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The Truth
18 Replies
Cher0208 - February 4

“Fibromyalgia became validated as a true medical condition only when pharmaceutical manufacturers developed a drug to treat it.” – David Perlmutter, M.D.

Read this on Facebook today. And it's so true. I was going to comment but I got caught up in what hundreds of people were saying. A lot said diet will make you or break you...which I belive is true. Someone said Pharmecutical companies = organized crime...I think this is true also. Another said that it has everything to do with your spine and once she got her spine corrected her symptoms went away. That had me thinking because when I force myself to sleep on my back the whole night I have no pain in the morning. Buuut anyway, just wanted to share this with you all and say hi. Send my love and prayers to everyone on the forum and sincerely hope everyone is doing better.

Still have MAJOR depression before period. I'm in the throws of one now and literally just came down from a massive panic attack fifteen minutes ago. I now feel like I ran a mile and am about to go lay down, I'm so exhausted. I read this today:

Iron deficiency anemia symptoms in women may include:

Extreme fatigue
Pale skin
Shortness of breath
Dizziness or lightheadedness
Cold hands and feet
Inflammation or soreness of your tongue
Brittle nails
Fast heartbeat
Unusual cravings for non-nutritive substances, such as ice, dirt or starch
Poor appetite, especially in infants and children with iron deficiency anemia
An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome)


Cher0208 - February 4

Also, severe cramps. Interesting.
Some thing else to get tested for.

Love to you all! [3


kvc33 - February 4

Hi Cher, I too have extreme anxiety at PMS time and have diagnosed myself with Premenstrual Dysphoric Disorder. You might want to look it up. Basically I feel mentally ill at PMS time, feelings of intense grief, sadness, anger, and anxiety. I get the urge to get in my car, drive away and never come back. I've gone for a very long drive a few times! Trouble is I take myself wherever I go and I'm too tired to do much 'running.' I take herbal diuretics to help with the symptoms. Apparently not only does the body retain water at this time but the brain does as well and the swelling is one of the things that causes emotional symptoms. I am very disappointed in the medical community. About five years ago there was an article in a magazine that said that by now there would be a treatment for CFS and fibromyalgia but all they give us is just pain killers and anti-depressants. They are nothing new and aren't targeted to our needs. I can't take them anyway. I took iron and it didn't do anything for the symptoms that you listed (most of which I have).


Cher0208 - February 4

Kvc33, that is exactly how I feel. I've known for years that I had Premenstrual Dysphonic Disorder. All the doctors ever want to do is prescribe me birth control. I was on it for at least 10 years and I don't want to be on it for its many side effects. Causes some cancers while supposedly preventing others, causes you to be deficient in many vitamins, causes fibro adenoma tumors just to name a few. I still had acne, still became depressed and anxious and still had cramps on it. It simply lessened it. Since stopping them several months ago, my body has been going through hell. Now they're saying Endometriosis because of the severe cramping.
What I am now finding it difficult to cope with is the depression which feels like full blown mental illness. I am not myself. Everything I know and believe goes out the window. I can't concentrate, do yoga, meditate, do affirmations or deep breath. I feel like I want to run away like you said. Everything and everyone irritates me to no end. I can't prepare myself food. It takes everything I have to get myself dressed and to work. After that, I have no choice but to come home and get in bed. The way I feel is severely affecting my quality of life. I honestly don't know what else to do. I'm putting my all in and everyday is still a struggle.
I am not in favor of medication but when I feel like this I want to go to a doctor immediately and ask them to give me whatever they have.


kvc33 - February 4

You and I are kindred spirits when it comes to PDD. I hate everyone and everything at that time and usually I try to not have contact with anyone for a couple of days otherwise I'll be very tempted to let them have it. People seem very familiar with PMS but not PDD. If men had it society would really take notice because there would be a lot more murders and assaults at their time of the month. I'm looking forward to menopause because this is nuts. I get symptoms for 10 days and then bad cramping for three during my period. I take mefenamic acid for it and it works very well with no side effects, otherwise the cramps are so bad it feels like I am in labor. A gyno also tried to tell me I had endo but I know I don't. I hope you will consider looking into both natural and medicinal ways of treating it. I think cramp bark is one natural treatment for cramps and also raspberry leaf tea.


