Overdoing It - And No Recovery?

[Goschi]

If anybody has got some experience with that, I would be glad for every idea! Thanks in advance!!

I was dxd with Pots in Aug. 2013, but certainly had it since 2012 or maybe longer. Til Dec. 2013 I got worse and was finally bedridden and homebound.

After that, I started to exercise and was very soon able to leave my home for 5-10 minute walks. By mid Feb. I could go for 20 minute walks, 3-4 times a day. On Feb. 22 I "risked" a 45 minute walk - and almost had a syncope, I barely made it home.

Since that date, I never recovered and today I am again mostly bedbound.

Despite continuing with exercise (which is now much more difficult than it was in Dec./Jan./Feb.) I simply can't get even close to the state I reached before my "breakdown". I start to wonder if I "ruined" something in my body on this Feb. 22? Is this at all possible in dysautonomia?

[MomtoGiuliana]

I'm sorry you are feeling so badly still. In my experience certain triggers can lead to short term (day-weeks) set-backs or symptoms, but eventually I return to a baseline. Everyone is different. But if POTS is your only diagnosis, it does not seem likely that you sent yourself into a permanently disabled state.

I found that very slowly stepped up exercise helped me with recovery.

It may be that you need medication or other support to have more lasting improvement.

[Goschi]

Thanks Giuliana!! I hope you are on a good way to recovery!?

POTS is my only diagnosis, except a recent finding of a very mild small fiber neuropathy in my calves. This seems at least to modify the first diagnosis of "Hyper-POTS", according to very high NE during my TTT.

However, I can't get rid of the general feeling that "something more basic is wrong inside my body".

But I know this is not unusual for dysautonomia sufferers.

Since my "breakdown" in Feb. I was on Ivabradine (didn't do anything), at the moment I am on Clonidine (makes me worse, will stop it). But I don't really blame the meds for not helping me - since I first got meds after my diagnosis last summer (Propranolol, Mestinon) I always had the strong feeling that what they do with my body has in fact nothing to do with what's "actually" wrong with it. Just a feeling.

This may be pure psychology - but since I simply can't recover to where I was two months ago, just because of one near-syncope, I really wonder...

[lejones1]

I think you'll get back to baseline! I've had that fear before too - I was pretty stable for a while and tried to go back to work full-time - big crash for 2 months. Once I got back to "normal", I tried to go back to work part-time and start exercising - again, big crash. I was mostly bedbound for 4 months and thought I'd broken myself forever. But nope, that ended too! That was almost a year ago and I've since learned to challenge myself in smaller ways. I'm working 30 hours a week again, I just built up to it slowly. Also, I know this is controversial, but you may considering cutting back on your exercise until you get back to normal, if you feel it's become much more difficult. I think I got out of my last crash basically by...aggressive rest. I didn't even try to exercise again I was mostly back to normal. Good luck - it will be ok!

[Goschi]

Lejones, thank you so much for your encouraging words!!

I am really glad to hear that you could leave these bad times behind you!! Wishing you all the best for the future!!

[corina]

It's really hard to crash not being able to get back to your baseline. I hope that time will help you. I remember the times where a 2 weeks holiday set me back for about 3 months usually. While everything was prepared and taken care of by my men and mum. Just the trip was so hard on my body that it took ages to come back to my normal baseline. Sending good thoughts your way!

[Goschi]

Thanks a lot, Corina, for your nice and ever so supporting words!! My best thoughts are going right back to you!!

[Chaos]

As everyone has said, it may very well be the POTS causing these symptoms and time may help with a very slow gradual return of activity.

However, if you suspect that something else may be going on, you might want to look at these resources regarding ME/CFS and the diagnostic criteria for it. Post-exertional Malaise (PEM) is a hallmark sign of ME/CFS. Many people who have ME/CFS have described an event such as you are describing which they feel caused them to "never" recover.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

The above link is the abstract. You can get the full article from that site.

Here is a guide for primary care practitioners to help them diagnose the disease.

http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf

Here is a link to Workwell Foundation (formerly Pacific Fatigue Labs) which has done much of the research on exercise and PEM in ME/CFS. If you scroll down to the bottom of the link, there is a list of articles and video links that you might find helpful. There is one video called "Top 10 Things You Need to Know About Post Exertion Relapse" which I found very informative, although all the articles and videos were interesting.

www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDkQjBAwAg&url=http%3A%2F%2Fwww.workwellfoundation.org%2Fresearch-and-latest-news%2F&ei=mr1OU78ypJTxAaWegPAN&usg=AFQjCNEZ4jlsKPiqrai6QsozEKVp2ygoww&bvm=bv.64764171,d.b2U

Edited April 16, 2014 by Chaos

[Chaos]

See if it works as a link this time.. If not, guess you'll have to copy and paste it to find the Workwell site.

www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&ved=0CDkQjBAwAg&url=http%3A%2F%2Fwww.workwellfoundation.org%2Fresearch-and-latest-news%2F&ei=mr1OU78ypJTxAaWegPAN&usg=AFQjCNEZ4jlsKPiqrai6QsozEKVp2ygoww&bvm=bv.64764171,d.b2U

[Goschi]

Chaos, thanks for the links!

Of course I already thought about ME/CFS too. But I definitely don't meet (all) the criteria, so it seems that I have "only" POTS or maybe POTS and something else.

[looneymom]

I hope some time will help. The only thing I can add is trying doing exercise M-W-F and rest on weekends. Try this and see if this helps. If after 6 months, you don't see improvement, I would start searching for an underlying cause of your POTS.

[Goschi]

Thanks, looneymom! I am exercising very, very careful now! The only possible reason I can imagine at the moment is the clonidine I take since three weeks. It makes me very weak and the POTS worse - no wonder, as it is a vasodilator... Will slowly taper it off now.

However, I am permanently searching for the underlying cause of my POTS! ;-)

[blueskies]

I get fit on a regular basis, have a set back and am mostly couch bound for months and then feel up to being able to start exercising again. Rinse and repeat. Yesterday, I tried to start again and walked (strolled, really) for 15 minutes in the autumn sunshine (I'm in Australia). An attempt to start exercising again, but also raise my vitamin d levels through some exposure to the sun. I was concerned that I'd bring on a migraine (the worst symptom I get often caused from being on my feet too long -- what amount of time is 'too long' can vary from day to day and I can't predict it) but it didn't happen yesterday. So today I will repeat my walk. It's another beautiful day. Hopefully I will get back to good fitness levels like I have repeatedly in the past. Although I have had made quite a few attempts in the past months to exercise that have ended badly. It's frustrating to get fit and then crash but it seems to be something that I have to keep on working with. Because when I am fitter I manage pots a bit better. Nothing to rave about but I do see slight improvements. Plus exercising outside lifts my spirits. I feel like I'm participating in the world. For me, it's a necessity that I start very slowly.

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[blueskies]

Goshi,

I just wanted to add that my fitness levels can improve to where I can walk for up to an hour and swim a kilometre or more. I haven't 'broken' anything permanently. At least not yet. (I do keep in mind those people who have dys. that are bedbound and nothing they do seems to be able to change that for them -- not suggesting you are one of them but my heart goes out to those that are unable to make improvements at all).

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