 Poster: A snowHead
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Hey guys, I got M.E/CFS when i was 16. Im almost 19 now.
The only thing i enjoy is skiing. I started in early 2009 and immediatley LOVED IT !
Having M.E/CFS makes it very hard to do this sport. My muscles really hurt during and after,, but its worth it in my opinion.
Has anyone here got M.E/CFS or has any relatives with it that ski?
I am going to build up some exercise before i go skiing next and plan to do everything i can to reduce the risk of a relapse.
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Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
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Sainter, yes I've had CFS for 15 years...
I would ski 30 days straight when I still skied here in Aus - plus 3 days a week the rest of the season.(short season though)
I spent summers here getting fit and ready to ski.
I found I needed to listen to my body - some days I'd just ski a couple of hours and go home to sleep/feed the birds/wander the village/swim etc etc Others I could ski all day.
Swimming is good if you can do it - just light laps and you can work some lactate out of the system...
Watch the food - I always made my own or purchased at the place I knew had things that had no preservatives. The colours and preservatives etc always killed me so I stuck to 'clean' foods to avoid that. Be careful with chest infections/colds etc. I found these a problem as I picked them up more than others and there were lots around. Required me to be a little careful with handwashing etc and rest if needed.
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Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
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little tiger, thanks for the advice !!!
Im going to be doing as much exercise as i can to build up without overdoing it, im going skiing in December.
When im going on the ski trip there is a pool, i think floating in the pool will relieve stress on the muscles and will be very relaxing.
I will try my best to eat healthily, though i must admit i do have a bit of a relentless addiction.
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Oh - I forgot... hot tubs seem to aggravate my muscle pains(major factor in my CFS)... so I try not to use them toooooo much... warm swimming pool or hydrotherapy pool is OK - seems the extra heat of the hot tub does me in... I used the hydrotherapy pool at Thredbo a lot when first skiing - if I was not up to a couple of laps I'd still go for a float and stretch in hydro pool
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Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
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Oh - I forgot... hot tubs seem to aggravate my muscle pains(major factor in my CFS)... so I try not to use them toooooo much... warm swimming pool or hydrotherapy pool is OK - seems the extra heat of the hot tub does me in... I used the hydrotherapy pool at Thredbo a lot when first skiing - if I was not up to a couple of laps I'd still go for a float and stretch in hydro pool
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You'll need to Register first of course.
You'll need to Register first of course.
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little tiger, Thanks so much, i will try relax in the pool.
I am so glad i have found someone else who is in my situation. Though you can manage yours very well !
I have just bought some of the skins compression shorts+shirt. An attempt to aid recovery + prevent injury.
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Sainter, Check out the Marshall Protocol. May or may not help you. My CFS started post a chest infection that in retrospect was probably pneumonia(I was sicker than the patients we admitted but needed to work as everyone else was away). I had a flare up after catching whooping cough and I had also had a few rounds with pneumonia after the CFS(which always made me really sick for months). I am trying the Marshall protocol and so far my asthma(developed after a bout of pneumonia) has almost disappeared, and my CFS seems to be improving a lot. Slow treatment though and not very nice. My doc had a bunch of tests done to see if it was a reasonable attempt - I was swimming in various pneuomia bugs
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Sainter, I have fibromyalgia. Which although not related has some similar symptoms to CFS. I actually find skiing or any other forms of mild exercise help. But I always need to combine exercise with plenty of stretches and I accept the fact that I often need to take painkillers. My pain does tend to move around (FMS is a bit random) and for some reason the symptoms are always worse in winter and in damp conditions. Today for example my neck and hips feel tender and immobile. But once I get going and get moving around more it normally seems to ease up a bit. Listen to your body, don't overstress yourself. But I do find doing something I enjoy is good therapy! 
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You'll get to see more forums and be part of the best ski club on the net.
You'll get to see more forums and be part of the best ski club on the net.
