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disneyfanfamily
12-29-2006, 07:55 PM
Just found this new board. This is a great board! I am so sorry that people are going through such awful things. It breaks my heart...

I feel that what I am about to ask is minor, but I would like to know if anyone else out there has fibromyalgia, and what do you do for your pain, tiredness, etc.

I was diagnosed a few years back after I was in bed off and on for a few months thinking I had the body ache flu. I have always- as far as I remember- have had terrible neck pain and shoulder/back pain. Headaches everyday. I do not sleep unless I take medication.

I try to excercise regularly. I have never been depressed until this past summer. A couple of months were rough for me. Depression is so foriegn to me that I could not even admit to the depression until I started "snapping" out of it.

I get tired of the neck pain. My DH is wonderful about massaging me every night for at least 1/2 an hour. I would be miserable if he did not do this.

If anyone has any suggestions for relief - herbal, home remedies, etc. I would love to hear them....

I seem to have more of a minor case then a lot of those who have been diagnosed. But I want to get feeling better, and definitely not get worse...

Shugardrawers
12-29-2006, 09:34 PM
My mother has fribro but i don't understand it at all. Please help me. Can you direct me to a website that will educate me??

zumbergc
12-30-2006, 03:27 PM
I don't necessarily think its home remidy.

Talking to friends, and then confirming their information online.
They recommended to me to make sure to be taking supliments for
magnesium, calcuim, zinc, and the B vitamins.

Also, make sure and try to find stuff your body absorbs.
I was lucky and found a calcuim mag combo that my body absorbs.
The regular caltrate, and similiar calcium vits at the supermarket, drug stores, I don't absorb.
When I've on rare occasion not had enough of the cal-mag that work, my arms, legs, back really ache super big time. Its horrible. I'll suppliment with different types you can get at the local gnc, drug store, but they leave me in lots of pain.

I will say when starting to take magnesium for the first time. Start slow. Like if the vitamins say take 4 of them a day. I would start with 1-2 a day, and see how your system goes, you can get the runs if all of a sudden you start taking all 4. After a few days or a week, slowly build up the dose to the 100% you should be taking a day.

I've found that acupuncture is helping with the pain some. At first I was at 2 times a week, then one. I kind of think I need to go back to the 2 days a week, I'm under lots of stress right now, which makes my muscles all tight.
I've also done massage therapy and chiropracter which helps too.

Wish you luck,

disneyfanfamily
12-31-2006, 12:40 PM
Thanks for the info. I never put a calcium supplement on my lists of possible helps. I need to take calcium anyway (I am 5 foot and a little of 100 pounds), since I have a good chance at getting osteo.

How do you know if it absorbs???

I have tried xango. I did not notice a difference, but I only tried it for 3 weeks. It is expensive.

If anyone else has any other ideas, I would love to hear them.

Angela

sumrmist
01-01-2007, 10:18 PM
when my mom was first diagnosed they prescribed a muscle relaxant called baclofen . it is an older med and most docs dont use it but it sure worked for her for a long time.

Jennasmomma
01-01-2007, 10:27 PM
I have FMS as well. However I dont have any remedies. My dr doesnt have me on much. (I need to find a new dr).

Just try to rest as much as possible. I get tired very quickly.

((hugs)) Im on disability for mine.

zumbergc
01-01-2007, 11:21 PM
When I talk about absorbing. In particular I believe its the magnesium.
When I take other magnesium suppliments my muscles in my hands, arms, legs ache like crazy, like on the 2 occsaions in the last couple years I accidentliy ran out.

I had no idea about the magnesium until after I started taking the suppliment my chiropractor recommended.
The first time I decided to try the citrical calcuim magnesium blend, it was way cheaper than the brand I bought at the chiropractor. So, i figured I save money buy buying that brand, Be carefule to note that the magnesium didn't add up to the 100% of the RDA too.
Well, I switched to the citrical brand, and bam in a 2 days I was in lots of pain, and I think by day 3 I was back at the chiro and picked up the brand that worked. Then I took the pills that day, and I felt better the next day, so I know its the calcium mag suppliment that really helps.

