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Old 05-22-2005, 03:32 PM   #1
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Question trying to find the connection between all of us.

There are so many people being diagnosed with fms. Im trying to see if there is a connection between all of us or most of us. There is something that triggered the onset of this crap and I know people have posted about there symptoms a dozen times here but thats not what I want to find out so dont worry im not asking about the symptoms. If you can think back to before you showed any sign or symptom of fms. What were you doing at the time, were you eating right and not starving yourself, if you were pregnant, did you eat like you were suppose to, after you had the baby did you starve yourself or eat a lot of junk. What about any viral infections such as mono, when you get the ebv virus (mono) it drains your body of nutrients while it is fighting this illness. How many people have had mono and are now diagnosed with fms. There are to many young people on these boards who have been diagnosed with fms. I know it gets old posting about the same stuff but if you dont mind please post what happened over the years right before you started showing any signs or symptoms. Stress also uses the bodies energy up. I have had combination of everything from stress, viral illness, not eating right while breast feeding my baby for 10 months, not eating at all sometimes. I have my good days and my bad days, more bad thatn good it seems like. Some days I feel like I have energy and I do stuff around the house like cleaning, and I might feel like this for 3 days and wake up the next morning and feel lifeless. Like I have not slept in days, my body is completely drained. I have had it last for up to 9 days of feeling like I cant hardly do simple things like take a shower, but of course I always make sure I take a bath and give the children a bath regardless of how weak I feel. Then its like my body has energy all of a sudden, like I said it can last for 3 or 4 days but then its back to the same rutine. Some docs say fm is from depresion. I dont believe that. Can this illness be stoped or slowed down by loading up on vitamins and minerals, which our bodies are depleted of when we are sick or pregnant. It seems like it hits people when there bodies are weakened by something. Yes i know that fm can follow after a viral illness. I just cant see a 17 year old having fm, that is to young. I think a lot of people are being diagnosed with fms and they dont really have it, it could be something simple such as needing vitamins to help the body get back its energy and the pain to go away. I have noticed when I have energy I dont have pains but when i have my weak days I have all kinds of aches and pains. Just a thought

Last edited by JJCHEEK; 05-22-2005 at 04:26 PM.

 
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Old 05-22-2005, 05:21 PM   #2
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Re: trying to find the connection between all of us.

well, not too much really happened...never had mono... I eat pretty good...was pretty active...hardly ever sick...A LOT of tests ruled out anything else it could be...my doc checked for EVERYTHING... have the pressure points, most of them...


my mom does have it...meaning the fibro...hers popped up right after childbirth...

I know I'm only 17, but I DO have fibromyalgia. I hate it, but I am determined not to let it get me down, and I am also determined to help find a cure for it!
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Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
Old 05-22-2005, 08:00 PM   #3
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Re: trying to find the connection between all of us.

Are you sure you have never had mono? When I got mono I asked my daughters doctor what would happen if she was to get mono. She said it would not effect her like it does teenagers and adults. Have you ever been tested for ebv, if not I would just to see. If you got it when you were a baby or toddler your mom probably thought you had a cold. The doctor told me when really small children get mono there symptoms consist of slight fever, slight malaise, cold symptoms. She said you really cant tell until they get a little bit older and then they can do an anti body test to see. I cant see you having fms at age 17 just for no reason, hun you are way to young. I will pray for you and everyone on these boards, hoping one day that they will find out a cure for this cripling disease.

Last edited by JJCHEEK; 05-23-2005 at 09:17 AM.

 
Old 05-22-2005, 10:45 PM   #4
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Re: trying to find the connection between all of us.

if i think back about any signs of fms, i would say that when i was on my twenties (I'm now 47 and was diagnosed at 46), I would get sore all over ONLY when I got very tired. A good night sleep was enough to make the pains go. I didn't know of anybody else going through that when I was young. Otherwise, I had growth pains when I was a child and I remember it used to make me suffer a lot, mainly my legs. I would take an aspirin, cry my eyes out, wrap my legs in a warm blanket, and be fine after a while. So it was basically growth pains and fatigue followed by pains but both would go away quickly. Then I had a car accident two years ago and fms started gradually after that. I was not injured by the accident, except for few burns from the airbag, but I was very shocked by it.

 
Old 05-23-2005, 03:16 AM   #5
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Re: trying to find the connection between all of us.

