Bedridden, What Next?

[sleepy_lady]

Hi everyone, I'm new, but not new to these physical sensations. They've caused me quite a deal of anxiety because I don't have a 100% diagnosis nor has my heart been thoroughly checked. I've been to the ER 4 times in the past 3 months, they don't seem too concerned with my heart, but did seem completely shocked when they saw how my heart rate skyrocketed as I stood, so the doctor suggested I may have POTS. The symptoms mostly fit, and here I am!

Now, I can quickly shuffle my way to the bathroom with my back hunched and do pretty okay, and I can sneak foods from the fridge pretty quickly, but I am by no means mobile.

My exercising right now goes like:

Hold a 15 pound weight and do sit-ups to strengthen my abdomen, do 5-15 knee bends, do bicycle kicks while laying, and just kinda flail around while sitting up lol

These all work me pretty good, but is there anything else I can be doing? I really want to be at least semi-mobile up here soon, I'm very anxious to get my life back.

Tips? Advice on how to get a cardiology appointment with no money or insurance?

[looneymom]

Welcome aboard and sorry to hear about being bedbound. That's no fun. I don't know what state you live in but there are state agencies that should be able to help you get medical care. Not sure but I think the Department of Human Services is one of those agencies.

It sounds like you need to gain some core strength. My son was bedbound for about 4 months. He would sit up for a minute everyday on a bench and then increase it a minute every week. To keep him going and distracted, he would watch tv, play on playstation, or listen to music if he could tolerate it. It was a slow haul but my son can sit up in a kitchen chair for about 20 minutes before it becomes unbearable. Crawling is also a good way to strengthen core muscles. Keep doing as much exercise as you can tolerate but go slow and don't increase it everyday. Keep yourself hydrated and eat salty foods.

[lejones1]

I think you need to find some way to get a diagnosis (though that's obviously easier said than done) and that's not something you're going to get through the ER. It's hard to know what to recommend without knowing more of your background, but if you do have POTS the likelihood that you're spontaneously get well through home treatment any time soon is pretty slim. And there are a number of other diseases with similar symptoms that would need to be evaluated by a doctor.

Some possible suggestions for free/cheaper healthcare: find a free clinic for people without health insurance in your area. A quick Google search should help you find one. I believe those clinics mainly provide primary care, but they're probably also familiar with referring patients to specialists and may be able to give you advice. Some doctors will negotiate lower fees for patients without health insurance.

Another possibility: if you are low income and out of work (which I'm assuming if you're bedridden) it may be possible for you to get very cheap health insurance. I don't know the details of this, but maybe someone else can provide more information.

Basically: I think your number one priority should be finding a way to a diagnosis. We can try to give you tips on self-management but they can only go so far and honestly it may be a bit dangerous to do without you actually having a diagnosis/knowing exactly what's wrong. Could you also give more of a backstory on your symptoms?

[sleepy_lady]

Well, my symptoms began noticeably last year when I got my first job as a breakfast girl at a hotel. It was a five hour shift and I frequently had to just stand and watch the people to ensure no food was running low. When I'd be standing there, I would eventually begin to feel a "sucking" feeling in my chest and an extremely strong emotional urge to lay down, and as soon as I would lay down in the back storage area, all of my symptoms would slow down.

During this time, I would also experience the same strange chest/abdomen feelings while riding home in the car, felt as if I couldn't breathe correctly and only laying relieved, again.

Then I began experiencing an unrelated health issue (that has now resolved itself) and it cost me my job, and eventually threw my potential POTS symptoms into overload.

It mainly all began when I realized that my standing pulse was consistently in the 100s, I thought it was normal. Then I became worse and I became frightened by the dizzy feelings and high pulse, so I laid in bed more out of fear and it's just been like that since.

I live in Bon Secour, Alabama and have applied for Medicaid since losing my income, but they still denied me. I really don't know where to go from here because I'm young and very inexperienced with life because I was home schooled.

[sleepy_lady]

Oh and my current symptoms are (if it helps):

Feeling like the room is spinning even while laying

Feeling like there is nothing in my body, and like my limbs are hard to control/heavy

Really weak pulse with weakness while laying/relaxing

Bounding pulse that is sometimes only heavy and not fast while quickly walking to the bathroom

Feeling like my consciousness is half here, very mentally checked out/strange

A weird feeling in my head when I sit up

Very slow and weak breathing when I'm relaxed

I'm just consistently scared that this is something like anemia (even though they did at least one blood test during my ER trips) or heart failure or something, my anxiety is thru the roof with this stuff!

[Clb75]

There is a clinic in Mobile called Victory health that sees people with low income or no insurance, you can google them and see if you meet their qualifications to be seen. Getting stuck with a large ER bill is no fun, so seeing a specialist or even a primary care may be worth it. Getting a proper diagnosis is so important, I know it's hard without insurance, but if it is POTS I agree it is not likely to get better on its own. Good luck!

[xRobin]

Hi sleepy_lady. A tilt table test is the gold standard for POTS but I was diagnosed with a basic standing test in my primary care physicians office. My spike on pulse on standing was so obvious he didn't feel a tilt test was necessary. It's not the normal way that people get a diagnosis but it's definitely more affordable in your case.

Did they give you an EKG in the ER? While it's possible for someone your age to have heart failure, it's rare, and a normal EKG would make that unlikely. But, you definitely should have a more thorough exam. If you can afford a primary care visit they can do a lot to screen you for things you might be worried about and help with diagnosis.

I'm sorry you got turned down for Medicaid. Another avenue for that is SSI, a supplemental program for people on social security disability. It's difficult to get but if you can't work at all it might be worth trying for, you would probably need some legal help. Typically they do disability cases with no money upfront but take a cut when you get an award.

If you do have POTS a lot of the treatments can be inexpensive, simply extra fluids and salt, or exercise. My "recumbent bike" is simply a set of peddles like this set out on my bed! You can get generics for a lot of the drugs such as beta blockers, fludrocortisone is not expensive, and I think midodrine has generic.

[corina]

Hi sleepy_lady, welcome to the forum!

[IceLizard]

Hi sleepy_lady and welcome,

Sorry you are bedbound right now. I was mostly bedbound for over 6 months at age 19. I was able to (slowly) work myself out of that state with exercises, diet, and medication. It is important that you consume enough protein so you can build your muscles back up.

Below is a link to one of my favorite resources for exercising while having POTS. It starts with exercises you can do in bed while bed bound with POTS and works its way up. I hope you feel better! Slow and steady works best for progress with POTS.

http://potsgrrl.blogspot.com/2012/01/exercise-for-potsies.html

I would also talk with the hospital billing people about your situation. They have staff that can help you figure out what to do about being denied Medicaid. When you call just tell them you are looking to talk to someone about Medicaid. They may also have forgiveness programs for the bills you incurred while you were in the ER.