Does Anyone Else Here Acclimate To Activity

[lieze]

Okay first time I got up today it was pretty uncomfortable.

Heart was racing, extreme stress and a funny feeling in head.

It was all I could do to force myself through a few tasks.

Each time I get up it gets easier.

My body doesn't respond as wildly.

Same thing last night.

I wanted to try a small outing.

I thought I must be nuts but we went to a park right up the road.

I took my bp montor with.

Felt the need to check it when I got there I wasn't too tachy.

Still felt on edge until I finally got out of the car maybe 30 minutes later.

I knew if I got up and walked around it would ease the feeling I had.

I took my beach chair up on a hill to watch son fish but younger wanted to stay in the car so I could see both son fishing and kids in car from this spot. I was sitting between pine trees.

At first I got my sick thoughts like this is a good place to die etc etc to be buried.

Then the more I sat there the more I relaxed.

I was able to load up in the car and drive home without stress.

I didn't feel the need to check my bp pulse when I got home.

It got me into that positive feedback loop that I seem to so much need to keep me physically and mentally healthy.

As far as I remember I felt okay the rest of the night.

I did jolt and scream myself awake last night just like I did when I was more symptomatic.

I want so much to get back where I was I hate this stuff.

[janiedelite]

My Mayo neurologist suggested doing some walking at least every day. When we went to see him, I was in a wheelchair whenever I was out of the house. So I started walking with my husband every day. At first we just walked to the end of the block and back. By summertime, I was able to walk a couple miles (in the cooler time of day, with my cooling vest).

If I spend the day laying down, I end up with more burning skin pain as well as more musculoskeletal pain. What I've found works for me is a balance of being upright and resting. I still have occasional flares, sometimes they force me into bed for days at a time. However, I have more activity tolerance than I did before starting my walking regimen, with less shortness of breath and lightheadedness as well.

Congratulations for pushing yourself. Just continue to listen to your body and you'll hopefully become aware of what activity level works well for you. Good job!!!

[lieze]

Thank you so much for taking the time to respond to my thread and for sharing your story.

It is working we just did an outing to the beach and I had no problems.

The more I do the better I feel.

I just need to learn how not to go into that red zone.

I didn't really want to but I took a tiny piece of Xanax both days.

I'm just trying to bring that anxiety down to a manageable level so that I don't have a freak out.

[sheba33]

Okay first time I got up today it was pretty uncomfortable.

Heart was racing, extreme stress and a funny feeling in head.

It was all I could do to force myself through a few tasks.

Each time I get up it gets easier.

My body doesn't respond as wildly.

Same thing last night.

I wanted to try a small outing.

I thought I must be nuts but we went to a park right up the road.

I took my bp montor with.

Felt the need to check it when I got there I wasn't too tachy.

Still felt on edge until I finally got out of the car maybe 30 minutes later.

I knew if I got up and walked around it would ease the feeling I had.

I took my beach chair up on a hill to watch son fish but younger wanted to stay in the car so I could see both son fishing and kids in car from this spot. I was sitting between pine trees.

At first I got my sick thoughts like this is a good place to die etc etc to be buried.

Then the more I sat there the more I relaxed.

I was able to load up in the car and drive home without stress.

I didn't feel the need to check my bp pulse when I got home.

It got me into that positive feedback loop that I seem to so much need to keep me physically and mentally healthy.

As far as I remember I felt okay the rest of the night.

I did jolt and scream myself awake last night just like I did when I was more symptomatic.

I want so much to get back where I was I hate this stuff.

I have these same expiriences

[nmorgen]

My body seems to adjust to activity. I went from having to sit in the shower to walking 2-3 miles. Even when I feel bad I push myself and eventually I do feel better.

As far as the panic/fear it took me months to feel safe enough to actually do anything. I carried my blood pressure cuff everywhere. We moved to a foreign country and it has taken me several months to adjust to being alone. My mother was always there before and after diagnosis. I had to keep telling myself it's just POTS your not dying. If you need something at first to help you relax then definitely use it. I think it's the horrors we experience before diagnosis, especially the ER visits when we think we are dying that cause this fear. I no longer carry my blood pressure cuff everywhere. You'll eventually be able to tell when you are having a problem and need medication. I always carry my clonidine and water.

I wish you the best of luck. The fear is definitely the hardest to beat for me. I still haven't made it to the point where I can do a lot on my own. I wait till my DH is around just in case. Eventually I hope to move past this, as nothing really bad has happened when I push myself.

[lieze]

I guess for me this anxiety has basically been left untreated.

I started experiencing it shortly after I started having POTS symptoms 12/08.

I've done fairly well but I guess it's just an unresolved issue and is peaking right now.

I hope to get something to help soon so I can get back on the right track.

[nmorgen]

I guess for me this anxiety has basically been left untreated.

I started experiencing it shortly after I started having POTS symptoms 12/08.

I've done fairly well but I guess it's just an unresolved issue and is peaking right now.

I hope to get something to help soon so I can get back on the right track.

Mine definitely started when the POTS got bad. I was put on a lot of different meds to see if anything helped, and I got really bad. If you can get help that's great. I live in Switzerland and it's tough for me to find any doctor. My cardiologist in the US prescribed enough clonidine to last me 2 years,lol. That has been another source of anxiety for me. I've just been praying and talking myself into getting over these fears.

Good luck to you and if you ever need to talk just let me know.

[lieze]

When I first "got" POTS or was having POTS symptoms and I guess in the beginning for me that was chest pain that lasted about a month that went up into the left side of my neck and then the tachycardia began. I had gone to a nurse therapist that told me this was anxiety-well I didn't believe her. I kept looking for answers. She started me on 25 mg of zoloft and it just looped me right out of my mind. I would go to bed feeling like I was going to die in my sleep. I was only on it maybe two weeks? Had horrible gi effects from it and it wasn't stopping the episodes in fact my SVT's started at the same time I started the zoloft. I was supposed to increase the Zoloft and then I broke out in a rash and had flu symptoms. I just think the dosage was too high for me and that I'm ready to try again now. I have Xanax that I use as needed but I had rarely used that and my anxiety had subsided for a while.

nmorgan I have a friend online that I talk to that lived in Switzerland for years. She said you are near lake Geneva and that her son lives close to there.

I'll ask her about what it's like to see a doc there and about anxiety meds for you? How that would work. She's pretty knowledgeable.

[nmorgen]

When I first "got" POTS or was having POTS symptoms and I guess in the beginning for me that was chest pain that lasted about a month that went up into the left side of my neck and then the tachycardia began. I had gone to a nurse therapist that told me this was anxiety-well I didn't believe her. I kept looking for answers. She started me on 25 mg of zoloft and it just looped me right out of my mind. I would go to bed feeling like I was going to die in my sleep. I was only on it maybe two weeks? Had horrible gi effects from it and it wasn't stopping the episodes in fact my SVT's started at the same time I started the zoloft. I was supposed to increase the Zoloft and then I broke out in a rash and had flu symptoms. I just think the dosage was too high for me and that I'm ready to try again now. I have Xanax that I use as needed but I had rarely used that and my anxiety had subsided for a while.

nmorgan I have a friend online that I talk to that lived in Switzerland for years. She said you are near lake Geneva and that her son lives close to there.

I'll ask her about what it's like to see a doc there and about anxiety meds for you? How that would work. She's pretty knowledgeable.

Hi Lieze,

Yes, I live near the lake. We are in a small town about 18 miles North of Geneva. Thanks so much for trying to get information for me. I really appreciate that.

I have tried the Xanax and it did seem to stop the panic feeling. I too had those feelings of dying in my sleep. I would stay awake until I could no longer keep my eyes open. I was literally terrified of going to sleep. My first real sign of POTS had me in the ER, but they thought I had a blood clot. A few weeks later my husband woke me up because my heart was racing(140 bpm). I have the hyperadrenergic and I have a lot of my symptoms laying down, which made me think I didn't have POTS at all at first. I can now tell the difference between my POTS hyper weird brain fog tachi self and my true anxiety/fear. It is still terrible no matter which one I'm having.

[lieze]

Yeah it is very uncomfortable.

I feel pretty much as calm as a cucumber today but I know better than to try to load the 4 kids up in the car and go anywhere I will most certainly experience panic and I will get that sensation that my throat is closing up on me.

I have been told I probably have the hyperadrenergic form of POTS too.

Well yes-do you speak French?-my friend biscuit does.

I'm sure she can help you to find resources if you end up needing them for your POTS.

Hopefully we'll just be okay and won't have to worry about it.

[nmorgen]

Yeah it is very uncomfortable.

I feel pretty much as calm as a cucumber today but I know better than to try to load the 4 kids up in the car and go anywhere I will most certainly experience panic and I will get that sensation that my throat is closing up on me.

I have been told I probably have the hyperadrenergic form of POTS too.

Well yes-do you speak French?-my friend biscuit does.

I'm sure she can help you to find resources if you end up needing them for your POTS.

Hopefully we'll just be okay and won't have to worry about it.

Thats good that you had a good day today. Glad to hear that. I had an okay day, but it was really hot and our new air conditioner doesn't work very well grrrr.

I get the whole throat closing up on me, and I feel like my face is burning. My face usually will get really red and rashy looking. I have wondered if I might have the mast cell or just really bad allergies. A lot of times I also feel like I'm suffocating. When that happens I now that my pulse pressure is really low and its time to take medicine and lie down.

With my POTS my blood pressure doesn't drop. If it does its just the systolic, but my diastolic increases. My pulse pressure narrows from 15-20.

I don't speak much french, which is my problem finding a doctor.

It's been over a year since I've seen a cardiologist and 1 1/2 since I've seen a pulmonary doctor. I just need to find good ones that speaks English.

[Dizzysillyak]

Do you get post exertional malaise ? Meaning if you've been active for "x" amount of time one day, the next day and for up to 4 days, your body will feel like you've been run over by a bus ... This is what happens to me and is considered a symptom of CFS.

If I rest up for 3 - 4 days, the next day I'm out running errands, I'll feel a little tired but I can stand up ok. If I push myself and try to run errands for a couple of days in a row, my body feels heavy and my brain just won't work ... no amount of caffeine and no supplement I've tried yet has fixed this. Eventually if I continue to push myself, I won't be able to stand up without feeling like I HAVE to lay down, much less make it out of the house ...

Pacific Labs has a test for this .. if you need the link I can get it for you ... or probably googling CFS Pacific labs test will get it ...

BTW. congrats on getting out ...

[lieze]

I can't say that I necessarily have that.

It seems the more I do the better I feel but I do reach my limit I think where I just get tired and I've done enough for one day.

I seem to bounce back fairly well so long as I get good sleep.

[Dizzysillyak]

I can't say that I necessarily have that.

It seems the more I do the better I feel but I do reach my limit I think where I just get tired and I've done enough for one day.

I seem to bounce back fairly well so long as I get good sleep.

That's good to hear ... Have you been tested for food intolerances, gut bacteria or nutritional deficiecies ? This reminds me of how I felt before I developed celiac disease and was just gluten intolerant. I noticed that you were taking Advil. NSAIDS are known to cause gut damage so it's best to avoid those. My EGD actually stated that the damage to my gut was either from celiac disease or the use of NSAIDS ...

Also, are you still anemic ? This is very common in celiacs ... not sure how else this can happen though .. It will happen with female problems of course, but I'm sure you'd know if that was happening. Is that B12 or iron anemia ? both are common in celiacs though ...

FWIW ... If you're not taking probiotics that may help you right away ... I'm using Country Life dairy free right now and it appears to be helping. Helios kefir worked great for me for awhile too though ... Plain organic yogurts are ok too ...

I can't imagine going through this with 4 kids ...