I was doing ok before I got sick. Yes, I was overweight, but I was also excersing and had lost a few pounds and I was trying to eat sensibly. No, I did not have the best diet or self care regime- what 20 year old college student does? I wore sunscreen everyday. I had been depressed for about a year- nothing major- following a med change (I dried to get off the meds) but I was working on that- I had tried therapy and was waiting to see the psychiatrist. Great relationship, getting along with people. Not any unusuall stress.

Then I got sick suddenly with some sort of strange flue or something where I had a high fever and was in shock for days and so forth. And after that I wasn't the same. This was in early decemember, and a month later the depresssion was better due to med changes. I remember going to to the doctor and saying that I was not feeling well, that I always felt run down and I kept getting cold after cold and was tired. Of course he said it was stress and to take more vitamin C and be positive. Then the next month I went back because of the abdominal pan and the stomach/asthma problems and the sleepiness and so forth. He said IBS, will probably pass, gave me a useless med and told me it was probably stress. Refused to refere me to a GI. Finally, when I was in severe pain and not able to keep food down or in I had lab tests run and so forth and was messed with before they decided it might not be stress after all. Finally my boyfriend suggested the severe pain might be gynecological, and they found an abomdinal mass on the ultrasound. By this time my hair was falling out and I did not want to eat and I was afraid to be alone and could not take care of myself. I spent a lot of time on my boyfriend's couch or in his bed- in and out of it. He and my roomates had to bring me food and tell me to try and eat. My mother came down and helped me to dress and do things I could no longer do like vaccuume. After multiple invasice proceducres and getting the run around my family took me up to Mayo where I was told that I likely had had an ovarian cyst that had ruptered. The severe pain was now being caused by abdominal cuteanous nerve entrapment in the abdominal wall where they cyst had ruptered. I was treated and some things were adressed and they told me a virus had probably taken the oportunity to stick around and said try and get my strength back. I was incredibley weak. My strenght did not come back. Pain clinics and exams and doctors until finally I was suggesting that maybe it was all stress- to whcih I was quickly assured it was not in my head.

About one year later I went to see the most highly reputed CFS doctor in the region- that was the diagnosis everyone was skiritng around. I was poked and prodded and trigger points were prounced and I was declaired to have FMS. And the symptoms fit.

And I have never been the same since that one day when I got sick. I don't think there was anything in my lifestyle- I am only 22 now and just completed my first semester back at school sucessfully since getting sick.

Reading about FMS the symptoms fit- all these odd little things made more sense. To me it is still this puzzle- something neurological it has to be to connect all the dots. I want to analyze it and make it make sense. I want my life back.

I think the only real connection is that our bodies were weak in some way- from life circumstances or from a virus or something and then something hits us- a one two punch and blam, down we go. Its not our fault. Might be easier if it were, if only it was something that therapy and less stress and positive thinking could resolve.

But I am doing better now, finally. Of course I also think my urine is radioactive with all my meds. And there is much more yet to do. My new hobby. At first, when I was in so much pain I thought how unfair this illness was. It would make us suffer so much and not kill us.

 
Old 05-23-2005, 05:51 AM   #6
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Re: trying to find the connection between all of us.

I don't have a defining precursor. Several summers ago, I was sitting in the sun porch and I crossed my legs...and noticed my hip hurt..or maybe outer thigh..it was hard to tell. I noticed it again every day..for days...I would run my hand down my thigh..and feel where the pain was..trying to figure out what was wrong. It sort of freaked me out...because I was 50...and my mom had just had her hip re-done, all I could think was I didn't want arthritus in my hip!!! From that first pain on....little by little..I began to notice more pain and stiffness. Then my sleep started really messing up. After about 4 months or so, my husband finally convinced me that I needed to find out what was going on with my body. I went to my GP...he ran the obligatory tests for lyme, and thyroid etc. and everything came back A-ok. He told me at that first office visit..after doing a thorough tender point exam....and a basic physical exam. That he was expecting things to all come out negative...and that I more than likely had Fibromyalgia. And, he was correct ..and that was verified by a rheumatologist about a year later. So, I figure they could both be equally wrong, but at this point I am a classic fibro case. Pain and fatigue being my main symptoms. So, what brought this on? I am not sure...IF it is an virus...I know months prior to the pain I had the worst flu I had ever had...but so did several other family members. So, I don't know what exactly started it...but I sure wish I could figure out what would END IT!

 
Old 05-23-2005, 06:10 AM   #7
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Re: trying to find the connection between all of us.

