Post Exertional Malaise..... (ME)

Salkeela

I really can't "exercise" in the old way I used to. I was never a gym bunny, nor a runner, but I could have walked, gardened or ridden horses for hours, with out thinking twice about it. I also had a busy job teaching, and an active life that I loved.

Long story short, in March this year, my world changed.

Although I am having ongoing tests, it seems I have ME (Myalgic Encephalomyelitis) which some doctors call CFS (Chronic Fatigue Syndrome). My main problem is the after effects of any exertion. I am very aware that I could be much worse (I am not house nor bed bound like some sufferers of ME.)

So I need to do very little - "Only 60% of what you can sustain with out inducing a crash" - as my consultant has told me.

However I want to keep a little trim, and take some limited exercise to keep my body somewhat in shape. It's all got to be low impact, or low heart rate stuff.

I do gentle walking with the dogs - usually only up to 15mins max. Yesterday I went for a "swim" for the first time, although really I just floated about a bit and spent more time in the sauna, jacuzzi and steam room with my friend.

I was wondering if anyone else is in my situation here? How do you cope? Have you tried Pilates? Do you also find you must eat very little in order to keep your weight steady? I think I'm now eating half (or perhaps less) of the cals I used to eat at maintenance.

Anyway... nice idea for a group. (And I LOVE the positive picture used for the group image.) I look forward to some chat on here.

Ambermarigold

Hi Sal,

Just read your post above. That sounds like a tricky balance to meet.... Exercising and eating without causing yourself a set back by over doing things. I don't have a diagnosis of ME / CFS, but the effects of chemo, radiotherapy and medication do cause chronic fatigue for years. So I do have some understanding about how you must feel.

Yesterday was one example of a not so good day for me. I went to the hospital for treatment in the morning, (dropped off by my husband). I then caught the bus a short walk away, into town. I had another slow, short walk from the bus station to meet my husband. However, by that point I was almost tripping over my own feet and falling asleep where I was sat waiting for him to join me. The plan was to go round town for an hour and return home by car. But in reality this wasn't possible. He had to go and collect my wheelchair from the car and push me round instead. I returned home and dozed for 2 hours on the sofa, had a stinking headache all day and and ached all over! It's not ME, as I say but it presents itself similarly..... so much so, my husband is concerned at times that the trauma of so much in such a short space of time, HAS actually caused me to develop ME. Though I'm not so convinced. It seems pretty typical for cancer patients given the same treatments.

So, as for the exercising......well I just listen to my body. I get good days and bad.....(and VERY BAD, lol. Though generally only when very run down or ill.) I like to go walking over the fields near us, occasionally I use my Lebed exercise video - designed for lymphoedema patients like myself. I also use my exercise bike. But only when I feel fit enough to do so. Sometimes it's a huge struggle to do 10 mins and other times I can do about 45 mins. Even on good days, this doesn't always go to plan as I often feel stronger than I am and then have to deal with the consiquences - like yesterday! I should've known not to trust myself after having woken in the night. Disturbed sleep often wrecks the next day, energy - wise! I love gardens and gardening too......but this is very limited for me now as my garden has little in the way of raised areas. So reaching is very hard and it inflames my joints if i do sretching etc... I'm also looking forward to starting swimming again, next year.

Amber

Salkeela

Thanks for your reply Amber. It is so hard to adjust to "being" a different person. It's all about compromise in my experience. Tough on everybody around too.

I've heard that chemo can be very like the effects of ME - not something I would wish on anyone. Hope you haven't developed ME too on top of your cancer fight.... really hope that time will bring your energy levels back, and that will let you get back in the water too. I really loved just being able to float about again.

My friend has joined a gym, and got a free "buddy pass" which she gave me. It lasts for 2 weeks, but I think ultimately I will join. Getting out will be good for me - and make it easier for my friend too, because meeting some-one is always the best way.

I was out today - so I'll be resting up tomorrow

Ambermarigold

Thanks for your reply Amber. It is so hard to adjust to "being" a different person. It's all about compromise in my experience. Tough on everybody around too.

I've heard that chemo can be very like the effects of ME - not something I would wish on anyone. Hope you haven't developed ME too on top of your cancer fight.... really hope that time will bring your energy levels back, and that will let you get back in the water too. I really loved just being able to float about again.