Magnesium helps your muscles relax.

About how do you know if your really absorbing it, I don't have a clue, except when I take a different brand, I get in pain, so I conclude its not absorbing.

I also did the un-scientific thing of sticking one pill of the citrical and one pill of the cal-mag (Nutura brand - green bottle) in a glass of water, seperate glasses.
The cal-mag nutura dissolved. The citrical one just remained a blob of pill and still hard as a rock. Of course I didn't wait a long time, maybe a couple minutes tops.

disneyfanfamily
01-02-2007, 06:46 AM
I have been prescribed Trazadone and Flexeril - a sleeping pill and a muscle relaxant. It has gotten expensive and I hate being on pills all my life. I haven't taken any meds for about 2 years, and I am beginning to think I need them - at least until I find another way to feel better.

Anytime I take sleeping pills or the muscle relaxant, I just drag all day the next day. It takes a good 6 weeks for my body to get use to taking the drugs. I am tired anyway, let alone dragging even more because of the meds.

This time of year - winter - I get a lot worse, and it gets frustrating. I am a active person, but in the winter (sometimes in the summer, but less frequently) I have a couple days a week where I just don't feel well and can't do anything. I guess that is when depression sets in...

I will try a magnesium supplement. Maybe it will work some.

I am sorry for all of you who have it worse than me. Like I said, I seem to have a mild case of it. On the days I feel horrible, I just can't imagine feeling like that day after day. But for me, winter has come, and more and more days I have not felt well....

I Heart Disneyland!
01-06-2007, 11:51 PM
I too have fibromyalgia. I've had it for 7 years now.

I work, but, only 3 days a week. It's about all my body can handle.

As for relief...I've not found a really good combination, but, an anti-depressant and seizure medication mixture is what I am prescribed to change the brain chemistry as my doc thinks it is a misfiring in the brain that is causing it. I also have pain meds for when I need them. I find that they do very little except to easy my tension a bit, when I flare up.

I take a lot of hot baths too! :grouphug: To all of you suffering.

carrie s
01-09-2007, 12:27 PM
My mom has it.She is not doing well at all.She has to use a walker in the house and a wheel chair when she goes out.Shes going to rehab at the hospital. She gets the shakes.

disneyfanfamily
01-09-2007, 02:03 PM
I was told by a health store owner to stop eating anything with sugar and flour. :confused: That is everything I love!!!!

So I have cut back quite a bit in the last several weeks. Gone to Diet pop (not my favorite, but at least it has some flavor) and cut back on lots of breads - one bun per sandwich, or using tortillas, etc. Not eating as much yummy desserts. Have I noticed any difference yet? No....But I will try a while longer.

Also have started lightly jogging on my treadmill. It wakes me up, warms me up, and that helps for a while.

I have been feeling pretty yucky lately. The cold weather just tightens up my muscles and I feel like I have the body flu. (mainly in my neck, shoulders, upper back and head.) I find it interesting that people have fibromyalgia and have different pains in different places....

If I find a help, I will be sure to post!

