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Old 06-08-2008, 10:07 PM   #1
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Question Newbie Here... I have not been diagnosed yet but I have some concerns.

I have been suffering with what I think may be Fibromyalgia for a little over a year now.

It all started out with muscle fatigue when walking, sometimes just across the room, or lifting my arms above my head for more than a couple of seconds. And jaw pain when first starting to chew food. Then I starting having bowel problems and weight gain.

I went through a bout of depression because things became stressful around here since we are self-employed and my health was going on a downhill slide. I was on Paxil for a few months but I quit it because I realized that in order to not be depressed you have to learn to take one day at a time and not let things get to you so I quit taking them and I have done good without it for over 6 months now.

For a long time, that was the only symptoms I had. I even quit drinking Diet Pepsi after drinking it since around the early 90's, I thought I might have had aspartame poisoning. Quiting the Diet Pepsi didn't help though.

Anyway, I felt about the same for a while until my husband decided he needed my help out in the shop rather than my normal office duties. He had in his mind that if I got up and did more then I would feel better. Oh how very wrong he was...although I wish it could have been true!

Well, I have been working out there for about 3 months now and it has taken its toll on me... the work is not easy... things like grinding steel, drilling, sanding, sandblasting and various other duties that I consider light compared to those. Don't get me wrong... I am a strong person. I have muscles that some men might wish they had.

As soon as I started working out there, I started getting shooting or snapping pains everywhere but not the same place each time, and I get pains that feel like they are deep down in my bones mostly in the long bones of my arms and legs, I have joint pain mostly in my fingers, I have back pain, hip pain, neck pain, shoulder pain. The pains are not constant and move from right to left or top to bottom. After I sit for a few minutes I get so stiff I can barely walk across the floor... even the bottoms of my feet feel stiff. Once I walk it off a bit, then I am okay. So this makes it hard to even take a break.

Anyway, so I went to my doctor. I don't have health insurance but I feel like I need to find out what the heck is going on. I had a nurse practioner suggest to me that it might be Fibro so I suggested that to my doctor when I went to see her. Well, she decided not to do any test of any kind but rather refer me to a Neurologist... which I am still waiting on to call me to make an appointment.

Since, in the back of my mind, I think it is Fibro I started reading up on it and found this board. What I see mentioned is that Fibro patients are treated by a Rheumatologist not a Neurologist. This has me concerned because like I said I don't have health insurance and we are tight on money so I don't want to waste my money on unneeded things. Should I be seeing a Rheumatologist instead. I have to be referred a normal doctor in order to get in to see a specialist. Should I get a second opinion from another normal doctor first?

And I guess before those questions can be answered. Does it sound like I may have Fibro? Or something else?

Thanks for listening!

 
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Old 06-08-2008, 11:20 PM   #2
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

Hi Moon.. welcome to the Fibro board. Hope you'll stay around here for a while, there's a lot to learn here, and many kind words and a ton of support.

I was a work a holic for years, then fibro took over. It started with fatigue, then different areas would cause enough problems it became really hard to work. I had to quit jobs, take a leave for a month or 3, then get another job. Each one lasted about 4 months before I was once again having problems with having enough energy, and some area of my body wasn't cooperating. My last job was the easiest job of all, but long hours and brutally difficult to do when my feet were the body part that went out on me... burning, aching, cramping. I couldn't walk between my posts without slow, obviously pain filled steps. I was working in a prison at the time, and if you can't move quickly, you become a target. I quit when I realized I was getting scared. I have not been able to stand for longer than 15 or 20 min without my feet screaming at me to get off them, and I generally cannot walk on them for more than 45 minutes or so to shop for groceries. If I don't have a shopping cart... I don't shop at all...need the support. ( I don't really understand it.. walking, the massaging affect, seems to be so much easier than standing in one position)

Your symptoms sound very much like what I deal with on a daily basis, and there are many more here who will agree that it sounds like something they are going through also. I can't diagnose you, but I can tell you that what you have heard is correct. The most qualified doctor to diagnose Fibromyalgia is a Rheumy... the latest news is that Fibro has been lumped into the rheumetoid catagory, along with arthritis and other similar disorders. It is also called an autoimune disorder, and a neurological disorder, and a hormone disorder. It has many names, but all are just as depressing. lol

A Neurologist can diagnose this, but the better choice would still be the Rheumatologist if you can manage it. Hope this is helpful, and I wish you all the luck in the world in managing without the insurance. Maybe someone else can give you some good leads on that aspect.
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Old 06-09-2008, 12:19 AM   #3
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

I am the same way at the grocery store. If it weren't for the shopping carts I would never make it to get what I need. I even have a real hard time walking back and forth from our house to the shop... heck sometimes just walking to the kitchen is a chore. I also can't stand in one spot or be in one position too long because not only do my feet hurt, my back gets to hurting so bad I can't stand it too.

