Have You Gone From Housebound To Some Life?

[andybonse]

Hi,

Literally my life has changed dramatically over a year since my dysautonomia got worse.

I am now switching between laying down, sitting all day in my room on my PC/TV etc.

I literally feel terrible all the time, some nights ill feel a bit better. Blood pressure is like 115/51 sometimes laid down in the morning and throughout the day gets a bit more OK, but its usually 120/60-66 so my diastolic seems to be the issue,

I've tried Midodrine, made me feel worse.

On florinef .1mg, cant go higher as 40meq potassium is keeping it at 3.6

Dont want to try Mestinon since resting hr can be 50 and mestinon can lower it

beta blockers, no need HR doesnt go very high and not the main issue, plus low diastolic bp

exercising 25mins every other day

There has to be a way to feel better and be able to do more, has anyone been in this situation and it changed?

I have EDS hypermoblilty, but am not really that bendy and no joint pain it really doesnt effect me im fortunate, but its the rubbish dysautonomia that came with it.

I just cant see a way through this now, im 22 is this my life, I dont see the point :/

Spoke to my doctor last week asked me to retry midodrine, I did and same result so need to pay again to speak to him.

I have a new girlfriend for over a month now, she understands and just likes being with me not bothered about going out doing stuff, but still I want to be able to with her and have a family etc, pretty much ruined it all!!!!

[Katybug]

I was, for all intents and purposes, housebound for about 2 years. My symptoms started in 2007, and I worked until I thought I was about dead in late 2010. That's when I became housebound. It lasted for about 2 years and I have gradually been able to start doing some things. I am no where near as active as I used to be but I have figured out what I can do and I do the best I can each day.

I know its hard. I think that dropping my expectations of what "normal" is and just being ok with myself as is was the hardest hurdle to jump. Once I gained a new self-acceptance, I had a lot less stress and I think that helped my recovery. I am still trying to find new ways to recover. I actually feel lucky the neurosurgeon doing my neck surgery in June has me going to physical therapy because it is a new test of my limits and hopefully a way to get back to exercising. My PT is awesome and carefully monitors if I'm having pain and also my bp and hr. I, too, have EDS hypermobility type and mcas and chronic migraine so it's hard to juggle not setting off something but we are finding ways to make it work.

[Jan]

You have pretty normal BP and a rather low HR. I have POTS so I am not sure what worked for me will work for you.

I was bed bound for almost two years. I didn't push myself because it made me feel worse. Then a doc at the Mayo said I had to do the opposite of what I was doing, and retrain my body to be upright. Do the things I was avoiding, like walking. They also stressed building up leg muscles.

What worked for me was I bought a recumbent bike, swam, and got a PT to to give me a bunch of leg exercises I could do at home lying on my back.

My advice, don't lie down once you get up for the day. Push yourself to walk and move around rather than sitting.

Progress for me was super slow so it was hard to see and discouraging.

Keep a journal of what you did that day. Then in 6 months you can look back and see progress.

Good luck and don't give up. I know that is easier said than done.

[Chaos]

What kind of symptoms are making you stay down all day? As Jan said, your BP and HR are definitely looking good but as we all know that doesn't necessarily correlate with how you feel.

[Raisin]

Don't give up hope. I was housebound and mainly bed bound for about a year or more but now I am getting out and about with limitations. I have good days and bad days as many have discussed. I remember reading on here also that the folks who are really really better are probably not checking in on the forum so much. I have times when I think it's not worth the struggle but I now know that the "low" feelings, for me, are transient and I need to hannnnnnggggg in there. You are not alone. Everyone here understands. Keep on rocking' Andybonse! We will all get through this together!

[Bigskyfam]

Bed bound to housebound to work on some days. I think what helped me besides my kids was exercise recumbent bike in cardio rehab. I have a bike at the house now. The first time I got on it was for 5 min and my heart rate went to 160. I had a buddy who took me to gym for cardiac rehab that helped on the days that I said I can't.im not on meds just a few supplements. I don't feel invincible. I am worried that I can slip back at any moment for any reason. My bed being lifted help tremendously. Headaches are only sporadic as opposed to daily and deliberating. V8, gluten free for most part helped with gi sx and fogginess. I still get surges and I have to stop what I'm doing and go rest.gotta go. Dizzy.Post more later.

