Living with Fibromyalgia - sit on your butt? Or, exercise? Hmmm...

[cushfam]

Diana-I am a stay at home mom with Fibro who lives about 1 hour away from Santa Cruz and I am so glad that you are feeling better. As for your legs hurting and burning going up the stairs, I have the same problem and my pain mangement doctor diagnosed me with periformis syndrome 18 months ago (on top of my Fibro) there are some great stretching exercises for it that help tremendously. I have not tried the Guie technique but maybe I should. I have suffered for 10 years now. Maybe its time. Dani

[tommyrt681]

i do what i have to do with my day. I refuse to sit around and let pain keep my down. Not a day that goes by that I am not in pain. if the level of pain is high I cut way back on martial arts working out yard work fishing and hunting. i crash hard! But no way am I letting pain stop me from living my life. It does such big time dealing with this type of daily pain

[ajdicks]

it can be next to impossible to convince a fibromyalgia sufferer to exercise, eat more natural foods, or even stop binging on pills . they agree that it sounds like a good idea and then continue the identical bad habits.

[FibromyalgiaAnswers]

@ajdicks agree, it can be extremely tough. The best thing I have found is to provide support in the best possible manner and work on providing an accountability routine and documenting the results in a pain journal...we can really prove results of what works and what doesn't work as well.

[vontrappster]

fibromyalgia doesn't exist. you lot are mental

[surfercouple]

@vontrappster Yes, we are getting together for our annual crazy convention next month. Considering there are 20 million people with fibro, t will be one crowded gathering! Actually, I rather liked the word you used-- "mental." Sounds like a word they would use in Harry Potter. "Harry, have you gone mental?" They've identified the gene that causes fibromyalgia, and are working on a blood test. Thanks for writing. Cheers, Diana

[greeniem]

diana you're amazing.

[dolcepeter]

kinda hard to hear you, but you seem like an amazing woman.

hey, i would give anything to get back on my eliptical, and out of this bed. i want my life back.

hope you are still doing well. god bless.

[dianacwolf]

Hi Peter-

Thanks for the comments regarding the audio. I haven't had much luck with Mac-compatible headsets. I'm on my third one, and they keep dying on me. I think I might be better off just using the tiny little microphone built into the top of the monitor. Anyway, I'll try to do better next time. Glad you liked the video, though. I hope you feel better soon, so that you can get out of bed. It's so hard to be sick, and not do the things you want to do. Sending good thoughts your way.

[dolcepeter]

thanks for your kindness.

yeah, headsets are a pain. i still can't get mine to work

keep up the good work. you are amazing

[dianacwolf]

Hi Peter! Well, if you find a good one, let me know.  I'm still trying to get Best Buy to take back the last one they sold me that died after three months. Just have no luck with the darned things. I just recorded a new video a few days ago about a new treatment Stanford has been researching called Low Dose Naltrexone (LDN.) I'm on it. I have mixed reviews on it. - Diana

[rebeccagarde]

thanks for the video, i was feeling a bit sorry for myself thisevening all sore and tired :( but you made me laugh :) espeally about tortureing someone with fm, the stair master really would be torture :) ceep posting

[dianacwolf]

Hi Rebecca! Anyway, discovered something interesting about stairs. It was my lower back, hip and a bunch of leg muscles that made stairs hurt so much. Went through a whole bunch of physical therapy for knee surgery. Worked all those other muscles groups, other than just my knee. Somehow wasn't getting them at the gym. It was uncomfortable to work them out, yeah, but now, stairs don't hurt as much. Muscle strengthening helped a LOT with stair pain. - Diana

[mrstdbk]

lol

[dianacwolf]

Glad you enjoyed it. Recovering from fibro has been a winding road, rather than a straight path, but I must say that four years after being diagnosed, I am very close to leading the life of a "normal" person. While there are no simplistic answers to fibro, and the "key" is different for each person, I believe the right diet and gentle exercise helps everyone with fibro. I had to eliminate gluten (even though I tested negative for Celiacs's) and I do moderate cardio. This helps a lot. - D.

[krobinson95]

I liked your video, it was funny and informational. I think the title is misleading though. I thought your video would be some exercise moves so I recorded it. I wouldn't have recorded it on to real player if I'd known the content. (saving space on my laptop only 80 Gb) Anyway, enjoyed the video,,,keep on blogging!

