Exercise intolerance , how real is it?

[Tipnatee N]

After tried and tried times and times again with many kind of exercises , I’m now kinda in the jam with exercise intolerance.

From Wikipedia, this is how they describing what causing it.

With intolerance to exercise may be caused by unusual breathlessness (dyspnea), muscle pain (myalgia), tachypnoea (abnormally rapid breathing), tachycardia (having a faster heart rate than normal) or increasing muscle weakness; or exercise might result in severe headache, nausea, dizziness, occasional muscle cramps or extreme fatigue, which would make it intolerable.

Sound familiar ?

For me I usually described to my doctor as hyperventilation, which sometime will also gain panic attack along with it simply because it can. Everytime my heart race faster than usual even just simply walking faster or getting exciting from fast movement of my body. Don’t get me wrong I still do low impact stretching everyday and low impact moving my body parts to keep them away from stiffing enough to keep my circulation going and managing my pains . But I really have to be very careful every step of the way.

I understand how helpful exercise can be for fibro sufferer , but I don’t quite understand why exercise intolerance even exist . It make no sense.

 

[diamond]

i have become the same as you..its a mystery as i was perfectly healthy and fit...then came the pain in 2007...i stayed as active as possible but within limits to keep the pain tolerable....but later became exercise intolerance suddenly in 2015..no amount of pushing resolves this..i just pay with more extreme pain and the symptoms that you describe.

Its really the most horrible feeling totally trapped in a body that is so stiff painful and muscles that get so weak with such little movement that standing long enough to brush your teeth or have a shower is a daily challenge.

Many fibro sufferers find they can push through and it helps their pain..mine is complete reverse..push through even getting my house chores done slowly or too much mental activity makes me feel very ill to point of collapse....in bed for days migraines vomiting total inability to function.

Crazy illness.

 

[Tipnatee N]

I know right? It’s strange .
I was a total super active persons before too. I used to be able to ride bicycle over NYC from down town brooklyn to Central Park and back with no problem. Pretty much bounced off the wall which that’s how my bf used to describe me. Now everyday felt like a game of dodgeball when ever I decided to work on something. I have to get smarter in order to dodge all the unpredictable fibro attacks , but then my brain get hammered by how I over using it. I refuse to feel like a loser , but someday I just felt like i’m stuck the bottom pit.

Describing it to the doctor is like talking to a wall. Each session always ended with “ I don’t know what to tell you” . I don’t think he was that surprised when I stop seeing him over the long period of times. But at least I don’t have to look at his face looking at me like i’m The lost cause till the next time I see him again.

 

[diamond]

Oh yes the look of disbelief from the doctors....the raised eyes brows....that says your exaggerating...no one can feel that bad.

I once told my GP the noise of the TV was overwhelming..she screwed her nose up like i had a screw loose! ( english term for crazy)

 

[Tipnatee N]

Why can’t they dianosed us with something they could believe in ? Like instead of bundle all the crazy symptoms up together and calling it fibromyalgia , just separated every single symptoms so we can see who’s the lazy one.

 

[vickythecat]

I am having such a light bulb moment right now....

I used to be obsessed about hiphop dancing/fitness/aerobics classes starting in my teens and up my late 20's, l used to go to the gym 5 times a week at one point! I loved working out, I had a lot of friends at the gym, we'd hang out afterwards etc. But despite the frequency, I could never ever finish a whole class. Mid-way through the class, I'd get so dizzy, so out of breath. I'd push myself to the point of fainting. My lower legs would shake from the intensity and I always assumed this was normal. And I could also never ever run. I'd ask all the trainers I met (and I met quite a few) how I could not manage a basic 5 minute run even though I was supposed to be fit (hello, 5 times a week to the gym for about 2 hours for years?).

For years, I thought it was me being 'lazy' and 'weak' (oh yeah, there they are, 2 words that ruined my life!), that I was simply not willing to push myself. Then I gave up, I started hating the gym, weight training etc.

Now reading your story, I had a light bulb moment. What if this was part of fibro all along? (though I hate how every single illness can fall under the ever-expanding umbrella of fibro) What if my body also has exercise intolerance? All my friends at the gym, they were so fit, their bodies lean and slim, they'd take class after class, but I never could achieve that. Felt like a loser for so long, but now, I am like, wow...this makes so much sense.

just wow....sorry, I am having such a 'OMG' moment, puzzle pieces fitting in....

 

[Tipnatee N]

I never remember have that happen to me in half mid of already in exercise before, but then again maybe it did in the different form. I just didn’t remember it correctly or thought about . Since it happen to me so fast like a night an day, I didn’t have a chance to grow in to it since my so call ‘ hyperventilation/panic’ mode just blow up after my crazy hospital incident.

