'm so dysfunctional.

I feel a bit hopeless at the moment as my previous doctor pretty much told me that I was fine and refused to do tests or give me medication on a trial basis.  He was my last home since he was a home health doctor.  I cannot get out to see any other doctors, so I guess I'm stuck here.  What do people do?  I'll continue trying, but sometimes giving up and realizing that I'll remain like this forever actually easing my system and makes me temporarily feel better.  But, I still have years of life in me, I hope, and I give myself a pep talk to keep trying.  BuffRockChick, I really felt reassured when you said that you are now able to walk 10,00 steps (good for you!) and to lift things that you couldn't before.  I cannot lift much of anything at this time.  Even brushing the dogs while lying is so hard.    I feel so badly for you since you have two little children to care for; it must be so hard, but you've come such a long way!  You sound so positive and I send you and everyone here much love, peace and hope.  

I've been reading a lot about astronaut reconditioning.  They go through these kinds of things when coming back from space, but they're bodies are normal and they can recover.  I think that this is part of the problem and that gravity is pulling me down because I'm now so weak.  I have read about a scientist who has done much research on this and said that "getting" upright (even just sitting from a lying position for a minute at first) and not "being" upright is the solution to not letting gravity pull you down into the ground.  I can find that article if anyone wants.  It was very inspiring, really, because I didn't feel the gravity heaviness at first at the beginning of this illness, but it's all encompassing now.  I feel like I'm being sucked to the core of the Earth.  I am so unbelievably heavy! 

I'm sorry; I need to end here.  I'm just exhausted typing this.  I feel like I'm "complaining" a lot in the above scenario, I'm sorry, it's just that I have no one to talk to that can relate to these struggles, until I found this website.  My family is supportive, bless them, but they don't understand.  To be honest, I don't understand either how I could fall apart so completely.  I used to be a strong. doing person and I just totally collapsed.  It's very hard to stay undepressed and look toward the future, but I'm trying.

Bless you all.  I'll look forward to any more responses.  I'll be more upbeat during our conversations.  I just had to get this angst off my chest.  Much love to everyone who is on this website going through the same struggles.  If anyone knows a doctor in the Northern California area (I live in Napa, CA) that they can recommend, who is open-minded and compassionate about unusual illnesses, I would so much appreciate it.  Every single doctor I've seen has no idea what is going on, despite thousands of dollars of testing.  I seem to need an alternative-thinking doctor who can look at unusual underlying body/brain dysfunction with Dysautonomia/Adrenal Fatigue/Hormone Imbalance (Menopause)/Chronic Fatigue Syndrome.  It seems like when one thing goes South, a lot of things go South!  But, I do think everything is inter-connected, so just discovering how this all happened (6 years ago now), will most likely help everything.  I do think at the time, I had an Emotional/Spiritual crisis going on, too, so it all adds up.

Much love and blessings to you all, 

Truly, Elisabeth

[Elisabeth417]

Thank you for welcoming me, haugr!  I just realized that I didn't answer all of your questions regarding blood pressure and heart rate.  It's very hard to get an upright blood pressure reading now because I can only stand for a 2 minutes or so, but about a year ago, I could stand for about 5 minutes and my blood pressure did go down when standing.  I was going through a completely terrible time of very, very low blood pressure because I was lying still when I was lying down.  My blood pressure would drop to about 75/45 during that time and i would feel like i was fainting even while lying.  I wondered if it could be because of my lack of activity even while lying, so I did start to do bed exercises and just start to move in some way all day long.  A year of that actually caused a blood pressure increase to about 100/60, which was a marked improvement, so lying down and being still did make me worse.  I started to measure my BP then standing up and it would drop to about 88/55, obviously a problem.  So, even though I cannot stand up very long now, from past experience, there is a definite drop.  My heart rate is higher, but not as high as other people with POTS.  It's more that my heart pounds all the time, lying, sitting, standing--I constantly feel like I'm going to have a heart attack.

My latest doc only measured my BP standing up for one minute and then my body would start to constrict to keep it up and it even gets up to 120/80 sometimes!  He then determined that I did not have Dysautonomia, but I tried to explain to him that it only looks like I do not have Dysautonomia because my whole blood and body system is constricting and producing adrenaline to keep my BP up.  He poo-pooed the whole notion.  When I asked him to try blood-volume enhancing drugs, he said no because then it would make my blood pressure too high.  When I told him that with the blood volume-enhancing drugs, my blood volume would increase and then my body wouldn't constrict when I got up, he basically told me that I did't know what I was talking about and dropped me and said that he couldn't help me anymore.  He told me that I wasn't giving my all to the reconditioning program and that I have an emotional problem. Haven't a lot of us heard that before?  I've done a lot of study on this and I'm pretty sure that many of my symptoms are related to low blood volume.  I think that deconditioning has made my blood volume lower, but that it was already low before I became deconditioned.  By the way, even when I was well, my blood pressure was on the low side (105/65).  It didn't really cause problems back then except the ocassional temporary faintness for only a minute upon standing.  When I said that I was convinced that my blood volume is low, he said--drink chicken broth! and that would solve all my problems.  I eat a lot of salt and do a lot of natural things to help increase my blood volume and it doesn't seem to make any difference except to hurt my stomach.  Well, after the chicken broth comment, I knew that he wasn't taking me seriously and, actually, it's a blessing that I'm not seeing him because he doesn't understand at all.     

