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janet 07-06-2002 09:58 AM

Fibromyaglia
 
Does anyone have fibromyaglia? I was diagnosed about 6 years ago and have been coping with the chronic pain, fatigue,musle pain, sleep disturbstances, etc. :(

Most of time I can manage it, with meds, elavil works the best for me. But now the increasing symptons are annoying. I try to keep a regular sleep and wake pattern, eat healthy, keep stress low. Now it affects my jaw, TMJ, and I suffer from Migraines....all of these are in the Fibromyaglia circle. Pain meds do NOTHING for me.

Weather changes affect me too! What a bummer....it has been wonderful here...hot not humid and all of a sudden it has turned to 50degrees at night. Now my body is kicking up a fuss. I feel like I have the flu, achy body, muscles, fuzzy brain, and also I am nauseous.

I would love:heart: to hear from other sufferers to see if they control their disease differently or have any suggestions or ideas.


Thanks

janet:daisy:

sportkat2 07-08-2002 07:53 AM

Hi Janet,

How were you diagnosed with this? I have all the symptoms of someone with this horrible thing and was just wondering how you found out for sure.
Thanks for any help you can give me,
Kathy

BackwoodsTess 07-08-2002 07:59 AM

Janet ,
I have had rheumatoid arthritis and fibromyalgia since 1989 and it can get VERY bad but you have to keep a good attitude and try to continue to do most of the activities that you always enjoyed even though it can be difficult. I have lots of headaches, "all over" body aches, depression, and severe fatigue. All you can do is try to live a healthy lifestyle and try to exercise and be as active as you can be. Your mental attitude can help a lot, even when you feel so bad that you are really down! On the very "bad" days take a well deserved break and other days try to do something that you enjoy, I sew, quilt, and craft and it helps me. I hope this little bit of info helps and remember you're not alone, lot s of people suffer from this condition...............BackwoodsTess

craftybkur 07-08-2002 08:54 AM

I have had fibromyalgia for a couple of years. I have tried all kinds of pain medications. I was on Paxil for awhile and that seemed to help except that it caused headaches. I am now on an antidepressant and celebrex. I seem to have it under control. I am hoping this is the answer for me. But keep fighting and trying new things. What works for one person may not work for another. So I have tried many things. All with a doctors advice. I see him about every 6 to 8 weeks to keep this under control.
Good luck to you and all of the people out there who have this disease.;-)

nana5545 07-08-2002 09:54 AM

Hi. I have had FMS for 30 years. They use to call it fibrositis.
I am also a diabetic. They say water exercise is very good for you. My jaw can be very painful, I have a hard time eating some foods. I also get terrible ear aches from drafts, air conditioning and fans. I also take celebrex and zoloft. I have good and bad days. I have learned that if you feel good don't over do it or else you will be sick for a couple of days. My right arm is really bad .I still do not sleep well and always wake up more tired then when I went to bed. Of course with my age I also have arthritis and other health problems. I just keep telling myself that it could be worse, I could have cancer or MS or something else. Keep smiling .:)
Charleeta

pamtanise 07-08-2002 10:05 AM

Hi!
 
I have FM also. I was diagnosed in '98, but believe I have had it all along, even when growing up, but I think it got alot worse after the traumatic pregnancy and birth of my son in '94. I also have some other problems: hypertension, gouty arthritis, hypothyroidism, heart murmur, depression and a host of other things due to the FM like migraines and IBS. I am on Celexa for the depression, and it has so far been the only thing to help the depression but it killed my sex drive! For pain and inflammation, I am on Relafen, Allopurinol, Colchicine, Percocet, & Flexeril. For the high blood pressure, I have to take Procardia, Maxide, Lebetalol, Cozaar, and have to have prscription Potassium supplements. For the hypothyroid, I have to take Synthroid the rest of my life.....no wonder I have depression!! :eek: What gets to me emotionally though is people who don't take me seriously, all I have heard all my life is "You're too young to be so sick!"

It took alot of experimenting (under the doctor's supervision) to find a combonation of meds. that helped any. I have come to the conclusion that no matter what we do, or take, that it will not take it all away....we will have to do the best we can with what we got. I have learned the hard way to PACE MYSELF! I have also finally realized that if a situation is stressful, then it's OK to say no or even remove myself from that situation, for instance friends may invite us over for supper and then start arguing....oops, time for us to go!

~~Pam
[email protected]

anita 07-08-2002 10:30 AM

Fibromyalgia
 
I also have Fibromyalgia.. Was diagnosed almost 3 years ago but was told I've had it for about 15 yrs. Mine went into remission for a few years but I also had a traumatic pregnancy and birth with my 9 yr.old daughter.It has been really bad since then. I also have CFS,TMJ,osteoarthritis,and Hepatitus C. Now possibly Lupus. I didn't want to be on a lot of medication from fear of addiction so I decided to try the alternative medicine approach.That helped for a little while but then all of a sudden something happened that made it have a reverse effect on me.I came close to dieing.Now I'm only on pain medicine but I'm afraid it isn't working very well most days.I seem to be able to handle the pain a lot better than the depression though.I've been addicted to nerve pills before so I'm very scared of being put on anything like that again.The only way I can tell you to try to cope with it is to take one day at a time.I get through each day
with a lot of prayer and Faith in God.

dolores 07-08-2002 11:01 AM

I AM ANOTHER !
 