My friend has joined a gym, and got a free "buddy pass" which she gave me. It lasts for 2 weeks, but I think ultimately I will join. Getting out will be good for me - and make it easier for my friend too, because meeting some-one is always the best way.

I was out today - so I'll be resting up tomorrow

Hi Sal,

That is sooo true!! It is very tough. Chemo is horrendous and very individual. No two people with the same cancer and same chemo type even appear to experience the same side effects. It's always a case of 'wait and see'. But the level of fatigue inmy case, kept me in bed for 10 days or more each cycle. I couldn't even hold up my legs to stand. My husband had to support my weight entirely.

There is so much I have mentally and physically had to adjust to in such a short space of time. I was fit, healthy, active, busy, had 2 jobs and all that has changed in just 2 years. Phyisically I have huge surgery scars, have to inject myself daily so am covered in bruises, have chronic nerve pain in my mastectomy area, chest, arm and back, have lost my hair and had it grow back different and have put on a huge amount of weight that I now struggle to shift due to the medically induced menopause I'm now in and arthritic pain which also means I walk with a stick! This is the greatly edited version too.... for fear of boring people! I'm slowly finding the 'new me' though and doing my best to like me.

But the change doesn't affect just me does it? My husband is married to a different person, even though I am also still me. He's now also my carer and chauffer and admin and gardener.... Physically he's adapted better. Emotionally he struggles a lot more.

How great to be able to use a buddy pass!! Hope you have fun with that. I agree, exercising is much more fun with someone else.

xx

Salkeela

Big hugs Amber... you really seem to have drawn the short straw.

I've a friend who did the whole mastectomy and chemo thing two years ago. Chemo was terrible for her - so much so that the doctors advised her to stop before the final two cycles. Yet she seems to have come back to some health afterwards and has been travelling around Europe showing her dogs. I've no doubt some of that is a struggle for her and that there are compromises with how she does things, but she is able to go which is great. I admire her spunk.

The continued pain at your operation site is frustrating.... is that like a sort of fibromyalgia response?

It's so frustrating when doctors tell you there is nothing more they can do.

Sending hugs your way - and a bit of determination (via the cyber waves) to help you get your weight back under control.

miracle4me

I really can't "exercise" in the old way I used to. I was never a gym bunny, nor a runner, but I could have walked, gardened or ridden horses for hours, with out thinking twice about it. I also had a busy job teaching, and an active life that I loved.

Long story short, in March this year, my world changed.

Although I am having ongoing tests, it seems I have ME (Myalgic Encephalomyelitis) which some doctors call CFS (Chronic Fatigue Syndrome). My main problem is the after effects of any exertion. I am very aware that I could be much worse (I am not house nor bed bound like some sufferers of ME.)

So I need to do very little - "Only 60% of what you can sustain with out inducing a crash" - as my consultant has told me.

However I want to keep a little trim, and take some limited exercise to keep my body somewhat in shape. It's all got to be low impact, or low heart rate stuff.

I do gentle walking with the dogs - usually only up to 15mins max. Yesterday I went for a "swim" for the first time, although really I just floated about a bit and spent more time in the sauna, jacuzzi and steam room with my friend.

I was wondering if anyone else is in my situation here? How do you cope? Have you tried Pilates? Do you also find you must eat very little in order to keep your weight steady? I think I'm now eating half (or perhaps less) of the cals I used to eat at maintenance.

Anyway... nice idea for a group. (And I LOVE the positive picture used for the group image.) I look forward to some chat on here.

I have ME (Myalgic Encephalomyelitis) CFS Chronic Fatigue Syndrome combined with Fibromyalgia other health issues that does keep me under bed rest. I wish I had heard the wisdom your Dr. gave you, instead I pushed my body to where I cannot push it anymore.

Salkeela

Hi miracle4me.

Love your choice of name! How apt. Sorry to hear of your troubles... it's not a fun diagnosis. And sorry you didn't get the care you needed early on.

I count myself lucky that I am internet literate because my early reading around the subject led me quickly to the "don't push yourself whatever you do" advice. The doctors didn't give me that advice until 6 months into my illness.

Having said that I eventually found a lovely young GP in our practice who told me I'd worked for years, and now I needed time out to recover. She wrote me the first line that was longer than a couple of weeks, and I'm very appreciative of her, and always ask for her by name now.