After I’ve got out of the hospital I was totally in the ‘no movement mode’ , and my hyperventilation/panic mostly went after my depression like a cat saw a mouse for a very long time. I coundn’t even feel sad properly!

After a while the ‘hyperventilation/panic’ mode went after my sleep disorders and causing me a long term sleep deprivations. I thought it was probably after my crazy loads of nightmares . After a year my crazy sleep disorder was failed to get fix and fully turned in to Non-24 . From then on, it went after my photophobia. While at that it also went after my IBS and my deficiencies. Then the exercise problem with just a few moment causing my heart pounding away too fast like a heart attack.

I have a hard time telling the different between the symptoms because of them. And even now I’m still sorting out of which was what.

I do in fact felt so much better like a hit of the light bulb moment you describe often when everytime I found some understandable answer. Like a load of my shoulder . Knowing that I wasn’t crazy bum to begin with.

 

[diamond]

I thought all fibro sufferers had exercise intolerance? Until i came here ...some do some don't seem to so much....im never sure what is meant by fatigue and exhaustion and for me i say weakness because my arms and legs feel so weak...like they only have between 5% to say 20% power/strength but along with this comes fatigue feeling also.

Its so confusing even though i thought at one point i had it cracked as far as understanding...after 10 years and the last 3 getting increasingly worse i have to say dark depression is setting in.

For me my laptop is my gateway to the world....i can sit on here and communicate a little with you people when truly i can achieve so very little its pathetic...

I hate talking to doctors...its not even thier fault i just feel my myriad of problems overloads them that i can't connect....they are not magicians they only have a prescription pad and things like physio and CBT to offer...and in truth im so sick of being sick and feeling useless.

I spent the morning looking for medical resources to help those with severe CFS/ME. There is no designated hospital as far as i can see in the UK for severe ME/CFS sufferers.

There are a few centres for mild to moderate sufferers where pacing..nutrition and graded exercise are taught...but omg i have taught myself..i feel i am an expert..so where does that leave me.

I am not like others who wake up with spoons that get used up gradually until fatigue sets in..i wake up with no spoons most days...or maybe 2 /3 spoons i have to gather every ounce of oomph to find that get used up making food and drinks and using my lap top and in between feel like i need to rest with my eyes shut.

If i push real hard i can walk a few circles of my living room..but it hurts so much and is like trying to do it in pain that builds and builds and after i had collapsed running a marathon .....but had got up again and pushed myself to walk round the living room....lol then fall into a chair head pounding weak and nauseous.

As far as i can see there is nothing the medical people can do to fix or help this level of illness .....and i feel like giving up.

Maybe I am weak person that i feel so defeated after 3 years like this and 10 years into fibro as i know some have been like it for 30 years....even my family treat me like im weak...and yes vicky this word and similar sentiment from the people i love and trust are the ones that have impacted my mental health and in turn this has impacted the progression of my illness severely....then more impact on my mental health ...anxiety and eventually depression as i can feel myself getting more and more unwell and loosing any semblance of normality i had managed to retain for those first years...and that was challenging enough.

 

[Tipnatee N]

I wonder Diamond ,

Because of many controversies about fibro being between mentally disorder or physical one. Even though they gearing toward physical problems more and more, it’s still have a strong hold in mental disorder. And while we still are very sane which making impossible to be catagorize as crazy, maybe our body doesn’t view us as one? Could it be that the idea of fibro having a new set of brain doesn’t applying just pain intolerance but controlling our physical decision as well?

I felt like my exercise intolerance is behaving like a bad heart problem person. I felt like my body believe that everyday I’m dying on something while I absolutly do not. I’ve found my self arguing with my body everyday, I starting to believe that I’m going insane my self. I felt like most doctors are looking at fibromyalgia like it’s an alien world where they have no real interest in fixing, more like observing and studying it maybe. While we are too exhausted to go on living. And you are right Diamond, I’m too, feeling like I’m starting to know more about it than some doctors them self. Which is kinda scary thought since it’s mean that i’m running out of help.

I want to look for how to live like crazy bum productively , maybe getting in the mind of a real crazy bum might enlighten me on how to enjoy life for once. Maybe I’m done fighting it. Do you think there’s a possibility that a reverse psychology might work on my fibro brain?

