PEM and POTS and My Life

This is a prime example of what happens to me if I have to do things in real life.

I had to go to a tenants meeting on Tuesday morning because we're having a problem with a mentally ill person on our apartment floor. He has a long history of having been institutionalized and a long history of drug abuse, which he has gone back to doing. So we were all asked to go to this meeting and discuss what we had seen and heard and all that because he actually pulled a knife on one of the tenants and had been arrested.

I actually wanted to go to this meeting because it gave me a chance to meet the social worker for our building and to meet the head of the program that helps people to get the low income housing here. It was just a good idea to go. And I had seen and heard things that were helpful to them.

So, I went. I walked over there with the other tenants, it was across the street. Going wasn't too much of a problem. I was okay on the way there and we got to sit down once we got there.

One hour into the meeting, I started to get sick. It was like an energy drain. And I started to feel like I had to lay down. I was getting shaky, too. And I was starting to get the neurological stuff, like the whole lights, sounds, overload thing. It was sensory overload.

The meeting didn't go past the hour too much, so then we walked back here. By the time I got into my apartment, I was really, really physically ill. I had to lay down. And the sensory overload wouldn't let me sleep for awhile. But all I could do was lay there.

My neighbor, who also has POTS, was also very ill just from going. She had to go lay down, too.

After a few hours of sleep, I was up the whole night in pain all over and with severe sensory overload. This morning, Wednesday, I had to go down to the lobby for a food program we get. I almost passed out from the low blood pressure of POTS in front of the entire tenant population down there. It was bad. And now I'm fully crashed with severe PEM and POTS and can't do anything. I can barely make it to the bathroom and back. I'm really, really physically ill. The fatigue is like really being either a ragdoll or a half dead thing. Standing up is almost an instant pass out from the low blood pressure. Salt is not helping. I just have to wait it all out till it gets better, which means I'm stuck unable to do anything until it does. I can't even go down to get my mail or pay my bills yet. I'm hoping to be able to do it tomorrow.

This is what happens to me no matter what the situation is in life. Every time I have to do something, I get sick, physically, severely sick. And this is with things I want to go and do. I'm just plain not well enough. I didn't even last the hour at that meeting. Sometimes, if it's an outting with a friend, I can last an hour and a half, but then I start to feel it. And I'm always sick a few days or more afterward.

Nothing helps this at all. I've had it like this for almost twenty years. The hardest part is that people do not understand. No one understood that I really needed to sit down today. And we hardly have any place to sit in my building. They don't want tenants congregating much, so they keep taking away places for us to sit down. And the few places you can sit are always taken up, usually by people who don't have trouble standing. It's so bad, that I've been looking into getting some kind of portable chair I can take with me so I can sit down when I need to.

This disease has really ruined my life. And I think it's very important to tell these things so that anyone who is trying to learn about CFIDS/ME will get a better picture of what our daily lives are really like. This is not a disease of just being tired. This is a disease that affects every organ system in the body. And a major part of it is the POTS and the PEM. The blood pressure drops make us weak and fatigued. They also cause many of the neurological symptoms because the brain is not getting enough oxygen and blood flow. The blood pressure drops and lack of blood flow cause problems with the heart. I have problems with the left ventricle of my heart from this. There's a huge list of things I have physical problems with from this disease.

So I wanted to post this just to show, this is my life, every time I have to do anything in the real world. This is it. Some days are worse than others. There are days where I wouldn't have been able to have walked across the street to begin with. I was just lucky I was able to make it over there.

The added stress of never knowing how I will be on any given day only makes it a million times worse. I can never make real plans because I don't know how I will be that day. And even if I seem half way okay that day, I pay in spades for anything I do. I come home so sick and in so much pain and it lasts for days and days. It is never, ever worth it to me. My doctor's only answer to me was, well, I can give you narcotics. I'm sorry, but that is not an acceptable answer for this. Narcs will only make me too spaced and too tired to do the few things in life that I have to do to live, like pay my bills. And I don't want to spend the time I have doped up. I was never a druggie, it's just not me. I want to be as alert as I can be. Also, those drugs don't fix this, all they do is make you not care if you live or die. We need real solutions and real answers. I got this from a viral infection almost twenty years ago. It has never gone away. We need real biological medical help.


