Intro-new To Group And Hoping Someone Out There Can Relate And Offer Encouragment

[Canadagirl]

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> Hi everyone. My name is Heather and I live in Canada. I have recently been diagnosed with Autonomic Dysfunction because of the severity of my symptoms, but I may have had it in a milder form for about 15 years, as I had been diagnosed with Chronic Fatigue Syndrome.

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> As an intro to the group, I would briefly like to describe my symptoms and ask if I sound like anyone else here. I must be semi-reclined all the time in bed or a recliner due to overwhelming fatigue (I walk a couple of minutes at a time as often as possible, for a total of 20 to 30 minutes a day). Otherwise, I must be semi-reclined and wear support hose.

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> Here are my current symptoms--I am basically in bed all day except for the walks that I force myself to go on every hour or two for a couple of minutes. I must be semi-reclined otherwise and have extreme fatigue--even a short conversation leaves me depleted (I feel just awful in the morning until I have had around 6 glasses of salt water to drink). Better after dinner but still bedridden.

> * POTS

> * OI

> * Severe body temperature fluctuation (from the 95's to the 99's in a matter of minutes, sometimes seconds)

> * Walking gives me chills (my temperature goes from 99 to the low 97's or 96's in 3 minutes)

> * My temperature drops when I sleep and I wake up in a cold sweat on the back of my head and neck (my temp is in the 95's or 96's); I also feel my heart pounds harder when I sleep

> * I have low appetite and undigested food in my stools

> * I now get over-stimulated very easily--even having a perfect temperature shower while seated feels be ovestimulating for me

> * I am very dry in the mouth and must eat very wet foods to get any food down (I only feel like a few, bland foods)

> * Any physical or mental exertion depletes me and makes me feel like my brain isn't getting enough fuel

> * I seem to be hypovolemic based on how much better I feel after an IV (but still not well enough to do anything significant--just feel better and have a little more energy

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> These more severe symptoms (above) started on November 20th; the sitting intolerance and greater weakness (being bedridden) started December 29th when I got my period.

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> I am currently doing the following to treat my symptoms:

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> Wearing compression hose

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> Elevated head of bed

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> Walking every hour or two as tolerated

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> Increased salt & fluid intake

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> IV (once per week) ? responded very well to these

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> Oxygen (15 min. 2x a day)

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> Propranolol - 5mg every 6 hrs. (started taking Nov. 20th, 2006)

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> Does anyone else have similar symptoms? I really want to connect with someone who can relate. Even more important, has anyone ever been so severely fatigued and affected by AD and then improved their quality of life?

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> I look forward to hearing from anyone who would like to relate to what I am going through. I'm feeling very isolated right now and particularly desperate for some encouraging news from someone who has been where I am and has made any type of improvement. (This post has taken me days to put together).

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> Thanks!

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> Heather

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[AJVDK]

Hello Heather,

Welcome! I wanted to let you know understand where you are. I could relate to about everything you said. I also use oxygen as needed, and due IV treatment at home every other day. IV treatment is the best treatment I have found so far. The done side of it is that it doesn?t last very long, and the risk of infection.

When I first found out I had POTS, and didn?t know anything about it, I felt so alone, as now one could relate. But the good news is everyone here at Dinet can relate. This is a great place to find support.

Also there is a meet other program here too, you might find it helpful to be able to talk on the phone, or even meet other close to you. http://dinet.org/join.php.

One other thing that helped me a lot when I first got sick was to read about others personal stories, you can find those here: http://dinet.org/personal_stories.htm

Again Welcome!

[morgan617]

Welcome heather! You will find lots of people with the variety of symptoms you have. Many will have some, many will some and then some weird other ones you don't have and etc. Hopefully you will find support and some answers here.

As for improvement, it varies...causes and how long you've had it, etc are factors in how well you recover. Some get better, some stay the same, some get worse, and some just wax and wane.

As time goes by, you will start to sort out how things go for you, then of course, it will probably change!