[dianacwolf]

Hi Krobinson! Sorry about the title- didn't mean to use up laptop space. Totally understand. My laptop is filled to the gills. I am constantly having to Empty Trash just to keep the thing running. Feel free to delete me, of course. I originally called this video Exercise and Fibromyalgia. But, nobody watched it. Too boring, I guess. Took me two weeks to edit this video, so i wanted folks to see it. So, a new name... sorry for any butt wiggle confusion. :)

[eyez2cwith]

my speakers are on HIGH and no hear you... why?

[dianacwolf]

Hi Eyes- I think it may be a browser issue. Try it on another browser, if you have more than one installed on your machine. I create my videos on a Mac, using iMovie 06 or iMovie 08, and test them using either Firefox (Mozilla) or Safari. I just tested this one with Safari and I am getting sound. So, I'm betting it's a browser issue. I have a new computer now, with all of Apple's latest software, so hopefully they've fixed any and all browser bugs. Hopefully...Apologies for any problems.-D.

[tsungvarsky]

I like your hair.

[dianacwolf]

Thank you. You're very kind. I must confess, I like it, too.

An odd thing has happened recently with regards to me and hair. In the past, it was difficult, more annoying, I guess, to blow dry my hair 'cause it was painful to lift my arms above my head. Ask anyone with fibro-- shoulders over the head sucks. "Frozen shoulder" is a very common complaint. It affected my softball playing as it limited my range of motion. Too bad, 'cause I can pitch. But, recently, something really cool...

[dianacwolf]

(continued) ... happened. That limited range of motion thing totally went away. Now, its no problem at all to do all those over the shoulder things. Doesn't hurt to reach for a dish on the high shelf, or... blow dry my hair. I can actually blow dry my hair again with no pain at all. When I recorded this video, a year ago, my hair was wet, 'cause of the shoulders thing. That's totally not an issue anymore. Gives me a lot of hope. :)

[ruseriousfibro]

Depression isnt as hip as it used to be. You guys finally found out about a disease that only you and your friends can diagnose. (Ie. wanna go half on sac?) Go exercise, admit your lazy, ..Ill be honest.. i like to get high too, but I pass the joint to a friend and watch cartoons. I dont try to explain the uplifting moral understanding of the coyote and roadrunner...IM HIGH. As are you...but to you and all your Vicodin.percoset.- loving friends-use the next post as awake up- we know about u!!!

[dianacwolf]

Hmmm... I'm not sure I understand the basis of your complaints. Your first complaint is regarding how fibromyalgia is diagnosed. Since you are so interested in the disease, you'll be happy to learn that researchers at the University of North Carolina at Chapel Hill have discovered the genetic basis for chronic pain conditions such as TMJD and fibromyalgia. This is part 1 of a 7-year, $19 million initiative, involving 3,400 individuals. I can send you the full article if you like.

[Guai4life]

ruseriousfibro

just cos you cant see the pain and hell that fibromyalgia suffers go though doesnt been that the illness is not real i think u need to stop judging fibros as it sounds like you have no clue what so ever

[ruseriousfibro]

Its like ambulance chasers..... they cant tell if your tired or have a headache.....muah hhhhhhh pain and suffering can get you money? what about not going to work and avoiding household chores!!!!! huzzah for middle aged female druggies everywhere.

[dianacwolf]

OK, so, now that we've found the pesky little gene that establishes: "Yes, Virginia, there is a disease called fibromyalgia," I will address your second issue. You are concerned that people with fibromyalgia are lazy. This entire 10-minute video is focused on exercise. So, I post a video on why people with fibromyalgia should exercise, and you flame back about how lazy I am. Hmmmm... yes, yes, I see...

[ruseriousfibro]

Its sad to see that you are teaching your own child to quit on life? Does it make it easier to get him to stay in his room while you sleep? Anyone notice how all "sufferers" tend to behave alike coke heads then sleep? gee I wonder. So excited about little stuff..hey listen to me!! I have just enough energy to waste YOUR time. But no, I cant do the laundry/kitchen...WHAT do you mean get out of bed? Doctor appointment..there early to avoid the rush.

[dianacwolf]

OK, next, you address the issue of drug use. You mention Vicodin and Percoset. I take none of those drugs. I take no prescription painkillers at all. None. Not a one. Nada. So, it appears the only recreational drug user around here is you, my dear.

[dianacwolf]

Your final concern was for the welfare of my son, and his quitting on life. Well, let's see, my son is in an accelerated Dual Immersion (dual language) kindergarten program. After just six months, he is almost fully fluent in a second language. He takes kickboxing at the gym, and plays soccer. He takes semi-private swim lessons, and is learning how to surf. He is also very active at our church, and does volunteer work with me. Yes, I can see how that would be considered quitting on life.