[gjensen]

Right now, I am going the wrong way.

[kitt]

Hi Andy, I'm reading your story and hoping you can find your way onward and upward..

Physical therapy if you have good insurance is an excellent option, and if not would you consider buying a recumbent bike?...Very inexpensive on Craigs List.

You can give yourself reasonable goals for exercise. X number of minutes X times a day on the bike, and increasing duration each week...Maybe a journal of your exercise and weekly goals.

Short walks, and at the very least and when you feel your worst, (suggested to me by an exercise physiatrist at Mayo MN)...Get up and change posture in your home often. This was suggested to me instead of an exercise program at the time because my heart stopped beating for 7.5 seconds on a TTT, (So Mayo did not recommend exercise at that time.) But the doctor suggested changing posture often and walking around inside our home for a few minutes.

Since then I've progressed to my light workout with a trainer once a week and while at Golds Gym I spend 10 to 20 minutes on a recumbent bike. I also get on the treadmill and use it to stretch. Hard to explain but a treadmill can go very slow and by allowing one foot to stay in place, it's a good stretch.

You can't control disease or syndromes of illnesses that affect you, but you can control how you choose to respond/react. Being proactive is a healthy response.

I wish you well on this and with the encouragement of a supportive girlfriend I'm betting you can make a significant improvement. Sometimes it's hard to start something new but if you choose to I hope you'll see good progress quickly.

Best,

K

[Goschi]

Right now, I am going the wrong way.

Me too...

[LastUnicornLady]

Sadly, I too am going the wrong way. I've been "pushing myself through" for a year now, and I just seem to keep getting worse with every day that passes. Be very, very careful about pushing yourself to do more than your body can handle. I know of several POTSies who have ended up worse off because of that mindset. I believe that Jackie M on here can tell you her story in which pushing herself through her illness ended up forcing her housebound. I'm not saying to give up, stop exercising, or anything extreme like that. But PLEASE- be cautious. Listen to the signals your body is telling you. Work to get better, but don't OVER work yourself to where you're even worse off than before.

Gentle hugs!

[BeforeTheMorning]

I had worked up to being able to do a lot more than before, but then I stupidly overdid it a couple of weeks ago and I've been way down again since. I'm hoping to work my way slowly back up again.

[looneymom]

Hi Andy,

If you can do some exercise everyday or other day, I would encourage you to continue to do that. Do listen to your body and don't over do it. Just from what I have read, without any underlying causes POTS will usually respond to supporting medications and exercise.

Could you be having other symtoms that are affecting your ans? Like blood sugar, headache, gut, allergies, or other neurological symptoms. My son has an immune system problem that has caused his POTS. However, our doctor did not start looking at other things until my son had been on POTS medications for over a year.

Do you feel bad after eating certain foods or seem to have more of your symptoms after you have ate certain things. The one thing you can change is diet. I'm sure you have heard of gluten free and gluten can cause problems with ans. I'm getting ready to do this with my son simply because it will help boost his immune system and maybe help with some of his neurological symptoms. However, blood sugar problems can also cause problems with the ans. So I would encourage you to talk to your doctor about specific symptoms that might becausing your ans symptoms. Have you been checked for vitamin and micronutrient defiencies? This can be like looking for a needle in haystack. Diet is something you can control, just be sure to keep a journal. An allergist can check for food allergies and there is a new blood test to check for tissue sensitivity to gluten.

[writerlymom]

Hi Andy- It can be phenomenally discouraging at times, and it is a tremendous test of patience. As someone else said, people who get better tend to not be on the forum much. I'm doing a lot better than when I became ill more than a year ago and haven't been on here in several weeks, I just check in now and then. My doctor told me emphatically that the rule is improvement. I'm not sure what's missing in your puzzle- unfortunately with POTS I think there are more unknowns than knowns- but you could consider a phone consult with Dr. Blitshteyn in Buffalo or find a holistic doc in your area-there is one near me who will run lots of tests to check for gut, adrenal, etc., problems that other doctors won't do. The activity piece is SO tricky because I think POTS wants to trick us into doing nothing. It's a real struggle to exercise, especially when you're practically bedridden, but it pays off in the long run. Last year around this time I struggled to just do little walks around the room. Now I walk about three quarters of a mile alternating 2 to 3 mph at 1 minute intervals- not a sprinter or marathoner for sure but progress. Also do leg machines at the gym, just light weights. Not sure what kind of exercise you're doing but I think it's important to be gradual. Anyhow- try not to let POTS play its mental games on you. Sounds like you have a terrific girlfriend. Focus as much as possible on the positives. You'll be OK.

