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  #21 (permalink)  
Old 07-08-2002, 06:22 PM
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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.
  #22 (permalink)  
Old 07-08-2002, 07:33 PM
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Question 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:
  #23 (permalink)  
Old 07-09-2002, 01:16 AM
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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
  #24 (permalink)  
Old 07-09-2002, 01:49 AM
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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. (strongly recommend) (you will have to do a search on your condition, I received a email from them the other day talking about this condition)
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Old 07-09-2002, 05:30 AM
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Hey there Janet,

Yes, a Sed Rate, ( or sedimentation rate) is a blood test to rule out inflamitory deseases like rhumatoid 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 packs ONLY! And another 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?)
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Old 07-09-2002, 08:55 AM
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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,

Carie A., Oklahoma City
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Old 07-09-2002, 10:56 AM
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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

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.
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Old 07-09-2002, 01:57 PM
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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. 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.
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Old 07-09-2002, 02:58 PM
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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!!

Carie A., Oklahoma City
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Old 07-09-2002, 04:45 PM
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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. 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. 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.
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