I forgot to mention earlier that my memory isn't what it used to be either. Sometimes I just zone out and can't for the life of me remember what I need to be doing. I guess that could be FibroFog.

I think the reason that my doctor referred me to a Neurologist is because she said that most Fibro patients do not have the muscle fatigue from walking or raising the arms up to reach for something. She said they have mostly pain.... not fatigue. She said some may but most don't. Is she right?

If the Neurologist can diagnose me then I will stick with that route so that I don't incur the expense of a different doctor.

I should be in bed now but I was hurting too much to sleep and had to get back up. My doctor did give me some Vicodin and so I had to take one in hopes it will help me sleep in a few.

Thanks for replying to my post.

 
Old 06-09-2008, 07:00 AM   #4
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Talking Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

Hi Moon,
I believe you have entered the Fibro Zone Those symptoms are classic. While the neuro may be able to make the call, my personal opinion is the rhume would be better. Just make sure a complete blood panel is done, covering all the bases. They don't call it fibro because of what they find but because of what they don't find. It doesn't help the pain but it does give a piece of mind to know that you aren't going to die from something that can be found. This mess is awful but I haven't heard of it killing anyone yet.(Although there are days when I could swear I'll be the first) It helps mentally to know that.

Hang around here. It helps to know that other people get it and don't think you are lazy, wimpy, or just plain nuts.

 
Old 06-09-2008, 07:43 AM   #5
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

"Hang around here. It helps to know that other people get it and don't think you are lazy, wimpy, or just plain nuts."

That is what my husband and family thought when it first started. I think I finally convinced my husband that he is wrong, although there are times that I just don't know what he is thinking. I am not so sure about my daughters, they don't live here so they don't see me in agony all the time. I have tried talking to them but I get that far away look when I do try to talk about it so I know they don't want to hear it. They are 26 and 16.

This looks like a great board. I am going to add it to my favorites. Thanks!

 
Old 06-09-2008, 07:58 PM   #6
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

Welcome Moon!

You will find many great things here--sources of information, compassion, empathy and friendship.

While it is true that most fibro patients do not experience muscle fatigue as you described but rather unexplained pain and overall fatigue, that does not mean you don't have it. It manifests itself in so many different ways in all of us, and unfortunately, there is no one definitive test to diagnose it.

I hope you find a doctor who can help you. I agree a rheumy is better than a neurologist, but a good internist may be even better....depending on the rheumy. Try to keep a log of how you're feeling each day, along with what you eat, how much you sleep, etc. It may help find things that trigger your pain (other than the obvious physical exertion) and help the doctor treat you more effectively.

Good luck, and let us know how you're doing.

Again, welcome!

Blessings,
Tex

 
Old 06-14-2008, 07:15 AM   #7
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

hi there newbie! i am a newbie myself, all i can say is dont give up. Keep geting blood work done. like some of the others said, you have all the simptoms, that i have. i am glad someone said somthing about memory, i was just telling my daughter last night. i think i am going nuts! cant remember from one second to next. also wish i could have one morning i did not wake up feeling like someone beat me up all night. it stinks. i also used to do so much more, i worked 32 hrs a wk, i quit last sept. i did just get ss. i am so grateful. but still feel useless alot. glad my sister introduced me to this sight, i think it will help to here other stories. good luck in getting diognosed. dont give up deb jeepi

 
Old 06-14-2008, 08:11 AM   #8
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

I too agree with you that if you don't have medical insurance coverage you have to be extra cautious on the visits you have with drs. you don't want to be referred to a dr that doesn't deal with your issues.
I myself was JUST referred to a neruologist for severe memory problems, spelling words wrong, not remembering words, and switching letters, etc. I can't even rememember which is the hot water tap vs. the cold and it's only getting worst since 2000, and the first thing this dr said to me was, I don't deal with memory loss and neurologists deal only with strokes and brain tumors. these were her very words. I'm not kidding.
I asked myself, then why the heck did my dr refer me to her?
it was such a waste of time and money.
she checked my reflex with one of those metal bars and made me point my finger to her finger and then to my nose.
that's it. that's all she did. she told me I was fine and that if I was still concerned that there is medical establishemnts I could go to in NYC for just this problem.
I just give up.
I think it's a combo of the fibro I have, plus the med's i'm on.
my blood work is pending for B12 .

