Old 10-07-2017, 04:34 AM #16 (permalink)
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Default Re: Exercise intolerance , how real is it?

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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.
That would make much sense , maybe decreasing oxygen is the main trigger for my hyperventilating/panic problems , sadly it went overboard with oxygen every time it happen. ... I cant help but think if it wasn't so painful with other excruciating problems that also comes with same fatique and mscel weakness , i might as well trick my self to hyperventilate then use all those oxygen up to go run A few laps .

But on that note , I wonder what happen to the claim of hyperbaric chamber oxygen therapy being the cure for all fibro? I still seeing some promotion, but too expensive without clear view of how many session would I be spending for. Anybody here have tried it yet?

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Old 10-07-2017, 04:51 AM #17 (permalink)
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Default Re: Exercise intolerance , how real is it?

I have heard of hyperbaric chamber but dont know of anyone who has tried it..i dont think there is any instant cure or we would all know about it...but finances allowing i guess anything is worth a try.

I do think the downward spiral of anxiety and depression which is both understandable but if exacerbated by too many negative and emotionally painful life events on top of trying to keep on top of fibro pain and fatigue already can mean after a prolonged length of exposure to both at severe end we can get physically much worse.

I always have concern for people under high stress .....like vicky is now caring for her mother...this is a huge demand when emotionally and physically we need to care for ourselves..yet by nature many with finro are the most caring and its impossible to say no and leave someone we love to suffer....so we suffer instead and others dont even know or have any idea how much.

I recognise long term high stress turned my fibro from tolerable to crippling ....we need recognition just how unwell we are and not to completely collapse before we are believed and nurtured a bit ourselves.

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Old 10-07-2017, 05:08 AM #18 (permalink)
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Default Re: Exercise intolerance , how real is it?

Lubkos Way, thank you so much for waiting to be sure before recommending anything . Cause it's very important to make sure since I was once thought just only a few month ago that i might have " broken my fibro curses at last" , and oh boy i was so wrong about it . Worse was that I was already out preaching about it only to find out a month later that it was just a mere bust of relieved that once in a while many many fibro sufferer are able to get just enough to be taken away later or sooner. It could last a month like mine or even last up to a year or some a few more. I never realized nor believe when they said no cure meaning NO CURE .. I just continue to brushing it off every time i hear it. I guess i'm just too stubborn that way.
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Old 10-07-2017, 05:19 AM #19 (permalink)
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Default Re: Exercise intolerance , how real is it?

I know Diamond ,stress it's so hard to truly get rid off. We are not sociopath enough to just turn our emotion off . Or could we ? I wonder....
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Old 10-07-2017, 05:25 AM #20 (permalink)
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Default Re: Exercise intolerance , how real is it?

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I have a little healthy envy that with fibro some people can walk for hours swim and hike....lol at my best i could walk gently for an hour until i seized up and just couldnt bear the burning throbbing any longer.

I hope i dont offend anyone..i really am genuinely interested in how this illness affects everyone differently....not trying to take away its hard and has a psychological impact as everyone wants to beable to do what they want and not be restricted a all.

Please dont be cross at my query..it really just amazes me the amount of activity some can achieve and im no quitter....my partner has to hep me up the path like an old lady...almost zero power in my body.
I completely understand what you mean. In all of your posts, I could see a part of me. I also see all these 'quite healthy' looking people diagnosed with fibro, but they are seriously able to do quite a bit. I know the invisible side of fibro is the tricky bit...

...but when I see my friend, who was also diagnosed with fibro, wearing heels, walking in a supermarket, carrying bags, driving back home to her baby after a day in the office (she works full time), and talking to me about her weekend away with friends, I cannot help but get jealous, angry, frustrated, hateful, furious, envious, self-hating, self-pitying..... I am there in the supermarket, dragging my feet, making calculations in my head about how much I can carry, how far I can walk, how long I can rest once I get back home, in complete exhaustion and pain. I can barely even fake smile these days....

That's why I really want the medical community to come up with grades or types in fibro. Fibro type 1, fibro type 2 etc.