[BuffRockChick]

Start where you are.  It seems to me that you have an idea in your head of what you "should" be doing.  Let that go for now.  Forget "exercise" for now, and think "movement" instead.  What movement can you do?  You mentioned brushing your dog.  That's movement.  It's challenging for you right now.  Start there.  Brush your dog.  Fold socks. Add another pillow so you're reclining more elevated.  Trace letters in the air with your feet.  Drop your feet over the side of the bed for a little while.  Have someone elevate the head of the bed with bed risers or bricks.  Focus on what you CAN do, start there, build on it.

I'm sorry you're having difficulty with medical care.  Have you had a tilt table test done?

[BuffRockChick]

I see your second post. Blood pressure going up while standing does not mean you couldn't have dysautonomia!  Have you read about hyperandrenegic POTS?  It's marked by blood pressure increase upon standing and high norepinephrine upon standing.  If you have that type of POTS, it would explain your adrenaline feeling when you're upright.

I have preliminary POTS diagnosis and have twice confirmed by doctor that my blood pressure does not drop when I stand.  (Okay, sometimes it does, but it's not usual and comes with a splitting headache).  My blood pressure typically goes up when I stand.  It goes low when I'm resting 84/48 ish, and high when I'm standing 129/85 ish. 

I have neurology consultation coming up because my doctor wanted me to have tilt table test done.  I'm going to ask for catecholamine testing too during the tilt.  I'm also going to ask about baroreflex because when I'm feeling unwell my blood pressure is either high or low.

[Elisabeth417]

BuffRockChick--thank you so much!  You are so encouraging!  OK, yes, movement--I'll keep going.  Sometimes I want to give up, but obviously that's not the answer!  I'll do the things that you mention more and more.  I am at my worst in the morning and I truly feel like I will die--honestly, I don't take that lightly--I truly feel like my heart and my body will just stop.  As the day goes on, I feel a bit better and can do a little more and by midnight, I can actually do some semi-strenuous bed exercise--nothing upright and really feel best around 2:00 AM!  I then don't want to go to bed (and often don't until 3 or 4 AM) because I know it's going to start all over again the next morning.

However, I'm in a quandry.  Exercise helps my system, but it also triggers my adrenaline which spirals out of control.  I get very panicky and shaky and this causes a lot of digestive dysfunction.  This adrenaline is a big indicator of Adrenal Fatigue and Chronic Fatigue Syndrome.  I'm honestly not sure if I should be exercising because it can make AF and CFS worse, but it helps Dysautonomia and deconditioning.  So one thing that helps one thing, causes the other to be worse!  I have been diagnosed with SIBO, too, so it seems like the more active I try to be, the worse my digestion is and it does not just affect my stomach--it affects my head and entire body.  I can barely eat anything without some kind of reaction, even lying down.  Sometimes the "trick" is to keep moving just enough, but not enough to trigger the adrenaline.  I'm not exactly sure if I can do the amount of exercise that is needed to get up again without the adrenaline kicking in, but that is my goal and I'm continuing to try.  My adrenaline was SO high when I was upright and I was so dysfunctional that  lying down has actually helped that situation.  So . . . whether I can get up or not without recreating that situation, I just don't know . . .

I have so many symptoms--extreme headaches, body tremors, body parts clumsy, panic attacks, light, sound sensitivity, so much . . . I honestly don't know what my problem is. . .  

I have not had a tilt table test.  I was referred to Stanford Dysautonomia Clinic twice a year-and-a-half ago when the bedridden situation happened and they would not accept me.  No explanation.  My then doctor tried to get me in and they would not even explain it to her and then she retired and they wouldn't even return my phone calls, so I've been at a dead-end for that kind of testing.  I feel that many of us with these kinds of dysfunctions meet the same kinds of roadblocks for some reason.  I actually did see a neurologist later and she was open to doing some testing.  I was able to get to her office at that time, but now it's impossible and I can't get back.  My goal is to try to improve to the point that I can actually go back and see her because she did seem open to some unusual phenomenon that goes on in the human body.  So, I'm trying to recondition to get to that state where I can see an out-of-home doctor because the in-home doctor sure didn't work out.

I want to share this article about gravity before I forget where I found it.  I hope that it will help you and others:

http://www.viewzone.com/gravityx.html

It's obvious that a lot of this stuff IS going on with me.  So, I'll keep moving, right?  Thank you so much, BuffRockChick (love your name!).  You're very inspiring.  I hope that things are going well for you today.

[BuffRockChick]

Today is rough.  I was doing fabulously well, until a change in the weather last week.  We had a tornado 3 miles north of us,  and two power outages.  Stress of that started me all over at mostly-bedridden about 2,000 steps per day.  Our weather is cold and rainy so I don't have much else to do.  I'll be okay soon and the weather will be warm soon too.

Whe you said "Sometimes the "trick" is to keep moving just enough, but not enough to trigger the adrenaline", I agree completely.  I had to figure out how much activity would not trigger fatigue and stay under that amount.  When I tried to increase my activity at a linear rate, I kept going in a loop of over-exertion, fatigue/bedrest, slow recovery, feel good, over-exertion.  When I stayed under an activity level that didn't trigger fatigue, I made movement gains shockingly quickly.