I really feel for you. I know exactly what you mean and I'm sorry to hear that something so 'simple' caused you so much difficulty.

This all blows! I'm having a particularly bad day today, physically and emotionally. I've not been doing well for the last couple months and today I had an app't with my naturopath. Took a lot to get there, and I perked up while I was there for a bit, but now I'm much worse. My head feels like it's going to explode (pressure). I'm sitting in the dark wearing sunglasses.

I wanted to tell you that you've helped me a lot with your POTS info on Youtube etc. I've questioned if I really had it - I always live in such DENIAL. I've had symptoms for about 20 years now, but didn't think my heart rate (or my heart) was a problem. DUMB, DUMB. I do have it and/or some strange OI stuff. It's starting to make so much more sense to me now.

Getting diagnosed with FM has been one of my biggest downfalls I think. I always knew it didn't 'fit' me 100% but I couldn't convince or relay to doctors what was going on. I don't think they wanted to listen anyway, fatigue happens in FM too after all. Well currently I don't have pain, except for my head (but it's a pressure more than pain). My pain in general is improving (it is no longer constant) but all the other 'illnesses', especially neurologically involved, are getting much much worse.

I can't imagine the amount of damage I've done to myself by not realizing what was really going on, and from listening to doctors and not getting ANY sort of help. Yeah, this blows - big time.

I hope you feel better soon.
Thanks. Yeah, what happens is, docs want to call everything Fibro, it's an easy quick diagnosis to throw out and then blame everything on it. Not everyone has it. But you can have it and have it overlap other things, which I get.

POTS is a nasty thing. And I believe it accounts for a really high percentage of why we are sick. It does alot of things. And while we can take the steps in my vids to make it better or less severe, we can't always control it. It's a drop in blood pressure. Without being able to control the vasopressin hormone, we can't control the symptoms.

All we can do is hope for better treatments and real biomedical help.
I did fall into the FM category when I was diagnosed but I had other things going on. Now the FM is definitely not my primary problem. Things are shifting and changing, not just on a daily basis but overall. I know we are the same age and you are also having hormonal issues/imbalances - I think that is also part of the problem and making this POTS stuff worse. I'm not near menopause yet, and I seriously don't know how I'm gonna make it that long.
I have photos taken for my drivers license taken 5 years apart. Although I am not driving I wanted to keep my license. You have to go in to have the photo taken. For the first photo I walked in but had to sit on the floor as there were no seats. I look sort of normal. Second photo was after bad relapse and I went in a wheelchair. I look like an old scary woman. Its only in rcent years I have learned about POTS. FOr years I had the CFS dx. It makes no sense to anyone who hears that. When I began having seizure-like episodes I did more research and discovered POTS. Hoped to get this confirmed but inspite of severe symptoms on TTT they said my symptoms were unlikely to be involuntary. They tried to get an arterial line in for about 30 minutes - very painful. I did not have symptoms. They tilted me and after 10 minutes I was thrashing and wailing. So I am still left with cfs and no explanation of why I am unable to remain upright,
Sandgroper, this might sound weird and stuff but a major cause of seizures can be a parasitic worm that gets up into the brain. You can get it from undercooked meat. I've seen it happen to people. You might want to go to an infectious disease specialist and get that ruled out. You could also have Lyme.
Carrigon;bt1491 said:
Sandgroper, this might sound weird and stuff but a major cause of seizures can be a parasitic worm that gets up into the brain. You can get it from undercooked meat. I've seen it happen to people. You might want to go to an infectious disease specialist and get that ruled out. You could also have Lyme.
spent 3 weeks in hospital and they did loads of tests but only thing that they found was sleep probs so I still ended up with the same CFS dx
Parasites often don't even show up on tests. Sometimes they do, but they get overlooked.
it seems seizures are linked to the orthostatic probs. that is when I am upright too long. mostly now its tremors as I am careful not to stay upright too long (mostly). would't the tremors and seizures happen in horizontal position if I had parasties rather the ME or cfs with OI?

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