I mean someone who sees my friend is surely to doubt the diagnosis of fibro (even I do/did, to be honest). So they doubt it with everyone else. But apparently her fibro is not (yet) as bad as mine. She can still have quite a life. I have no life.

It is not fair, it sucks for both of me and my friend, because I know her pain/exhaustion is real too. But mine is too. The fact that I cannot leave the house for days is also real. Or how I can sleep for hours but wake up feeling exhausted. Or how I cannot even cry no more because my body is simply too tired to even cry....

Fibro is so freaking unfair.....
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Old 10-07-2017, 06:43 AM #21 (permalink)
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Default Re: Exercise intolerance , how real is it?

I know what you mean Vickythecat , I often feeling confuse and very sad when I see or hear about someone running and pushing other people out of their way, then turn around and said " sorry, you see I have fibromyalgia" . Or like a friend of mine who is now on disability from depression do to his previous obesity, which the last time I saw him he was wearing a red super skinny jeans size 4 partying like no tomorrow. I get it that some point in life they might had suffer somewhat invisible problem. So it's good for them since they can enjoy life now ( or while it last) , but why do I feel so low after wittnessing all of these? Those people often tell me that all I need to do is go out there and enjoy life. I tried yet everytime my heart couldn't take it I litterally ended up passed out from pains, or crashing my self in to things black and bruised, not to mention sleep attack that know no place and time, and threat of hyperventilate/panic attack just around the corner Yet many of them kept guilt me with things that kept slipping off my mind on fibro fog. Saying things that pushing me over the edge, thinking that " tough love" can cure me out of fibro. Like showing me articals that some doctors prefering not to tell their patients that they have fibro , because they're afraid that their patients will likely to stay sick or nurturing their illnesses if they know that they have fibromyalgia.
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Old 10-07-2017, 07:26 AM #22 (permalink)
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Default Re: Exercise intolerance , how real is it?

Tough love..now theres a phrase.

Tough love just doesn't work for me....i know i am more fragile now because if my health and life and feeling rejected too many times...and in the past i could mask my sensitivity because i had good health and could use activity/job/happy marriage to leave any negative emotions behind even if things did sting at the time...plus if you have that special person on your team through thick and thin i would say from experience it gives you a sense of security if you wobble yourself.

Now tough love has the most terrible effect. Its like the coating other people have doesn't exist in me anymore and was probably always a bit thinner...it just didn't show...i wouldn't let it.

I could do with a suit of armour to stop those arrows penetrating as i sure don't have my own armour anymore.

Ugh i hate it when the medical profession think we are somehow happy and enjoy the attention of being unwell.....do they not realise we were all once healthy often high achieving people who loved life...grieve for our old selves.....now and again i even look at photos of me with family and friends just before fibro took hold and LONG for that person.
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Old 10-07-2017, 08:26 AM #23 (permalink)
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Default Re: Exercise intolerance , how real is it?

All that fibro grief , every times I thought i've made it out , It just sucking me right back where it started again with just little few triggers physically or mentally . That's how I went completely agoraphobia times after times again. But oddly written it out in words over here while feeling stuck in the dark still do have some what a claim effects in the subjects of heart broken or angers. Even in sadness that we share , because you share it back I felt less darkness over me. Thank you!

Thousand invisible XOXO to you Diamond & Vicky. Please know I always have you both in mind and hopefully one day we can really smile like those people someday enough to make them envy too. Even just a dream for now. Maybe I'll buy one a those digital lucid dream eyewear Sleep mask to control my vivid dream so I can go get my fantasy revenge in my dream anytime i felt like it.
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Old 10-07-2017, 10:26 AM #24 (permalink)
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Default Re: Exercise intolerance , how real is it?

