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I've had ME/CFS since 1984 after Glandular Fever. I was diagnosed officially with ME in 1992 and then unable to work properly since then. In 2007 I went downhill and was hospitalised with Autonomic Neuropathy. I've guessed I have had POTS as most of my symptoms fit. I need to get a proper diagnosis and will see a cardiologist next week. I have unfortunately got conditions that my GP knows little about and that makes it hard to get diagnosis and treatment. I have worked a little with art since 1984 but now have to have more support and care.

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  • 2 weeks later...
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  • 4 weeks later...

I work for myself. My husband and I own an organic vegetable farm. We have about 40 employees in the summer and I do all the "business" parts of our farm--i.e. all the office work. My symptoms have gotten a lot worse in the last 3 months, but fortunately this is the slow part of the year. I still have a lot of work to do, but it is not crazy like it is in the summer. We'll see what happens when the busy season gets here! I really can't sit at my desk to work anymore so I work on my laptop while lying on the couch. There is no way I could work if I had a "regualr" job.

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I barely made it through college. I had to skip at least one class a day because I was so sick, so I had to plan which classes were most important that day so I could make it to them. Surprisingly, I had straight A's my senior year, but that was because I worked super hard studying at home (where I could lie down!!). I haven't been able to work since I graduated, but I've seen some improvement in my symptoms so hopefully I will be able to work at least a part time sitting down job soon! It is really frustrating to hear my friends complain about school and jobs and say how they are jealous of me because I "don't have to do that", when I would give a whole lot to trade places with them and be able to work or go back to school and get my master's degree.

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  • 3 weeks later...

I was a programmer in my other life. I worked from home as a telecommuter. When I got sick, my POTS symptoms were secondary and minor. My main issues were ME/CFIDS - activated viruses mostly.

I had always felt better in a horizontal position - since I had Epstein Barr in college and woke up a different person. I managed to make it through college and got sick with ME/CFS when I was 38. I was bedridden then worked my way to walking a mile a day in the Texas heat. I managed to keep my job until I had a relapse in 2003. The POTS symptoms were and are my primary issues.

Even while I was working, I did hours and hours of research after my workday and after my son was put to bed. From 9pm till 11 or midnight, I would research ME/CFIDS so when my relapse rolled around, it was easy to focus on POTS as I was already aware of it.

It kills my soul not to work - I was a Type A like everyone else here. Now, I joke that I am a Type "Z" personality! :unsure:

I still have hope that I will work again. I rec'd disability in just under 60 days but POTS was not included as I had not had a diagnosis yet. I rec'd it for two conditions (one of them being ME/CFIDS - still don't know what the other one was but I think it had to do with neuropathy as I have little hand strength.)

I have not worked since 2003 - so sad!

But my research is my job now.

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I work for myself. My husband and I own an organic vegetable farm. We have about 40 employees in the summer and I do all the "business" parts of our farm--i.e. all the office work. My symptoms have gotten a lot worse in the last 3 months, but fortunately this is the slow part of the year. I still have a lot of work to do, but it is not crazy like it is in the summer. We'll see what happens when the busy season gets here! I really can't sit at my desk to work anymore so I work on my laptop while lying on the couch. There is no way I could work if I had a "regualr" job.

Sounds awesome. Can i get a job there too??

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I've worked in grocery stores and that was the most difficult job since I had to stand in one spot all day. By the end of the day I'd collapse on my couch and didn't have much energy for school.

When I was in college I found being a research assistant was tolerable. My "boss" (professor) didn't give a **** what I did so there was no stress and I basically just worked on data all day in a basement. I actually miss that job and wish I could go back. I don't think I could handle a full time job which is why I haven't pursued one. Just going to classes basically kicked my butt pretty severely.

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I was working full time as a systems business analyst when POTS hit me on July 2, 2011. After that it got harder and harder to get through the day. by October I just couldn't go anymore, mainly because of the daily migraines caused by what I now know is Vertical Heterophoria. At that point I didn't have a clue about POTS, I just knew something was horribly wrong cause I could barely hold my head up or stand for any length of time. After Dx and starting some meds, I started back to work 1/2 days in January with the hope that I could build my way back up to full time. Two months later, I still can't seem to work a full day. If I do have a good day and work longer hours, I end up paying for it the next day.

This weekend I picked up Strep throat, had a high fever, migraine, nausea, etc., so I feel like I'm starting all over building up my strength again!

I don't know what to do about my work, I expend so much energy even working 1/2 days that I don't have anything left when I get home. I have long term disability at work, but I'm the main breadwinner in our house. It won't provide enough to pay the bills. I work for a great company and I'm going to enter a request to work from home full time. Perhaps without the commute I'll be able to manage. However, even when I'm at home, I've usually had enough by 1:00 and need to sleep for an hour.

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  • 1 year later...

Hmm. I noticed there are a lot of other RNs here with POTS. I am an RN who after many years of battling increasing symptoms and severity of symptoms lost the ability to work back in 2005. I am currently on disability. :(

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Guest Hanice

I do work a little but it is very difficult.

I have so much anxiety and fear going in that I just feel sick for hours and as if I'm going to come right out of my skin.

It is almost way too much activity being a nurse.

There are so many tasks, so many trips up and down the hall.

I am lucky that with the unit I'm on the med pass is small.

There are only 13 residents on that unit.