jann1033
01-09-2007, 02:15 PM
I don't have fibro , i have cfs since 1988 haven't worked since then and at that time i didn't have enough trigger points to "have" fibro( think it's 11, i had like 8?) although i know most with cfs do so not sure if it's muscle pain from fibro or cfs,,,who knows...i have tried most everything and about the only thing i find that really gives me relief is ( sorry brain is not good today and can't think of the actual name) but when you rest a lot between what you do. i was recently dxed with diabetes and think that has thrown the cfs off as things aren't doing well right now. but Usually if i am doing decent i just pace my self...put a load of laundry in, lay down, load the dishwasher, lay down. i try my hardest not to get overtired, normally don't get dressed , just put on sweats etc and shower so i don't waste energy etc. it used to be my hands would start to hurt when i started to overdo, for some reason now they don't hurt till it's to late. but i try to really pay attention and don't get to tired and that helped me stay fairly stable for 10 yrs ..I'd have flares but could function up to about 50% pre cfs other times...had a bad flare about 7 yrs ago and now i am basically at home all day everyday, occasionally if i rest up tons before hand, don't do my basic stuff for a week or so, i can go do something like took grandbaby to zoo, just took the tram everywhere and collapsed the next day:rotfl2: ...thankfully i have a very supportive hubby who does all the outside and inside house work now...I'd be sunk with out him...couldn't get any gov help for cfs but luckily(???) i have an av malformation and another chronic syndrome from that has given me leg ulcers that are unhealable now so i could get medicaid for that..
my previous insurance com. ditched me long ago and couldn't get ssi due to not being able to go to Dr due to not having insurance so not up to date records.went round and round and once i got the medicaid which is what i really needed i decided to "forget" about the ssi, to much of an energy hog for not much payoff since they denied my first go round when i first got sick and now say it's to long since i worked so fill out this other ream of paperwork that'll put you in bed for a week so we can deny you again.. , no thanks, don't mind if i don't....talk about a vicious cycle
i also think it's nice to have support but i do think some of the support groups i have visited ( one on about.com comes to mind) can turn into "I'm worse than you" sessions and imo that isn't good...I'd rather be a "person with some limiting health problems" and i am determined not to be classified as a big ball of cfs -diabetes-kipple weber syndrome( av stuff) and possible ms...so i do try to work at my last remaining hobby photography as much as i can so i can feel normal in some areas of my life
I'm glad you started this...i was thinking of it also but wasn't sure if i wanted to open the potential "you are a bunch of whiny hypochondriacs" :rotfl2: :rotfl2: routine that seems to accompany cfs/fibro everywhere we don't go:laughing: ( hehe get it? can't go out so instead of everywhere we go? hehe)

ok i'll shut up now

jann1033
01-09-2007, 02:24 PM
I was told by a health store owner to stop eating anything with sugar and flour. :confused: That is everything I love!!!!

So I have cut back quite a bit in the last several weeks. Gone to Diet pop (not my favorite, but at least it has some flavor) and cut back on lots of breads - one bun per sandwich, or using tortillas, etc. Not eating as much yummy desserts. Have I noticed any difference yet? No....But I will try a while longer.

Also have started lightly jogging on my treadmill. It wakes me up, warms me up, and that helps for a while.

I have been feeling pretty yucky lately. The cold weather just tightens up my muscles and I feel like I have the body flu. (mainly in my neck, shoulders, upper back and head.) I find it interesting that people have fibromyalgia and have different pains in different places....

If I find a help, I will be sure to post!

2 things i see here...1)aspartame ( ok how ever it's spelled) some say makes brain fog worse, and try whole grain stuff and see if that's better...and 2) my muscles do the same thing in those areas plus my butt and legs get super tight(normally jello like and not that they look like butt of steel, just feel that way :rotfl2: :rotfl2: :rotfl2:)
i am supposed to only eat whole grains due to diabetes and that does seem to help with stabilizing energy levels better for me( not a cure but any little bit helps)

jann1033
01-09-2007, 02:35 PM
I have FMS as well. However I dont have any remedies. My dr doesnt have me on much. (I need to find a new dr).

Just try to rest as much as possible. I get tired very quickly.

((hugs)) Im on disability for mine.
my bold... you hit the nail on the head...i live a rural area and have tried for 15 yrs to find a dr who didn't literally just snort and wave their hand to dismiss me when i mention cfs. the one who dxed me was great but moved( plus he saw me at my worst, got to know me etc) . i finally found a dr who has ms so she at least seems more open than some...last time i went in i was not doing well but it was for diabetes check and she kept asking me if i was ok, i kept saying it was the cfs but later i realized that might be the first she saw me fairly cfsy, and before she felt a lot of the fatigue was diabetes related which i know it isn't since i didn't have that for 15 yrs of cfs( or so, not sure exactly when i got diabetes)...hopefully it will make her think since i'm not sure how up on cfs she is although she did know it's not the same as fibro which is more than most have figured out.

