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How Many People Can Still Work?


Angela

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No not since January went from standing 10 hour days at a job that I loved so much to now I can't stand 30 seconds, so driving is out for me :(

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Probably hyperPOTS (no bloodwork done to confirm), but might be still useful. I don't drive - haven't been able to for over a year now due to spaciness. We'll see if the Ritalin (methylphenidate) I started today helps with that. I do work, but I'm a research fellow (grad student), so my work is incredibly flexible both in terms of hours and when/where I get things done, so it's not necessarily a good example :^)

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I am still able to drive when I feel OK. I've been off work since July of '11, not that I'm getting any help or support. I'm most likely hyper-type, but haven't been able to get anyone to test me for catacholamines yet. I've tried a number of meds, but nothing has lasting help so far. I've tried exercise, but it doesn't have enough improvement to make me stable either. Sleeping is totally off-whack, insomnia and usually only fall asleep super late. If I could keep the migraines at bay and have a normal sleep-wake cycle I might be able to work, but I can't get adequate treatment thus far.

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There's a difference between "most people with POTS can't work" and "most people on this POTS forum can't work". The ones with POTS who are able to control it due to treatment, and to work as a result of this, are far less likely to be on this forum. So there's a strong negative bias which should be borne in mind.

For the record, I can't work, but then I don't have a diagnosis of POTS yet, and have no idea how I'll fare if and when I receive treatment.

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yeah, i realized when I posted that there could be a bias because often when you feel better you forget about "support groups" such as this forum however at the same time I am sure there are plenty of people who are too sick to even get on a forum or not savvy enough to know about this forum and the internet alone so I take that into consideration. It was just a question. I presently do not drive unless it is to the corner store but I do work - a desk job so I am sitting most often but stressful....so not sure for how long. cannot tolerate proponol and do not want to try any other alpha beta blockers presently.

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Also Batik, from my readings and what I have been told hyperpots is much harder to treat than the other type of pots which is kind of why I directed the question to that subgroup but appreciate any answers from all Potsies. In general any Pots/dysautonomia *****. Why do you suspect mastocytosis? How come you don't have a Dx yet for the pots?

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I don't know if I have hyper POTS. I was only diagnosed with POTS and my specialist has discouraged further testing or diagnosis, mainly b/c my symptoms are mostly tolerable. I do get bp swings and high bp when I have a flare up. Anyway, after not being able to work for about a year I have been able to work for the last 8 years with flare ups once in awhile that have kept me at home.

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I work and have worked almost throughout having POTS. I did make a choice to take a different kind of job that would be easier on my POTS. I think most of the people who work are probably too busy to post. There are a lot of different factors that play into whether someone works - some people here were already stay at home moms (which of course is work too, but different), others have a spouse or parents to support themk and some have to push themselves because they would literally have no roof over their head.

I am not sure that the type of POTS (hyper or non hyper) makes much of a difference in the ablity to work.

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Yogini or anyone else...I used to do yoga before I got sick...want to slowly get back into it or pilates as you can do much of the exercises on the floor mat. Any excercise dvd's that you recommend? They would have to be mostly gentle and not standing up to start with.

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I'm still sure what type of POTS I have but I haven't been able to work for just over two years now, of course I had been diagnosed wrong until last June.

Loulou

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Yes, I can still work. I have hyper-POTS, and have always had it (or was so young at onset that I don't remember.) I had been able to and did work full-time for many years doing a primarily seated job. I had a "POTS-crash" back in '07 and have been able to slowly work back up to a mostly standing part-time job in addition to raising two kids ( I was self-employed for many years and have taken time out to help a friend's business.)

Much of what you can do depends on how you define "work." A 60 hour a week job hanging drywall or a 35 hour a week desk job.

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I don't know what type of POTs I have mostly because there are no Dr's who specialize in my area of getting any more of an exact diagnosis. I have crappy POTs - that's all I know. I couldn't work from Jan to March....but once I returned part time for the first month then full time I my symptoms did improve. I returned very symptomatic and seemed to re-train my ANS to tolerate standing, position changes, talking and walking and then (much later) light lifting. I'm in out-patient orthopedics ....physical therapist....so I have the ability to sit and stand. I made it work, directing pts from sitting when I could and stood when I could. My boss was supportive in making sure I sat if I looked like I was going to faint. And I would also like to thank my husband for dressing me in the morning as I couldn't have gotten to work without any clothes on. Mornings were always the worst for me. I am much better from having made a push to return to the type of job I have. I'm sure it wouldn't work for everyone. Good luck all

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that's cool....i wish my bf would dress me. I just put bobby pins in my hair anymore so you can't tell i havn't washed it and never bathe in the a.m. and throw on whatever I can find as far as clothes go....that's funny that people don't think i look like I feel (at work). I guess I don't stink at least, I know my boss, who used to be one of my best friends before I got sick would certtainly say something!

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I work very part-time at the office where my husband has a job - it's a small specialized construction firm. I "help out" in the accounts department, usually 1-2 afternoons a week. I feel SO lucky that they let me come in at 1.00pm. Mornings are deadly to me; plus, I have awful insomnia and finally manage to get some serious sleep between 6 am and 9 am.

I'm glad I can do at least that much, but am so discouraged that after my little 4 or 5 hour "day" at work, I am utterly demolished. I feel like I can barely remain upright after a work afternoon, and am very tired the following day. Very discouraging, given I used to work a demanding full-time (and then some) job.

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