[MomtoGiuliana]

I went from bed bound to house bound to normal activity (minus strenuous activity)--it took about a year or a little more It is possible. My diagnosis was/is POTS. As others have said your bp and hr sound pretty normal--although you did not say how it changes on standing, typically. My hr and bp would look pretty normal lying or sitting when I was sick but hr would go way up and bp either would go way up or sink on standing. What helped me was SSRI + beta blocker + slowly stepped up exercise (I had become very deconditioned). Maybe you and your dr have not found the best combination of meds yet.

[Dustbunni]

I was bed and house bound for years with dysautonomia and a host of other crazy symptoms (possible mitochondrial disorder). I was in a steady decline and there was no light at the end of the tunnel. Then my geneticist mentioned IV saline and about 6 months ago I had a chest port put in. Now I get a liter of intravenous saline every day. Between the saline and 0.1mg Florinef I'm up and about with zero to minimal orthostatic symptoms - so long as I don't push too far past my limits. In addition, many of my other symptoms have improved as well. Slowly I'm reconditioning myself to be up and doing things for longer and longer periods. Yesterday I spent about 3 hours painting my living room. I tried for 3 years to paint it before the IV saline and the prep work alone would knock me out for weeks. Today I'm noticeably weaker and feel a bit ill, but I still spent about 2 hours in the kitchen cooking - something else I never could do before the IV saline.

I see many people recommending a recumbent bike. They're awesome. However, I tried and tried to build strength and endurance with mine and it never worked for me. It just required more energy than I could produce. Then I tried qigong (think of it as a graceful version of yoga) and began seeing improvement in days. There are a ton of theories as to why qigong can help with medical problems and I have no idea what the truth is. Nor does it matter to me. It worked. Period. Within a week my knee stopped buckling on me every couple steps and I decided to keep going and saw continuous improvements for months. Now I seem to have plateaued, but I'm going to learn a more difficult form soon to try and push myself further.

Don't give up hope and keep trying new things. It's all about discovering what works for you. Sooner or later you may just hit on something that makes you feel better.

[lejones1]

I was mostly housebound for my first year with POTS, aside from 2 very short-lived attempts to go back to work. Following the second attempt I ended up bed bound for 4 months. And then boom, one day I started getting better. And better and better. After a few months I went back to work and until 6 weeks ago, when I got a nasty sinus infection that knocked me out, I was working almost full-time (this was about 8 months after being bedbound).

I'm really medication intolerant so this was without any drugs. I honestly just...started getting better (I'm 24 and have what is probably post-viral POTS, for reference). Above some people mention the controversy over exercise vs not overdoing it, and I think it's a hard balance to find. I definitely overdid it early on and probably hurt myself trying to do more and exercise more than I was capable of. I finally made a guideline for myself, to find a baseline - I wanted to feel the same when I woke up each morning. Fatigue, lightheadness etc immediately after an activity were fine, but if my activity level meant I woke up the next day feeling worse, it was too much and I had to cut back. On the other hand, I also made sure that I when I was feeling pretty good, I was always testing my limits - walking a little longer, working a little later, and seeing how much I could take. I guess this is pacing, and I think it's probably helped my recovery more than anything else.

And don't give up!!! I'm about your age and this time last year I was so depressed - I didn't see how I would possibly improve, especially without medication, and was terrified that I was doomed to a home bound life. But I did - A LOT. Keep in mind that the majority of POTS patients do improve over time - maybe not as quickly or as easily as we would like, but it usually happens. In the mean time, try to stay patient and positive (easier said than done, I know). Good luck