Tinker'n'Fun
01-15-2007, 01:00 PM
I feel so bad for all of you...

When I was 16 I had a severe case of Epstein Barr, which later on in life re-surfaced with Hashimoto's Thyroiditis, (a weird strain as it took away both my thyroid and my gallbladder and has recently attacked my lungs). With autoimmune I also experience Fibro. I was diagnosed finally in 2000 and it only took me 3 months to get aid from the govt. This is when I truly realized how debilitating this disease can be. I have gone through every treatment possible, all the different drugs. I finally decided to stop all drugs except one pain pill at night to sleep, and my Xanax so I don't bite the kids heads off:rotfl2: ! It sucks, but I watch my food, make sure to be as active as possible, and love my family. Yep, just love my family!! They are my best medicine. Basketball games for DS, while hard to get there, take my mind off of me! DD is a shining light that brightens even the most terrible days. DH is the most kind, gentle person anyone could have! Thank you God for sending him my way! He is my best friend. So that leads me back to the thread... I guess it never gets better, but you can make it stabilize with some work. I am on a down cycle right now, my strength is decreasing daily! But my best advise is the best medicine will be your family and friends. I recommend the friends here as we all understand!!!!!!!!!! And always will! Diane

I Heart Disneyland!
01-17-2007, 11:52 PM
My mother has fribro but i don't understand it at all. Please help me. Can you direct me to a website that will educate me??

Here's a good website for you.

http://www.fmnetnews.com/

And this one too.

www.fibrohugs.com

jann1033
01-18-2007, 10:36 AM
i like this site as it keep you up to date and you can pick the kind of info they send you, both illness and if you want research , activism etc...http://www.co-cure.org/topics.htm

hematite153
01-25-2007, 07:50 PM
I was told by a health store owner to stop eating anything with sugar and flour. :confused: That is everything I love!!!!

So I have cut back quite a bit in the last several weeks. Gone to Diet pop (not my favorite, but at least it has some flavor) and cut back on lots of breads - one bun per sandwich, or using tortillas, etc. Not eating as much yummy desserts. Have I noticed any difference yet? No....But I will try a while longer.

Someone else pointed this out but aspartame can cause problems. I.e. you should probably also try avoiding most diet pops. Diet Crushes use splenda instead which passes through your body without digestion--more expensive but much healthier. That said, if you are going to look at diet (yes, diet can influence my pain levels) you should probably consider something more thorough since you'll find trace amounts in places you don't think about. (I'm extremely sensitive to chicken and you'd be amazed with how many odd places it turns up.) Plus, if you do have sensitivities, cutting back isn't enough to give your body a break. (All of this advice comes from experience and I am really typing it as a reminder to myself that I should be paying more attention to my food.) Maybe see if there is a nutritionist, or someone else, who can work with you through elimination and food sensitivity testing.


Also have started lightly jogging on my treadmill. It wakes me up, warms me up, and that helps for a while.

I have been feeling pretty yucky lately. The cold weather just tightens up my muscles and I feel like I have the body flu. (mainly in my neck, shoulders, upper back and head.) I find it interesting that people have fibromyalgia and have different pains in different places....

If I find a help, I will be sure to post!

I find that everyone's fibro is a bit different. Thus, what works is different for each of us. Workout-wise, I find that early in a work-out I get exhausted and run down and feel like I can't get through it. But, if I push through that phase, I eventually hit a rhythm that feels like I can go forever. If I make it to this heavier workout I'll be exhausted that night but in less pain for the next few days.

Mg is a definite factor to consider--although I agree that the quality of supplements varies widely. Most drs will say that you should take Ca:Mg in ratios of about 2:1 but I find that with fibro the ratios should be more like 1:2 (i.e. take a lot of Mg). Yes, working it up can be a challenge and can lead to the runs--I've found one brand that doesn't cause this problem--but, I notice the difference. (Okay, I went upstairs to check...my favourite Mg supplement is Country Life: Nerve & Osteo Support). A quick check on absorption is chocolate cravings. Do you look at chocolate and think, "wow, I really want that!" If so, your body is likely craving Mg since pure choc has lots of it--but not the stuff you find on the shelves. I find that if I have my Mg up as high as I should I'm not interested in chocolate and I'm barely interested in sugar.