I also would get really stuck in a sleep deprivation loop because I'd FINALLY FEEL OKAY at night.  (This earned me a bipolar disorder misdiagnosis too.) I used fitbit data to figure out how much sleep I needed.  I was so out-of sorts I had no idea!  I started using magnesium and low dose melatonin to help get reset on a decent sleep cycle.  

I understand about being labeled as "emotional".  I was misdiagnosed with various mental illnesses.  I started treating myself as a science experiment, trying to isolate variables.  I had to fix my diet (easier said than done!), get off of caffeine, fix my sleep, and work on reversing deconditioning.  I started collecting heartrate data, and did poor man's tilt table at home.  I charted everything until I started finding patterns.  They were not what I expected!  A happy outcome of charting was it became clear that my mood changes coincide with posture change and blood pressure fluctuations.  Interesting!  That got my doctor's attention and got me the referral to neurology.

It's been a long road cleaning up my diet was first - started last year August after I ended up diagnosed with (accused of?) an eating disorder.  :sigh:  nausea.  It's nausea. I expected that clearing up "deconditioned" would be a lot more difficult.  I tried horizontal exercise versus upright exercise.  I can't tolerate much upright, but horizontal exercise with heartrate monitoring was extremely reassuring.  I'm not so afraid of tachycardia anymore and don't let it limit me as much.  I still have healthy respect for dizziness and faintness!

I do what I can.  Some days, like today, walking is unpredictable.  Sometimes I can get up and walk, other times I collapse.  That's okay, I can crawl.  My kids love it, my toddler climbs on my back yelling "Ride!  Ride!".  My family is adjusting to being on the floor.  My previous flare I would help cook, put a cutting board on the floor and cut the veggies on the floor.  I can't always stand up, but I can still do stuff!

[Elisabeth417]

BRC--You are amazing!  Horsey Rides, Chopping Vegetables on the floor.! You are an unbelievable woman!!!  What a wonderful attitude you have.  I can learn much from you.  I try to stay upbeat, but I crash a lot.  Just reading your post has really uplifted me.  Thank you!

Yes, I've heard of Hyper POTS and I do think I have this.  I'm still not sure what exactly happened to me as it came on so suddenly.  The right side of my body just totally dysfunctioned.  One second I was fine and the next I was disabled.  Did it happen like that for you, too?   You said it happened after having your baby--did you feel it right away?  What were your symptoms?  Have you ever had an Adrenal Saliva Test with hormone function, because maybe your hormones went haywire at that moment.  This test will show your melatonin levels, too, which mine are completely the opposite of what they should be, which is why I'm such a night owl.  I also have almost zero female hormone function among other things like DHEA.  I was starting to go into menopause and I think that it had been coming on slowly, but then my situation got triggered by hormone drop and a lot of stress that I was going through at the time.  Then, they misdiagnosed and mismedicated me in the hospital and that's when I became a million times worse.  I feel that this was the moment that I went into a huge dysautonomic state.  I had so much continual panic, unbelievable adrenaline and body dysfunction that I lost 70 pounds in 3 months.  I could hardly eat anything and I had to exercise continutally to try to get rid of some of this adrenaline.  I could barely think or understand what people were saying.  My nervous system felt like it was electrocuted and a switch was turned on and it could not stop.

Can I ask where you live?  Tornados may totally unhingle me, too. I react to the weather, too.  I'm not sure why--mainly if it's going to rain.  I have read that low atmospheric pressure can make your blood vessels widen, thus dropping blood down into your body and away from your head.  A year ago when my blood pressure was so low, I was extremely bad when rain was coming on.  

I wish you all the best at your neurologist.  The neurologist that I was seeing actually ordered a catecholamine test, but then I became so badly bedridden that I couldn't get to the lab to get the test.  This is the neurologist that I do want to go back to, though, because she really listened to me and wanted to check out a few things that I hadn't had done before.  So, I hope that yours will be a life-changer for you.  Are you on any medication?  I'm not sure if it would help or not, but I would like to give it a trial run.  Not antidepressants because I had a terrible reaction to those.   How are your emotions?  Do you react to everything?  Your life, other peoples lives. the world?  Do you feel EVERYTHING in your body?  I find that I have to stay away from anything emotionally upsetting or even exciting, even little things, even past emotions.  My system is so sensitive!  

Two days ago, I started doing the "gravity" test.  I set the timer by my bedside and set it for 20 minutes.  Every 20 minutes, I stood up and walked around as much as I could, usually only a minute or two, sometimes just up and down.  Well, the next day (yesterday), I felt horrendous.  I could not stand up for even a few seconds.  And, today, I can hardly either.  So, it's apparent to me that I overdid it.  Wow, it's really mind-blowing when you realize that even standing up against gravity can exhaust you like that.  But, not to give up.  This afternoon, I set the timer and am sitting (not standing, that apparently is too much) up every 20 minutes.  According to the article, it's the act of moving your body more upright even for a moment that counts.  So, if I'm lying all the time, sitting is really the next step.  I've obviously been skipping this point, which is very needed.  So, I need to realize that I've been down a long time and it's going to take a very long time to get up.  I actually read recently that no matter how fit you are horizontally, it does not translate to upright function AT ALL.  They are completely different systems.  When I first started this reconditioning, I wondered why I couldn't get up because I seemed to have enough strength when pushing my legs and arms when lying.  I thought that if I just rested longer, I would suddenly get up after my body recovered and I couldn't do it.  I was shocked!  So, now I know better, that it will take a little at a time and pushing too hard will cause a crash.  There's my 20-minute alarm--time to sit up for a moment .. . . 

