Think I'm ready to start some exercise but am apprehensive (CFS/ME and POTS) - any suggestions?

[fuzzpig]

Am about to get an early(ish) night but wanted to write this before I forget, so apologies for posting and running, will be back tomorrow.

Basically I have CFS/ME (chronic fatigue syndrome) and POTS (postural orthostatic tachycardia syndrome) that have at various points had me virtually housebound, but have made big improvements recently. I can now do the school run (0.5 miles so 2 miles a day total, half of it uphill) without any problem, this is quite a big deal for me as DH was doing all school runs until he started FT work in February.

I would really like to take on something else as I actually feel a bit restless sometimes (!) but it needs to be gentle and safe (particularly due to the POTS, collapsing is a risk if I'm dizzy) - swimming/running not an option ATM and don't have/can't afford a bike or gym membership.

If anyone has any experience of exercising with these illnesses, or thoughts about stuff I could do (possibly at home for now?) that would be great. I do have a lot of weight to lose although that's not my main aim IYSWIM (but it is coming off thanks to the increased walking and eating better) - I would really like to improve my strength and stamina because things like picking up my 4yo and running for the bus - both things I can't always avoid - have a huge effect on me still.

Thanks in advance!

Are you sure you couldn't afford a gym even if it were through a doctor prescribed scheme? Many council run gyms have schemes whereby people can have sessions at a heavily discounted rate if it's through a GP referral scheme.

The trainer at my gym is great at putting together a program that suits me and my needs as an individual.

Ooh hadn't thought of asking the doctor for a referral! Will try that. I know they did free swim referrals in the past. Thanks :)

Is there anything else I could ask for/about at the doctor to make the most of an appt? Do I just say I want to exercise more but need advice due to illnesses?

I have seen the local Wellbeing team before as I referred myself but they weren't very helpful due to not understanding the illnesses.

Hi Fuzzpig. I also have POTS, I do mat exercies every morning after taking my kids to school - I don't use a dvd, just make it up from things I have done in classes - a bit of Tai Chi to warm up, a bit of yoga, then do some stomach work, including plank and then some calf raises on the stairs, calf stretches and some balances as I have week ankles. I haven't been told by anyone to do the calf raises, but they say that your calf muscles pump your blood around, so I'm assuming that would be beneficial. I have read that the stomach exercises are supposed to be useful as they help to prevent the blood pooling in that area. I've also bought two handweights and do a bit with those. I bought a DVD on using weights but haven't opened it yet. I generally feel less lightheaded afterwoods.

Have you tried any dietary changes? I've gone on a mega healthy eating spree and I'm optimistic it is going to help.

Thanks those exercises sound helpful, can you tell me more please? I do have a stretches DVD made by the CFS team but they are a bit too easy now (was more useful when I was really weak)

Yes I've improved the family diet a lot and am reaping the benefits :) down a couple of dress sizes and generally feeling better although obviously the walking is playing a part too.

I really struggle with salt though. When I was diagnosed the specialist actually said I needed more and was shocked at how low my intake is (have always avoided it as much as possible due to media reports saying how bad it is!). But I find it really hard to manage as I hate the taste if I add it to food, and the only really salty things I like are heavily processed which I now try to avoid as eating 'clean' has had such a positive impact.

I do have wii fit plus which I haven't really used since getting ill, do you think using the yoga/stretches would be a good start? I've no idea how they compare to proper yoga!

you need to build the salt up gradually - after a couple of years, DD2 can now tolerate so much you can see it sitting on top of her food, any less than that and she can't taste it.

In terms of exercise, her consultant ordered: 20 bicep curls with weights before getting out of bed, followed by 20 squats leaning against a wall. Then at some point in the day 30 minutes of "hot and sweaty upright aerobic exercise" - she could start off with walking, but had to build it up. She uses Just Dance or Zumba on the Wii generally, as it tracks her progress, and walks a lot during the day.

Calf raises are good (but hurt) as strong calf muscles help to stop the blood pooling in your feet and legs.

What's helped her most though is a really boring regular routine of up at the same time every day, bed at the same time, meals at the same time.

Have you tried ivabradine for your pots? It's really turned my life around. The only thing I need to watch is that I don't go too high intensity else I go very faint but I'm back on my bicycle now.

DD2 is hoping her new consultant will let her try ivabradine - her current consultant isn't keen as she's never used it on DC before, but midodrine isn't really doing the trick as it wears off quite quickly, but increasing the individual doses causes bad headaches. Betablockers worked well, but made her hair fall out .

New doctor seems keen to investigate a mix and match approach though, so hopefully we can get her medication levels sorted before she leaves school.

Any POTsies doing low GI/low carb? I'm trying to convince DD that toast and nutella isn't the best breakfast she could be having , and am wondering about reducing carbs.

I've never had any medication for POTS. I've had it since puberty I think but wasn't ever taken seriously by doctors and was only diagnosed in 2012 aged 26 when I already had CFS. What does the ivabradine do? I could ask the GP. I want a referral anyway but it seems I have to push pretty hard for it (and yet for the CFS I was instantly referred to an excellent service in London, but the doctor who referred me then has left now :()

I like the idea of doing things before I get out of bed. I am in a much better routine now that I'm in charge of school runs (DH leaves at 7.15), I still take at least 30 minutes to 'come round' in the mornings and inch myself towards the edge of the bed so I don't get really faint and dizzy. It would be good to do something helpful in that time.

What are calf raises though?

fuzzpig if you're in London or surrounds, try for a referral to Nick Gall - currently a 14 month waiting list for NHS, obviously much shorter for private. Lovely bloke, really knows his stuff.

ivabradine has been really good for my DD but she had to push very hard to get it

Did you have a tilt table test Fuzzpig?