I find as the night goes on I feel good and part of it is I don't have that pile of work looking at me that I need to accomplish. As I whittle it away my anxiety lifts.

My heart rates have been high there but I think it's partially anxiety at this point.

The more I relax there the less it seems to be a problem.

My anxiety seems to be a major part of my problem.

It's not something I feel I have controlled at this point and I get so discouraged that I just feel like crying at times.

I seem to not be able to handle any normal stress at all.

It all exhausts me.

It's very difficult.

I'm sorry if I sound jerklike but at least if something happens, your right there in the hospital so that's good. About the anxiety.... my goodness I am there! I can't take it anymore! I'm even considering taking real meds! I hate western medicine! Have you looked into taking anything to ease your anxiety?

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Guest Hanice

Hmm. I noticed there are a lot of other RNs here with POTS. I am an RN who after many years of battling increasing symptoms and severity of symptoms lost the ability to work back in 2005. I am currently on disability. :(

Thats amazing that you were ablr to get on disability! (Not that you have pots though, thats not good) I want to get on disability for pots too but am unsure and kind of discouraged about trying to get it.
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I am a designer, but I work in a building that wasn't meant for office space. The A/C can't handle the heat load, so my desk hits 80 degrees everyday. I cannot handle it without Adderall, but even then it's a nightmare. I had to get a doctors note to use a fan. It was denied because it was decided that my heat intolerance and vision loss was a symptom that could possibly go away so they couldn't see the use in getting me a company issued fan. I brought my own, which I could get in trouble for.

Sorry if this is the wrong place to ask this but it deals within work and disability. I've read that POTS will not cause brain damage. I've also read that any disorder that even slightly restricts blood flow to the brain causes it to age at a much faster rate. In the study they found that people with circulation problems had brains that showed 2 years of advanced aging. Since advanced aging can lead to stuff like dementia, couldn't it be considered a form of brain damage? I am rapidly aging my brain by subjecting myself to high temperatures everyday. Could this be grounds for disability?

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Guest Hanice

I am a designer, but I work in a building that wasn't meant for office space. The A/C can't handle the heat load, so my desk hits 80 degrees everyday. I cannot handle it without Adderall, but even then it's a nightmare. I had to get a doctors note to use a fan. It was denied because it was decided that my heat intolerance and vision loss was a symptom that could possibly go away so they couldn't see the use in getting me a company issued fan. I brought my own, which I could get in trouble for.

Sorry if this is the wrong place to ask this but it deals within work and disability. I've read that POTS will not cause brain damage. I've also read that any disorder that even slightly restricts blood flow to the brain causes it to age at a much faster rate. In the study they found that people with circulation problems had brains that showed 2 years of advanced aging. Since advanced aging can lead to stuff like dementia, couldn't it be considered a form of brain damage? I am rapidly aging my brain by subjecting myself to high temperatures everyday. Could this be grounds for disability?

You should definitely try.. it can't be good for you to be in that heat all day. I would either switch jobs to better suit your needs or really try and get disability.

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Hi all. I am a graduate student in a computational mathematics program. My "work" is part time research plus classes during the school year. I have an office where I can lay down when I am not feeling well, which lately has been several times a day. The most frustrating part of dysautonomia for me, besides passing out too much, has been the brain fog and cognitive difficulties. I know that I am intelligent when well, but often I feel downright stupid and spacey. I'll keep pushing forward, though.

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@Free2agoodhome:

Have you tried wearable cooling devices yet? Something like the products here: http://www.mscooling.com/products

Also, this may interest you and help you to cool down faster: http://news.stanford.edu/news/2012/august/cooling-glove-research-082912.html

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Could you add options to the second two questions that say "I don't work."

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I've been absent from work since March 2013, apart from a spell of 5 weeks when I was working reduced hours over a 3 day week, and then returned back on a full time basis for 2 weeks. This took me to mid June, and then I've been absent since.

I'm due to return back to work on a week from this coming Monday. I imagine it'll be reduced hours again until I find my feet. Then, when I am ready to commit to longer hours, I'll be working a 4 day week, with Wednesdays off as a rest day.

Looking forward to seeing friends again and getting back out there. But nervous too. We'll see how it goes, but I've already come to terms with the idea that health is more important than work, and if I have to quit/lose/change my job to be where I need to be healthwise, I'd do it without a second thought now, as I'm not paid enough not too!

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GN -- I love your attitude about work. It took me about 4.5 years to come to this realization, and I still sometimes think things such as chores should be put ahead of resting.

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That is really interesting about the medical profession! I am a nurse too and worked on a post op surgical floor when my symptoms started. This December will be three years sense I have been able to work. I too would love to find a way to use my skills but the waxing and waning of symptoms does make it difficult.

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  • 1 year later...

Could you add options to the second two questions that say "I don't work."

Seconded! Although this is a very old poll so maybe not possible...

I tried to vote but because I'm not working anymore I tried to skip the middle question but it wouldn't let me..

I used to be able to work reduced hours but now cannot work at all. I worked at a coffee shop which is all standing :( I took many sick leaves over the years - at first it was just CFS - but now with the POTS I just can't do it anymore.

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I was an early childhood teacher. I think I am almost well enough to work part time. I know all day would be too much. I just don't know any teaching positions that are not all day.

Now I'm depressed... It's 2014 and I would say they same exact thing. Maybe I can "almost work". I have two teens so my thought is Lord willing, when they are grown I can try to work again. When I push myself too hard there are consequences.

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