I do think you have the symptoms of fibromyalgia and you will know when the rheumy dr presses on certain points of your body. it will hurt very bad.
there are many points on the body that when pressed will determine it.
there is no blood tests at this point yet to test for fibro,
that's why people don't get accepted for disablity on this dibilating and painful illness.
I suffered for years not knowing what I had. only when I came to the health boards and spoke to the people on this board did I condsider telling my dr. and low and behold, the rheumy dr found it.
I was beginning to sound like i was a hypochondriac.
it's effected my life to hte point wehre I can't even do any type of work that involves using my muscles. no more gardening and stooping over to lift weeds, not cutting back bushes. I couldn't even spare being attacked by having to cut and manicure my father in law's toe nails who's had a stroke. he's 85 yrs old and has no one to come and do his nails. so I do it.
it takes me a good hour and a half for the entire process. I have to bend down, and also sit on my knees and in positions so that I can reach the foot.

all my muscles were in burning agony for 3 days afterwards. the upper muscles in my thighs hurt so much to the point where I couldn't even sit down on the john wihout screaming in pain.
I knew something was wrong years ago, but m family dr. never did anyting about it.
I too couldnt' keep my arms lifted above my head to grab things off the shelves for any length of time either.

and guess what? after the rheumy dr put me on medication to help my fibro pain and I went back for my follow up visit, I told him I wasnt' feeling better and just as I was feeling defeated and standing up to leave, he asked me if any dr's ever did a vitamin d deficiency test. my answer was"no".
well he did, and I'm sure as heck glad he did, because mine was very low and he put me on D supplemtns for a length of time and guess what?
all my bone pain I suffered at night and the hurting neck to turn my head while driving went away.
I thoguth it was just the fibro I was suffering but actually had two things going on.
I think the lack of D also contributed to the bone loss I was having. I was toldl I have osteoarthritis in my spine, my neck, now my fingers and the joints of my toes, and I also was dx'd with having osteoporosis and I'm only 47 yrs old. I could NOT believe what was happening to my body.
so I think it was all related to my bone loss from the vit. D defiency too.
thank God they found out I had it.
otherwise I would have only got worst. It got to the point where I couldnt' even walk up a tiny hill at my job on lunch break. I was so exhausted by mid morning and all the aches and pains I suffered.

I try to make all woman aware who have fibromyalgia to also get their vitamin D test performed.WE all need this very important vitamin to be at normal levels in order for our bodies to perform on a good functioniong level.
look what happened to me?
so hopefully by posting this, it will make others aware and maybe help others.
sincerely,
Linda

 
Old 06-14-2008, 03:46 PM   #9
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

What specialty the doctor is nowhere near as important as whether or not the doctor believes fibro is real. There are still hundred of thousands of docs in this country who think it's all in our head. Rheumys, neuros, internists and family practice included.

I'm a big fan of internists. They're qualified to treat a HUGE range of diseases and symptoms. With the exception of surgeons, family practice, rehab/PT, OB/GYN and pediatrics, EVERY SINGLE OTHER SPECIALTY is an offshoot of internal medicine. That includes rheumys, neuros, GI docs, pulmonary, kidneys, urology. All of them. They become internists first and then they go and specialize in a certain area of internal medicine.

So if you get in with a good internist, he can treat just about anything you're likely to develop or come down with. My dad is an internist, but he also acted as a cardiologist, oncologist, GI and pulmonary when we lived in a tiny rural town. He can put pacemakers in and do a bronchoscopy. Now he's an intensivist which means he works full time in the ICU taking care of the really sick people who have a ton of different things going on at the same time.

An internist is also trained to treat conditions with medication and to manage multiple medications for multiple problems. And since so many FM patients are on so many meds and we tend to have multiple other problems too, an internist really is the best choice because he will be familiar with every drug you're taking. If you're seeing 3 different specialists, each specialist will only pay attention to the meds they're prescribing. There's nobody watching all of them to make sure nothing is happening.