The 60% advice was still a shock, and means I now really do quite a bit less than I was attempting before, but I've had no further crashes and surely that must be something.

Hope to day is good one for you.... xoxo

Ambermarigold

Big hugs Amber... you really seem to have drawn the short straw.

I've a friend who did the whole mastectomy and chemo thing two years ago. Chemo was terrible for her - so much so that the doctors advised her to stop before the final two cycles. Yet she seems to have come back to some health afterwards and has been travelling around Europe showing her dogs. I've no doubt some of that is a struggle for her and that there are compromises with how she does things, but she is able to go which is great. I admire her spunk.

The continued pain at your operation site is frustrating.... is that like a sort of fibromyalgia response?

It's so frustrating when doctors tell you there is nothing more they can do.

Sending hugs your way - and a bit of determination (via the cyber waves) to help you get your weight back under control.

Hi Sal,

Thanks for your reply. I don't come on my laptop regularly, so didn't see this message until just now. I usually view via my mobile so only get the basic MFP page.

I've heard of Fibromyalgia before, but not seen much about what that means and actually covers. So I went on a website for people with Fibro. It's remarkably similar to a lot that I'm experiencing......and even covers a few things (like jaw locking and vision problems that I can't really explain). But my pain is definitely joint related arthritis with muscle fatigue and tender points ( coccys / tail bone, wrists, heals, jaw, ribs). perhaps if my condition continues long beyond the end of all my treatment, then I imagine a reassessment of the diagnosis may be required, but at the moment it's thought to be an abnormal brain signal response to pain and arthritis due to medication and chemo. How it feels though, does sound quite similar.

It's great to hear your friend is getting some normality back into her life after such radical treatment. Having had a similar journey, I know that travelling abroad will probably taken a great effort and adaption. I hope her situation and future is good.

xx

Veggiesexercise

So sorry to hear about the cancer Amber. My mother died of stomach cancer many years ago. After her stomach was removed she could not eat very much. The chemo made her so sick that the little she was eating came back up. I would think concentrating on eating healthy to get your strength and energy up while you are poisoning your system to get rid of the cancer should be a priority you could discuss with your Doctor.

Fatigue really is not fun. A major issue for me with M.S. is fatigue. At times I just lie in bed thinking about everything I want to be doing but am too tired to do. There are even MS support groups called "But You Look So Good" Unless the person has a cane or is in a wheel chair people do not seem to understand the disabilitating level of fatigue that is being experienced. When you have an invisible illness people tend to not believe you even when you try and explain. Getting a little more exercise is helping me but tracking my food intake while I was on vacation was impossible. Although my husband and I will try and get back on track now. We did not eat desserts but the margaritas may not have been our best options. New Mexico was an area of the country we had never seen before. I rode a horse for the first time but After 1 1/2 hours of riding my legs were frozen and I did not think I was going to be able to get off. I had heard that Anne Romney was using horse therapy for her MS which I laughed off especially being I am not of the same political philosophy. However, on the airplane ride I was reading an article in Time Magezines Alternative Therapy Issue and it explained that riding a horse mimics walking as the horse's gate also stimulates nerves used for walking and helps with balance issues. I need to find some exercises to work on balance. Taking a shower exhausts me so I am trying to better manage my timing so I can still work.

Ambermarigold

Hi Veggie,

I'm very sorry to hear about your mother's death. How very sad and traumatic for you and your family. Chemo is horrendous and hope I never require more. I'm currently on Hormone Therapy and the side - effects are 'a doddle' in comparrison!! Even though that now means I've been in a premature and permanent menopause since age 38, am fatigued and severely physically disabled as a result. Luckily time is my own at present. I don't have children and I can plan my day much of the time...Well except for the appointments which rule my life a great deal of the time! I don't have a job now because of cancer treatment so I can rest a lot if I need to. This puts me in a better position than most with fatigue due to cancer or ME.....So I feel very fortunate.

However, the problem with it being an invisble illness, is not one that's as easily accepted. It is so frustrating at times. Especially in public places as people will be so inconsiderate! I now use a walking stick at all times and have applied for a prescription wheelchair through my GP in the past week to replace the loan one, So I now am more visible than ever.....But I've been there and it's very annoying. Upsetting too.

