Old 10-12-2017, 09:54 PM #61 (permalink)
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Default Re: Exercise intolerance , how real is it?

I am hoping some members can offer some advice for you to begin an extremely low impact exercise routine.I am stumped on giving you advice that would help you to start.I must say unfortunately,that the reality of not moving for years will atrophy your muscles and virtually guarantee increasing weakness and pain levels.The longer you wait,the harder and more painful it will be to get back to yourself.You will be in pain whether you exercise or not,but the idea is to go to the point where you know when to stop,so as not to provoke a flare up.You will learn where that line is over time,and I am sure you will cross it occasionally,I have.Their is no painless solution as far as I know.I will continue to think of a solution,I hope you do too!
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Tipnatee N (10-13-2017)
Old 10-13-2017, 01:36 AM #62 (permalink)
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Default Re: Exercise intolerance , how real is it?

I think you and i have ME/CFS too Tipnatee that's why we are different. Its impossible to understand unless you have it that tiny amount of exercise makes us worse indefinitely...not the usual recovery period of a day or 2.

Sadly that also means our muscles do weaken over time on top but that's not our fault for not trying because we have caused a flare and then caused a temporary set back from over doing its because so little is overdoing it.

I didn't have the CFS part to this degree at the start of my fibro journey so i know the difference. I could walk for an hour and just hurt ..this is a whole different thing.

Exercise intolerance is a real and debilitating situation to be in......zero or very few spoons like you say.....spoons that if you have them are used having a shower and then you don't have the strength to get dressed and can only lay down and try to recover from the exertion....or reading or using a laptop is exhausting then you need to rest in silence to recover...with the pain building too as a consequence.

Your mouth muscles tire talking and you loose your voice after a few sentences and struggle to eat sometimes because your muscles barely have strength to chew or swallow.

The more you push the worse it gets both loss of strength and pain until the jaw starts to seize up.

My fingers and wrists are constantly exercised from typing and general things like making meals and drinks but they don't get stronger and more able to tolerate the things i do they just get more painful and stiff as the months and now years go by.

This is the best example i can think of to show we don't give up or stop using our bodies then they become exercise intolerant as a result..although long term its bad for the muscles true strength the way most people understand it including doctors and even myself.....we are intolerant because we don't have the ability because of an illness that takes away the muscles own tolerance to be used and cant for some reason be fixed or tolerance built up more and more by exercising and use...yet at the same time we have to keep trying or we become more and more disabled..muscles atrophy and bone density is lost...so a very scary place to fight from.

Yet we must fight somehow but with a bleak future which affects your mental health too with repeat failures to improve the situation.

I also feel somehow its my fault...when did this illness switch up gears ...should i have fought harder and pushed harder..then i look back and know i did ...i didn't choose to suddenly become exercise intolerant it just happened somehow.

I didn't suddenly get more afraid of pain id been living with for years or stop knowing how to pace myself between enough exercise and too much...everything i did suddenly switched to too much and i could barely get to the bathroom and back to the bed.

My heart races too Tipnatee with movement.

Im not sure if anyone else can identify with this...or feel their illness progress or change long term rather than a flare.

Last edited by diamond : 10-13-2017 at 01:53 AM
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Old 10-13-2017, 03:47 AM #63 (permalink)
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Default Re: Exercise intolerance , how real is it?

Thank you Diamond for every bits if your kind thoughts and words. For a while , while my fibro was being diagnosed I often thought I might have ME/CFS judging from it's behavior it looks more than just fibro too. But My doctor stop all the test once he was sure that I have fibro then everything are fibro to him from that point on. No more convincing otherwise.

Anyway Diamond , I don't believe not trying hard enough at the begining meant it was your fault . Cause you can't get your condition from being lazy at the beginning. It's not like healing wounds or healing breaking bones from accident. It's not visible dammages that if healed wrongly you wont get chance to correct it. If you know what i mean. . It's very different.

It's very hard to wrap my head around no improvement cause as I said somewhere in this thread, when I lost my house and was evicted from my home . As crazy as it was , but once I managed to moved all my things to storage and checked in the hotel stayed and finally rested while being a completely homeless . I had a sudden burst of energy break ( it's funny that to us 'breaks' meant lots of energy and ability to works) I was out shopping for nessasary stuff which I wasn't be able to do before. I was walking for more than 4 blocks in manhattan . And that to me was the most beatiful freedom I have ever seen from me. I was out in the sun! OMG I was at the truly blissful sight that haven't seen in many years than i cound ever describe in words. My SPD was not even bother me that much at all ,sure sensitive eyes ears voice and balance maybe but it was so minor to me it didn't even matter. I was able to walk out the door by my self without any help that was the best thing that ever happen to me.
But after the month of moving from hotel to hotel with my bf . I was finally exhausted and every stiffness and pains and panic starting to reap my body of joy , that's when my bf sent me to his mom in CT . And That was my last free moment of my body in the real world.

