Anyone else with Fibromyalgia?

BrendaLee

I'm just wondering if anyone else here suffers from fibromyalgia? It certainly does add an extra challenge to weight loss. :yawn:

jfilon

I've had fibro since I was 12 years old. It's been a hard struggle, balancing diet, exercise, and pain management. But trying to stay fit has certainly helped keep it in check. I'm here if you ever want to rant about it, haha!

Fit4Vet

Had it for about 3 or 4 years now. It's not bad - doesn't keep me in the bed like some others I've talked to, however it's a pain (pun intended) when it acts up.

Seems to me that if I can get my workouts in, I have less symptoms than if I don't.

Even on my extreme days, I still try to get in at least a good stretch.

BigAnn

i've had it for several years. Exercise does help. However, mine is mainly in my hands. It makes it hard to do anything that involves holding / gripping.

BrendaLee

Not that I'd wish it on anyone (well...maybe one or two people), but it's good to see I'm not alone. I've been afraid that pushing myself with the exercise- which I have been doing lately, would make my fibro symptoms worse, but that hasn't been the case...yet. I'm hoping that getting the weight off will get me a big step closer to feeling "normal".

jessmomof3

I don't but my Mom does. It is hard to see her suffer on her bad days. She does work out and stretches every day. She says the work outs do help but some mornings are really tough for her.
She also goes to see an Accupressurist every 10 days - 2 weeks or so. It really helps, she says it's painful massage but she really works out the painful spots for my Mom.

Sorry to see others suffering as well.

Jess

BrendaLee

Today was the first day since I've started working out (the past couple of weeks) that fibromyalgia just would NOT let me exercise. I've come to look forward to my cardio, and was dreading the day that I was too weak or in too much pain to workout. I'm hoping it passes quickly, because when I can't work out, I have a hard time staying motivated. :grumble:

ozarkcontessa

I was officially diagnosed with Fibro last week... Its been a couple of years going from you have RA to depression, to Fibro... Finally saw my doctor who specializes in Fibro and with all the test results, my exam she says... its not RA... Thank God... however, the pain... oh my God the pain of Fibro.... ughhh I am praying the walking, and diet will give me some relief... I know my weight plays a huge role in the pain on joints, muscles and nerves.... This site just might be an answered prayer!
One day at a time... that is what I tell myself... I move more today... means I will move more tomorrow...
I appreciate your asking this question... I don't feel so alone now either!
Thanks!

BrendaLee

I was officially diagnosed with Fibro last week... Its been a couple of years going from you have RA to depression, to Fibro... Finally saw my doctor who specializes in Fibro and with all the test results, my exam she says... its not RA... Thank God... however, the pain... oh my God the pain of Fibro.... ughhh I am praying the walking, and diet will give me some relief... I know my weight plays a huge role in the pain on joints, muscles and nerves.... This site just might be an answered prayer!
One day at a time... that is what I tell myself... I move more today... means I will move more tomorrow...
I appreciate your asking this question... I don't feel so alone now either!
Thanks!

The pain of fibro is something someone without it couldn't understand. I've tried to explain to many people what it's like, and I always feel like I fail to come close to explaining it. Do you have fatigue and muscle weakness with yours?

I pray (to the universe in general) every day that they'll find out what causes this and find a cure or at least a treatment that works well. :flowerforyou:

ozarkcontessa

The pain of fibro is something someone without it couldn't understand. I've tried to explain to many people what it's like, and I always feel like I fail to come close to explaining it. Do you have fatigue and muscle weakness with yours?

I have a lot of fatigue... I go to bed tired, I wake up tired, I live tired, :yawn: going down stairs is worse than going up... ughhh...
I agree with you, I pray they find a reason and a cure, that does not require a medicine cabinet full of drugs to make a difference.

One step at a time my friend, one single step at a time.... God will take care of the rest

ilike2moveit

Sounds miserable. What does the pain feel like and is it all over?

BrendaLee

It's head to toe pain. You're very tender all over....you basically wake up feeling like you've been hit by a mack truck while you "slept".

ozarkcontessa

The worst is... your tired, tired, tired... :yawn: you can't sleep and if you sleep to long...like over 5 hours... you can't hardly get out of bed in the morning... so you try not to... and because of lack of sleep it compounds the problem... I think Healthybefore40 said it best.... like you have been hit by a Mack truck... :frown: but some days it feels like the truck backed up to see if it hit you then moved forward hitting you again...ughhh.... but you take it one day at a time, and get a really great doctor like I did who helps to manage the symptoms... I do a lot of praying too, my faith in the Lord keeps me strong...and I quilt... I love to quilt... fabric and chocolate... almost make anything bearable....

gemiwing

Imagine the worst night of sleep you've ever had on the worst bed ever. You wake up, gritty eyed and slightly dizzy. Your bones hurt. Your joints hurt. Your muscles hurt.

