Old 10-15-2017, 10:33 PM #76 (permalink)
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Default Re: Exercise intolerance , how real is it?

Slkal,do you know it is always darkest before the light?!I know you don't feel it at the moment,but if you hold on long enough and really try to look at the way things are,and the way you want them to be,there is still hope for you and your dreams!The hardest things in life are living with the events and realities that fall upon us,it is not about being able to dance and enjoy yourself when things are going your way,that is easy!But rather, it is about how you act when everything feels like it is falling apart,and when you feel so alone that you think,what is the use?Well the use is you are wonderful,and better days are coming.Trust me,wait it out!The one thing I am sure of is,that things can and will get better,if you give them the time needed to heal.It is a long road but it is worth it,you are worth it!
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Old 10-16-2017, 05:17 AM #77 (permalink)
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Default Re: Exercise intolerance , how real is it?

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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.
I know what you mean. Everything is tough and it hurt to the core. When I was taking so much drugs for everything at the time I was suddenly gained lots of weights . It hurt so much to have push my body plus my weight around. I felt like a bunch of sand bags hanging all over me which I have to carried everywhere I moved and that was hurting my body. After I got off from other drugs , some witdraw symptoms made my IBS and acid reflux gone nuts beside all the unfamiliar pains and perceptions. I was stuck at the bottom pit with out a break. Everythings hurts even air on my skin hurts like something was whipping my skin with with sharp thin fiber . My appitite was also bad, I could hardly eat cause evey food started to hurt me.

So I went on eliminating diet. ( AKA 30 days eliminating diet) To see if which food I was intoleranced to, and which vitamine/mineral that I lacked. I've found out A LOT. Then I realized that my body know best for what's good and what's bad for my body only if I know how to listen to it. After that everything starting to brighten up. My body felt lighter, I started to walk again with less pain and better mood, although not that far but I felt so much better from before. Cause before, I was stuck to the bed learning how to use catheter.

I like to think that I'm almost there, almost out of the wood. Just a little more . Just a little further.
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Old 10-16-2017, 05:25 AM #78 (permalink)
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Default Re: Exercise intolerance , how real is it?

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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.
Thank you so much Marvis . I will definitely check that out! Sometime I get scare of watching something that might get too depress. I kept thinking i wanna watch it .. then i back out from doing it, back and forwad couldn't make a decision.
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Old 10-16-2017, 06:57 AM #79 (permalink)
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Default Re: Exercise intolerance , how real is it?

I will watch the movie ..thank you Marvis...i have actually asked a couple of family members to share awareness of it on social media too. I see its now showing all over the world...a great move for both professionals and the public to gain insight into a very hidden disease.

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Old 10-17-2017, 02:44 PM #80 (permalink)
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Default Re: Exercise intolerance , how real is it?

Hi Diamond
Years ago I was going to a massage therapist, sounds like luxury right? Nope, it hurt. Anyway I made a comment to the therapist " every time I exersize I end up injuring myself".
She said " Maybe you subconsiosly WANT It to happen. WHAT!!!!!!!!!!!!!!!!!!! ?????????. Stoped going to her. The comments and suggestions nieve, non professional Fibromyalgia laymen and even Dr.s say are such a load of crap. Dont listen to it. You are not crazy, Fibromyalgia IS real. For me, I believe Ive had it my whole life, followed by a series of tramatic events. I think I have family members who suffer also, but are afraid to be seen, or talk about it. For me, Im a soft soal, I did not develop porcupine quills to ward off emotion trama, and therefor suffered my whole life. Before you think....poor thing,( STOP). I only bring it up to maybe help others. If your in a abusive situation its time to protect yourself, and take care of YOU. Maybe you have an emotional Mom or Dad that controls you with "things". Maybe you have a work enviorment that forces you to compromise your morals and ethics......STOP. Its not worth your life!!!!!! I could go on forever, but wont, MAYBE A BOOK SOME DAY. Compromiseing your dignaty and respect at the hands of anyone who would try to: Put you down
: Tell you what to feel , where to work, how to dress, what to eat, who your friends should be, who to talk to on the phone, when you can talk on the phone, when you can go out, or better yet, (make you feel guilty because of your actions ), now this person is so sad. STOP. Demand respect! And get heathy! Im not saying this will cure Fibro, but.......it sure is a good place to start.
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Old 10-18-2017, 07:14 AM #81 (permalink)
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Default Re: Exercise intolerance , how real is it?