Lubkos way , I still do like to move it move it and haven't stop moving. Just because I have excercise intolorance doesn't mean I don't move from bed ever. Sitting still hurts!!!

I do alots of things ,I love cooking things from scratch although standing is very limited for me cause my legs kept shaking like a leaf in the wind ( a cane and a tall chair with wheels are my life savior ) , I love crafts DIY stuffs , I do short dog walking , I still streching as much as I could while on the bed cause it's a less danger zone. Caused if I do not move it move it I will suffer from more stiff pains and poor circulation and thus another problems on their own. So every bits of movement I do are also made for the sake of my body. So I can not sit still for a long period of time cause that's when the pains settled in. Even typing on my iPad kept my fingers blood flow. Although my SPD is making my eyes felt like it kept get crossing ( it's not physically crossing at all i checked) and the words vitually often jump right at my face so much so i have to close one eyes and keot switching each time I read or type. Every small things I do is equally feeling of a real big movement exercise. Even if to you it doesn't.

So please don't think of me as someone who refuse to move. Sure I'm always doom when I do, but I also doom when I don't.

Last edited by Tipnatee N : 10-13-2017 at 04:16 AM
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Old 10-13-2017, 04:10 AM #64 (permalink)
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Default Re: Exercise intolerance , how real is it?

It sounds like you do really well Tipnatee...i try too...yesterday i walked around my large living room as many times as possible and did a small amount of house cleaning which is bending and stretching....i swing and rotate my arms ...and move as much as possible to keep blood circulating.

How far do you walk with the dog...this is good news..i so miss my outdoor walks...well done.

Last time i took a walk around a block i got stuck and couldn't get back!

May i say i think maybe the adrenaline from the stress from the house eviction gave you a burst of energy that temporarily made you soo much better and reduced all your symptoms...then more and more stress switching Hotels and all the uncertainty and fear for your future and complete collapse followed.......so too much trauma finally burning out your system.

This is exactly how my fibro changed ....more energy from a period of very high stress...i felt amazing and could walk and keep busy for hours..... that lasted about 2 weeks then complete collapse because the stressful event i was going through got worse .... then the collapse of my body became more or less permanent.

I never went back to my previous level of exercise tolerance however hard i tried. There were a few better times but overall it was a downward spiral.

Does that seem to fit for you?

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Old 10-13-2017, 06:16 AM #65 (permalink)
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Default Re: Exercise intolerance , how real is it?

Oh yes , you really hit it right out of the park there Diamond. (or what would be the saying it UK, I'm not sure)

As far as walking the dog.. well the dog is 17 year old so we can only walk around the small little house that I'm staying in just enough to do her businsses . I shouldn't even call it a walk. But there's a little pond behind the house so when the weather is right and I get small burst if energy I usualy take her around there . Comparing to street block in manhattan I think it's epuibalance to one street block maybe.

That's why I'm sometime think exercise intorarance it's more mentally than physically fix. If we could manipulate our adrenaline in someway. Maybe just maybe we can get our life back and exercise again.

I posted about the used of Kratom leaf and Coca tea for this specific treatment , but because I haven't try it yet ( and too awkward to order them in this address) I don't have much prove on my own yet. But it's sound promising.
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Old 10-13-2017, 10:14 AM #66 (permalink)
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Default Re: Exercise intolerance , how real is it?

I hope that none of you think what I wrote was a criticism of you,or your efforts.I am sorry,but it was not my intention at all.I was trying to help and offer remedies that worked for me.I guess I should express my thoughts with more sensitivity,and I will make the effort in the future.As I said,I am sorry for any hurt feelings!
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Old 10-13-2017, 10:33 AM #67 (permalink)
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Default Re: Exercise intolerance , how real is it?

No not at all. Im sure all your advice may help some people really well and is valued. Please don't worry or stop contributing. It's all a learning curve even on a forum ...the variety and levels and differing symptoms this group of illnesses can create.
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Old 10-13-2017, 10:55 AM #68 (permalink)
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Default Re: Exercise intolerance , how real is it?

Lubkos way

I've found you to be very sweet and very kind ( not to mention romantic )
Don't ever doubt that for a second about your self ok? Having you on this site is very much a blessing , not to mention being a voice fo many men with fibro suffering out there.

You have not yet done any thing wrong according to my book . I very enjoy reading your thoughts and progress every each one of them.