HI EVERYONE ,
I TOO SUFFER FROM THIS DD !
SINCE CHILDHOOD !
IT REALLY CAN EFFECT EVERY AREA OF THE BODY AND MIND !
MY FACIAL PAIN HAS BEEN GETTING WORSE LATELY AND SOMETIMES I CAN'T HOLD MY HEAD UP !
THE ONE THING I HAVE LEARN'T AND DO HAVE IS A GOOD DOCTOR ! PLEASE , IF YOU DON'T HAVE A UNDERSTANDING MD , FIND ONE .
I HATE TAKING MEDS BUT, I AM NOW GIVING IN TO IT . PAIN MANAGEMENT
IS THE KEY I THINK .
I WAS UNABLE TO WALK FOR SEVEN WEEKS DURING MAY AND JUNE , THAT'S WHEN I GAVE IN AND BEGAN TAKING MEDS .
IT IS UPSETTING TO HANDLE THE LOSSES FROM THIS DD, I THINK THATS WHY WE NEED ANTIDEPRESSANTS !
AND THE FACT THAT, SO MANY ARE IGNORANT TO THIS DISEASE, I'M SURE YOU HAVE ALL HEARD STATEMENT'S LIKE " WELL YOU COULD DO IT YESTERDAY , WHY NOT TODAY "
BOY , I CAN ONLY HOPE THEY NEVER HAVE TO FIND OT THE HARD WAY . THINK POSITIVE AND DON'T OVER DO ANYTHING ! WE CAN LIVE WITH THIS DD .....I'M GLAD YOU BROUGHT THIS TO THE M.B. ;)
GOD BLESS YOU ALL .
SOFT HUGS , DOLORES

KellieS 07-08-2002 01:17 PM

Fibromyalgia
 
I have struggled with these symptoms for a few years after having children. I became very ill and went on The Yeast Connection diet. Lost 45 pounds and never felt better! All symptoms were gone within three months. Check out "The Yeast Connection Cookbook", and the remedies outlined for Candidiasis in James Balch, MD's book "Prescription for Nutritional Healling".

Hope this helps!

dolores 07-08-2002 03:08 PM

HI KELLY !
 
THANKS FOR THE INFOMATION !
WOULD YOU HAPPEN TO HAVE A LINK FOR THAT SITE ?^^
DOLORES

Lifestar 07-08-2002 04:16 PM

I, too have Fibromyalgia Syndrome. I was diagnised by a rhumatologist in 1988 after an on-the-job accident left me feeling un-recovered a year later. I now have an Internal Medicine doctor that "believes in it" and a Chiropractor, a Physiatrist, a Psychiatrist, an Ob GYN and a Neurologist who all also believe that it is not a phantom condition.

I think what is important is that you don't blame all your ills on "the Fibromyalgia" alone, and get diagnoses and treatments for the individual things that are bothering you.

Fibromyalgia is a collection of various medical problems, that when put together in a particular way, present as a recognizable syndrome to the informed practitioner. It is not in itself a disease.

None of what we suffer through is in our heads. Although the conditions we suffer through may not be life-threatening, they are surely life-altering when combined and drawn out over the many years we bear with them.

The symptoms we present to our doctors may mimic RA, Lupus, MS, Chrons or Colitis, Lyme disease, or cystitis. But the lab tests keep coming back negative. So many docs send us away telling us "nothing is wrong". But we know that something IS wrong. And eventually we find a knowladgeable practitioner, or we stumble accross a web-site and finally we have a name for what the "wrong" is.

I too have found Celebrex is best for the aches and pains. Wellbutrin works for me ( no sexual side effects :p ), and Topoamx really helps the migraines. Staying away from dairy helps the IBS stay under control along with at least 35 grams of fiber a day in my diet. My chiropractor adjusts my jaw for the TMJ, and does massage for the myofacial pain, and the physiatrist has perscribed aquasize routines for my arobics. Any non-weight bearing exercise is best.

The other thing that contributes to my Fibro-like conditon is a diagnosis of Type 1 Arnold-Chiari Malformation. You all might want to research this on the web for yourselves. Mine was diagnosed with a brain MRI while investigating my headaches. My older daughter has it too. It is a mild case, but causes a lot of the tension-type head and neck aches I get, as well as eye pain and light sensitivity.

All in all, I have missed more days of work and basic living in the past two deccades than I care to, mainly because of the overwhelming fatigue. That is the one thing I can't explain about this condition that sets it apart. The pain can be treated, but the fatigue...I can't seem to escape that even with adequate sleep. That's the one mystery to me and my docs that sets theis one syndrome apart. I'd love to hear form others about the fatigue.

Carie 07-08-2002 04:32 PM

Fibromyalgia
 
Hello! I am another one that has had fibromyalgia for about 14 years (and several other illnesses since then: lupus, osteoarthritis, irritible bowel, rheumatoid arthritis, migraines, degenerative disc disease in my neck, and chronic fatigue). What a mess, huh!!

Seriously, most of what I take are vitamins, minerals and other supplements. I have tried just about all the NSAID meds and cannot take them -- they end up aggravating some other symptom or make me totally sick. So I have stuck with my natural routine and do have 800 mg. of Motrin that I take 2-3 times a day. The doc added Ultram (50 mg.) about 6 months ago for pain as needed and I take about 2 per day. Klonipin helps the jitters and anxiety pretty well, and I break that into halves or fourths.

I also exercise every day, no matter how bad I feel. Even if all I can do are stretches, that's all I do. Strength training and water aerobics are wonderful! We are ordering a Bowflex since it will be much cheaper in the long run than going to a gym, and it is hard for me to drive (the worst part of my degenerative disc disease is in my neck) so being able to strength-train at home sounds heavenly to me!

I too was diagnosed after having a child. I had a normal pregnancy but had to have an emergency caesarean. At the time we were living in So. California (where I am originally from) and I went to a female doctor about a year after I was diagnosed. She told me about the relationship of female surgeries to fibro, but I cannot remember the correlation. But there is definitely something there that seems to trigger fibro and other autoimmune diseases.

If anyone would like, I can outline my nutritional therapy. I have been blessed to have a mother in law that lived with us until recently (she went to be with the Lord last month) and was a registered dietician -- retired -- but still kept up on the latest and best in nutrition. Mine is very simple and not expensive. I also get lots of supplements from Puritan's pride (puritan.com). They have lots of great sales and good products.

I agree with everything that has been written about fibro and other diseases -- pace yourself!! I am so grateful that I had started doing that years ago when I had to work full-time with two little ones. I'd do one or two things around the house each day. That way I would not have the whole house to clean and shopping to do on Saturday, all in one day. I sure can't do that now, and I am grateful that I had that routine going when I became ill.

Please do not think that because I cannot take much medication that I'm against it. Not at all -- if it helps you, use it! That's what it's for. Yes, natural is always better, but sometimes that's just not going to work! So do not be reluctant to try something your doctor suggests.