Oh man .. I can't get massage from any stranger at all either. It hurts so much especially the day after i'll get fever and bed ridden for a week. Not luxury anymore it's not! ..
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Old 10-18-2017, 08:52 AM #82 (permalink)
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Default Re: Exercise intolerance , how real is it?

What would you say if I told you that I am in my fourth day in a row,virtually pain free,even my herniated discs barely hurt!It is the first time in twenty years.I even have been doing concrete repairs for three weeks full time,pretty taxing stuff.Has anyone had that many days in a row?
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Old 10-18-2017, 09:45 AM #83 (permalink)
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Default Re: Exercise intolerance , how real is it?

No Lubkos i never have not in a decade. good for you and impressive you are working at a heavy labour job too. l felt lucky to walk for an hour and then needed to rest my legs because that was my max before high pain kicked in.

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Old 10-18-2017, 03:55 PM #84 (permalink)
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Default Re: Exercise intolerance , how real is it?

Good for you too Lubkos way

I'll pray yours strength will stay , and not washed away like I did ever. If you could then maybe I'll have some hope , I hope you don't mind me placing my hope on you . Not sure same method can help me but in due time it might. There has got to be an on/off switch somewhere.

Right now I having problem today with the stairs after busted my legs trying to walking on it cause my eyes can't sized the space between correctly. Maybe going blind completely might be next I'm half way there way too many time as mind as well be permanent ... *sigh* Too depress... I'm suck.. ... and I lost my cane in to the pond.. damn it! I only try to walk but the duck got in the way!!
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Old 10-18-2017, 06:15 PM #85 (permalink)
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Default Re: Exercise intolerance , how real is it?

What I truly hope,and what my goal is,to give all of us a Christmas and New Year like no other we have had in memory.I am more than hopeful.We will know in one month after my second treatment beginning this weekend.If I am right(and I am confident I am!),it will work for us all.It started as an experiment because I was fed up and I had nothing to lose,so I decided to become a test case (or maybe a lab rat,haha!),and I am blown away by it all.You will all be shocked by what it is.Anyway,I will keep you all informed as I go along this path toward heaven?!
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Old 10-18-2017, 09:44 PM #86 (permalink)
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Default Re: Exercise intolerance , how real is it?

I saw an ad for some type of research but I get hesitant. Let us know how it goes, tired of being tired.
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Old 10-20-2017, 09:14 AM #87 (permalink)
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Default Re: Exercise intolerance , how real is it?

Lubkos, I will be very interested to hear about this.
I have not had 4 days of no pain in a row for several years. But I have had better days in which the pain was less and/or flares were less frequent.
Please keep us updated on this treatment.
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Old 10-30-2017, 02:32 PM #88 (permalink)
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Default Re: Exercise intolerance , how real is it?

I just ordered some coca leaves product to see if it help too , since there has been known that altitude sickness does react a lot like CFS in many ways.

I'll let you guys know if that works soon as I try it.
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Old 10-30-2017, 05:56 PM #89 (permalink)
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Default Re: Exercise intolerance , how real is it?

I donít think anyone expects fibromyalgia sufferers to be able to exercise as intensively or as hard as they did before they were diagnosed. But we still need exercise, instead of a run how about a walk, stretching is good for our muscles. Donít get me wrong, it can still hurt and on a bad day donít do as much or at all. But over time I have found my strength and duration has definitely has improved and I can now lift 100 lbs again and keep up with my Grandkids. It was a slow go but Iím proud of myself. It isnít the same for everyone I know. Just works for me.
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Old 11-16-2017, 11:19 AM #90 (permalink)
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Default Re: Exercise intolerance , how real is it?

This sounds so familiar, and thank you, I thought I was just so out of shape (which also I am).
But I also have allergy to heat, Urthicaria (or something like that, I would have remembered it if I didn't have a fog brain and literally any time my heart rate goes up,or I get little bit hot (shower or a longer hug!!) I break up in hives. I joked for years that I was allergic to exercise, and heck it is true!
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