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  #11 (permalink)  
Old 07-08-2002, 04:16 PM
Lifestar's Avatar
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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.
  #12 (permalink)  
Old 07-08-2002, 04:32 PM
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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!!

__________________
Carie A., Oklahoma City
  #13 (permalink)  
Old 07-08-2002, 04:59 PM
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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!


janet
  #14 (permalink)  
Old 07-08-2002, 05:03 PM
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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!!
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Carie A., Oklahoma City
  #15 (permalink)  
Old 07-08-2002, 05:07 PM
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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
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  #16 (permalink)  
Old 07-08-2002, 05:23 PM
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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.
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  #17 (permalink)  
Old 07-08-2002, 05:34 PM
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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!!

  #18 (permalink)  
Old 07-08-2002, 05:44 PM
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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! LOL

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
  #19 (permalink)  
Old 07-08-2002, 05:48 PM
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Backwoods Tess

I would love to hear about your Nutrition Therapy.

Post whenever you can!

janet
  #20 (permalink)  
Old 07-08-2002, 06:19 PM
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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
 
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