Can I ask any of you ,if you remember what was the specific event which triggered your fibro?For me,it was a perfect storm!I had all three triggers.1)Illness,duodenal ulcer,The Quack gave me 3 cocktails to kill helico pylori bacteria over nine months.It killed it and everything else in my digestive tract.Ever since,I have had IBS and chronic diarrhea.2)Physical trauma,shortly after,I had a work accident and came close to cutting off 2 finger tips through the finger nails.3)Emotional trauma,then 3 months later my mom spent 2 months in hospital suffering horrible things,only to die anyway.In one year and a half,everything changed for me.I lost my career as a machinist for an aerospace co.,I could no longer go to the gym because of the pain,lack of energy,and recovery after exercise took up to a week.And last but not least,90% of my relationships went to hell.I want to know because it will help my research,the only thing that we have left is hope.I am not giving up now, because once again,20 years after everything has changed but this time going toward heaven,not hell!So if anyone is up to it,let me know.I am a 53 year old male and time has stopped since this illness ruined my life.I want it back!
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Old 10-07-2017, 11:52 AM #25 (permalink)
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Default Re: Exercise intolerance , how real is it?

Mine was a mixture too. I had several years of very high stress....better not say on a public forum but very traumatic for me...culminating in my partner leaving me for another woman ...then my mum was seriously ill and was touch and go if she would survive...and then i had a fall off outdoor steps onto a concrete patio and broke bones ...prior to this i had never had any health issues except high anxiety from things i wont go into that had been going on for several years.

So i would say trauma and high stress over a prolonged period and then an accident.

Does that mean things are improving for you Lubkos...well that must feel great after 20 years
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Old 10-07-2017, 01:18 PM #26 (permalink)
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Default Re: Exercise intolerance , how real is it?

I am not out of the woods by a long shot,but I will say,I have improved,no thanks to the medical community.I used to take 30 mgs paxil,75 mgs amytriptiline,30 mgs flexoril,3x day loperamide,3x3mgs hydromorph contin,150 mgs synthroid for hypothyroidism(multi nodular goiter because when I was 2 I suffered a serious concussion,and in 1966 they did not cover childrens' thyroid during x-rays,so now I must have biopsies every few years.I also have 2 herniated,one bulging lower neck discs.They can only fuse them together,but then I could not turn my head anymore,no guarantees no way.I am a mess,but I now take only the thyroid hormone,the hydromorph pain meds and only a 12.5 mgs of amytriptiline (a so called maintenance dose).I have a few strategies that took 15 years to understand.The medical community are only interested in their own success.All they do is make money off us,treating symptoms with useless meds whose side effects make us worse,and add problems of which we have more than our share of!.This illness IS an autoimmune issue,because symptoms are all over the map!How the hell can anyone say that it is caused by psychological issues,they are ignorant,they were not listening!The depression came after all the excruciating constant pain and all the walls,we all have hit,trying to find relief.Having half,if not more of doctors,family,friends,employers denying its existence has been a insurmountable hurdle,that only adds to the feeling of hopelessness!I refuse to allow greed and their self interest to make me a slave financially and physically anymore.I have improved measurably and expect to make more improvements.I believe,for the first time,that I am on the right track.I will share my hypothesis soon as,I am as sure as I can be,so as to not make a false claim.
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Old 10-07-2017, 01:32 PM #27 (permalink)
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Default Re: Exercise intolerance , how real is it?

Not sure what mine was, because I don't know how long I've had fibro. I had mono, strep and high stress in university, but i can see signs of fibro earlier than that, so I'm not sure. I also lived in a jungle camp in Mexico (I know, right?) when I was small and was exposed to ddt and who knows what all ...

Re the emotional stuff ... one of the most frustrating things I've had to deal with with docs is, when I finally got diagnosed and was really struggling wiht anxiety and depression. my doc referred me for counselling. You first had to see an intake nurse. So her response was ' well of course you're depressed, you're in constant pain. We have to do something about the pain. You need a referral to a pain clinic. You need more meds. I see there's a long list of meds you've tried. You say that they affect you adversly. Well, obviously you have a fear of medication. You need to get past that so you can get proper pain medicaiton to treat the fibro.' I was just way too tired to try to educate her that a. no really, the pain meds don't work for me and the side effects are not just in my head and b. pain clinics in Ontario just do shots into your joints, which is not my problem, so won't work for me. I've talked about all this with my doctor dumba##. I just took the referral, told the counsellor I was fine and dealt with it on my own.
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Old 10-07-2017, 01:40 PM #28 (permalink)
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Default Re: Exercise intolerance , how real is it?

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Can I ask any of you ,if you remember what was the specific event which triggered your fibro?For me,it was a perfect storm!
I truly feel for you, you went through so much, in such a short amount of time. I believe most of us have a similar story.

