Anyone Improved With Exercise?

[blueskies]

I have read at least one (and I think more) research papers on the net that have said that exercise benefits most pots patients, but not all. Sorry I can't give you any links, but if you search for it you can find them. I didn't keep any of the links because it didn't concern me - I am a person who can exercise regularly, only to find myself back at the 'beginning' and unable to exercise for an extended period of time. But I can exercise quite a bit for months at a time before sliding back. Luckily I'm not one of those people who find exercise impossible.

blue

[TCP]

From what I have read if you have mainly POTS symptoms then exercise can help. It's important that the calf muscles are working well as this is where the blood is pumped back up to the heart and it doesn't pool too much in the lower body. Funnily enough when sitting down and I have my legs elevated I still keep moving my feet and legs. If I have to sit in an upright chair, say when waiting for a hospital appt. I pump the muscles in my lower legs.

[*Merlin*]

I was originally diagnosed with Chronic Fatigue Syndrome two years ago, after 40 years of ill health. Following TTT etc, that diagnosis was immediately replaced with one of POTS. I was encouraged to exercise regularly and maintain as "normal" a life as possible. My health began to deteriorate even more rapidly until I became virtually housebound, unable to work, drive or exercise (even recumbent).

Last month my consultant decided that perhaps "we've" been a little hasty in dismissing CFS as being part of the picture. He now wants to refer me to a CFS clinic for CBT (hmm, talking about how rubbish I feel and keeping an "energy diary", that'll help for sure . . .).

My point is that exercise is certainly beneficial for many with POTS. However, if you have other issues, like CFS (either diagnosed or undiagnosed), depending on what stage you're at, exercise (and by this I mean any physical activity that taxes your energy) can be extremely detrimental - as I have found to my cost.

Each time I attend POTS clinic I'm half expecting my consultant to produce a magician's hat filled with potential treatments, rummage around and pull out something new to try. Little more than guesswork, none of which has helped.

Currently, I am ignoring all advice. I'm resting, pacing and restarting my Mito Cocktail that I was told to discontinue 2 years ago. Oh, and absolutely NO exercise for the time being!

[spinner]

Im baffled as to why people with DA dont universally swim, even if there is some hardship involved such as driving further to a pool.

Its a weightless aerobic excercise and addresses all POTS obstacles such as pooling, constriction, etc.

It also keeps you cool instead of overheating.

And the sequential rythmic breathing seems to regulate heartbeat and BP.

In other words, its the perfect excercise for POTS.

[corina]

Spinner, I have experienced that even swimming isn't always for everyone. Before I found octreotide I tried swimming at rehab (with a pt accompanying me in the water) but didn't succeed. My pt wanted to stop immediately after I fainted in the pool but I convinced here to keep trying. So we used a lot of floaters to keep me safe and I found out I could do some gentle leg movements or arm movements but couldn't use arms and legs together as it started the fainting again. We stopped trying after about 6 months where I made no progress at all. While on octreotide I am well enough to swim and do so on a weekly base under supervision of a pt. I got in trouble once when I got bad immediately after coming out of the water.

I agree with you that swimming (and the water pressure) may be a perfect exercise, still it's not for everyone! If you cannot swim it might be nice to just hang out in a baby pool and do some leg movements and enjoy being in the water! But do bring some one with you to watch you!

[TCP]

Merlin, I get where you're coming from. I must have had EDS as a child and then the EBV brought on ME and now I have POTS etc. I think it was hasty to dismiss ME as EBV and other things can bring that on. I think you can be pre-disposed to it and then a virus etc can trigger ME. I think POTS can come on as a consequence or as in my case combined with EDS. As you know exercise and ME do not mix and can cause severe relapse regardless of the psych mafia telling us otherwise.

The CBT may help you to cope with the illness but will not be a cure and graded exercise is not advisable in many cases.

[*Merlin*]

TCP, I think that I have already decided that CBT is not for me. Aside from the actual "treatment", the clinic is a 4 hour round trip away and I don't travel well.

I believe that I would find CBT somewhat patronising, bearing in mind that I have had to learn to deal with my issues for such a long time alone. From school age I have "adapted to survive" and think I've done pretty well, having been in constant employment until the last 2 years floored me. Finally, now that I am unemployed, unable to drive and have no life outside my home, they want to give me advice on how to cope with an illness the medical profession refused to even acknowledge I had for decades? Ha ha ha . . . :-D!

Seriously though, I do worry about deconditioning. I hope to get back on my pilates machine sooner rather than later, but I will be dictating my own pace.

[blueskies]

I believe that I would find CBT somewhat patronising, bearing in mind that I have had to learn to deal with my issues for such a long time alone. From school age I have "adapted to survive" and think I've done pretty well, having been in constant employment until the last 2 years floored me. Finally, now that I am unemployed, unable to drive and have no life outside my home, they want to give me advice on how to cope with an illness the medical profession refused to even acknowledge I had for decades? Ha ha ha . . . :-D!

Hi Merlin,

I see your point.

blue

[TCP]

TCP, I think that I have already decided that CBT is not for me. Aside from the actual "treatment", the clinic is a 4 hour round trip away and I don't travel well.