Thank you so much for communcating, BRC.  It looks like you're slowly finding out what helps.  I have a lot of information on Adrenal Fatigue if you'd like me to send it to you (or everyone).  Many of the things that you're finding out help seem to be adrenal related, so perhaps that is part of your situation.  I'd love to help you as much as you are helping me.

Take care everybody.  Much love to all!

 

[BuffRockChick]

I like your conditioning plan!  Even though you overdid it, I think you're on the right track.  I did something similar.  I noticed on my heart rate and symptom data that even though my heart rate jumps up when I stand, I don't get discomfort or presyncope (usually) until 6th minute of standing.  I also observed that my heart rate recovered in 10 minutes of lying down.  So I got a HIIT interval timer app and set it for 5 and 10 minute alternating intervals.  5 minutes upright, 10 minutes lying down.  I got so much housework done in those 5 minutes at a time!  After a while I'd notice my heart rate wasn't recovering within 10 minutes and that's how I knew when to stop for the day.  You can do the same - collect data to figure out what you can tolerate without discomfort or crashing.

The first dizziness I recall was after I had mono / Epstein-Barr virus in 2004.  I may have had some blood pooling and cold intolerance before then, but I can't be certain.  I know that presyncope started suddenly soon after having mono.  My (now ex) husband started complaining of "mood swings" and I got shuffled through as a psychiatric patient -- never had a physical exam.  I acquired many, many psychiatric misdiagnosis.  

In March I had a very early miscarriage, which was emotionally no big deal as I was pregnant for 8 whole days, but my body reacted and hasn't fully recovered.  I was trying to figure out my symptoms.  I thought diabetes or reactive hypoglycemia - but I bought a blood sugar meter and that was definite no.  I thought endocrine problem and had doctor appointment to investigate.  I was reading about rare disorders because I find them so strange and fascination, stumbled across POTS, stood up and checked my heartrate!  I'd never noticed the tachycardia!  In all those years!!  I dismissed it as being "out of shape."  

I have been very reactive, but after 3 years of cognitive behavioral therapy, I'm much better.  I moved to a very quiet rural home, we got rid of TV, I can't handle most media - radio ads, pop music lyrics, social media, news, even National Geographic is too upsetting and sensationalized for me. I crash badly when I work outside the home, I can only sustain it for about 12 weeks.  I can sorta get through a semester of part-time college - last 4 weeks are devastating.  I can't do 2 semesters in a row.  It's hard to balance need for community with need for low-low-stress environment.  Heck, even the advertising on food packages stresses me out.  I pour packaged food into clear glass jars to limit exposure.  I have difficulty shopping - between my usual ADHD and blood pooling in my feet, it's exhausting and stressful and I make too many impulse purchases.  I do as much shopping as possible online.

No medications here.  After my tilt table test I plan to start back into horizontal exercise regimen.  I use compression calf sleeves on bad mornings. They're not comfortable, but they work.  I'm not using a lot of salt until I get guidance from a doctor about my labile blood pressure. I have used service dogs in the past and would be likely to get and train a dog for myself.  When I was on ADHD medication I was supright most the time, I may ask to try that medication again and collect some data to see if it's actually helping my POTS.  The appetite suppressant and reduced sleep are risky side effects for me, so I'm not sure it's worth it.

re: sleep, melatonin, and cortisol: I thought my cortisol levels were messed up because of my longstanding pattern of alertness and energy at bedtime.  Probably not.  Since fixing my sleep schedule with melatonin I'm not having the same pattern.  I actually get tired at night now.  I'm up later than usual now and about to nod off typing this!  TTYL!  Take care of yourself!  You're doing great!

[Elisabeth417]

BRC-Wow, what an experience! Thank you so much for your story and I'm SO, SO sorry that all of this has happened to you.  I'll write more when I have a chance to read everything in detail.  You have many great recommendations.  Right now I'm trying the getting upright just a little for 1-2 minutes every 20 minutes.  I'll let you know in awhile if I see an improvement.  Take care everyone.  Let's stick together and see if we can beat this or at least improve our lives.  I'll be reading all the previous posts in detail, too, and trying some of the techniques suggested.  I think that all of us on this website have been to many, many doctors who have no idea what we're talking about.  Many of us have been told that there is nothing wrong with us, to just exercise more or see a shrink.  I think my lesson in life is to listen to my own body.  These symptoms are telling me a story and if I tune in I might be able to decipher some of the ill feelings.  I know for me that emotions do play a huge role in making this whole situation worse, so trying to stay positive and do something even for a minute that brings me joy and comfort soothes the body and hence many of the symptoms and allows the body to heal naturally, like it does want to do.  I've always been one to push myself even though I may be exhausted or have a headache and to push down emotions (mine, others, the world) that may be too intense or uncomfortable to express.  All of this has turned inward on me.  I think that many things that I have done in my life has worn me out.  It's time to re-evaluate and bring the love and joy back  I wish love and joy, and especially peace, for all of you, too!