Imagine now waking up the next day feeling the same way- but only worse because your body hasn't healed from the last bad night of sleep.

Keep adding the days and that's pretty close to the overall 'crap' feeling of fibro. It stinks.

:grumble:

ozarkcontessa

Imagine the worst night of sleep you've ever had on the worst bed ever. You wake up, gritty eyed and slightly dizzy. Your bones hurt. Your joints hurt. Your muscles hurt.

Imagine now waking up the next day feeling the same way- but only worse because your body hasn't healed from the last bad night of sleep.

Keep adding the days and that's pretty close to the overall 'crap' feeling of fibro. It stinks.

:grumble:

yep, yep, yep... you know my life... ughhh:glasses: at least with this message board we know we aren't alone... that makes this a bit easier... not that I agree misery should love company but if we know there are other people who understand when you say... I can't do it right now.. its not because of lack of desire..its is just the pain...

BrendaLee

Imagine the worst night of sleep you've ever had on the worst bed ever. You wake up, gritty eyed and slightly dizzy. Your bones hurt. Your joints hurt. Your muscles hurt.

Imagine now waking up the next day feeling the same way- but only worse because your body hasn't healed from the last bad night of sleep.

Keep adding the days and that's pretty close to the overall 'crap' feeling of fibro. It stinks.

:grumble:

That is a perfect way to describe it. I wonder how much of it is related to the inability to actually SLEEP.

BrendaLee

When did each of your first notice fibro symptoms? What were your first symptoms?

I've had IBS since I was little, but the first real indication that something was wrong (which I now know was an indication of fibro) were the "weak spells" I started having when I was a teenager (it was actually after I got very sick with the chicken pox). They just got progressively worse until they became one big weak spell. It all got a million times worse after having a baby...I feel like I never recovered from that.

lotusfromthemud

Me, too. Here's my whole story, if you're interested.

http://www.myfitnesspal.com/blog/viviakay?month=200811

leshawnturner

You all have just brightened my day!!! I was feeling really bad this morning because this whole week it has been a trial trying to get up and workout and I have been more tired than usual this whole month I knew that it is my fibro rearing its ugly head. I can deal with the body aches, because now I have fibro and plantar flacitis giving me grief, its the extreme fatigue that makes it ridiculously hard to function. I agree with whoever said going down the stairs is the worst. I know that I need to lose weight to improve the fibro but when I do too many intense work outs I hurt severely then I have to stop and I have trouble start back up again. Its an endless cycle!!!!!!

I wish I had a great doctor to go to, but I can't find one here in OK. They all seem to act like it doesn't exist. I need to find a doctor who I can have write a report to the bar association to give me extra time and breaks to take the bar exam. Do you know how much pain I'll be in at the end of 3 days of sitting for hours on end while taking a test!!!! Not too mention the fatigue and IBS!!! If anyone knows of any doctors that treat fibro in the OKC, OK area or in Dallas, TX PLEASE LET ME KNOW!!!!

ozarkcontessa

You all have just brightened my day!!! I was feeling really bad this morning because this whole week it has been a trial trying to get up and workout and I have been more tired than usual this whole month I knew that it is my fibro rearing its ugly head. I can deal with the body aches, because now I have fibro and plantar flacitis giving me grief, its the extreme fatigue that makes it ridiculously hard to function. I agree with whoever said going down the stairs is the worst. I know that I need to lose weight to improve the fibro but when I do too many intense work outs I hurt severely then I have to stop and I have trouble start back up again. Its an endless cycle!!!!!!

Your right it is a vicious circle, but every day you take a two steps forward and even if you take one step backwards it is progress... Going down the stairs, I feel like grandma moses and I am not even fifty yet! I do a lot of praying... I also made a point of seeing a female doctor because I got tired of telling male doctors my symptoms and they shake their heads and say well if you loose weight... News flash when I lost 138 pounds in 2003-2004.... I still hurt, I still was exhausted, I still had stomach issues... my 'doctor' who is really a Nurse Practioner... is just the most awesome medical person I have ever met. I ask God to bless her... she listens... :flowerforyou:
One thing I did when I saw her two weeks ago, I made a list... Stomach, muscles, legs head. and outlined my symptoms... two weeks later... my feet cramps are gone at night, pain is tolerable with the new meds, and my goal is to walk five days out of seven... today was a lousy day for me... but there is tomorrow