The other thing that I have found useful (but you have to give it 30 min twice a week to get going) is network chiropractic. Instead of the speedy process of traditional chiro, network is supposed to slowly train your nervous system.

I got myself to a point where heavy pain was rare when I watched diet, ran heavily (never 2 days in a row but generally for at least an hour at a time, 2-3 times a week), used vitamin supplements (predominantly Mg) and got network chiro 2 days a week. I managed to hold this for about 2 years but then let it slide. (When you feel good, the supports seem less necessary, but the pain is starting to get worse again a few years after letting things go.)

Good luck!

disneyfanfamily
01-26-2007, 04:57 AM
hematite - thank you. Very informative. I will try your brand of MG. I do not take any supplements except calcium - when I remember. Exercise is a necessity for me. However, I tend to break it up all day long. I notice I feel better when doing 15 minute increments several times a day.

I do not crave chocolate - I don't like chocolate.

I hate giving up so much stuff. Gets sort of depressing, but I rather do that than keep aching....

LauraAnn630
01-26-2007, 05:56 AM
Just back from the ER with terrible pain. I was diagnosed with fibro last year.
The ER doc said to try Doxepin.

Anyone ever try it?

Right now Im on Flexirail (sp)

This is a miserable disease!

I havent worked in 3 years. Its very depressing. Im 37 years young with 2 kids! A lot of the time I feel like a real loser. Even though I know thats not true.

They have a Fibro Clinic here in Cleveland. They want 350.00 to walk in the door. They do not except insurance.:confused3

hematite153
01-26-2007, 09:24 AM
I do not crave chocolate - I don't like chocolate.

I hate giving up so much stuff. Gets sort of depressing, but I rather do that than keep aching....

I'm sure there are other Mg rich foods--you might be able to figure out which of your cravings is related. I also find little interest in sugar if I get my Mg up. But, then again, it's possible (and likely) that your fibro is different from mine.

One of the things about giving things up is that you can always add them back in later if you find they're unconnected.

LauraAnn630--you're right, it is a miserable disease.

Good luck!

jann1033
01-28-2007, 05:44 PM
Just back from the ER with terrible pain. I was diagnosed with fibro last year.
The ER doc said to try Doxepin.

Anyone ever try it?

Right now Im on Flexirail (sp)

This is a miserable disease!

I havent worked in 3 years. Its very depressing. Im 37 years young with 2 kids! A lot of the time I feel like a real loser. Even though I know thats not true.

They have a Fibro Clinic here in Cleveland. They want 350.00 to walk in the door. They do not except insurance.:confused3

hey laura , i live in geauga county...you think cleveland is bad, the sticks where i live are even worse:rotfl: the drs basically are in 1988 as regards cfs although fibro is making a few headroads. and you might not be missing much at c clinic at least from what i heard about their cfs program it's almost all "all in your head" therapy and exercise.... the exercise part is which is fine for fibro but basically kills everyone with cfs. if you ever visit the cocure website i think they have a list of drs..didn't have any for cleveland last i looked but might now

i was 34 when i got cfs, 2 grade school kids. you just have to do the best you can

hematite153
01-28-2007, 07:05 PM
...their cfs program it's almost all "all in your head" therapy and exercise.... the exercise part is which is fine for fibro but basically kills everyone with cfs. ...

Yeah. The fact that exercise helps convinces me that fibro is infinitely preferable to cfs. It makes me feel like there is something I can do.

binny
01-28-2007, 09:30 PM
we have a good thread going on the CB about Fibro as well. THere are a lot of here who have it.


I have had it for a few years now as well.