[Elisabeth417]

Hi All,

Just wanted to check in.  I'm sorry I haven't been able to post.  I've been having a "situation" from trying to recondition which has set me back immensely.  I'll post soon as to what happened.  Let's just say for now that I expected too much too soon and most likely pushed too hard and now I'm experiencing the brutal aftermath.  Take care, everyone!

[Elisabeth417]

Hi Everyone,

I'm feeling a little bit better, so I want to tell you all what happened when I went on, what I'm calling, the Astronaut Recovery Plan.  I put the link up in one of my previous posts.  Anyway, the idea is to get more upright every 20 minutes to recondition yourself to the pull of gravity.  So, in the morning I gave myself one hour to try to wake up--extremely hard to do, even just lying--but then I started every 20 minutes to sit or stand all day long for over 12 hours.  Up, down, up, down, up down--blood in head, blood out of head, blood in head, blood out.  Sometimes I just couldn't do it and had to skip one session, but I really challenged myself and kept at it for 5 days.  If you add it up, that's 36 times a day with this upright challenge.  It wa excruciating!  I had a very bad headache all the time, my body felt like it was collapsing,  I was so dizzy and felt like passing out and short of breath, the right side of my body would get tight and clumsy  and burn and be full of pain, but I thought if I just continued, I would eventually feel better.  I actually could stand up a little more each day, but it was so hard that it was like I was climbing Mt. Everest every single minute.   My chest was so tight that I thought I might have a heart attack.   I wondered if I was doing too much, but I was determined to get better and hoped that this was the way.  But, then disaster!  On the 5th night, my head just collapsed!  I already had a semi-migraine on my right side, but then while standing for just one minute, the left side just suddenly caved in.  I got an EXCRUCIATING headache, the left side of my face went numb and my left eye went very wonky.  I was very disoriented and I had to lie down right away and remain lying completely flat for 5 days.  Any kind of movement or exertion, even ankle rolls, intensified the pain.  I felt like I was going to have a stroke any minute.  That was 2 weeks ago and I do feel quite a bit better, but still feel the pain.  I think I had an exertion headache.  I always wonder if I have a CSF leak, too.  But, obviously, I totally overdid it big time!

So, now I've had to back up and look at my health plan.  I've realized that I'm just not healthy enough for that big of effort.  After a year-and-a-half of being bedridden, I am obviously severely deconditioned on top of everything else.  I don't think I have enough blood in my body to support a plan like that and I have to take it very easy.   I am almost completely out of energy to even try to feel better.   Unfortunately, my blood pressure monitor was out of batteries, so I couldnt' see what was happening with my BP.  But, I think that when my blood pressure does get low, my body sends out adrenaline and tightens up so tightly to send blood to my head, that sometimes my BP looks ok when it's really not.  I honestly don't know what's wrong with me.  It seems like I have a lot going on--Dysautonomia, Adrenal Fatigue, Chronic Fatigue Syndrome, Migraines, Exertional Headaches, etc., etc.,  My body has just totally collapsed and I'm not really sure if I'll ever recover.  For now, I'm going to try to be the healthiest bedridden person I can be.  Or, my new term--Vertically-Challenged! 

I know that you all can relate to how it takes a toll psychologically.  I had high hopes for this program and am just devastated that I'm now in an even worse situation than before I tried the "Astronaut Plan".  But, I realized how much I forced my body to recover.  I thought that if I just kept pushing, things would improve (blood pressure, blood volume, muscle strength, etc.), but that doesn't seem to be how these illnesses work.  I don't want to do too little because that makes me even more deconditioned, but I don't want to do too much because that makes me collapse.  I'm learning to listen to my body.  It's upsetting to think that I'll never be the same person I was before, but that doesn't mean that life does not have any meaning.  It's meaning in a new way.  Every now and then I get very upset that I have not been able to find a doctor to help me.  Even when I tell them what I think is wrong with me and possible ways I can be helped, they just brush me off.  The last home doctor dropped me completely without even trying to figure out what was really wrong.  He pretty much told me that I didn't know what I was talking about and I have to try harder to get well and have the "right attitude".  I've lived with this for 6 years now and I do know what I'm talking about.    It makes me very sad that these doctors are pretty much telling me that my life is not worth much and that feeds into my childhood insecurities where I felt like that a lot.  Many times I've gone down a very dark path and given up hope.  But, I've learned so much with this illness and my connection to God.  I've learned to be much more compassionate to others, but especially myself.  I think I have been too hard on myself all my life and continually pushed beyond my capacity and didn't give myself enough time for rest, enjoyment or love.  So, life is full of experiences.  Sometimes we can learn more from hardships than from easier times.  Sometimes just lying and listening to beautiful music is just what we need for our souls.  

I hope everyone is doing well.  BuffRockChick, I need to respond to your letter as you've been so kind to me.  I will soon. This entry is all I can handle right now. but I hope that you're having a peaceful day.  

Take care everyone on this website and love to you all!     