 
Old 06-15-2008, 06:08 AM   #10
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

yes grapedy,
I used to say to other people that internists are "detectives of medicine".

I thought they have more schooling than other types of doctors. I find them fascinating. they dont' give up until they get the answer.
on the other hand, my internist is always referring me to specialtists and doesn't want the time of day to do the job on finding out what it is himself.

it must be GREAT to have a father as an internist. Free evaluations and medical care. LOL

Are you interested in becoming a dr. as well?
I see often in the town I live in that the children of doctors also go into the field of medicine.

I've always had a drive and passion for science and the medical field myself. I used to sit indian style on the hard linoleum floor of our living room back when I was very young this very thick family medical book.
how to treat common ailments and such.
they had this section to teach you about the anatomy of the body and how the organs work.
it had clear plastic pages that had organs printed on them that sat over a page of the human body. ever since then, I've been reading any type of medical info I can get my hands on. after all, that's the main things one has to do when going to med. school, is to read, read, read and to take notes and then be tested on their memory. this is only the small part of learning of course. i do realize their is much more extensive learning besides reading. that's just an example of where it all begins.
what makes people interested in becoming a doctor or to work in the medical field? where does it begin? you have to start young of course, right out of high school because you have to go to school for so many years and then to do intern work in hospitals in every department of medicine. correct me if I"m wrong. then they go on to decide what practice of medicine they want to do, right?



I wouldn't want to be a nurse, but something in the medical field where I could help others. I find the human body a miraculous machine and it's amazing how the body can mend itself. Just the idea how the organs and glands and hormones perform seperate jobs, yet are all intertwined to work together to have peace and harmony in the body.
why wouldnt' anyone find that amazing?
some people never think about their bodies and never ask how it works. they just listen to what their doctors tell them to do and never ask questions.

my mom never asked questions. I used to ask her what the dr said after she saw her dr. and she told me she didn't know and that she was just to take her medicine.
that's the old school. it's much different today where people get involved with their health and work along with their doctor.

I heard that now that theres' such a vast array of medical information on the websites now that patients are trying to diagnose themselves and go into their doctors office telling THEM what could wrong.
a dr. once said, " Did YOU go to medical school?" and he'd go on to say, "STAY OFF THE MEDICAL WEB SITES and leave the doctoring up to me!

I"m sorry if I seemed to get off the subject here. but I found your post and reply to be very interesting regarding the difference between an internist and specialized medicine.

thank you for your information. I hope others find it helpful too.

 
Old 06-15-2008, 06:50 AM   #11
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

"I heard that now that theres' such a vast array of medical information on the websites now that patients are trying to diagnose themselves and go into their doctors office telling THEM what could wrong.
a dr. once said, " Did YOU go to medical school?" and he'd go on to say, "STAY OFF THE MEDICAL WEB SITES and leave the doctoring up to me!"

Well, as you know I have not been diagnosed yet. I finally have an appointment with a neurologist but it is not until October 1st!!! No health insurance and low on funds is the reason for the long wait... I have to go to the "cheap" hospital. But anyway, I have done the same thing... trying to diagnose myself.... but I have found from past experience that it really does pay to do so! I know of someone that had Hepatitis C, he kept going to the Dr. complaining of being tired all the time and the doc could not figure anything out and I finally started researching his symptoms on the web and told him to tell the Dr to check for Hepatitis and sure enough, that is what he had.

You as the patient knows your own symptoms the best... and a lot of times the doctors just don't listen... just like my doctor, she thinks in the back of her mind that I have MS but I discounted that a long time ago after reading about it on the web... I just don't think that is what it is. I may be wrong but only time AND MONEY will tell.

 
Old 06-15-2008, 09:37 AM   #12
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

I can't begin to TELL you moonlady how many times I've tried to diagnosis my self according to what I read on the web.
I think the majority of people do that.

I agree with you too that we know our bodies best and know if something is wrong. I kept urging and pushing my dr. and I must have been a pain in the rear to him and that's when he referred me to a rheumy who found out why I was having all the aches, pains, and groans.
it was the vitamin D deficiency AND the fibromyalgia and other things I have.

so see? If I hadn't gone back to the dr. and pushed him to listen to me, I would be flat down laying in my bed like I was and only getting worst.