It seems to me that our bodies underwent some kind of physical trauma before we were all diagnosed with FM. I had 5 children in 7 years - the last ones being a set of twins. I feel the trauma to my body of pregnancy and childbirth probably contributed to the dianosis of FM. I remember during my last pregnancy I would slouch down on the couch and literally not be able to move. I was so weak and felt so lifeless. I was bone tired. At the time I thought it was from being tired from the pregnancy. Now that I think back, I think my body was overstressed. I also had mono when I was in college. So, maybe that started my journey to FM. Who knows - but I wish there were research to find out more answers to these questions.

God bless, Jen

 
Old 05-23-2005, 10:03 AM   #8
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Re: trying to find the connection between all of us.

I also have no idea what started mine. I was in great shape as a child, on the thin side, well fed, healthy until I was a sophomore in high school. I had a terrible bout with mono. I missed several months of school. When I was 28 years old, I was involved in a pedestrian/auto accident (I was the pedestrian). Miraculously, I escaped without a broken bone, however I don't think there was a part of my body that wasn't sprained, strained, or bruised. I was on crutches for quite a while. I even had a visiting nurse (doctor's order) come to my house every day for six weeks as I was alone. Two days after I returned home from the hospital I felt like I was having a heart attack. My nurse called the ambulance fearing I may have throne a blood clot(s) from my injuries. I checked out fine and was sent home. This situation repeated itself a couple of days later. Back to the hospital in an ambulance. The docs finally concluded I was having panic attacks. Those attacks continued to the point where I had to see a shrink. The panic/anxiety attacks eventually led to depression. I have been treated for depression ever since. One interesting note I want to pass along ... even then, over 20 years ago, my shrink explained what triggers anxiety, depression, etc. He even drew a picture for me. He explained that these "mental" illnesses are actually physiological and are caused by either a virus, injury, or trauma (stress) we've suffered and somehow causes our bodies to "malperform" (that word is mine, now his. Doc used much more professional terminology!) I just think that is quite interesting when you compare his comments about these "mental illnesses" to what some researchers are now saying about FM. Anyway, sometime while I was in my 30's, I was diagnosed with IBS. Still have it. After I turned 45 or so, started having aches and pains which I figured was due to aging. Then, I was traveling on business to NYC and was just going to bed for the night. The second I lied down, I felt such a terrible pain in my right hip. It took my breath away! Had NO idea where that came from. To try and make this already long story short, I began having episodes with fatigue, unlike any fatigue I had ever know, and crippling pain to the point where I needed help to get out of bed, in and out of the car, the bathtub, etc. I had to go up and down stairs sideways holding on to the rail. I began having all kinds of additional symptoms and was finally diagnosed with FM/CFS about a year and a half ago ... and it isn't getting any better. Oh, I forgot to tell you, I am now 50 years old and a single mom with two teenagers at home. I pray they never get this.

My love and prayers to all of you ..

Robin

 
Old 05-23-2005, 10:18 AM   #9
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Re: trying to find the connection between all of us.

A lot of us got this after beeing sick or after childbirth. This is when the body is the weakest. When your pregnant, the baby sucks all your nutrients out of your body and alot of us dont have time to rest after having a baby, we have to get up with the baby through the night, you lose sleep and our bodies dont get to recover from having a baby. When your sick your body uses all your nutrients to fight off infections. From what I see it seems like our bodies are still fighting to get back to a healthy state, thats why we have our good days and our bad days.When you have a virus like Ebv (mono) that stays with you for the rest of your life its hard on your body to keep the virus at bay. Its like some people who have had mono get to feeling better and later on down the road when they get pregnant mono decides to reactivate itself when your body is weak. Most of the people I have talked to who have had mono and then later on down the road have a baby, they are very weak and tired and have body aches and pains from then on. I dont know if there is a connection but it seems like it. My doctor told me that mono can activate itself later on down the road when the bodies imune system is low casing body aches and pains. I agree with wellnesstrainer about detoxing the body because if you look at the stuff they put in food today, its really bad for you. My doctor told me that the preservitaves they put in meat now causes people to have migraine headaches, she said it has been proven. I know its easier said then done but we should try to change our diets. Eat more fresh vegetables and fruit and cut out sweets, butter, and stay away from msg. Its very hard to do because I crave sweets and potato chips and junk like that. When I get the money I am going to try a good multi vitamin and mineral supplement from a health food store instead of the grocery store because I have always been told that vitamins are better if they are gotten from a health food store. They are more expensive but better. I am going to try and change a few things in my diet just to see if it helps but I have so many toxins in my body right now that it might take a little longer for me to get results. But I will let everyone know how it goes when ever I get the money to be able to get the vitamins I want.Im still reading everyones responces so please keep posting.