Cher0208 - February 5

Why does it feel so good to talk to someone who knows what you're going through? I feel like I need to be locked up for the duration. And it sucks because you feel like a maniac a week before your period. Forget about the week of your period and the week after you're recovering so what does that leave you with? One week that it's safe for people to be around you. You're damn right about if men had it there would be a lot more violence. People have no idea the restraint we have during that time.
My panic attack last night was due to the sudden onset of cramps. I mean so bad that you start sweating while getting the chills, your legs get weak and you start to feel light headed. Then the panic sets in because the pain is so bad you are about to go to the emergency room. You don't know when relief is going to come or how bad it's going to get this time. I am seeing a Naturopathic doctor who just so happens to have me on Chaste Tree, Black Currant Seed Oil, Saligesic (natural form of aspirin) and a high quality omega fish oil supplement. He's treating me with flower essences and homeopathy. I still have to take Advil though because if I don't I'm taking a big chance. I'm going to pick up that Raspberry leaf tea and the mefenamic acid.


January - February 5

Hi you two. Just scanned through this thread, and while I never had the severe cramps, I used to get very depressed. Someone told me how important it is to keep B-complex vitamins in your body, especially niacin (the flushing kind, not niacinamide). B-complex is water soluble, and washes out daily, so it's good to take one a day even if you take a multivitamin. I don't know if this will help with your moods, but it sure helped with mine. Yes, it makes your urine fluorescent yellow, no problem. When you take the extra niacin, take a very small dose to keep the flushing down - I used to get tablets, and break them up into 25 or 50 mg doses. If taken with food and/or milk it helps control the flushing too. If you do get flushing, it's not serious, just itchy and annoying for 10-15 minutes. The difference niacin made in my serious depression was amazing!! I could feel like jumping off a cliff - and 20 minutes after taking niacin, I was fine! Good luck with the regimens you are on.

And Cher, about the pharma companies, I agree!! I have read so much online about the seriously bad side effects of antidepressants. Talk about addictive drugs! It's true that fibro is now being "marketed" as an illness that can be "treated" with these drugs. The drug companies are making tremendous profits, the doctors are handing them out like candy. Nobody is looking for the root cause of our symptoms! Again, I suggest, before taking these things, search the internet and read up. They may appear to work at first, but they usually quit over time, and then you are in for some trouble.

Some sites to look at are ssristories, and anything where you type in the name of the antidepressant, plus side effects or withdrawal. Another good site is theroadback - which talks about how to get off these drugs. There are also some videos about what a hoax they are - but people discredit the videos because some have been connected with a certain church. The information may be valid though! I keep watching friends go on the drugs -- and then they stop working and the problems are worse than ever. Getting off them is difficult to say the least. I did it, but it was rough. Never going there again!



kvc33 - February 5

Just to let you know Cher, the mefenamic acid is a prescription medication. My bf and I joke that there is only about a week out of the month that is 'good' for me because I'm either premenstrual, having it, or recovering from it. I also get night sweats, sore boobs and so on. It just maddens me. I'm far too old for babies and just want the madness to stop. It also feels good for me to hear that someone else goes through what I do because I have never known anyone else who does. I wish you well in finding relief.


Tspringer - February 25

A comment on the person on facebook posting about how fibromyalgia is all about the spine and after having her spinal issues corrected her fibromyalgia went away.

She never had fibromyalgia. She had a spinal disorder - which was corrected. Her diagnosis with fibromyalgia was incorrect, which is extremely common. I have seen folks on BBS's ranting in joy about how they began taking magnesium supplements and within weeks their fibromyalgia was cured. Same thing - they never had fibromyalgia they had a magnesium deficiency.

There is so much out there about diet, but there is actually very little research based evidence of any one specific diet that is proven effective. Some studies have shown that a strict raw vegetable diet can be effective, but even those studies had flaws. There is some evidence that certain things like caffeine, dairy products, processed flower, simple sugar and fructose, gluten and yeast, alcohol and MSG are all negative contributors to fibromyalgia but hard definitive research proof does not exist.

Rather than any key individual diet factors what research as indicated is that weight can be a more critical factor. Obesity is very common with fibromyalgia and this is a key causal factor for other symptoms. Obesity is also a big player in negative feedback loops. Depression and anxiety can drive overeating while pervasive pain leads to a cessation of exercise. Combine overeating with less exercise and you get weight gain.