[BuffRockChick]

I'm glad you're on the road to recovery!  Be gentle with yourself!  Move forward, but gently!  Your story reminds me of @DizzyGirls who posted on here in the last 24 hours about spinal fluid pressure as relating to migraines.  I hope you find time to read her recent posts.

I'm enjoying perfect weather over here.  Not doing much.  I started piano lessons, so I've been practicing piano when I'm dizzy.  I feel emotionally better to sit at the piano than lie down.  My heart rate is about 20 bpm higher than lying down, but as long as I'm not dizzy I don't mind.

I've had a couple scares.  Yesterday I pushed myself to go out to the garden even though I wasn't feeling great.  Gardening was fine, but walking up the slope back to the house was too much.  Heart rate 156 standing still, and I started having left arm pain that stayed around for a few hours.  Very unsettling.  I was fatigued and had cognitive symptoms after too.  I spoke to my husband on the phone and he thought I'd hung up.  I was there - lying on the bathroom floor unable to make my mouth move to speak.  In the evening I was able to walk back from the garden without bad effects after.

@Elisabeth417, have you tried raising the head of your bed with risers or bricks?  Perhaps that would be a gentler way to fight gravity?

[Elisabeth417]

BRC-So scary about lying on the bathroom floor! And having the arm pain.  I often have chest/arm tightness, numbness and pain.  I once did go to the ER and they did an EKG, chest x-ray, etc. and said I was ok.  I think with me, it's because I don't have enought blood going to my heart for what I'm asking it to do, at least at the moment. Have you had it checked out just to put your mind at ease?  You've been through so much.  But, you're still here!  Sending you good feelings from California.  Where do you live?  It's pretty hot here (in the 80s) and we had to install air conditioning just for me.  I feel so much worse when I get hot.  I have to stay around 70 degrees--not too hot or too cold.  I know all these symptoms are very scary; I feel like I will just die any minute.  Did you report your condition to  your doctor?  Did you say you have a sympathetic doctor?  Was there a reason why you reacted as you did?  Maybe those meds you talked about will help???  I hope so!

I continue to feel the effects of my reconditioning effort, but it's a bit better, although major headaches, dizzy, heart palps, etc.  I honestly feel like I'm going to faint just lying here.  Right now, I'm hardly getting up at all.  In the past, when I got up I got an adrenaline surge that constricted my blood vessels and made me able to stand for longer, but I'm no longer getting that surge and it's almost impossible to stand up for even one minute.  So, I've just decided that I'll try to become better as a flat person.  I have to be very careful, though, in how much effort I expend become I become so exhausted so easily.  But, I do feel that I am severely deconditioned and that is part of the problem, but how on earth do you recondition if you have absolutely no energy?  I've been reading a lot about Chronic Fatigue Syndrome and the lack of oxygen in the blood/body as well as low blood volume.  I just feel like I have absolutely no lifeforce within me.

So, here it's 3:15.  I do start to feel a little bit better starting around 4:00.  I did have a doctor in the past (unfortunately she retired!) that said that it may be because I'm building fluids.  And, by about 11 PM, I can actually do a little more (still mainly in bed, though, but can move around more and exercise a bit without so many symptoms).  It's interesting that you mentioned melatonin.  I had mine checked and it is the exact opposite of how it's supposed to be.  I have practically none at 8 AM (so it's like my body is still asleep if I try to do anything) and at 8 PM, it pops up to almost normal day-time amount, so this is part of the reason I start to feel better at night.  My Circadian Rythm is pretty much 12-hours off, which I've read is pretty typical in Adrenal Fatigue/Chronic Fatigue.  I haven't even gone outside in over a year, so I haven't gotten any sunlight, which I'm sure is adding to my woes.  However, the last time I went out, I got an incredible migraine and a histamine reaction, so . . . I don't push it, but, obviously it is a problem.

I'm so glad you're starting to play the piano!  I can play, but haven't been able to sit there for a long time, but I do really miss it.  It is really soothing, especially if you play pieces that aren't too challenging at first.  Good for you!  It probably keeps your circulation going, too.

I hope you have a wonderful weekend.  As you said, we need to be easy on ourselves.  All this pushing when we really can't do it seems to bring on a backlash.  These days, I'm the tortoise, not the hare--but the tortoise won the race!  Take care, everyone and many blessings to all.

 

[Elisabeth417]

Ugh--just checked the weather report.  Temperatures expected to reach in the 100s this weekend in my area!  In my earlier life, heat never bothered me--I just went along with it, but now I adds greatly to my incapacitation.  As a matter of fact, all weather--one big one is when rain is coming and the barometer drops.  Anyone else?

https://patch.com/california/napavalley/napa-county-under-heat-advisory-weekend-national-weather-service?utm_source=alert-breakingnews&utm_medium=email&utm_term=weather&utm_campaign=alert

[BuffRockChick]

I have upcoming cardiology appointment, I will definitely mention everything!