The phrase perfect storm explains my situation as well. Mine started out as a) dream job becoming a job from hell b) death of my father c) 2 X failed surgeries d) mobbing at work, feeling invisible, losing the little self confidence/respect I had for myself e) a fall and wrong treatment at the hospital...all within 15 months.

The thing with me is that all of this happened to an already pretty sick body and brain that I had. I've coped with mental illness my whole life, many suicide attempts, months in mental hospitals...always very sensitive, never understanding the world around me, loneliness, self-hate, was declared disabled at the time, yet always trying to be 'normal', always that 'normal'....the only thing I wanted was to be 'normal' (my normal being an unattainable place) and that got me to this broken place.
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Old 10-07-2017, 03:06 PM #29 (permalink)
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Default Re: Exercise intolerance , how real is it?

There is something that I sense we all share.That is,we all have a propensity or maybe sensitivity to being susceptible and allowing life's rollercoaster ride to affect us so completely,that regaining control is twice as hard,because it will affect our physical health too.I know for me, getting rid of certain people in my life,helped my health.If there is someone who perpetually torments you,and it does not matter who they may be(family or significant other included),purge them out permanently from your life,and make sure you told them why!You will be surprised how much better you will feel without their abuse,you will regain self,self respect and have a shot at beginning to heal.It is a package deal for us,and the sooner you realize that,the sooner your wounds get a scab and begin to heal!
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Old 10-07-2017, 09:30 PM #30 (permalink)
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Default Re: Exercise intolerance , how real is it?

" perfect storm" well lets see ...

It started of as first- My mother's illness which was called the non smoking lung cancer stage 4 . It was a long battles , hospital dramas, hospice treatments and her final passed. And to have to full filled all her final wishes including perform my second wedding for her since she didnt get to see the first one do to her illness and the fact that she lived in Taxas while I lived in NYC. It was expensive but it worth everything cause she get to walked me down the ale ( in her wheel chair with me strolling it)

Second storm that came right after my mother passing with out a break was my divorce which shockingly happened when I just came back from my mother memoral serviced only to find my ex husband in the mid of fallen in love with another women he met online. Do to the guilt that I might had been too busy with my mother I might had neglected my marriage. Along with still suffering the grief of losing my mother . I agree for divorce which was a big lost on my part cause since I carried his debts I had to take care of him and helped him becoming capable of taking care of his new GF and his divorce life. Another word holding his hands through our divorce and tried to be a bigger person , only to be treated with cold shoulder by his GF and her son when she moved to the upstair space aboved me with my ex husband along with my furnitures. What a wonderful family of awkwardness.

And the third storm started, was somewhere when the divorce just on the way . I was suddenly in the medical crisis with my ovarian problem , I couldn't get any help from my exhusband who was too busy to celibrate his new love while still living with me , so I ended up in ER strolled away my ambulance twice in one day. After that it was something I could only describe as the bigest hellish hospital stayed I have ever done in my life time. I can only describe the feeling as much much worse than my worse fibro flare up, without pains med since it could only be done with no anaesthesia or even any local anesthetic involve do to complications during each fixing procedures . My lung , my kidneys, and liver were cruched inside along with other internal organ. Almost die yes , but sadly I did't . ... lets say that dealing with divorce paper during a bunches of tubes draining pumping things in and out of your body with afew different kinds of catheters along with my arms completely black and bruiseds from IV needles works complimentary of students doctors/ training nurses from NYU. Hooray .. they sure love to walk in the large groups don't they? I never seen so many doctors gown surrounding me in or multiply poking at me each check up before. Like being attacks by alien in the white gown night after nights, or being sucking dried during the day after day . I still gets those nightmare from times to times. Thank god it last no longer than over a week , which felt like i lost my whole life time after.

Only to get home to empty shell , and more lost to come .

That was just my first triggers experienced to the first introduction of Fibromyalgia. But what happen after such as the lost of my job, more heart broken, lost many apartments along the way till finally homeless. ( and still homeless now) . That was just the normal storms I believe many of us here had experienced one point or another after being lable with fibro , no ?





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