I'm under a cardiologist for mine. He is brilliant (due for a review at the end of the week and I think I might get discharged back to my gp). Mine got taken seriously when I had a bad reaction to some medication and ended up with an ongoing HR of 200 for 3 days til I saw my gp and was sent pronto to a&e and was hospitalised.

Ivabradine slows the heart down without affecting blood pressure. My HR is a bit slow when I'm lying down now but it's really under control when I stand up or exercise. It's not perfect, i occasionally have break through attacks, mostly if I haven't been drinking enough water or if Im stressed but given I couldn't actually stand still for more than a few minutes before without going faint (I could walk but not stay still) it really has been a transformation.

I'm not sure why low carb would help? I can see it would for blood sugar issues.

GP unlikely to be able to prescribe anything as it's all unlicensed (some stuff they can do as a repeat prescription if a consultant tells them to; some stuff like midodrine is hospital prescription only which is annoying).

Ivabradine regulates the heart rate without the side effects of betablockers. Other drugs used are fludrocortisone (increases blood volume) and midodrine (tightens up the blood vessels, so increasing blood pressure).

Leaping yes I am kind of low carbing. Wasn't particularly planning it but I'm just cutting down on complex carbs as I am generally trying to improve my diet (and that of my family). My breakfast now is two boiled eggs with one slice of naice wholegrain seeded toast and butter. It used to be cereal (the sweeter the better!) or lots of white toast but I have gone right off that now (well, I would still enjoy it TBH but would regret it after!) and the protein in the eggs helps me feel so much better. When I remember I also have some green veg with it (shoving some asparagus or tenderstem broccoli in with the eggs for the last few minutes).

I am also cutting right down on servings of things like pasta, potatoes and rice (quite often have none at dinner), I increase veggies instead. I thought it'd be hard but it really isn't, I'm amazed. I actually feel a bit sick at the thought of too much bread, a normal two slice sandwich is too much. But I've not really explicitly banned anything - just shifted the balance.

there's research going on with POTS at an endocrine level (there's a link of some kind with PCOS but no-one knows what exactly), so insulin is presumably involved in the mechanism of what's happening. Dd was told to eat little and often and avoid big carb heavy meals, so I'm speculating a bit

Calf raises on stairs are supposed to be really good.

Hydrotherapy also really helps with tone etc, and as there's someone in the pool with you it's safer than just free swimming. I had to give it up though as the pool was too hot and made pots twice as bad. When I first went it was bearable but everyone else kept asking for warmer & warmer water so they caved to popular demand :( it did really help before then though.

I have a problem with heat too. It's harsh as obviously hot baths do help with pain caused by the CFS so I have to balance the benefits and drawbacks.

I will definitely start the bicep curls in bed, I do have hand weights.

Agree with how great Ivabradine is, I was switched to that after a really bad patch last autumn. I get the breakthrough attacks too when not having a good day, but not getting the insane highs and lows I was getting with betablockers. I low carb, I can't handle bread, pasta, rice, whole motility issue and my hr goes nuts as all the blood goes down to my stomach to digest it. Too much sugar can also cause problems, especially if not eaten as part of a meal.

There are recumbent bikes you can get just the pedals for to do lying down. I find walking is the most useful, anything that involves impact like running, jumping, dancing, or anything involving stooping and bending just knocks my heart rate up into the silly levels.

I haven't watched this yet, but this is how it is described

"Prof Mark VanNess from the Workwell Foundation USA presents evidence of the damaging consequences of aerobic exercise programmes (such as GET) for people with ME, comments on observations made by people in the 'Voices from the Shadows' film shown, and explains a more helpful approach to activity and exercise management."

Just bumping this again! I'd rather forgotten about it over the Easter holidays

The good news is though I managed to take the DCs to the park four times over those two weeks. That's walking there and back, well over a mile each way and hilly. I hadn't done that in about two years previously! So, things are definitely improving. :)

I've looked into a local gym which is actually affordable (£17pcm) and conveniently located so I'm building up to that (will ask doctor first in case they can refer me - haven't got round to making an appt yet )

Still have the odd dizzy day but I definitely feel ready now. I want to get more fresh air as well - on the odd day when I end up staying indoors I actually don't sleep well.

Thank you for the link Kate

fuzzpig - I still haven't been able to watch that video, but I hope it's useful.

I did just watch .

Exercise referral through your GP would be good. But like you said you've seen a well being team before and they weren't much help. The 2 conditions you have aren't really covered in the GP referral qualification. It's a bit more specialist but if you get a referral you could ask if there was a member of staff with an area of expertise in it. Also have you considered chair based exercise? This is still beneficial and harder than it looks once you get going. There are a few workouts on YouTube that I've used for my own classes

I must admit to skimming the thread, so apologies first of all.

17 years ago I was diagnosed with CFS/ME and very gradually I began to feel better of my own accord. Drs at that time had no idea what to do for the best, and as I was a teenager at that time, I had nothing better to do than stay at home and sleep when I was able as no resposibilities. I slept 20+ hours a day, lost a huge amount of weight. etc etc

Every time I overexerted myself I would not be able to do minor things for the following days.

I'd say easy does it as much as you can, and listen to what your body is telling you rather than 'trying to do as much as you possibly can today'. hope this is helpful. I no longer have the effects of the ME/CFS but in the years after my own recovery I found out that energy healing is one of the ways to cope and assist the body with the whole exhaustion process. I'm now an energy healer and have a greater perspective on this whole illness.
With much love xx