[dianacwolf]

Now, let's talk about you. Where do all these anger issues come from? And, why are you focusing your anger specifically against women with fibromyalgia? Do you love (or have you loved) someone with the disease? Did they reject you? Perhaps we could talk you through that, and help you deal with your anger issues in a more healthy and positive way. You may want to consider giving up the drugs, and starting an exercise regime. Exercise helps combat depression, (releases natural endorphins.)

[1SlyDaCat]

loved it....keep up the fight, your alot like me ...a fighter! i think i have fibro as well but hasnt been diagnosed been ill since christmas now and have all the symptoms but unsure still if it or what and docs just want to look at "its panic attacks" as if any normal person dont panic when you feel as if life is ending and shakey hands etc

[aebottoms]

Your video is very encouraging to me. I suffer what I consider to be a mild case of FM. I can still function on pain killers, although I am never pain free. I never have energy, but I MAKE myself go to Taekwondo classes. I am a 2nd degree black belt and don't want to give it up. Of course nobody believes that I can do this and REAlly have FM....fools! They have no idea how hard it is to get me there. :)

[dianacwolf]

Hi AEBottoms! I think it is awesome that you are still exercising! As I'm sure you've already discovered, be aware of your limitations, because too much exercise can send you into a flare. Too little can increase your muscle stiffness from inactivity. (Yeah, fibro sucks, no doubt about it.) It's funny. I get that comment from people all the time: "I don't believe you have fibro." :)

[dianacwolf]

(continued) AEBottoms- I'm going to guess that you are my age or younger, (I'm 38.) Fibro doesn't usually become totally debalitating 'til folks get older. In our online support group, we have a great number of women in their 50s, in very bad shape. The guai protocol has worked well for me, but its very controversial. You can google, or wikipedia it if you want to learn more. We have an online support group, and I keep a blog about it, too. Good luck to you. - Diana

[pricklesxpq]

I'm glad you're finding some relief. Best of luck to you

[dianacwolf]

Thanks Prickles! It is wonderful to be getting my life back. The worst part of feeling so bad was not feeling like "me" anymore. I honestly and truly missed being me. My husband told me at one point that I wasn't the person he married. He was right. I was a stranger to myself. But now, I can honestly say I am me again. It hasn't been easy. It's been painful to get here. But, I am me again. I missed me. - Diana

[gsmith35]

Ive had fibro for about 5 yrs. I agree and disagree with you. People have this disease at different levels.

Exercise does help keep the pain under control, but too much will cause a flare up.

You must not have a severe case of fibro.

[dianacwolf]

Hi GSmith- I posted a reply but I don't think it went through. Anyway, I just wanted to say I agree with you entirely. Too much will definitely cause a flare-up. I had to start off really slow three years ago, as I had a VERY severe case of fibro, (suicidal bad.) I started with the exercise bike at no resistance. I've been on the Guai Protocol for three years. I'm a member of the Guai Group online support. There are 2,500 of us. (It's a free group.)

[sinistergrin]

I don't believe you have fibromyalgia....theres no way you could do those things if you did.

[ParanoidKitty]

You have to realize everyone suffers differently with fibromyalgia, and some days you can do way more than other days. There are even days when you can be 'normal'. Then there are the days you cannot get out of bed.

[dianacwolf]

I here you ParanoidKitty. Fibromyalgia definitely comes in cycles. On the days when I feel really poorly, I usually just do the exercise bike at the gym set to level zero, (no resistance.) But, I still firmly believe in exercise and diet as keys to controlling fibromyalgia. And, yes, I'm a member of the GuaiGroup.

[dianacwolf]

Well, SinisterGrin, I think that's about the nicest thing anybody has said to me in a long time. I take it you have fibromyalgia, then? And, that you are following convential treatments for it? Cymbalta? Lyrica? Neurontin? Ultram? Vicodin? Neurontin? I tried that, too. It didn't work.

[kentek2007]

Hey the audio was so messed up I gave up trying to watch this but if you make the audio better, I may check it again!

[dianacwolf]

Hey Kentek-

Thanks for pointing out the problem. There were no audio difficulties in the original file, so I'll check with YouTube and see if there are any server issues on their end. This file's been up for many months, and this is the first audio issue. Thanks for the note. - Diana

[vincent4500]

p.s. dongchong, be careful what you say, I mean i didn't believe in such 'psychosomatic' (not 'psychogenic'!) conditions until i actually got one myself..experience is the greatest teacher and bringer down of blind ignorance..keep up the posts diana!