BrendaLee

:grumble:

You all have just brightened my day!!! I was feeling really bad this morning because this whole week it has been a trial trying to get up and workout and I have been more tired than usual this whole month I knew that it is my fibro rearing its ugly head. I can deal with the body aches, because now I have fibro and plantar flacitis giving me grief, its the extreme fatigue that makes it ridiculously hard to function. I agree with whoever said going down the stairs is the worst. I know that I need to lose weight to improve the fibro but when I do too many intense work outs I hurt severely then I have to stop and I have trouble start back up again. Its an endless cycle!!!!!!

I wish I had a great doctor to go to, but I can't find one here in OK. They all seem to act like it doesn't exist. I need to find a doctor who I can have write a report to the bar association to give me extra time and breaks to take the bar exam. Do you know how much pain I'll be in at the end of 3 days of sitting for hours on end while taking a test!!!! Not too mention the fatigue and IBS!!! If anyone knows of any doctors that treat fibro in the OKC, OK area or in Dallas, TX PLEASE LET ME KNOW!!!!

I know what you mean about the workouts- I want to workout so badly every day, and I just can't. Even the days I do workout, I have to push through so much fatigue that I'm pretty much falling on the floor during the workout. I went swimming yesterday and did some walking laps in the water...they were quite enjoyable. You have the best range of motion in the water, and the cold pool feels like a big old ice pack. Of course we fibromites don't adjust to the cold water as quickly as a "normal" person. :grumble:

It's sad that you don't have a good doctor...mine isn't the greatest when it comes to the fibro, but at least she acknowledges it. Try checking in with a fibro support group in your area- they'd be sure to have some advice for you about doctors. Here's a group in Dallas:

http://www.meetup.com/North-Texas-Fibromyalgia-Support-Group/

kookla33

I just read that 80% of people who have Fibromyalgia have sleep apnea. Google it or check out this link:

http://www.fibromyalgia-symptoms.org/fibromyalgia_sleep_disorders.html

gemiwing

First off- Much love and huge ((((hugs))))) to my fibro sisters! We are stronger than they will ever know!

I have an appointment with the trainer at my new gym tomorrow. I want to give this workout my all and kindof show him that I'm not a fat lazy bologna belly.... but I'm scared he'll push me too hard and I'll get sick again. :frown:

I'm worried that he'll want me to workout like they do on the Biggest Loser show, and I just can't work out like that. He wants me to weight lift three days a week- I can't! I'd be walking with crutches after two days. I've made so much progress and I'm scared I'm going to lose it all because the fibro will flare up again.

*sigh* Any tips?

BrendaLee

Make sure you find a trainer (if possible) who understands the limitations of fibromyalgia.

One of the things I hate most is knowing that people- family, neighbours, etc., think I'm just a lazy fat person. I can't STAND people thinking that about me. I hate having to say no when a family member is sick and needs help with housework, or a friend needs help moving...I would volunteer to help in a heartbeat if I didn't have fibromyalgia. Unfortunately, what energy I do have needs to be conserved for just existing some days.

Good luck with the trainer!

lotusfromthemud

First off- Much love and huge ((((hugs))))) to my fibro sisters! We are stronger than they will ever know!

I have an appointment with the trainer at my new gym tomorrow. I want to give this workout my all and kindof show him that I'm not a fat lazy bologna belly.... but I'm scared he'll push me too hard and I'll get sick again. :frown:

I'm worried that he'll want me to workout like they do on the Biggest Loser show, and I just can't work out like that. He wants me to weight lift three days a week- I can't! I'd be walking with crutches after two days. I've made so much progress and I'm scared I'm going to lose it all because the fibro will flare up again.

*sigh* Any tips?

Find a trainer who knows what fibro is. I shopped around and then finally found a trainer whose mother has fibro. It makes all the difference. I say if the trainer says "huh?" when you tell them you have fibromyalgia, then that is not your trainer.

I find that more than two weight lifting sessions a week is too much for me, but everyone is different. I do cardio almost every day, though and yoga on my non-lifting days (isometric type) That being said, don't let the trainer go too easy on you you want to get your money's worth. . .

Make sure you budget extra rest/sleep time when you either start or increase your exercise. IMHO, that's the key to avoiding an exertion exhaustion.