Last edited by JJCHEEK; 05-23-2005 at 10:19 AM.

 
Old 05-23-2005, 10:36 AM   #10
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Re: trying to find the connection between all of us.

For so long, I searched for an answer, and I finally got it. I sincerely believe I have this JJ. I was tested for everything. They took so much freakin blood from me over the period of a few months and ran so many different tests. All research I have read said that FM is most common in women of childbearing age (about 25-50 or so), but it also always says that children and older people can get it too. I have all the symptoms, almost to a T. I am a child that has it, I know I am. You know how you just KNOW things? Well, this I do know. I REALLY know it. I've never had a passion for anything like I have for this either. I KNOW I have it and I'm going to help find the cure. I'm so determined. God has led me to this diagnosis because it is the truth and I'm ready to fight.
__________________
Diagnosed with:

Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

Last edited by GodsGirl4ever06; 05-23-2005 at 10:40 AM.

 
Old 05-23-2005, 10:45 AM   #11
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Re: trying to find the connection between all of us.

Hey JJ!

I started showing TRUE signs of FM in the fall of 2001. The reason I say true is that I believe I've had the tender points for a long time, just assumed they were due in part to my choice of exercise.

In my twenties and into to my early thirties I was a long distance runner and a weight lifter. I did gain a lot of weight before I delivered my baby, baby? He's 25 now! I had natural birth, no drugs at all.

When I was little I had Mumps, Measles, and the Hong Kong Flu. You all are mostly too young to remember that epidemic, so look it up. I never had the Chicken Pox, my son did though. I was physically abused and neglected as a young child into my early teens. There has been significant research that trauma in the form of physical and mental abuse and neglect can be the cause of FM. We did a very long thread on this subject and it brought forth some very interesting topics.

In early 2001 I fell and broke my tailbone. OUCH! I saw the Xray of that baby, you could definately see the big ol' crack!

I have had numerous "viruses" that had to run their course. I recently tested positive for a past infection of Epstein Barr Virus stating that the anti-bodies will remain positive in my system for many many years. The only thing that I can think that would cause the EBV to begin with was one of my childhood diseases, as far as it "reactivating" and becoming chronic, may be due to the fact that I had E-Coli last year. Ever since the E-Coli, it seems like my FM symptoms have magnified, and I have recently been dx'd with CFIDS. I also have recurring cold sores every month and lately I've been able to keep them "at bay" recently with OTC cold sore meds.

I also was dx'd with multiple herniated and torn lower lumbar discs Oct 2002, a few months after I was dx'd with FM in March 2002. Hmmmm.... I can't recall what would have caused the injury to my back, but I waited tables for nearly 15 years, and I think I finally got "squished"! Now I am dealing with possible nerve impingement that may not be operable, caused by the bulging discs in my back. This has caused me to lose function of my right leg and foot.

So, there you have it. As far as what caused my FM. PICK ONE! I believe it was a combination of abuse, and my broken tailbone, as well as the viruses I had. I remember having a really bad virus the summer of 2000, this was the same year my son got married, that's how I remember it. It was awful, I never went to the doc, I figured there was nothing he could do, plus, I was alone at the time and could NOT drive myself to the doc.

Hope this helps you some JJ.

tk
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Last edited by tkgoodspirit; 05-23-2005 at 10:52 AM. Reason: changed the word dics to discs: oops!

 
Old 05-23-2005, 10:57 AM   #12
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Re: trying to find the connection between all of us.

Quote:
Originally Posted by GodsGirl4ever06
For so long, I searched for an answer, and I finally got it. I sincerely believe I have this JJ. I was tested for everything. They took so much freakin blood from me over the period of a few months and ran so many different tests. All research I have read said that FM is most common in women of childbearing age (about 25-50 or so), but it also always says that children and older people can get it too. I have all the symptoms, almost to a T. I am a child that has it, I know I am. You know how you just KNOW things? Well, this I do know. I REALLY know it. I've never had a passion for anything like I have for this either. I KNOW I have it and I'm going to help find the cure. I'm so determined. God has led me to this diagnosis because it is the truth and I'm ready to fight.