[vincent4500]

thanks diana, your posts are the most upbeat/entertaining and motivating of the posts i've seen regarding fibromyalgia. Yes, i agree cortisol increases with lack of sleep, stress, trauma and those are exactly what we all struggle with with this blasted condition..thanks

[brimtown89]

well, I WAS going to skip going to the gym today =)

[tinavalz]

keep spreading your light, love & laughter!!!

We all need to lift eachother up, and encourage

eachother on! and you are doing it sweetie!!!

I am saying a prayer for you RIGHT now, that you continue on feeling AWESOME!!

[vincent4500]

I've suffered from severe fibromyalgia/CFS for 12 yrs plus severe depression and social anxiety which i've had since childhood..severe psychological trauma, much like a large stone thrown at a window, is the 'initiator'..yet depsite being interactive with depression fibro is Independent..something doctors have a hard time understanding, yet it's accepted with other syndromes..fibro is complex!

[dianacwolf]

Vincent, you are right on the mark. Just today I ripped an article out of the newspaper because it had an interested tidbit 'bout depression. It said, and I'll paraphrase for lack of space, Cortisol is the stress hormone. Serzone is the feel good hormone.  (out of space, to be continued)

[dianacwolf]

(Comment continued) Vincent, A constant supply of too much cortisol from lack of sleep, stress, emotional or physical pain, can overwhelm the brains ability to produce the needed serotonin, thereby affecting the brain's proper function. I believe there is a very important link between serotonin and fibromyalgia.

[dianacwolf]

Now, DongChong, to be fair, did you even watch the video? The point of the video is that exercise helps fibromyalgia. As you can see from looking at me, I am a very fit individual. I run five miles a day, which is quite extraordinary for someone who has this "made up" (as you put it) disease. I do not take Vicodin. I adore my child. Do you have any other advice, perhaps, DongChong?

[dongchong]

Fibromyalgia is a made up disease. I got an idea, get some fucking exercise and stop taking vicodin. Pay more attention to your children.

[fabulousdarling74]

I was discusted to read this comment. I am a fellow sufferer of this condition, reasearch before you comment.

[2hotinaz]

dongchong, you are REALLY showing your ignorance. BTW, men DO get this, keep your fingers crossed.

[dianacwolf]

Thanks 2Hotinaz. I appreciate your support. And, you are exactly right. Men do get the disease, too. The disease is genetic, so kids get it, too. If the parent has it, each of their children has a 1 in 2 chance of having fibro. Now, in children, boys and girls have fibro at an equal rate, meaning 50% of the

[dianacwolf]

(continued) population with fibro are boys, and 50% of the population with fibro at girls. However, boys have a good chance of outgrowing the disease at puberty. Girls do not. This points to a hormonal component to the disease. In the adult population, 80% of the people who have the disease are women. 20% are men. This makes it difficult for the male sufferers, as fibromyalgia is stereotyped as "a woman's disease."

[Sandeshells]

Enjoyed your video, thanks.I have had fibro for over thirty years, it sure does get old and not many people understand. the chronic fatigue that goes with it is just as bad as you don't enjoy life much. Dr's wont give you pain killers much as so many people abuse them.  It hurts to get a hug, it hurts to go anywhere or do anything, it hurts to live. I just thank God I have HIM, as about when I can't take much more, He some how helps me face tomorrow.

[dianacwolf]

Hi Sandeshells- I hear you. Fibromyalgia is an incredibly painful disease to live with, and only someone with the disease can truly understand the magnitude of how it impacts every aspect of your life. I'm doing very well with my fibromyalgia. This week, I jumped off a rock cliff on a rope swing. Crazy, yes. I also marched over a mile with my drum and bugle corps carrying a 30 lb snare drum, while playing it continously, of course. There is life with fibro.- Diana

[Sandeshells]

yeah we must fight for life daily. We are going to be sore one way or another, might as well Live. I will be praying for you in two days however, when the pain of what you did today, catches up. thanks for your comment.. God bless

[Guai4life]

wow i love your Video Good Job! im so proud of you!

i have fibromyalgia and im on the Guai protocol and im up to walking for 50mins a day now i started slow its taken me about 4 months to get to this point its been nealry 9 months on the protocol for me keep up the good work you look so good aswell go keep going! we will fight the Fibro Battle!! love Nicole

[PAINalamode]

Great video Diana. Your radiant personality is not under the cloud of fibro today. It's neat the way you've combined counsel and entertainment in this video.