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queen bodecia, there is one (sort of) relationship... very common for CFS patients to suffer with fibromyalgia also
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little tiger, yes I've heard that too. There seem to be very varying degrees of FMS, some sufferers can hardly move and/or work and I daresay any with CFS also must have rather wretched lives. Luckily it doesn't affect me that badly. I have a lot of random pain but as long as I can manage that I can do pretty much anything I want. The IBS and related symptoms seem to affect me more. I also seem to get flare-ups, some days I feel completely normal, and other days I feel like a pin-cushion!
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snowHeads are a friendly bunch.
snowHeads are a friendly bunch.
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queen bodecia, Check Marshall Protocol... All my IBS symptoms settling down and almost gone... I've even eaten/drunk stuff I shouldn't and hardly noticed... not long ago all sorts of stuff gave me really bad stomach issues... Did go through a bad 'reflux' patch to get there though - the antibiotics gave me hell for a bit but now worth it for the asthma/IBS relief alone...
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And love to help out and answer questions and of course, read each other's snow reports.
And love to help out and answer questions and of course, read each other's snow reports.
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little tiger, not sure about that, gets very mixed reviews on the internet and doesn't seem to have any medical support. I'm asthmatic too but as far as I know none of my conditions are auto-immune disorders.
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queen bodecia, me neither I thought... but I did have very high levels of pneumonia bugs swimming around in me.... and all is improving after 12 months of treatment
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You know it makes sense.
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Otherwise you'll just go on seeing the one name:
Otherwise you'll just go on seeing the one name:
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Alan R, I do easy fairly healthily. I get lots of healthy veg and fruit etc. I dont drink sugary drinks (appart from the occasional relentless). I wish it was as simple as eating healthily. Before my M.E i didnt drink caffeine but now i drink it to just give me an extra boost to make my life more bearable.
little tiger, Is there any chance you can just quickly sum up what happens on the marshall protocol? Do u actualy take tablets? or is it therapy based? I did Cognitive Behavioural Therapy and that was a JOKE !
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Poster: A snowHead
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Sainter, yeah CBT has its place but they CFS folks I've seen that have used it all agree with you. Unless you've been there hard to understand what the deal is with CFS. From when I was at my worst, I still remember sitting in the shower bawling my eyes out because I could not hold my arms up and wash my hair. Cannot actually remember what it felt like though. Brain blocks out the sensations because they are not good to remember - I know it happened, remember being devastated at my incompetence for daily survival, have no idea how my body really felt.
Marshall Protocol Summary.
1) Get a blood test for vitamin D and vitamin D metabolite - this gives you an idea if it is likely to work. Usually an imbalance in Vit D/metabolite exists.
1a) If you are not sure about 1(metabolite tests can be mishandled by labs) then you can try a test of 2) to be sure
2) Go on low Vitamin D diet. Avoid sunlight. Take Olmesartan 40mg four times daily. (It is a blood pressure tablet but similar to Vit D in shape and can bind at those receptors)
3) Once stable on 2) start taking cycling doses on Minocycline(antibiotic) every 2 days - doses vary through cycles
4) 2 or 3 usually makes you feel 'weird' due to bacterial kill off... no response then unless 1) is very clear forget it
5) Go through cycles on 2) & 3) then when Vit D level is down(most folks have high levels at start) start on cycling doses of Azithromycin(another antibiotic) as well
6) when you get through 5) add another antibiotic - bit variable what it should be
In my case my vit D level was low - despite being in northern NSW sun at a beach resort for 6 months prior. However my metabolite/D ratio was wacked...
I had some blood tests (PCR I think) looking for bacterial DNA done at a university here. Bingo - found DNA for a few species of Mycoplasma and Chlamydia. (We looked for these due to my pneumonia history and severe joint pain from CFS)
Started on 2 - was so light sensitive it wasn't funny... Doctor happy with this - means I will respond he says.
Another blood test - needed the PCR results (that I paid university for) to convince government to do this. Also needed to have done 2) to get immune system working a bit as it is an antibody test. Bingo again - I had 4-5 times the level of Mycoplasma Pneumonia antibodies than if I had pneumonia!