It is a different creature in everyone it seems. My pain tends to hang out in my chest area and my knees. My trigger points are strong though. The fog is my worst. I feel like a real blonde some days (I can say that Im a blonde lol)
I have what I call a "ciggarette spot" for lack of a technical term. Its a spot on the front of each of my thighs, just above the knees, that every so often will burn really badly. Not scorching but just feel really intensely hot. Its about the size of a ciggarette hence my name for it.:confused3

I also have the tingly spine thing. That makes me crazy and is my cue to slow down.

I have flexeril and tramadol for bad days and take lamictal at night to help with the lack of sleep.

Exercise has to be done but for me in moderation if I push through I pay for it for it for days. I have to ride the bike though or walk so I can get some exercise and stay awake.

anyway, that is my part of the conversation. I hope that helps a little.

Do a search for fibromyaglia doctor and your city in Google. I came up with a bunch Id never heard of. Thankfully my GP is wonderful and does a great job with me. I would leave in a heartbeat though if I didnt think I was getting the attention I needed.

Good luck in finding the right doc I think it is key.

Come and find the thread on the CB it has some fantastic information!

hematite153
01-29-2007, 12:03 PM
I needed a brief vent and this seems like a good place.

3 hrs ago I got hit by a guy running a red light. Realistically, it was minor and most people would barely feel it. But, with fibro, I have to keep my system balanced and I now have moving pains and random spikes throughout my body--Argh!

(When I'm in crisis, exercise doesn't help and I've been trying to get pregnant so I can't take many of the supplements I would usually use to get back in balance--argh!)

Thanks for listening!

jann1033
01-29-2007, 02:59 PM
I'm just thinking after reading this i should probably have my present dr test me again for trigger points since i haven't for almost 20 yrs....i wonder how much of my pain is cfs vs fibro...which if it's fibro and i could do something i wouldn't mind...
this probably would only be appreciated here but does anyone else have "typing dyslexia"... i figure it must be part of brain fog but sometimes i have to laugh...every other word is a mistake..if it weren't for spell check I'd look like i was typing alien-speak:rotfl:
binny i also think part of the problem is the lack of really good interpretation for what it is..some consider it the same as cfs( thankfully my present dr knows it's different and is up on the exercise lessness( is that a real word???;)) of cfs, i know one person with anxiety who was dxed as cfs then fibro ( depression can also have physical pain associated with it) and now depression/anxiety ( which the meds are helping so guessing they are finally right in the dx) although i also think of it as similar to ms...with that you can be in a wheelchair in a few yrs or never even know you had it. guess some things are just weird that way.
it only took me 5 edits to get rid of the errors this time:rolleyes1 :dance3: :rolleyes1

hematite153
01-29-2007, 03:14 PM
I'm just thinking after reading this i should probably have my present dr test me again for trigger points since i haven't for almost 20 yrs....i wonder how much of my pain is cfs vs fibro...which if it's fibro and i could do something i wouldn't mind...

It couldn't hurt to check. Although, the symptoms you describe sure sound like cfs...of course, it's possible to have both.

this probably would only be appreciated here but does anyone else have "typing dyslexia"... i figure it must be part of brain fog but sometimes i have to laugh...every other word is a mistake..if it weren't for spell check I'd look like i was typing alien-speak:rotfl:

:rotfl: Yep! I do that. I blame it on the fibro because I find it's worst when my general symptoms are at their worst as well. I figure there's some connection to how messages are getting through my system so that my muscular movements happen out of their intended order.

jann1033
01-30-2007, 11:04 AM
i read once that 75% of those with cfs also have fibro..although that was a while ago so maybe the thinking has changed.
i also wondered about myofascialitis( although that name doesn't sound right at the moment) as sometimes my skin just hurts ie when i get a warm shower and the water touches it. i was telling a friend of mine once it's like "layers" of pain, the bone then the joint then the muscle then the skin instead of just a "pain in my leg"...all slightly different and yet all the same appendage :lmao: if i could get rid of a layer or 2 that would be a "good thing";)