I am exploring how much heat is an issue for me.  Last year August I had a bad POTS flare and I remember feeling faint in the heat, 90 degrees about.  What I can tell so far is that heat raises my "resting" heart rate.  Resting in quotes because my 24 hour resting is still the same, but just sitting around during the day, my heart rate is often 20 bpm higher than in cooler temperatures.  That leaves me feeeling unwell faster.  45 bpm sitting/laying to 95 bpm standing is tolerable, but 90 bpm increasing to 120 bpm gives me dizziness and presyncope sometimes.  I'm trying to adjust to the temperature, we're in upper 70's and 80's now.  If my heart rate is higher at night, I'll sleep in the guest room and run the window air conditioner a bit before bed.

I have noticed caffeine first thing in the morning reduces symptoms.  It's a vasoconstrictor.  I had caffeine the whole past week and sleeping late in the morning.  My husband's family was in town vacationing and I didn't want to be "drawing attention to myself" with falling, etc.  They don't know what's up yet.

I have noticed more blood pooling in eat and without caffeine.  The veins in my legs/feet are bulging today when I stand and I get irritable.  When I lie down and put my feet up my veins go back to normal and my irritability is gone.  Coincidence?  It was worse earlier today and getting better now in the evening.

I'm going to talk to my cardiologist to see if stimulant medication is appropriate.  When I was on methlypehnidate for ADHD I didn't have POTS symptoms and was on my feet all day.  Then I got a dose increase and had appetite suppression and nausea, lost a ton of weight and had a major POTS flare.  Caffeine helps with my POTS, but not as well and doesn't do much of anything for my ADHD.  I'm also going to ask about guanficine which is supposed to regulate labile blood pressure and is also an ADHD med.  But since my blood pressure tends to be more low than high I don't know if I'm a candidate for taking it.  If stimulants are a "no", then maybe midrodine?

 

[BuffRockChick]

@Elisabeth417, regarding air pressure changes, I found an old thread on this forum with POTSies discussing they felt better in high air pressure, and worse with low air pressure like preceding a cool front. I feel bad before a cool front, and fantastic as the front passes - temperature drops and air pressure rises sharply. You're definitely not alone in feeling worse with weather changes! 

[Elisabeth417]

Yes, I can relate BRC!  I've read also that heat dilates blood vessels and when we stand up the dilated blood vessels in the legs expand and hold even more blood down below and pull it from the top of the body.  This happens during a shower, too.  As for me, I'm exploring whether I actually do have a cerebral spinal fluid (CSF) leak.  So many of my symptoms are not only dysautonomia, but like people talk about with a leak.  I've had an MRI and doctors say no, but this was a lying-down MRI and I've read since that they can't tell unless it's a standing-up MRI.  This could also show a Chiari malformation.  I've had so many tests and everyone says "I'm fine", but I'm obviously  not since I can't stand up and I feel abysmal even lying down!

Regarding caffeine, yes I drink a big cup a day and it does seem to help with my BP.  But, I have digestive problems, too, and it's a problem for my stomach.  Plus, I have a tendency to panic attacks and caffeine makes that worse--but when anxiety is high, I can actually stand up better and I think that it is because it's constricting my blood vessels sending more blood to my head.  Plus, it's giving me more energy--false energy,  but a kick.  Before I get out of bed in the morning, I need to drink 2 glasses of water, 1/2 c coffee and 1/2 muffin, al of which to hydrate me, caffeine me and sugar me.  Obviously, may be bad in the long run, but it's the only thing that can even get me going from my bedroom downstairs to the living room.  Then, sometimes during the day, I need to eat some chocolate-covered espresso beans!  Yes, bad news, I know, but I sometimes can't even sit up without a few.  They do give me a headache, though, so I got some that are white chocolate.  It seems like I'm living on fake energy and I have absolutely no real energy left.

I've read that some people think they have a CSF leak, but it's actually low cerebral pressure because we are low in blood volume.  Sufficient blood volume is needed to create sufficient cerebral spinal fluid.  And, guess what?  Coffee actually creates CSF!  But, it also leaves you dehydrated.  So, drinking water, eating enough salt (which I have to be care of--I really can't eat too much).  Plus, too much water can cause you to be even more dehydrated because it washes salt out of your body,  plus disrupts your electrolytes.  Everything goes around in circles!

I am so glad that you have an appointment with your cardiologist coming up.  And, I pray he can help you and he can suggest some medication that can help.  Sometimes all we need is the diagnosis and the right treatment--very hard to find, but then when it is, it's like a miracle.  All my best with your cardiologist!  It does seem that some medication can help.  I'd like to try some, but don't have a doctor right now.  I have a friend in my neighborhood that was fainting all the time and was referred to Stanford and now takes florinef and midrodine and that really helps her.  She's tried a few types and these two have been the best.  She's no longer fainting at all.  She still can't stand up very long, but she can sit up with no problems and can go places in a wheelchair with her husband.  She even said that the other day, she walked the whole length of Home Depot!  So, there is help for us out there.  Part of the challenge is finding the right people!

And "appearing" well.  I definitely know what you mean about about wanting to appear as normal as possible when someone visits! I do try even around my husband and son, but now my mom and sister are coming soon and I'm actually dreading it.  And, I feel so bad because I do want to see them, but it's very hard on me to act like I feel better than I actually do.  My mom is 82 years old and I don't want her to worry about me.  I should be the one worrying about her and I feel so bad that I could not help her if something happened to her.  I'm very fortunate that my sister feels fine and could step in, but still it weighs on me.  A child should take care of their parents when they get old and I can't.  Makes me sad.