Don't worry if you ever say anything bad , someone will let you know very kindly here. I have faith in all fibro lovely wonderful mind , even at their beakest hour of hope, or even at the warp state of mind. We are too understanding and too tired to ever get angry at anyone for long. The spirally state of mind just too scary to stay in.
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Old 10-14-2017, 05:26 PM #69 (permalink)
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Default Re: Exercise intolerance , how real is it?

I agree with what Lubkos Way has said about exercise. He speaks the truth, most especially what he said about getting out of bed in the morning no matter how you feel and doing something that gets your heart beating and your breath going.

Personally, I am utterly convinced that if you do this *outside* it makes it 100% better, and more effective.

Just go outside. Do something. Anything. Focus on what you can do, not on what you cannot do.
Don't say to yourself that you didn't accomplish something today.
Do something....anything....and tell yourself Good Job for doing it.
Then do it again the next day.
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Old 10-15-2017, 07:43 AM #70 (permalink)
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Default Re: Exercise intolerance , how real is it?

Thanks Sunkacola . I'll try that even if allergies would kill me. I swear i will go outside more!
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Old 10-15-2017, 10:29 AM #71 (permalink)
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Default Re: Exercise intolerance , how real is it?

Nice to see you sunkacola.
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Old 10-15-2017, 03:10 PM #72 (permalink)
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Default Re: Exercise intolerance , how real is it?

thank you, diamond.
nice to see you too.
I have not been here much because I was being harassed and it's just not worth it to me if that is going to happen. thought I would come back and try again.

I do hope that somehow you can find a way to get outside and to get some movement going in your body. I am truly convinced that if you can just build up a tiny bit of strength, it could turn the corner for you completely.
It does that for so many people.
Anyway, this is what I keep envisioning for you, diamond. And I send you good thoughts and encouragement. Please don't ever give up.
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Old 10-15-2017, 03:21 PM #73 (permalink)
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Default Re: Exercise intolerance , how real is it?

Thank you for this discussion. Iíve been so depressed about exercise avoidance. I never liked it but could deal with at least a treadmill. Just today I unloaded the dishwasher and cleaned my kitchen. My mid back hurts so bad that I have to sit and then try again. Hired a personal trainer and thought it would help. I usually felt worse and my legs would shake so bad I couldnít do it. Iím overweight and worry about my health. My eating habits are much healthier and I lost 25 lbs. but without exercise I am not seeing results. This sucks.
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Old 10-15-2017, 03:33 PM #74 (permalink)
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Default Re: Exercise intolerance , how real is it?

Slkcal......this is just a suggestion, but it could make a difference.

If your mid-to-low back is hurting, that means you really have to work to protect it no matter what you are doing. The best way to do that is to try never to bend over with a curved back when you are, say, unloading the dishwasher. How to do this is simple: stick out your bum as far as it can go. I know that sounds crude, but seriously, if you do that your back will not be engaged, and will remain flat, and won't be as likely to hurt. I do this all the time, no matter what I am doing, every time I bend over. It makes a huge difference.

Same thing when you are picking up anything.....anything at all, even a little thing....from the floor. Do it the way weight lifters do: squat down, then tilt your head back as far as you comfortably can and look at the ceiling, and keep your head that way as you come up again. this forces your back to stay straight and makes you use your legs instead of your back. Your legs will really feel it (which is good....they will get stronger).

Most people use their backs wrong and use them for things that really the legs should be doing. If you always keep in mind to protect your back, no matter what you are doing, it will change things.

the other thing is: stretch out your hamstings (the tendons in the back of your legs). The more stretched out and limber you are, the easier it will be to protect your back.

As for not seeing results....don't give up. It takes time. If you give up you defeat yourself. If you keep at it and praise yourself for doing each little bit you will see results in time. The reason you felt worse after working out is you are not used to it. Keep at it and your tolerance and strength will build.
Best of luck.
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Old 10-15-2017, 08:17 PM #75 (permalink)
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Default Re: Exercise intolerance , how real is it?

Diamond and Tipnatee have you heard of the movie Unrest? It's a documentary about a woman, Jennfer Brea, struggling with ME. She filmed the entire thing from her bed, interviewing other sufferers around the world who were also bed bound. I haven't seen it yet, but she winning a lot of awards for it. I think it's available on itunes now and if you search it up, I'm sure it will be more widely available soon. She mentions being told her illness was 'all in her head' so she forced herself to walk all the way home and ended up bed bound for a very long time. I'm looking forward to seeing it. I think there's definitely a difference there. With fibro, I can still push myself a little, I can exercise a little and if I over exert, I can recover with extra rest. It hurts all the time, but I can do it. I think ME is different.
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