Having physical aids to help comes with it's own problems though less often, I find. I had a particularly rude woman sit next to me on the hus the other day. She huffed and puffed soooo much and all because I was a young person (with a stick) sitting in the seat reserved for people who are 'elderly, disabled or have difficulty standing'. So it was perfectly OK for me to sit there, but she resented it!!Though she could walk at five time the speed of me without any aids.....as she demonstrated when getting off the bus!

Food - wise, I understand the problem of recording what I eat and trying to maintain a healthy weight. I also went on holiday recently. I put on 3 lbs over the weekend - That's 1 lb per day! I set my calorie intake as 'sedantry' but find even then, that it's very hard not to eat more than I apparently need. Plus I love sweet stuff and they are still hard to resist. You are doing really well though - 12 lbs is excellent progress!!

Amber xx

Veggiesexercise

yes, I was surprised I had lost 4 pounds over vacation the last time I had taken a trip this year I gained 4 pounds. I love desserts and bread but I decided to eat the food I wanted but without desserts and bread. The class I am in for diabetes prevention is really helping. We talk about what is going on with us every week and look at the challenges we face. It is a sixteen week group and then we meet once a month for the next 18 months. It makes you very conscious of what you are eating when you are eating it. Plus increasing my exercise is helping. It is not a huge increase but compared to being sedentary for me it is making a huge difference. My husband has even commented on how I have more energy.

On the issue of invisible illness a few weeks ago I was in line for a major event in town that wrapped around buildings and down the street. A line watcher then informed an older man in front of me with a cane that there was an ADA entrance, Americans with Disabilities Act, so I also followed the man and his family all the way back to the front of the line. I then got in a much smaller line. However, I was getting to the front of the line when another person working there asked me and my friend who was with me to step aside as they brought in a person with a wheel chair and his entire family. By then I was so exhausted I ended up bending down and resting on my knees without actually touching the floor as I had on a suit. They just do not get it. A person without a wheel chair with a disability should be assisted before the person in the wheel chair as we are using every last bit of energy to stand and I am sure my anger inside made my situation with energy worse. However I was very glad to have used the ADA entrance as I probably would not have made it had I stayed in the longer line. Getting to hear the President of the United States in person was such a privilege. He has done so much for civil rights and now healthcare that he will be well remembered in the history books.

Ambermarigold

WOW...... You got see / hear the President??? What an amazing event and Ican only imagine how much effort it took for you to stand for so long!! Congratulations on having the confidence to step forward and join the other queue. I can only manage 10 - 15 mins on my feet, if stationary, i.e. in a queue. Well worth all that waiting though by the sound of it

Managing the diabetes sounds very hard work. I admire your self control!! I know I would be utterly miserable if I got such a diagnosis. All the foods I crave are on the forbidden list, LOL My mum is type 2 and I know she struggles to manage her's, although I believe her situation is made considerably harder by having Bi Polar disorder too. It alters her self awareness, her self control is diminished and her wish for risk taking increases. This last for weeks or months sometimes and during those times she's much more consumed by things other than Diabetes unfortunately.

Veggiesexercise

Amber, I do not have Diabetes I am what they call pre-diabetes. So if I lose weight and reduce my fat intake I can prevent the diagnosis of diabetes. Being diabetes runs in my family I am at higher risk and my blood sugar was higher than it should be. I do not want diabetes on top of having MS. That combination could be a real disaster. Yesterday was Thanksgiving, with Turkey, dressing and all of the food typical for Thanksgiving dinner. I tried hard to reduce that fat content and sugar of the desserts. I made Pumpkin Bread with 1/2 the sugar it called for and unsweetened apple sauce instead of margarine. I made a no sugar apple pie with Golden delicious apples and apple sauce. it was not bad, actually pretty good. if you use sweeter apples instead of the tart Granny Smith Apples it taste better. Tomorrow will be the test when we get on the scales at our class. Let you all know how that goes. I did slow walk 15 minutes and 11 minutes on the stationary bike to try and off set it a little. I need to find some balance exercises as I just made up my own but it would be good to find some actual approved exercises. Just doing a little bit at a time is allowing me to go a little longer as time goes. 5 minutes on the bike has now increased to 11 minutes. I hope you are getting your plan of action to help you regain your strength.