So, have a Happy Father's Day!  I'll be wishing you an improvement tomorrow and for your life all around!  I certainly hope you don't have any more scary experiences like before and that the cardiologist can help!  Many blessings to you and yours!

[BuffRockChick]

I enjoy reading your updates! I hope your recovery from over-exertion continues smoothly.

[Elisabeth417]

Hello Everyone!

Yes, I am still alive!!!  That's the good news (which, of course, IS very good news.)  But, unfortunately, I am not doing well at all and have taken a turn for the worse.  I'm honestly not sure what's wrong with me--dysautonomia, adrenal fatigue, chronic fatigue, deconditioning, mental anguish--it's probably everything.  It seems like no matter what I do--whether I try to get better by moving or stay still by bed rest, I just get worse and worse.  It's obvious that part of the problem is not being able to conteract gravity anymore.  I do suspect that I had a major problem and then I thought that by resting I would get better and the bed rest has just made everything worse.  But, I can't be too upset with myself because in spite of going to a dozen doctors, nobody could diagnose me and tell me what to do to get better, so I just had to go into the resting stage because it made me feel better and I had no help, no diagnosis, no advise, no medications--just doctors telling me I was fine when I wasn't.  But, now I'm so weak that just lifting my pinkie finger exhausts me and I'm shaking all the time.  I hurt so bad from being down so long.  I have so many headaches, I can't think, and my head is caving in all the time, now even when I'm lying down.  I really feel like gravity is pulling me down into my grave because I'm so heavy.  I almost feel as though I'm already underground.  And getting up and trying to counter it is leaving me so exhausted and shaky and feel like I'm going to have a heart attack any minute.  My blood vessels are constricted all the time and I've read that this a sign of low blood volume, but how am I supposed to get more blood volume if I cannot move?  I'm not really sure what's going to happen or if I'm ever going to recover.  Most of the time I feel that I will just die if I try or will die if I don't try.  BUT, I am not going to give up!  I thought you all might be interested in this incredible woman I found on youtube.  She was bedridden for 17 years! and has now recovered.  She has given me new hope.  I hope you all will be as inspired as am I:

https://www.youtube.com/watch?v=n9ZYCkjp4PM

 

[maisie]

Hello Elisabeth, 

I am new to this forum and just stumbled on your posts. Your description of your illness sounds so much like my own, so I was wondering if you still follow this forum and whether you have gotten any better? I know exactly what caused my own illness - severe emotional stress which unfortunately neither I nor my doctor took seriously, so I just kept pressuring myself until I collapsed. Like you, I then thought that rest was what I needed to recover but after 11 months of being bedridden I am now realizing that this has only worsened my situation as I am now also suffering from the effects of deconditioning. Bu it is a mean condition, because when I was in high stress mode literally EVERYTHING would cause more adrenaline rushes, so I felt I had no choice but to stay still. This eventually did lead to more calmness in my body, but mainly because me adrenals got exhausted, I think. I am also close to menopause which I have now learned makes to body more vulnerable to stress. So it is not a mystery to me what happened, but it is a mystery how to revert it and get my life back again. I have also experienced that doctors are less than helpful, telling me my blood tests are fine and that it's all due to depression. Naturally, I am depressed about my situation, but I just know that it is also very physical and not something that a psychiatrist or psychologist can solve. I have already seen several of those with no results and yet all my doctor can suggest it that I try another psychiatrist who can look at my situation 'with fresh eyes'. Anyway, I sincerely hope you are doing better Elisabeth, I just cannot imagine how you go through such a long period of this condition. If you have any advice on what to do about it, I'd of course be very interested and grateful.  

[Elisabeth417]

Dear Maisie,

Hello!  Something told me to look at this website, which I haven't looked at in quite awhile, and now I know why--it was because of you!  I would love to talk to you and hear more of your story, but I have to tell you that, alas, I am still bedridden with major symptoms and, unfortunately, have still not found a doctor, still do not have answers, but DO have more insight into what happened to me.  I've gone back to the beginning to explore more of how it all started because I believe it started a year before I REALLY got sick.  It may have actually been a lifetime of coming.  So, if you are still on this website and would like to talk, I am here.  I'd love to hear more of your story and see if I can help in any way.  I'm looking forward to meeting you and hope you're feeling better today!

P.S.  I was also perimenopausal and had an extreme emotional component when it started, just like you.  Re-reading my posts, I realize that I haven't talked a lot about the beginnings of everything and exactly how it all started, which has definitely led me to the point I'm at now.  Hope to hear from you when you're able.

P.P.S.  BuffRockChick--How are you doing?  Sorry, I pretty much dropped out but, alas I had nothing new or good to report.  Hope you're as well as can be.

Lots of hugs and love to this group!

  

[Ida]

I know this is an old thread, but has anyone considered that they might have "adrenal medullary hyperplasia"? 

Here is a fascinating article about a young man who suffered from it but discovered the cure: 

https://www.cnn.com/2019/07/27/health/doug-lindsay-invented-surgery-trnd/index.html?fbclid=IwAR3tLAtz7d4N7d7VF1r5QXMNFOCV3f7fXkEcqNUxU5zqc2da6sbMUXgUUmw

God bless.