Now up to 6) - will start shortly.
Feeling much better re CFS than I have for a while - can read journal articles much more easily than even 6 months ago. Less 'muddle headed' (brain fog - you know the feeling)
Less long term reaction to exercise.
Asthma gone - used no preventer for about a year. It is spring here and I'm great. In comparison - I've been on top dose of preventer for years - often with other preventers added on, and spring I usually use nasal sprays, antihistamines and whatever else as well.
IBS - again almost settled. I've had this since well before the CFS so I know it well... Very much improvement with the occassional flare when I eat some Vit D rich food ( Ok I forget to check sometimes)
In general - for me at least it seems to have been worth the effort... The downside - the cycling antibiotics flared up some of my CFS symptoms in cycles plus the light sensitivity was a drag. I spent a few months in low light or wearing dark glasses. Light sensitivity mostly gone now. Still getting cycling of muscle/joint pain(one of my symptoms). The rest is settling. I'm looking forward to shedding the joint pain soon. If I stay on the same dose I feel GREAT - better than for years. I can see the joint/muscle symptoms are starting to decrease now. So hopefully not too much longer.
Slow steady progress - worth the hassle to be finally rid of this nasty thing.
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Obviously A snowHead isn't a real person
Obviously A snowHead isn't a real person
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Alan R, You have no idea how annoying that stuff gets when you have CFS. I have avoided preservatives for 15 years - I mostly eat fresh fruits and vegies cooked into food I make myself Very little processed stuff. I went through a diet not long back from a doctor spouting that stuff. No impact at all - because I already ate well. Just a heap of aggravation from trying to avoid, soy, corn, wheat, dairy, and whatever else he thought was 'bad'. I'd love a dollar for every time I heard that stuff from people over the last 15 years.
CFS is NOT simply fatigue despite what the name may suggest. At my worst I would develop "holes" on my leg muscles overnight - maybe 3 cm diameter and 1-2mm deep. This is not usually a 'poor diet' result! Lets not mention the black eyes, tea coloured pee, creamy poop, severe muscle pain, inability to read more than 5 words and understand the whole sentence, constant lost car keys, inability to stand for any time, low blood pressure if I stood too long, constant weakness- dropped stuff and smashed it regularly, poor quality sleep(constant waking), etc etc One of the universities analysed my pee and told me I was metabolising muscle tissue faster than a burns patient.
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Well, the person's real but it's just a made up name, see?
Well, the person's real but it's just a made up name, see?
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little tiger, Im slightly suspcious about MP because on their forums the Phase 1 was everywhere and everyone was saying it was working, but then in the rules section it says :
Phase 2 and 3 members may post portions of their official progress reports edited for general membership/visitor reading or a special update every so often. Do not include the names or initials of the phase 2 or 3 antibiotics.
I want to try the MP but i just imagine its going to be extremely expensive + None of my doctors are willing to help me, because they say "go to ur m.e specialist" and when i do he tells me that hes not willing to try anything, Just to keep PACING -.-
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You need to Login to know who's really who.
You need to Login to know who's really who.
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I can add nothing to this except to say that I feel desperately sorry for anyone who suffers from these problems - it is such a long haul for you to even get to days when you feel just that bit better and not hurting
Good luck to you all and just keep on enjoying life on the days your body lets you
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Anyway, snowHeads is much more fun if you do.
Anyway, snowHeads is much more fun if you do.
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You'll need to Register first of course.
You'll need to Register first of course.
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Oh and re the 'phase 2 & 3' bit of MP... they worry folks will get on the antibiotics without the work up. You can get quite strong reactions - hence why they get vit d levels down etc before they start the other antibiotics. I've seen a lot of folks posting reports of using the 'MP' and getting reactions - their dates don't match if they actually used the MP regime. It takes a lot of time to work through the doses and they cannot have started date X and be up to stage 2 or 3 by Y if they work through it properly. The MP folks do worry that going too fast up the antibiotics could give their doses a bad name.
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