Jule? Do you remember the research we all did regarding "Juvenile Fibromyalgia Syndrome"? Was it you who asked how many teens had FM? Anyway, we DID an extensive thread all about Juvenile Fibromyalgia and I would be happy to get that information for you again to show you and others how much more common FM is in our youth than suspected.

I know you have FM, you most likely got it from your mother after you went through (sorry for this) Puberty! After you got your period, do you remember your FM symptoms increasing?

Love ya dear. Remember, I'm voting for you for President!
tk
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Old 05-23-2005, 11:52 AM   #13
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Re: trying to find the connection between all of us.

Hi, I was a very healthy child, young adult, was brought up to eat naturally and exercised everyday..I was a hiker, skier, etc.

I woke up one morning in 1994 and had terrible pain in both knees. Like hot pokers going through my knees.I went to the doc and was told I was pregnant, however, I lost the baby. .many surgeries later still pain..
'
To make a long story short in 2000 I was diagnosed with Fibro, the doctor who diagnosed me did tests that showed I had no human growth hormone, now, they believe this happens when you are a chronic insomniac and I cannot remember the other reason, FOG. Chronic insomnia can affect your pituatary gland and make it not work properly..I started taking shots of human growth hormone and my energy level went up as well as my levels on tests, however, never into the normal range. To this day I take them..unfortunately the Ins. doesn't pay for it but this keeps me going, they are VERY expensive.

I have been a poor sleeper since I was a little girl, I would wake my mom up 2-3 times a night, went to the doc and nothing wrong....In my late twenties went a whole week without sleeping, I took sleep medication but nothing worked until a doc saw how dangerous this was and gave me something heavy duty.

In hindsight, the knees were a trigger point and I went throught a lot of pain with surgeries and tests and you name it, to be told 6 years later I had fibro. I am also now dealing with herniated discs in my neck, something I woke up with.

I think everyone is different and unfortunately this makes for a hard diagnosis and difficulty in dealing with symptoms. The medical community is so divided about this disease, and I do mean it is a disease, that it makes it harder on us to deal with our symtoms..yeah, I think we get depressed at times but wouldn't you be if you were in chronic pain..I don't believe that fibro comes from depression, I think it can be the other way around. Many factors contribute to fibro as I am sure everyone knows.

Attitude is what keeps me going and now when I wake up I tell myself am going to have a great day and not have a flare up. I beleive we all share this feeling and this makes us stronger..I sometimes look at it from the viewpoint that I am learning to deal with pain and suffering, sometimes this can make you a better person since you do not sweat the small stuff.

I hope this makes sense, I tend to ramble and at times my writing is disjointed. Hope this helps.

Hope everyone has a good day.

Janet

 
Old 05-23-2005, 12:17 PM   #14
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Re: trying to find the connection between all of us.

Quote:
Originally Posted by GodsGirl4ever06
For so long, I searched for an answer, and I finally got it. I sincerely believe I have this JJ. I was tested for everything. They took so much freakin blood from me over the period of a few months and ran so many different tests. All research I have read said that FM is most common in women of childbearing age (about 25-50 or so), but it also always says that children and older people can get it too. I have all the symptoms, almost to a T. I am a child that has it, I know I am. You know how you just KNOW things? Well, this I do know. I REALLY know it. I've never had a passion for anything like I have for this either. I KNOW I have it and I'm going to help find the cure. I'm so determined. God has led me to this diagnosis because it is the truth and I'm ready to fight.
I know you you have it also and I hate it for you because you are so young, there is no reason you should have it. But i am trying to also see how many of us had something in common before this crap hit us. Please dont think I was denying that you have it. I never meant it to sound like that. Keep that positive attitude about finding a cure.

 
Old 05-23-2005, 12:25 PM   #15
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Re: trying to find the connection between all of us.

Quote:
Originally Posted by allica77
Hello,
My mother has fms, and it started around her mid 30's almost fifteen years ago. She was at a point that it hurt her if anyone even touched her. Twelve years ago she started to take a nutritional supplement that has changed her life. She has very few problems anymore, and the doctors say she is actually doing better than when she first came in fifteen years ago.
See if vitamins help some, dont you think our bodies are trying to tell us they need somethiing more than just eating, it needs that extra boost

Last edited by JJCHEEK; 05-23-2005 at 12:26 PM.

 
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