I believe that I would find CBT somewhat patronising, bearing in mind that I have had to learn to deal with my issues for such a long time alone. From school age I have "adapted to survive" and think I've done pretty well, having been in constant employment until the last 2 years floored me. Finally, now that I am unemployed, unable to drive and have no life outside my home, they want to give me advice on how to cope with an illness the medical profession refused to even acknowledge I had for decades? Ha ha ha . . . :-D!

Seriously though, I do worry about deconditioning. I hope to get back on my pilates machine sooner rather than later, but I will be dictating my own pace.

Yes, CBT isn't ideal and I did mind-training programmes that really helped me to cope with long-term chronic illness and life in general and a therapist came to my home. I wouldn't want to travel to do it. Yes, we learn to read our own bodies and I have diagnosed what's wrong with me long before the doctors do because we end up researching and knowing more. I studied psychology and that was from years of being interested in the mind-body connection and health issues. I was ill with ME for 8 years and worked in that time but haven't been able to work for many years although I have had some periods of self-employment. Thirty years is a long time to have an illness and over the years we do adapt and know what we can and cannot do.

Even when I am at my worst I do try and move around as much as I can, but I soon know if my body has had enough. Pacing is the best thing. Deconditioning can be an issue but it's often a word that is also banded about by the psych community who see exercise as the answer and as we know it doesn't work for everyone with ME. Keeping mobile is important though.

[writerlymom]

Macca, hi, how did you find an exercise physiologist familiar with POTS? I have been wanting to find a trainer who really knows this condition. It would be nice to have more guidance on what to do.

[Macca]

Macca, hi, how did you find an exercise physiologist familiar with POTS? I have been wanting to find a trainer who really knows this condition. It would be nice to have more guidance on what to do.

[Macca]

Hi writerlymom, my POTS doc referred me to an exercise physiologist clinic that specialises in POTS and CFS. The clinic is in Melbourne, Australia, so probably not accessible for you, but link to their website below if it's of some help:

http://www.activehealthclinic.com.au/faqs-about-cfs/orthostatic-intolerance-pots/

[writerlymom]

Thanks- wish there were something like that nearby!

[TCP]

It certainly looks like exercise effects people very differently. I kept as active as I could from 1984-2007 with ME although didn't exercise as I've never enjoyed it. I did love to walk as much as I could even though it was very painful to do so. I suffered for days afterwards. Since 2007 when the nerve damage became worse, I can barely function for many days of the week, but try to move as much as I can. Not if I push myself I feel dreadful but having ME/POTS/EDS etc can make for a complicated scenario. It's horses for courses I guess.

Some can do it and they seem to do well.

Others try it and it makes them feel worse.

[Noonoo]

Andy,

I've been doing cardiac rehab at the local hospital since January. I can run on treadmill for 5 mins now and do a circuit with rowing, cycling and leg or arm exercises! Along with vit b12 shots, it has made a huge difference to me. It took time to build it up and it wiped me out at first but it's got me back to work part time! I'm weaning off the drugs and I think the exercise has allowed me to scale them down.

Hope you're doing ok!

[DeGenesis]

If you have POTS with CFS/ME, GET is not advisable and CBT is just plain stupid. Pacing is OK. Don't over do it or you will set yourself back, as TCP said.

If you don't have CFS/ME, give exercise a try and see how you feel. If you have "Primary POTS" (does this even exist?), then I see no issue, but if you have POTS secondary to another condition, then overexerting yourself could cause a flare-up of that condition, thus worsening POTS.

For myself, elevating the head of my bed and staying upright for as long as I can during the day is exercise enough. Sometimes I go for a short walk. An upright position activates the renin-angiotensin-aldosterone system and increases blood volume. This assumes you actually make aldosterone. If you had a good response to Florinef, I doubt this approach will be helpful. If Florinef gave you high blood pressure and you had to stop, I would give this a shot.

I developed POTS a few years after "catching" CFS/ME.

[Andrie]

Im baffled as to why people with DA dont universally swim, even if there is some hardship involved such as driving further to a pool.

Its a weightless aerobic excercise and addresses all POTS obstacles such as pooling, constriction, etc.

It also keeps you cool instead of overheating.

And the sequential rythmic breathing seems to regulate heartbeat and BP.

In other words, its the perfect excercise for POTS.

Swimming kills my shoulders - I have probable EDS and my shoulders, wrists, and ankles are problems for me. Swimming has never been something I've been able to do for exercise, even as a kid.

[Noonoo]

I have EDS 3 but the exercise is helping as it is strengthening my joints. Physio has relieved pain too so it can only be a win/win situation- that's what gave me the confidence to try despite a high heart rate.

[Mermaid]

I have PoTS/EDS and started exercising, building up using a recumbent bike and also to 10 minutes on a stepper. Last week I tried a non recumbent bike at the same resistance and somehow have damaged knees - large swellings behind both knees. I've never had any type of knee issue before despite doing high impact heavy exercise in the past. I guess this must be because of EDS, so caution to people to take it easy and not get over excited as I seem to have done....