 

[Pegleg84]

This is interesting. I was never super active before this, in that I didn't play sports or jog or anything. I can walk a lot. I like hiking, swimming, skiing, things that are relatively steady and don't take a ton of energy at once. I always though my lung capacity was just too low to handle anything more. The only times I run is if I need to catch a train or something, then spend 20min recovering. Lightheaded, pain in chest/side, hard to breathe, etc etc. Always figured it was just cause I was out of shape, but maybe I couldn't get IN shape because of this limitation. Of course, I was also dealing with undiagnosed Celiac until my mid-20s, so anemia could have contributed. Not sure if exercise intolerance would be the best description, but obviously something is going on that prevents many of us with fibro from getting past that wall.

In any case, right now I'm doing aquafit a couple times a week, and taking it pretty gently, working more on muscle strength and stretching rather than cardio. Can't tell if it's helping much yet, but it's fun and I don't seem to be dead the next day. I used to be able to walk for hours, but now have to pace myself and get on and off transit a lot more. Even doing too much around the house can land me on the couch the next day. And hell yes it makes you feel weak, or lazy, or unmotivated, and guilty, and all the rest. Good to remind ourselves that this is normal, for us. This is how it has to be.

As for the psychological aspect: of course there's a psychological aspect! I don't think that's necessarily what causes fibro (other than trauma), but dealing with all these symptoms and limitations would drive anyone to depression, anxiety, feeling crazy, etc. Tipnatee, with all you're going through I can't imagine how hard it must be not to just have a complete breakdown. But you're right, sometimes it's better to accept facts and learn to work within them instead. It might be all in our brains, but it's not all in our heads.

 

[Tipnatee N]

Much appreciated your input Peglegs84 . I'm really hoping it's not ALL in my head too , cause it's startng to look like that's all there is.

I have very good lung do to the fact that i was a competitive swimmer. Even with exercise intolerance i can still able to hold my breath longer than what i should be able to do. But that's all i can do and yet it isnt what i should be doing either. Not after too many hyperventilation , cause now must learn how to exhale more than inhale.

 

[Marvis]

Wow Pegleg!!! " I always thought I had low lung capacity' are almost exatly the words I've been using lately. I was never able to run either. I just couldn't breathe. One summer as a teen, I tried to train to jog and really concentrated on the breathing and it just never got easier. I went to unversity to study vocal performance (singing) and I was considered one of the top two in my program, but the one thing I just couldn't improve was my breathing - just couldn't handle those long phrases in one breathe. And of course sick all the time through school years.

I remember exercise hurting. I remember volleyball just being excruciating - that ball was so hard it felt like my bones were breaking. Running was painful.

But. yes, I could hike and walk for hours. Slow and steady.

I've been reading some about autoimmunity and exercise tests and testing down by a Dr. Systrom (Health Rising website and article titled Exercise Tests Suggest Autoimmunity Causes the Exertion Problems in Chronic Fatigue Syndrome which I think is suggesting that because of issues with how our blood vessels move blood around our bodies, our muscles don't receive enough blood and oxygen. Hmmm... not sure, have to read it again because it's disappearing in the fibro fog. But it made a lot of sense to me.

 

[Tipnatee N]

Actually from what i've seen in here. Most people here seem to suffer from to little blood oxygen .This is where it's confusing to me.

I don't know if my blood oxygen started out low or high at the begining, unless i get hook up to the oxygen reading while exercising there's no way of knowing. Maybe it did started of as very low too, who knows.

 

[Marvis]

i think his testing showed that exercising, which should cause an increase in oxygen in your blood, in fibro and me patients actually decreased - which is why the exercise would be so fatiguing.

 

[Lubkos way]

Well,I have wondered if I had managed to break the exercise intolerance curse.When I read all your posts,I almost thought that I was past an important milestone.October 1st was the first day of year six of working out every day at home,doing core strength building yoga and strength training using only my own body weight.I must say it has been unbelievably hard and painful!Let's say,when I started I did 3 sets of 7 pushups(one of my exercises).I am now up to 3 sets of 25 and on a good day I squeeze in a fourth set.The way I did it,was to expect the pain,and since I was in agony anyway,embrace it.I too spent many hours in the gym during the nineties,and would always take 4 or 5 days for my muscle groups to recover that I worked out.As difficult as it is,if I stop for one day,I have worst pain.For me,the pain feels normal now,and the thought of stopping scares me.I have had no help or support from anyone,90% of my relationships have gone to hell!The only thing that keeps me going is that I am making significant progress in figuring this curse out.You are right to say,you have no use for most doctors,since I too have not gotten any measurable relief from the meds and so called experts.That is why I joined this forum,I want to hear from people who understand where I am coming from.I have been working out a treatment plan,which has helped tremendously,with only my own experience to guide me and much research.My pain levels have dropped dramatically!I will share what I have learned with you all,I promise,but only after I am sure! It will be shared by the latest,December 1st.There are no pills involved in this treatment