Speaking of docs, definitely find one that's sympathetic to and in tune with fibro and autoimmune illnesses. I've been blessed with a great one who's open to anything that could possibly help. Thank God!!

Also, if you have not already done so, and have been working, file for Social Security Disability benefits. It took me nearly 5 years but I got my award! I just turned 47, so it's not all about how old you are anymore. (If I had done this in California about 12 years ago when the doc told me to lay off working, I would have had it in 6 months or so because CA has really recognized this disease sooner. Stress plays a big part, and it's stressful out there!)

Bottom line: pace yourself; get into a comfy routine of basic activities, no matter how limited, that you can handle; get family and/or friends to help if possible (or a home health aide if your insurance provides for it); and learn to say "no." This took me so long and I still get frustrated! I was afraid people wouldn't understand since I didn't look sick, but that's not the case anymore. Autoimmune diseases have really come more into the limelight and are getting more study and attention all the time.

I need to cut this off because my hands are killing me! (And to think I used to transcribe medical and legal documents all day...!!!) Don't be afraid to ask me or anyone else that has posted to this thread anything at all that has worked or even not worked for them! We're here to uphold each other and pray for one another -- that's bottom line right there!!

With much prayer and blessing for all of you!!

:daisy:

janet 07-08-2002 04:59 PM

Fibromyalgia
 
Wow! So many replies! Thank-you all for the information and the positive feed back. I really needed to hear these important messages. I am going to try the "Yeast Diet" never tried that before.

SportKat2, I was diagnosed by my family doctor. He pushed points on my body and ouch they were screaming. I had over 18 tender points, some I didn't know they were tender till they were pushed. He sent me to a Rheumatolist and she examined me for 1 1/2 hours and sent me for more bloodwork....she says yep...you have fibromyalgia and possibly another disease that is not fully developed yet, maybe pre-lupus, ms, etc.

People do not understand when you are well one minute and sick the next...it comes on fast like the flu!:(
Some days you can think and other days you can't! Some days I can sleep at night and other nights I can't.
I have been through all the tests just like you ladies...one test does show inflamation. Has anyone had a SED RATE done?

I do cope with this illness and I have times when I almost feel normal. Most days I feel like I have the flu.

Has anyone ever had Polio? Is anyone peri-menopause?
Does cold weather make your symptons worse...like snow and cold weather? My body is so much better when it is hot outside. I tell my hubby I am a hothouse Tomatoe! I have found getting sunshine is a must for me.

Looing forward to reading the message boards and thanks for all the support, it is great to know I am not alone!:heart:


janet:daisy:

Carie 07-08-2002 05:03 PM

Fibromyalgia
 
Janet,

I forgot to mention that I've recently heard about the yeast diet, and it's supposedly producing some miraculous results. If anyone has any info; i.e., website, other people's successes, etc., please post them!

Yes, I have all sorts of weird symptoms and feel like I'm coming down with something all the time. I also had to have a total hysterectomy last December (had lots of complications but am okay now) due to extensive endometriosis. So I kind of escaped the whole menopause thing, and am so grateful I got out of something! It seems like I've had everything one can imagine go wrong with me!!

I need to rest my arms and hands, but thanks for the reminder abou the yeast therapy. I'm looking forward to hearing a lot about that as well as any other things people have tried.

Thank you so much for all the great info!

Prayers!!

dolores 07-08-2002 05:07 PM

HI CARI
 
GEE , YOU SOUNDED SO MUCH LIKE ME ! EXCEPT , I HAD SIGNS OF THIS LONG BEFORE GIVING BIRTH . THAN , WE ARE ALL DIFFERENT ! ;)
IF YOU HAVE IME ,I WOULD BE INTERESTED IN YOUR HEALTH DIET , ETC.
FATIQUE, IS A MAJOR PROBLEM FOR ME . I WAS ALWAYS DOING FIVE OR MORE THINGS AT ONE TIME AS A NURSE I DID A LOT OF RUNNING UP / DOWN HALLS , ;) AND LIFTING . NOW , IT SEEMS I CAN ONLY DO ONE THING AND THAN I MUST SIT TO REST OR WHATEVER .
GOD HAS BLESSED ME AND CONTINUES TO EACH DAY . I AM GRATEFUL FOR WHAT I CAN DO !
HUGS , DOLORES

anita 07-08-2002 05:23 PM

Fibromyalgia
 
Hi Janet,
No,you are definitely not alone.There are a lot of us "fibro sufferers". The cold is very hard on me also.I live in N.C. and I dread every winter worse than the last one. I also love the sunshine. I feel like I just have to get out side a little while every day.I get very depressed if the sun doesn't shine. Last winter I was in bed for about 2 months because I couldn't walk.I could hardly wait for summer to get here. I still have trouble walking very good but at least I can do better now that it's warm here.
I hope I didn't give anyone the impression that I'm against medication or the natural things you can take. I just can't take many things myself but I'm glad these things work for others.I do take 800mg.of Motrin for the pain usually twice a day.Maybe it's time for something stronger but I don't want to feel drugged up. I want to be able to keep going as long as I can.I wish there was a "magic pill" for all of us but we all know there isn't. So we have to learn to accept things and go on living. I do this with God's help everyday.

BackwoodsTess 07-08-2002 05:34 PM

Re: Fibromyalgia
 
Quote:

Originally posted by Carie
Hello! I am another one that has had fibromyalgia for about 14 years (and several other illnesses since then: lupus, osteoarthritis, irritible bowel, rheumatoid arthritis, migraines, degenerative disc disease in my neck, and chronic fatigue). What a mess, huh!!

Seriously, most of what I take are vitamins, minerals and other supplements. I have tried just about all the NSAID meds and cannot take them -- they end up aggravating some other symptom or make me totally sick. So I have stuck with my natural routine and do have 800 mg. of Motrin that I take 2-3 times a day. The doc added Ultram (50 mg.) about 6 months ago for pain as needed and I take about 2 per day. Klonipin helps the jitters and anxiety pretty well, and I break that into halves or fourths.