Good luck sweetie and again welcome....morgan

[MNsue]

Welcome Heather.

I was also diagnosed with CFS 16 years ago after Mono. I had a flare up last December and was diagnosed with POTS a year ago this month. I have many of the same symptoms. The night time tachy is pretty persistant for me, however I think florinif has helped a bit with this.

I hope you can find some help with your symptoms. I have found it to be very up and down over the last year.

Take care,

Rhonda

[Guest tearose]

Hi and welcome.

You are soon to discover that there are many people with similar problems here and keep asking questions and looking for answers!

You are not alone.

best regards, tearose

[Canadagirl]

Welcome Heather.

I was also diagnosed with CFS 16 years ago after Mono. I had a flare up last December and was diagnosed with POTS a year ago this month. I have many of the same symptoms. The night time tachy is pretty persistant for me, however I think florinif has helped a bit with this.

I hope you can find some help with your symptoms. I have found it to be very up and down over the last year.

Take care,

Rhonda

Thanks to everyone for the replies!

Rhonda, how did florinef help you? Were you hypovolemic?

[Gena]

Hi and welcome to the board.. it sounds like you are going through a rough phase of this crazy condition right now. I hope it will get better for you soon. Many people have been bed ridden and are now able to function much much better, so don't lose hope!

I was wondering if you've ever had your adrenals tested or your thyroid? The endocrine system and its various glands and hormones greatly affect our autonomic systems. Also, just curious if maybe the propanolol could be contributing to your weakness? If you take less of it, do you get severe tachycardia? Beta blockers can certainly cause weakness and fatigue...but so can dysautonomia! Just a thought.

Florinef is often one of the first drugs doctors try to help raise blood volume and blood pressure, so it is certainly worth discussing with your doctor. Procrit is also another drug that has had success in raising blood volume and pressure.

You'll find a wealth of info here. Glad you found us.

Hugs,

Gena

[Rachel]

Hi Heather,

Welcome to the forum! I think you will find this to be a very caring and understanding place. As you continue to read different posts you will find people with symptoms very similar to yours. We all struggle with a lot of the same things.

I'm so sorry your health is so bad right now. I hope that things can get better for you. It is good that you get up to walk around occasionally. It might not seem like it is helping, but it is probably helping more than you realize. You could also try the Yaz exercises. You can even do some of these while in bed! Here's the link to the exercises: http://www.21cent.net/chiari/yaz.htm

My health has gotten better, worse, better, worse over the years. At my worst I was stuck in bed all day. I could barely crawl to the bathroom and back to bed. I couldn't get to the kitchen to get food, so unless someone was around to help me I was stuck in bed hungry all day. So I do know what it is like to be almost completely bedridden.

I have gotten a bit better since then. I can usually walk around the house some by myself during the day. And I can go out in a wheelchair for short periods. I guess that isn't much of an improvement in quality of life. But it is some. And every little bit counts! I'm still going to doctors and trying to figure out what can help me.

It sounds like you are doing some good treatments. Do you have a good doctor there in Canada?

Again, welcome to the forum, Heather. We're glad to have you here. I hope you can find some help, friends, and answers here!

Hugs,

Rachel

[goldicedance]

Welcome, Heather. You now know you have many friends here. Your symptoms sound quite familiar. We have all journeyed many ways in our search for ways to help us function better.

Have you been tested for Lyme disease? Lyme causes many POTS-like symptoms. I assume you have been tested for throid disease?

Here are some meds that many of us take: florinef, midodrine, mestinon, beta blockers (various kinds), procrit, SSRIs as well as salt-loading, compression hose, head up in bed, and the list goes on.

We are happy to have you join inour discussions.

Lois

[Tessa]

Hi Heather

Welcome!

I have no diagnosis yet but I think I have POTS.

You are going through a bad time, I hope you will feel better soon.

Take a look around and share your doubts and experiences with us. I am sure you will find the answer. There are many of us with different symptoms, but we all have a common feeling...

Some of your symptoms are very familiar to me, others not.