I still look up on the web and that's why I'm here.

( smile) L.

 
Old 06-15-2008, 11:29 PM   #13
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

Quote:
Originally Posted by Moonlady View Post
It all started out with muscle fatigue when walking, sometimes just across the room, or lifting my arms above my head for more than a couple of seconds.........................I think the reason that my doctor referred me to a Neurologist is because she said that most Fibro patients do not have the muscle fatigue from walking or raising the arms up to reach for something.
Welcome, Moonlady. It certainly sounds as if you have many symptoms consistent with fibro, but I quoted the above excerpts from two of your posts because the exact symptoms that you mentioned plagued me for several years before I was also diagnosed with myasthenia gravis, a neuromuscular autoimmune disorder. (It's not uncommon for patients with fibro to have other autoimmune disorders.)

Normally, a rheumy would be the best specialist for you to see if fibro is suspected, but your proximal weakness (arms and legs) makes me think you are, in fact, better off seeing a neuro for the initial evaluation. I'm sorry that your appt. is so far off.

The most important thing that you can do in the meantime, in my opinion, is convincing your husband that you just can't work in the shop anymore. Good grief! The fact that you have been getting the work done for the past three months doesn't mean that you should be doing it. I'm sure it's difficult for your husband to get adjusted to this "new" you, but taking care of yourself is the most important thing you can do for you and your family.

Hope you'll stick around with us!

Hugs,
Pat

 
Old 06-16-2008, 06:19 AM   #14
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

That is interesting about the mention of Vitamin D Deficiency. I wonder if I could/should get me some Vitamin D Supplements like at Walmart to take while I am waiting for my appointment. I am desperate enough to try anything!!! But I have also read that too much Vitamin D is not good too so maybe I ought to ask my doctor about it first.

I was in so much pain yesterday, every once in a while it felt like someone was axing my bones on my shins and every other bone in my body at one point or the other felt like someone was drilling into them... all this on top of the muscle weakness. I don't know how else to explain it. I can barely walk anymore, I walk slow and probably look like a tard with the way I have to walk in order to get where I am going with as little pain as possible. It is most likely the surrounding nerves and not the bones but it sure feels like it hurts on the bone itself, sometimes a deep deep gnawing pain, other times it is sharp pains. I am feeling a bit better this morning compared to yesterday but it is still early and the most I have done is come in here and sit down at the computer.

I had to chuckle about the misspelling of words etc, I catch myself doing this also when I am typing and I didn't used to be so bad. It is not just normal typing errors, I end up typing real words but not the right words and sometimes I get the meaning of different words mixed up when even when I talk. I told the lady at the bank the other day that my dog was being gullible when in fact I meant the teller was being gullible not the dog. LOL we were at the drive through and my dog was licking her lips like crazy begging for treaties and the teller gave her two instead of just one LOL.. after I drove away and realized what I had said, I felt like an idiot.

I can't think straight half the time, yesterday for example a watermelon I had just purchased was laying on the table...the table is directly in front of the fridge. So I opened the fridge and just stared at everything in it trying to figure out why in the world I opened it... what the heck was I after, I got frustrated and I shut it and then turned around and saw the watermelon again. So I opened the fridge again, stared inside for a minute AGAIN and then I finally snapped out of that fog and grabbed the watermelon and put it in.

I think this board is great, it is nice to know that there are people out there that actually understand what I am going through. As you all know, this is so hard dealing with when it comes to family and friends because they just don't get it.

Thanks all!!

 
Old 06-16-2008, 10:39 AM   #15
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Re: Newbie Here... I have not been diagnosed yet but I have some concerns.

Oh, I know exactly what you mean about mixing words up or not being able to find the right one. Often I'll stop in the middle of a sentence, trying to find the next word, and it just won't come to me. If I'm on the phone with a friend or my mom, after a long pause I'll ask them, "What am I trying to say?" and they'll come up with the right word or a reasonable alternative, but I can't do that in public or on the phone with strangers. I can't imagine what they think of my halting speech, particularly since when I am able to string together a few words, I tend to talk very fast. My head would be spinning if I were on the other end!

What's great about this board is that we aren't judged if we ramble, make a lot of typos, or even not make much sense; we are loved and accepted just the way we are!

 
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