I also exercise every day, no matter how bad I feel. Even if all I can do are stretches, that's all I do. Strength training and water aerobics are wonderful! We are ordering a Bowflex since it will be much cheaper in the long run than going to a gym, and it is hard for me to drive (the worst part of my degenerative disc disease is in my neck) so being able to strength-train at home sounds heavenly to me!

I too was diagnosed after having a child. I had a normal pregnancy but had to have an emergency caesarean. At the time we were living in So. California (where I am originally from) and I went to a female doctor about a year after I was diagnosed. She told me about the relationship of female surgeries to fibro, but I cannot remember the correlation. But there is definitely something there that seems to trigger fibro and other autoimmune diseases.

If anyone would like, I can outline my nutritional therapy. I have been blessed to have a mother in law that lived with us until recently (she went to be with the Lord last month) and was a registered dietician -- retired -- but still kept up on the latest and best in nutrition. Mine is very simple and not expensive. I also get lots of supplements from Puritan's pride (puritan.com). They have lots of great sales and good products.

I agree with everything that has been written about fibro and other diseases -- pace yourself!! I am so grateful that I had started doing that years ago when I had to work full-time with two little ones. I'd do one or two things around the house each day. That way I would not have the whole house to clean and shopping to do on Saturday, all in one day. I sure can't do that now, and I am grateful that I had that routine going when I became ill.

Please do not think that because I cannot take much medication that I'm against it. Not at all -- if it helps you, use it! That's what it's for. Yes, natural is always better, but sometimes that's just not going to work! So do not be reluctant to try something your doctor suggests.

Speaking of docs, definitely find one that's sympathetic to and in tune with fibro and autoimmune illnesses. I've been blessed with a great one who's open to anything that could possibly help. Thank God!!

Also, if you have not already done so, and have been working, file for Social Security Disability benefits. It took me nearly 5 years but I got my award! I just turned 47, so it's not all about how old you are anymore. (If I had done this in California about 12 years ago when the doc told me to lay off working, I would have had it in 6 months or so because CA has really recognized this disease sooner. Stress plays a big part, and it's stressful out there!)

Bottom line: pace yourself; get into a comfy routine of basic activities, no matter how limited, that you can handle; get family and/or friends to help if possible (or a home health aide if your insurance provides for it); and learn to say "no." This took me so long and I still get frustrated! I was afraid people wouldn't understand since I didn't look sick, but that's not the case anymore. Autoimmune diseases have really come more into the limelight and are getting more study and attention all the time.

I need to cut this off because my hands are killing me! (And to think I used to transcribe medical and legal documents all day...!!!) Don't be afraid to ask me or anyone else that has posted to this thread anything at all that has worked or even not worked for them! We're here to uphold each other and pray for one another -- that's bottom line right there!!

With much prayer and blessing for all of you!!

:daisy:


janet 07-08-2002 05:44 PM

Hello Anita!

Winter is much worse for me too! I am going to ask my Dr. to try a antidepressants this winter, which bad weather starts here in Oct. We don't get enough sunlight here and I really miss that! It is not like I can afford to fly out to Hawaii! LOLROFLMAO

So sorry about you being in bed for 2 months...I struggle with that too but keep pushing myself. I find exercise atleast 30 mins. a day is a must for me. The more the better for me. So days I can only walk very slowly but I still try to keep on moving.

Pain meds never touched the pain I was feeling, all I use is Tylenol extra strength. And I take Elavil at bedtime, it helps you have a deeper sleep. I never feel groggy from it but maybe I am just used to it. It is a low dose.

I try to have a normal routine, wake up and retire the same time every day. Eat healthy. Exercise, even its only a walk. and try not to get stressed out.(that can be hard!)

I am no longer in the work force and this has helped me tremendously, I spend less on Dr visits and meds.

Hope tomorrow is a great day for you!

janet:daisy:

janet 07-08-2002 05:48 PM

Backwoods Tess

I would love :heart: to hear about your Nutrition Therapy.

Post whenever you can!

janet:daisy:

pamtanise 07-08-2002 06:19 PM

Good evening everyone!
 
Just a few quick comments before I *try* to get some sleep. Carrie and KellieS, I would love to hear about the Yeast Diet and also the natural supplements. I'm positive natural is always better, a doctor once told me "every medicine, even Tylenol, has a side effect". My mom is the type that alot of medicines make her sick, or have the opposite effect, or major side effects. Lifestar, you are so fortunate that wellbutrin works for your depression without the ugly side effects,;-) I did try it for a while also, but it didn't help my depression. I (well, I should say *we*) were really hoping for it to work! Anita, I was wondering where you are in NC--I live near Atlantic Beach! I love living here because the winters are pretty mild most of the times. Janet, I know cold bothers you, but is anyone bothered from the HUMIDITY?? I am, the only thing I can think of is that it is equivalent to *rain* in the air, because I can sure tell you when bad weather is on the way (snow in the winter and thunderstorms in the summer).

~~Pam

cactusland 07-08-2002 06:22 PM

Hello,
For all of you suffering from fibromylagia - you might find it interesting to check out Heditary Hemochromatosis (iron overload disease). This a underdiagnoised condition that if untreated is eventually fatal, but is very treatable and managable.
There are a number of informative site, do a serach under Hemochromatisis or check out American Hemochromatosis Society:
I think you will find it intersting.
Ann L.

hotwheelsmama89 07-08-2002 07:33 PM

What is it
 
I was just wondering what it is? I have heard a little about it, but I am wondering if I have it,
I am always tired, sore shoulder all the time, right leg pain, not getting any better. could sleep alot if i had the time,
just was wondering::confused:

Caponata 07-09-2002 01:16 AM

:heart: Hi every one.
It seems I'm being affected but the same symptoms you're mentioning, I'm glad that I could put a name to what's going on with me ,I need now to be tested for it .
You mention the Yeast diet. Please let me know at which site I can find more details. Thank You all:daisy:

tlcsmom 07-09-2002 01:49 AM

Hi everyone,
I have some web sites that may be helpful to those of you suffering from this terrible disease. Upon researching my own situation I often come up on this baffling disease and recommendations. I hope this helps.
www.prevention.com
www.drweil.com (strongly recommend)
www.ivillage.com (you will have to do a search on your condition, I received a email from them the other day talking about this condition)
www.about.com

Lifestar 07-09-2002 05:30 AM

Hey there Janet,

Yes, a Sed Rate, ( or sedimentation rate) is a blood test to rule out inflamitory deseases like rhumatoid arthritis...my doc repeats this one every six months along with the Lyme test and the thyroid tests.