Also, a very valuable thing a doc. once told me is that usually "your muscles will hurt, but they won't be hurt." Within reason, fibro sisters have to push through some pain. . .it's just how it is. We're so conditioned to thinking pain=injury that we panic (at least I used to), but our pain does not equal injury. Our pain just equals pain.
:flowerforyou:

gemiwing

Thanks guys, I really appreciate it!

I'm going to be firm on what I cannot do, but open to being in a bit of pain. What's one more degree of pain right? :laugh: Just pile it on, I probably won't notice. *girn*

I'll keep in mind the pain/hurt idea, that can help me push through a bit.

I also wish I wasn't sick so I could be strong. I'd love to be an Amazon some day! Now where did I leave that magic lamp?

lotusfromthemud

You can totally be an amazon!

My trainer told me the other day "I think you're my strongest female client."

The illness doesn't define you. You define you.

ozarkcontessa

I hate having to say no when a family member is sick and needs help with housework, or a friend needs help moving...I would volunteer to help in a heartbeat if I didn't have fibromyalgia. Unfortunately, what energy I do have needs to be conserved for just existing some days.

BrendaLee at least you are smart enough to say no.... me... I say yes... then I pay for it for days... ughhh I love to walk, and used to bike ride all summer... my husband and I just met a friend this morning for coffee... she is in great physical shape a size 2 on a bad day... she wants to go bike riding... I would love to, but I am afraid I will do one of two things... 1. go and grit my teeth keep up with them to five miles one direction and then cry :sad: for five days because of the pain.... 2. hold them back or end up biking alone, because I just can't handle it... so instead I evaded the question... I hate that... I really, really want to go... I just hate having to explain... and then as you said they look at you like (I am the lazy fat friend)..... but.... you my fribro friends are giving me courage to not be ashamed of my lack of ability... its only been a few days, but you all are so wonderful!! We no longer have to suffer in silence... I will go walking again tonight... gently...

ozarkcontessa

You can totally be an amazon!

My trainer told me the other day "I think you're my strongest female client."

The illness doesn't define you. You define you.

I love this!!! thank you!

BrendaLee

[/quote]
BrendaLee at least you are smart enough to say no.... me... I say yes... then I pay for it for days... ughhh I love to walk, and used to bike ride all summer... my husband and I just met a friend this morning for coffee... she is in great physical shape a size 2 on a bad day... she wants to go bike riding... I would love to, but I am afraid I will do one of two things... 1. go and grit my teeth keep up with them to five miles one direction and then cry :sad: for five days because of the pain.... 2. hold them back or end up biking alone, because I just can't handle it... so instead I evaded the question... I hate that... I really, really want to go... I just hate having to explain... and then as you said they look at you like (I am the lazy fat friend)..... but.... you my fribro friends are giving me courage to not be ashamed of my lack of ability... its only been a few days, but you all are so wonderful!! We no longer have to suffer in silence... I will go walking again tonight... gently...
[/quote]

Ahhh bike riding. I love biking...I went last night for the first time in 3 years, and that's when you realllly realize how out of shape you are. Biking is hard! I have really weak leg muscles, so I could only bike for 10 minutes in one direction, and then suffer my way back. If my butt didn't hurt so much today, I'd probably go again though.

I try most stuff...if I think there's even a chance I can do it. I tried skating a few years ago...that was rough. I was on the skates for 2 minutes and had excrutiating pain in my feet. I now know skating is not something I can do...I'm sure I'll try again some day though.

_________

So, I'm having a major issue right now. I can't sleep. It takes me hours to fall asleep, then when I do, I wake up about 15 minutes later, fall back asleep, wake up, sleep, wake...and that process goes on all night. I'm exhausted, and it's really taking a toll on my psyche. Have any of you had sleeping problems this serious? What did you do to get some sleep? I dread going to bed because I know what torture my night is going to be. :yawn: Sooo tired and cranky!

lotusfromthemud

BrendaLee,


do you use caffeine at all? (if so, it will really help if you don't have any after noon) Or other supplements/meds? I find that I have to avoid even my multi-vitamin too late in the day.

Do you take any supplements or meds for sleep? I've had good success with both 5-HTP and melatonin for sleep. As part of my fibro protocol, I take 5-HTP twice a day. (I'm not a doctor!!!! Just my experience.)

I also have a super-sacred-sleep ritual: Every night I take a hot bath, sometimes with lavendar oil and a little coconut oil. Also, I dim all the lights in my house when it gets dark, and I find this seems to help me wind down.

A million other things. . .are you stressed? Is it close to your TOM? I always have insomnia a few days a month, just hormones. . .

Hope some of that helps.:flowerforyou: