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Have You Had Any Improvement In Symptoms?


friday
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I haven't been here for awhile. And I know this has probably been asked many times before but. I'm looking for a thread of hope. I see a lot of people here have it bad.

And i am wondering have some of you had some improvememnt in your symptoms. I'm not saying cured just improvement.

Also is anyone working and active? At least part time outside the home?

Sue

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this was asked just in the last few days. here's the link to the post, wherein i also posted links to a few of the past discussions: http://dinet.ipbhost.com/index.php?showtopic=6135

hope this helps,

:) melissa

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sorry. i went back & pasted it in.

:) melissa

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I've seen enormous improvement on medication and using my "living strategies"! I spent months lying on the couch, totally worn out, plagued by brain fog, and feeling faint whenever I sat up.

Now I'm out walking at least 1/2 mile each day, taking three on-line courses, and learning Spanish! I can do more housework, drive to the store for a short shopping trip, and almost never get lightheaded! I even went on a 3-day vacation in PA!

It's been a long, slow process, but I'm so excited by the improvement I'm gradually seeing!

Keep your chin up!

Angela

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Hi,

I feel guilty always answering these posts, but I also feel guilty not answering them. I personally believe you have reason to have hope and here's why:

Last June before I was properly diagnosed I couldn't get out of bed before 2 pm everyday. I couldn't take a hot shower or bath without needing three hours to recover. My GERD, other GI issues, and fatigue were unbearable. Going from an A/C car or house into the summer heat even for a few seconds started my heart racing and made me light headed and feeling like I was going to die.

Rolling over in bed at night sent my heart rate from the 50's to over the 160's. I could not stand for any period of time without tachycardia up to the 180's. I had a HUGE pile of things I needed to return to the store that I had accumulated over a peroid of months, but couldn't fathom the idea of standing in line to do it. I had weird shortness of breath at rest and terrible left sided chest pain. I couldn't spend more than 20 minutes in the grocery store without feeling like I was going to die. I could no longer volunteer at my kids' schools and I could never have held down a job. Folding laundry (using my arms) was a nightmare.

I was a runner, but any exercise meant a heartrate pushing 200 from the get go. My heart was pounding all the time, even when my heart rate wasn't fast. The absolute worst were the bouts of resting tachycardia: heart pounding for a few hours resting, and then a sudden jump over 160 that would gradually come down over a period of hours.

It's now 11 months since I was diagnosed and started treatment. I slowly improved over the first 3 months, and then steadily. By 6 months, I would say I was funcitioning pretty normally.

11 months later, here is what I accomplished yesterday: Got up at 6 am to take my kids to morning camp. Took the dog for a haircut. Went grocery shopping. Gardened for almost 2 hours in 95 degree heat (I always stay hydrated and remember not to repeatedly bend at the waist). Picked up my kids, went to lunch with a friend and then to the library. Came home and cleaned my house. Swam laps for 40 minutes. Made dinner, cleaned the kitchen, visited with a friend and went to bed. I woke up this morning at 6 am again, and don't feel exhausted or drained.

There is no way I could have done this (or even 20% of it, last June). I was lucky, for me, finding successful treatment was not a problem. I know for others, it has taken a long time for find the right combination of meds. I do know that if I take my medication late, or forget, I am right back where I started. I also have break-through tachycardia upon strenous activity, and I'll never run again. It has been 11 months since I have had any resting tachycardia. I do make accomodations for heat, inclines, climbing stairs, etc.... I have accepted that I will not ever be the same, or "normal" again, but I'm grateful for what I can do. If I chose to, I could easily manage a full time job. There aren't any "bad days" anymore.

Just like everybody else, I don't have a crystal ball. Maybe this will get worse again, but then again, maybe not. If you are looking for hope, all I can tell you is, from personal experience, I think there is reason to have some.

Best Wishes,

Carolyn

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Carolyn-

That is great how well you are doing it nice to see and hear about improvment. I hope one day I will be able to be like that too. I am so happy for you! :(

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Guest sonotech

It is just soooo important that you DON"T GIVE UP ON HOPE. We are all so different and not one of us has the same exact symptoms or degree of symptoms.

I had to stop working 6 months ago, and that has been very hard on me both mentally and financially. I have NOT gotten better, but what I CAN say is that at least what LITTLE BIT of energy I can manage to dig up can be spent on my family (my husband and 4 kids) and to me it isn't an improvement in my health, but IS an improvement in my lifestyle.

It feel good to know that instead of spending all my time and energy at work (which was literally killing me) I can at least be there for my kids and do some things with them now that I couldn't do before when I was working and then coming straight home to crash.

So, it is really just how you see things, and what is important to you, but you should never give up that hope. Just remember....everyone on this forum is sick, and there are probably many who ARE better so they just don't come to the forum anymore....so you are only seeing ONE side of the story!

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carolyn -

please do NOT feel guilty for sharing your great story! i won't lie and say that i'm not a bit jealous :( ...but that doesn't make me any less happy for you. and for the pure fact that many do "disappear" from the forum when they're doing better, it's SO important and helpful to many that we hear from those who stick around.

congrats,

B) melissa

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  • 3 weeks later...

I'm doing reasonably well. I was able to continue working even while desperately sick, because I have a sit-down type of job that I can do at my own pace. One of my neighbors said yesterday that I look good. He said, "You're pink!" (As opposed to the bluish gray complexion I had when I was really sick.)

Of course, I'm still greatly frustrated by functional limitations. I really can't do gardening, and I have to husband my energy carefully. Which generally means that I ask my husband to do most of the chores.

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I have been doing very well the last week or so. I think my Sectral has finally taken its coarse. I've gotten past the bradycardia. Lately, my pulse doesn't go above 125, and my symptoms are still around, but minimal. I was almost to the point of disability, but now, I'm doing much better. I'm continuing to work as a nurse and being on my feet for a couple hours at a time. I really hope this continues for me. I also hope you find the right treatment for you!

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