Just because we have been diagnosed with fibromyalgia doesn't mean our health remains static. I'm only 45 and was diagnosed 15 years ago, so my doc is very thorough when looking at me.

I also had a total hysterectomy this year. I feel so much better since this surgery. I was very anemic from bad fibroids, and the back pain I had from years of am enlarged uterus was awful.

I too have degenerative disc disease in my spine ( which I see was mentioned) and have had two back surgeries. A back injury was what sparked my first fibromyalgia.

From what I've been told, it's not necessarally a surgery that sparks Fibromyalgia, but any traumatic insult to your body. The way the Rhumatologist explained it to me , it had something to do with the way our Endorphins are now produced. Our pain thresholds are altered, dopamine receptors changed and sleep paterns shifted in the brain because of differences in our seretonin production...sort of a domino effect.

As far as the cold, it's awful. And I can tell when it's going to rain with more accuracy than the weatherman on ABC news. When I go for physical therapy they know never to put cold packs on me, even though it's what they were taught to do in school...hot packs ONLY! And another thing...my chiropractor swears that fibromyalgia patients should avoid ultrasound treatments...he says it really agrivates the fibro.

One thing that did help me in an emergency, (that I'm considering letting them do to treat me) is something called Trigger Point Injections.

I had a terrible back spasm and I let my Physiatrist do these lidocaine injections into the trigger points in my hip and buttocks after I wrenched my back, and boy do I feel great two weeks later. He has been after me for two years to let him do this to all 18 trigger points for the fibro and I keep saying NO!!..I mean just the thought of letting someone stick a needle into those sore spots was enough to send me running out of the office...But now, after the results I got from the emergency treatment...I'm reconsidering. (Maybe I'd let him do it after a Pina Colada or someting..LOL)

All I know is that I hurt and I'm tired almost all the time. And basically I'm sick of it. I'm sure you all know just how I feel.
Shall I list all my other diagnoses? It's kind of like displaying the medals on your chest... here goes:
Migraines, ACM type 1, Retinal toxoplasmosis, TMJ, Degenerative disc disease, Osteo-arthritis, carpal tunnel syndrome, Sciatica, GERD, IBS, Interstitial cystitis, Ferrous anemia, and a survivor of 5 major surgeries.

Thank you Mr. Fibromyalgia. LOL!

But life goes on. I have two young children, a husband and a house. We all know what that is like.

Since retiring from my job as a NYC Paramedic 12 years ago (thanks to the back injury that started this whole oddesy), I have managed to sustain two difficult pregnancies, raise my daughters, become a Scout leader, be active in the PTA, and run my own part-time business untill just recently. Unfortunately this year I have had to apply for Social Security Disability benefits. It's just becomming too hard. Having been turned down for benefits, I have hired an attourney. So, we shall see.

(I'd love to hear from anyone who has won disability benefits for this lovely condition LOL... perhaps there is another board for this?)

Carie 07-09-2002 08:55 AM

Fibromyalgia
 
Dolores,

So you're a nurse! I was an LPN years ago for a few years, but missed doing office work. So I worked for personal injury attorneys for years until I became disabled.

My vitamin/supplement routine is as follows:

I take Puritans Pride Womens' Exclusive Formula (a multivitamin) twice a day -- one with breakfast and one with dinner.
I take Cal/Mag (from PP also) -- four tablets per day; two with breakfast and two with dinner. That gives me 1200 mg. Calcium and 600 mg. Magnesium so that is in proper balance. (For people who don't know, you have to take half the magnesium with the calcium, otherwise the calcium is not properly absorbed and does not balance out in your body.)
I also take four Pantothenic Acid tablets for the adrenal gland, two with breakfast and two with dinner. These have a very mild sedating effect since I react to stress.
I take 250 mg. of a separate Vitamin C at dinnertime.
I take a mild iron tablet with breakfast since I am slightly anemic.
I take a separate magnesium with dinner, since that is a mild muscle relaxer and helps with restless leg also.
I take two Potassium Gluconate tablets, one with breakfast and one with dinner. These are a natural diuretic since fibro and other conditions tend to make a person retain water.
Last but not least, I take one Vitamin E, 200 mg., with breakfast. I have tried more, but it gives me a headache. 400 mg. is optimum, so if you try to take E, just play with it to see what the highest possible dosage you can take without getting a worse headache than we already have!

I also drink quite a bit of water. My diet is not always the best because there's a lot of things that upset my stomach. Oh, for a natural anti-nausea remedy, try Vitamin B6. It's great! I keep those on hand.

There are other things a person can get to try, but this is what I find works for me so far. I have tried many of the NSAID's and most of them make me too sick, so I am sticking with 800 mg. of Motrin 2-3 times per day and Ultram 1-2 times per day. I also walk and exercise each day, no matter if I can only do a tiny bit. Some is better than none!

Lastly, I keep my weight down. It has not always been easy, but I am small-framed and by keeping myself thin it is much easier on my joints. I can tell just by my clothes if I have gained a few pounds! I measure once a week -- waist, hips and thighs -- and weigh occasionally. The real test is the measuring because muscle weighs more than fat does, so even though I've not lost pounds (I'm about 110 and 5'5") my weight has stayed the same and I wear a smaller size than two years ago. It's worth it! I do notice just that little difference with the pain I experience.

I hope these notes have been helpful. If you or anyone have any more questions, please ask away! I'm glad to help. I also appreciate all the wonderful suggestions and help that have been posted so far.

With wishes for healthier, less painful days,

:daisy:

anita 07-09-2002 10:56 AM

Fibromyalgia
 
Hi Pam, I live in Lexington, N.C. Well really outside of Lex.Way out in the country.Yeah,The humidity is rough on me too..I have trouble breathing when the air quality is in code orange like it is now.

I am really interested in this Yeast Diet everyone is talking about..I was told by someone else that it could help tremendously if you have fibro.

Someone asked about menopause..Well I'm going through that too.If it's not one thing it's something else with us.lol.

The fatigue is a real battle for me.I think that's one thing that makes my depression so bad because I was always on the go doing for everyone else.Now I can't do for my own self most of the time.I get very frustrated by it. God blessed me with a wonderful husband though who is very understanding.He wasn't at first but when he saw just how sick I really was and did a lot of reading on this disease he became very supportive. Now, I just don't know what I would do without him and my daughters.They are all a blessing to me and I'm very thankful for them.I still have hope that one day someone will find something that will help us that suffer from this awful disease.As long as we have hope we can keep pressing on.

ladyinmaille 07-09-2002 01:57 PM

fms boo and hiss i've got it too
 
Goodness. I can't believe so many ladies have this. There is no one around here that I can talk to about this. I've had this all my life, but was just diagnosed about 10 years ago. I try to explain it to everyone that it's like having the flu everyday of your life without the fever. It's like being hit with a mac truck minus the bruises, although I do bruise quite easily. I take prozac for the depression every other night (lowest dosage) and Flexeril (muscle relaxant) every other night. That's all I take except for excedrin (1/2 tab for headaches) or Tylenol or 1 ibuprofen for aches and pains. I have to take the excedrin and ibuprofen with food or I get the shakes. Meds overreact on me. I hate the exhaustion and ppl can't understand when I tell them I'm too tired or I hurt too badly because I look healthy so I just keep pushing myself. I figure one of these days I'll just fall over in a heap and then they will say, geeze, I guess she wasn't feeling so well. My husband gets so impatient with me if we are walking around a ren faire and I have to ask for the wheel chair. He thinks you can just buck up. I can hardly wait for the day when maybe he hurts just a little.:ugh: ROFLMAO He doesn't usually say anything, he just gives me one of his sighs like he's disgusted with me and my pain. I've always been a workaholic (50 to 60 hours a week) and now that I've cut myself back to 32 to 40 hours a week he just doesn't know how to react. When I was diagnosed the dr said, this disease won't kill you but there will be days that you might almost wish it would. How true. I do overdo, expecially when it comes to playing with my grandkids, (()) but the fun and laughter I share with them is worth the pain. I can't take the cold any more than the humidity. I too can tell when it will rain better than the weatherman. The headaches, body aches and fatigue really bother me but on the other hand I am very grateful that in the grab bag of diseases, I have one that I can deal with. After reading all the posts, I am going to start on some vitamins and start taking better care of myself and not feel guilty when I'm tired or hurt too bad to get up and fix supper or do dishes or anything. Thanks Janet for starting this forum so I could vent.:heart:

Carie 07-09-2002 02:58 PM

Fibromyalgia
 
Hey, Indiana, I couldn't agree with you more about how you feel! I am so sorry you also have this horrible disease. I also cannot believe how many people have this. I am 100% convinced that it is linked to stress because I've known too many people that had hard, stressful lives in one area or another, and they end up with it almost invariably, or at least another autoimmune disease like it. The doctors now say it goes in multiples and runs in families. Gee, thanks a lot! Actually, I do feel my mother had it, in retrospect. My parents are deceased but I do remember her hurting quite a bit. She never complained about it but I could tell she ached quite often and her head hurt.

I also suspect that both my daughters have it too. Especially the oldest -- she's 21 and had a child at 17-1/2, so she could very well have it. She's living on her own and her daughter's about 2 hours away with Daddy and stepmom. A better situation for Theresa, but this Granny misses her terribly! She's our only grandchild and she's very close to us. It's hard to get her for visitation because I feel so lousy. Her dad is very understanding and good about visitation, but it's been since February that we've seen her because of my health and other things.

Enough of me!!! I am so sorry that so many of us are contracting these types of illnesses. But as I said before, in looking back at my life and the lives of many other friends and relatives I know, I can see a pattern of intense stress at some point in their lives, and each of them has some sort of autoimmune illness and usually more than just one. So that should be a wake-up call to doctors and other health care professionals right there. I would love to find out if there's a study on this that's been done. Say, if anyone knows of a good website to look for that sort of stuff, please post it -- I'd love to research this issue.

I need to finish supper and my hands and arms are killing me! Oh, well, I am so very grateful that I can still type! I stay in touch with so many people via email and it's been a Godsend to me. It also helps me feel productive because I worked for years as a legal assistant and did lots of transcription. I even had my own home business doing medical and legal transcribing, and I can say I do miss it quite a bit. But I've tried just a little over the years and I simply cannot tolerate a regular job. So I am grateful to God that after nearly 5 years I was awarded disability. I am only 47 and the thought of not ever being able to work again is depressing, but if I don't look at it in that light (i.e., if I don't look at, say, the next 20 years or so) but take things a day or two at a time, I am fine with it. I am fortunate to having loved being at home and making a nice home for my family, and am grateful that I can do some things still around the house. The two kids at home (one college; one entering 10th) are great and my husband is a gift from God! What a sweetheart...!!! Sigh! Anyway, I am remembering all of us in my prayers and am so glad someone posted this thread. We all need lots of love and support, and this is where friendships and support starts.

With many blessings!!

:daisy:

ladyinmaille 07-09-2002 04:45 PM

Carie
 
Yes, it is good to have friends to talk with about this disease because its hard for someone who doesn't have cronic pain to understand what we are going through. Like you, I am sorry for everyone that has this disease, its a disease you wouldn't wish on your worst enemy. But the good news is that the more we discuss what helps and what doesn't help the more ideas we all have on how to cope. It can't be cured, but more help could be made available to help us cope. And it is definately stress related. Mine started after my husband left me for 3 months for another female person. I won't call her what I want to call her so I'll just call her another female person. :ugh: After much counciling we got back together and there are days I still wonder if it was the right decision. You know you roll the dice and you take your chances and then you live with your decisions. My mother had lupus so I get tested every year for that and you have to be very careful that your Dr. doesn't just try to blame your fms for everything that goes wrong with you. Does anyone else get foot and hand cramps? Oh, I hate the foot cramps. Especially when I get them away from home. When driving is especially challenging. My doctor says a jacuzzi would be very benificial to help with the pain and then with another breath says only the rich can get away with claiming them as a health deduction. Well, I'm not rich. The only way I could have one put in would be if we could claim it as a health deduction. Water therapy is also benificial, that and walking are the only 2 forms of exercise my doctor suggests. Well, don't have a pool either.ROFLMAO I tried the YMCA and the pool was heated ok but the dressing rooms were ice cold and I could just feel my muscles tightening up as soon as I walked into the room. All the good the water did, the dressing room undid. Rats. But I think if we all just keep trying to live the best lives we can, do what we can, when we can, and try to keep a good attitude about it, we will be ok. We'd all love to be the way we were but there is no going back so we have to find ways to cope with the way we are now. I think this forum will help us all. :heart:

janet 07-09-2002 07:31 PM

Hello Everyone,
I am amazed at how many people are suffering with FMS. Alot of people do not realize that everyday your body feels like it has the flu. A simple squeeze on the arm or a tight hug can be painful for me.

Someone asked about muscles cramps in feet...I do get them too and in my calves and forearms too! I try to make sure I eat potassium rich foods, potatoes, bananas, etc. I also take Stress tab vitamins.

I have used a "tens" unit before...it does work till your muscles get used to the unit.

I was wondering if there is any area of the country that is okay for FMS people. Arizona?

Take Care everyone and maybe someday they will find a cure!:heart:

janet:daisy:

kimmer36 07-09-2002 07:42 PM

Fibromyalgia
 
Wow, so nice to know I am not alone. I was officially diagnosed about 9 years ago. Two very nasty pregnancies and during my second I was isolated with a "mystery fever" three weeks before I delivered. I suffered major fatigue following the birth of my second son, but being a busy new mom and working full-time as a social worker I did not look after myself. The fever which never seemed to go away took a nasty turn for the worse and I ended up in hospital with a headache and lower back pain like no other (and I have always been a "headache specialist"). Physicians had dismissed me as "a headache", but what they could not explain were the other nasty symptoms like the joint pain, hair loss, bleeding gums, and a doubly enlarged spleen. My blood tests would always come back normal (maybe a little low in vit. B12) until they did a virus scan which showed cytomeglovirus which is a form of mononucleosis. I ended up quitting my job, being couchbound for about a year and a half before I could even consider being employable. I changed careers (computer operator) and have only been able to work part-time. I manage my energy like money. I have so much to spend, so how will I spend it? I have tried all kinds of exercise with the best one being Karate which helped with stretching and concentration. Now I do Yoga for Wimps. However, the post-exercise fatigue takes days for me to recover. Now comes the weight gain. My favorite vitamins are B6, B12, Folic Acid, GNC's Women's Mega Vitamin. I've also had success with the herb Gotu Kola and take Bee Pollen and Royal Jelly when I can afford. The internist who diagnosed me has me taking Elavil (amytriptelne) in a low dose of 30 mgs (helps with the insomnia and poor sleeps) to keep the neck and back muscles from tightening and causing headaches. It has also helped virtualy take away the facial pain as my TMJ joint checks out great and my bite is perfect. The side effects to quite a while to get over, but I'm glad I preservered. I take Zomig for my 5 alarm migraines, and can usually stave off a biggie by taking Advil Liquid Gels (I try not to think of what my stomach is going through). I tried arthritis meds, but could not tolerate them. I also take Flonase for my allergies and to stave off the sinus pain headaches. Seeing a physiotherapist has helped me tremendously in teaching how to give myself a back and neck massage with tennis balls as well as learning exactly which type of headache or pain I am having and making sure I take the right med. For years I was just one big confused ball of agony. I would be chowing down 222's with codene and Sinutabs daily before I sorted out my headaches. I have also learned about referred pain and where to massage. I do try to take the least amount of meds. possible and treat pain points with cold packs, or warm pack, whatever will work. I have shied away from chiropractors as my neck just seems too "brittle". I also had a deep muscle massage that sent me reeling in pain for days thinking I had been put through a meatgrinder and it triggered a 5 day migraine.
I am also sensitive to climate changes. Not much I can do about that except take a little Advil. Where I live it can be possible to experience all four seasons in a day lol!

MOST IMPORTANT! Through counselling I have learned to give up living up to the lofty standards I had set for myself, and what got me over the hump of depression over my "lost former self", was to be good to myself and not beat myself up over brain fog, being unable to commit to or join in everything, just being unavailable at times. Keep a good sense of humor, set up supports and don't exhaust them. Work a little, rest a little. It's hard, but try not to get discouraged you will find what works for you through this journey. Pray for a cure. GOD BLESS! 8-) :-P::

Caponata 07-09-2002 11:09 PM

Hi everyone,
I'm so glad to read you all and see that I'm not the only one having all these pains.. as for husbands, mine thinks I'm simply to lazy when he sees that I cut corners to do things, and it's pathetic but I wish he could get sick too just to see how it's like to get pains and not function normally! Any way he's another story all together. At least my 6 kids help me a lot.
Thanks for all the site you gave and I shall try to find more to take care of myself. I live where good and comprehensive doctors are hard to find.
I was put lately in a hormone therapy, at 52 I thought my bones were becoming brittle and thought that the hormone therapy would help. And it doesn't seem to do so because mostlikely the underlying problem is Fibro.
Thanks again all of you bye:-P::

janet 07-10-2002 04:59 AM

Caponata,

Sorry your hubby doesn't understand your health problems. With 6 children I don't think the word "lazy" would fit you. You must be "amazing". ;-)

What the heck is wrong with cutting corners to get a job done? I would love to hear about them.

I see you live in France, I thought the medical field was more progressive there and were open to try new things? At least that is what I have read or heard.

I wish you a great day, painfree, and keep smiling!:)


janet:daisy:

Jen 07-10-2002 12:39 PM

I too, have fibro. It raised it's ugly head in 1990, after the birth of my two daughters and an extremely stressful time in my life.
I see a pain specialist. I have found that Ultram helps me the most. I know that when I excercise and stretch, I seem to feel better also. The release of all those endorfins. It is just finding the time and will power to do that. I also use a hot tub. Your doctor can prescribe that and it can be taken off your fed. taxes if you meet the deduction. Also, the herb SAM-E helps. Doctors in Europe prescribe this. It is very pricey in the U.S.
Researchers have discovered that Fibro is hereditary. I have two cousins that have been diagnosed with it also.
Watch the weather also. When it is to storm, and the barometer drops, watch out!!! Pain. That is when I use the hot tub the most.
Hang in there. There are lots of us out there!

Jen 07-10-2002 12:46 PM

Several things I forgot. That is part of the fibro symptoms, but not this time. I take Elavil at night to help me sleep. That is essential, because if you can't sleep, the pain seems worse, which aggravates you, which causes more pain, which causes less sleep. SEE! It is a vicious circle. Be sure to ask for help with your sleeping at night.
I have had massage, and if you make your masso-therapist aware that you have fibro, and where the worst pain points are, they should take caution in those areas. If they don't know much, and I can't imagine that in this day and age, educate them as much as possible. They should want to know.
Another therapy my pain specialist wanted me to try is water therapy with physical therapists. If you have insurance, that might help also. I couldn't arrange the time for that.
Plus, Europe seems to be on the cutting edge of this disease. Make sure your doctor is up to date. There are many web sites and publications on fibro now. Check a search engine and check your local library.

Jen 07-10-2002 12:56 PM

Dear Lifestar,
I just read your posting on trigger point injections. That is the first thing the pain specialist did with me. I recommend it. I haven't had them since the first injection in each spot. That has been six years.
You can actually feel the tension, knots, etc., let go. They quiver. But relief.
Be brave and go for it. It is amazing how much better you feel after it is done. It is not a cure all but along with sleep, it is a start, especially if you are not getting any relief or are so fed up with pain you are ready to try anything.

Carie 07-10-2002 02:55 PM

Fibromyalgia
 
Well, I cannot believe what a discussion we all started! Talk about a lot of people being affected by Fibro and other related illnesses.

To ladyinmaille: Yes, a jacuzzi is very beneficial. We had a new home built last year and it came with a jacuzzi tub so I got a real blessing there! However, did you know that Conair (they make hair dryers, curling irons, and other like products) sells a device that you can put in your regular tub to turn it into a jacuzzi type tub? It's under $100 -- in fact I think I saw it advertised for about $50 -- and you put it in the tub just before you get in, turn it on, get in and enjoy! It's a portable device that you just remove when you're done with it. And yes, if you mention it to your doctor and he puts it in your records and/or writes a script for it it is indeed tax deductible.

SOMETHING IMPORTANT: Sorry to change tracks so quickly, but did you all know that even simple aspirin or Motrin that you buy at a store is tax-deductible? It all adds up towards the percentage of medical/dental/eye, etc. expenses you can use as a tax deduction. So save your WalMart receipts, ladies! Even contact lense supplies and simply anything (cough drops even) are in that category. Anything health-related, no matter how far-fetched it may seem.

Back on track: Yes, I did win my disability claim! But it took getting an attorney and almost 5 years to do it. Oklahoma is very backwoods about certain things. However, during the time my claim was pending I kept track of the Circuit Court decisions and Fibro and related illnesses have now been officially recognized as disabling illnesses. So there is now much more hope. But you definitely need an attorney. Paying the percentage is well worth it! Plus they are your attorney for the life of your claim, so if you ever have to be re-certified they're right there with you. (Unless, of course, you change attorneys.) But keep in touch with your attorney every few months via letter, documenting any medication changes, symptom changes, and things of that nature. This way, if and when you have to be re-certified, your attorney has up to date info on how you've done over the past few years or so since the initial award. The key is being persistent! Don't give up! That's what the Disability Board wants you to do. You will get upset and frustrated and angry at what they mail to you and the hoops they make you go through, but don't give up! You will win in the end, and it is worth it, believe me! Yes, I wish I could work at what I did before -- I loved it and miss it -- but I simply cannot. I even tried after I filed my claim in an attempt to "mitigate (minimize) my damages" but was too ill to work more than a very short period of time. (I would not do that again -- it can screw up your case, even though my intentions were good and no fraud was involved. Fortunately the judges realized why I did it -- I had worked for attorneys for nearly 20 years -- and so I was simply trying to do what I thought was right and to show I was not a dishonest person that just wanted to lay around and get paid for it.)

Now to caponata: So you live in France! Please do not think me rude, but are you French or an American living there? My husband and I had the pleasure of spending three years in Europe and thoroughly enjoyed it. We were about an hour from the French border near Saarbrucken, Germany (my husband is in the Air Force). What a beautiful place!

I pray for all of you people here that you will find the right treatment you need and get some relief from your pain and other disabling symptoms. It is a very frustrating thing because many times we don't look ill and I invariably get glared at when I pull into a handicapped spot at the store because I am just 47; look about 30 (just like my mom did for years!); and only limp occasionally due to left knee and hip problems. But we have to move past that and go on from there. People don't understand what's involved with Fibro and related illnesses until they or a loved one experiences them.

Please keep the questions and suggestions coming, and thanks so much for all the wonderful support and information! It helps me immensely and I hope it is that for you.

:cat:

I love cats!!

Blessings and Prayers!!!

:daisy:

ladyinmaille 07-10-2002 03:29 PM

So much information an inspiration
 
I'm going to have to print this thread out and re-read it and save it for further use. This is wonderful advice we are getting. I remember someone saying something about hugs hurting and they do. Isn't that just awful. Not being able to give big hugs. But little soft ones are nice, too.:heart:

JJT 07-11-2002 08:08 AM

fibromyalgia
 
I have had fibromyalgia for a few years now. My mom also has it. I have been taking Vioxx for a few years and it has been working. But, now i've been having more pain. Especially when the weather changes like right before it rains. My doctor has now started me on Neurontin. I take it three times a day. It is not a drug specifically for fibromyalgia but it has been used to manage pain. It really works. I still have pain occasionally in my legs, but nothing like I was having before. I've also told my mom about it and she is taking it. Maybe you could ask your doctor about it? I've noticed that getting the proper amount of sleep really helps also. Good luck.


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