It seems you are following a good treatment. I am still looking for a cardiologist who can help me...

Being unable to carry out normal things (for instance to do some shoppings) without feeling all this wide range of symptoms is frustrating... But I try to accept it and hope that better times will come.

At least we have us to share our feelings. Welcome to this forum. Do not be ashamed to post. Sometimes it is difficult to concentrate (that?s part of our problem), but do not bother if you cannot express yourself as you wanted, etc.

Take care,

Love,

Tessa

[Canadagirl]

Thank you all for your welcome and replies.

I am especially interested to hear from people who have been bedridden and then improved. Also temperature fluctuations. After a shower my temp goes from 98 to 94.8 for a bit. It fluctuates wildlly from second to second.

thanks again.

[marnian]

Welcome!

I think a lot of us have had better times and worse times. I'd like to add my recent experiences since you asked about someone who was bedridden and then got better. I spent last summer in a hospital, in a nursing home, and then home mostly in bed. But by the fall I was going to work part-time in a wheelchair, then a a few more hours without even needing the wheelchair, and I've just gone back to working full-time. I'm still really struggling to work full-time (my days off I rarely make it off the couch and such), but I'm doing about 500% better than I was this summer. I figure it's some combination of medicine, luck, and determination.

My temperature seems to flucuate too, but not as dramatically as yours. And it doesn't really seem to be tied to much of anything. Although I have noticed that if I feel feverish sometimes my temperature is actually low (around 95.5-96.5) rather than high. Do you notice that low temperatures make you feel bad or is it just odd?

[Canadagirl]

Welcome!

I think a lot of us have had better times and worse times. I'd like to add my recent experiences since you asked about someone who was bedridden and then got better. I spent last summer in a hospital, in a nursing home, and then home mostly in bed. But by the fall I was going to work part-time in a wheelchair, then a a few more hours without even needing the wheelchair, and I've just gone back to working full-time. I'm still really struggling to work full-time (my days off I rarely make it off the couch and such), but I'm doing about 500% better than I was this summer. I figure it's some combination of medicine, luck, and determination.

My temperature seems to flucuate too, but not as dramatically as yours. And it doesn't really seem to be tied to much of anything. Although I have noticed that if I feel feverish sometimes my temperature is actually low (around 95.5-96.5) rather than high. Do you notice that low temperatures make you feel bad or is it just odd?

Thank you so much for this encouragement! Can you attribute your recovery to anything in particular? What meds made the biggest difference.

Thank you for sharing!

PS My temperature drops when I sleep and when I walk. When I wake up and it's low, I feel cold and in a sweat on the back of my head and neck. When I walk my temp starts at around 98 and goes lower the farther I walk (over a few minutes). My legs feel cold when I walk and my temp is dropping.

[corina]

hi heather,

wlecome to the forum! you will find lots of friends and help here!

what helped me most (especially with fluctuating temperature) is mestinon. i was always VERY cold, even with very high temperatures outside, but when i started mestinon i found out that my bodytemperature became MUCH better. i increased the dose (very slowly) until i noticed which doses works best for me. i still get cold when the mestinon looses power (after about 4 hours).

mayby you can talk to your doctor to try this???

during the nights i have severe nightsweats and alwasy wake up VERY wet and VERY cold. well, at least i wake up (instead of being awake all night i mean ).

again welcome and i hope you will get answers to all your questions!

corina

[lizb]

Hi Heather, welcome I have just recently joined the forum and I have found it a great support. I have experienced days of extreme fatigue but to date I have not been bedridden. The symptoms of this illness varies from one individual to another and as you will find with this forum, everyone is so supportive. The forum has helped me feel less isolated especially, when I am having a really bad day. I am sorry I can't offer you any words that would inspire or help you cope with your symptoms but I found that the more advanced members are excellent at passing on their experiences and giving some hope that ,yes, somtimes things might get better. I try to stay positive and just take one day at a time.

On my bad days I think "this to will pass"

Take care,

Lizb