With major depression onset before your period - is the timing of the onset consistent month to month? IE- does it always increase 2-3 days before your period begins? If so, you may wish to test different mood enhancing supplements or plan in relaxation therapy and positive events for just before that time frame. A "pre-emptive first strike" sort of strategy.



kvc33 - February 25

I agree Terry that the term fibromyalgia gets thrown around a lot and if a person says they have spinal issues then I assume that it's most likely that their pain is coming from their spine; and if it is corrected their pain should go away unless by that time their brain has been reprogrammed to still feel the pain. I don't believe that fibro is a vitamin or mineral deficiency either. I've taken a ton of them and they have done zero for me. I find the issue of weight interesting. I don't exercise because I can't yet my weight is always stable. I see other people who walk all day in their job yet need to lose 80 pounds. Why I don't gain I don't know because I love to eat. As for my Premenstrual Dysphoric Disorder, it can begin as much as two weeks before my period but usually starts 10 days before it and gets worse as the time gets closer. It's different every month and the symptoms really vary. I find that a good cry does me a lot of good. I would also love to go for a massage every month but the cost is so high. Most people I know with CFS find that a change in diet helps and for some it makes a big difference yet I don't believe that a bad diet is the cause either. For example, the producer David Foster, smoked, stayed up all night, and ate junk food for decades until mid-life and never got sick from it. At that point he had a panic attack which scared him into a healthier lifestyle. My landlady smoked for sixty years, she is now 88 and has had cancer (this time) for five years plus dementia. Her energy level is still better than mine and she is expected to die any time now.


Tspringer - February 25

It is confounding. Look at how Winston Churchill lived - can a human being BE any more offensive to their own body? Yet he lived to 91. My grandfather was a heavy smoker for 70 years. He died of cancer, at 89.

My mother had brain surgery for cancer last month. All through the fall she was convinced she had Lyme's disease. She had found a tick on herself and it freaked her out a bit. But she was having shaking and tremors and massive headaches with slurred speech and difficulty breathing, she was a mess.

They tested for Lyme's, negative. They sent the tick (she had saved it)out to have it tested. Not the species of tick that carries Lyme's. But she was not convinced, she KNEW that she had Lyme's disease. She was delusional with it.

So she goes to the emergency room at 2am one night in December thinking her head is going to explode. They do an MRI, the internist is thrilled! He has solved the mystery! There is very clearly a giant round large something inside her skull. She has a tumor the size of a golf ball above and inside from her ear.

Not Lyme's disease. I told her so all along. Nobody ever listens to me.

So the surgeon schedules her up, goes in with a massive cut across half her head but all inside the hairline and removes this giant calcified melangenoma (sp). He said it had probably been growing slowly for a decade or more. Benign. No complications. Cured. No followup required. All symptoms vanished - a month later you can barely even see the scar in her hair even when she is trying to show it to you.

I told her I would trade brain tumor for fibromyalgia any day of the week.



kvc33 - February 25

Wow! What a story. I'm glad your Mom is okay now - and the fact that they could do surgery without compromising her brain function is amazing too. The surgeon should be very proud of him/herself. Even though I'm right all the time too, no one ever listens to me either, except my partner, and he has to!


Jocelyn - February 26

The funny thing is many people, like myself, with Fibro and many other health issues, have never smoked, nor taken illegal drugs and have tried to lead a healthy lifestyle straight from the start. I have two brothers who are alcoholics and smoke way too much and were not interested in the family life like I am.

My father died at 60 due to smoking complications. My mother who was never sick, never drank or smoked and took good care of herself came down with Lupus at the age of 60 and a few other rare diseases after that including gall bladder cancer, and a mild form of Fibro. It never stopped her, she was more active than me at this point in her and my life.

She died, 18 months ago at the age of 78, not of cancer, but would have if the dissected Aorta hadn't come in to play when her high blood pressure sky rocketed for unexplained reasons.

But,!!! All of a sudden when I was about 32 I started with odd pains, that slowly grew over time. I went to many doctors just to be told it was all in my mind. Well, I never believed them because I was so active and I kept searching, but was sill doing everything, but with unexplained pain at times. Then BAMB!!!!!!I AT 52 diagnosed for 4 years with Fibro and Sjogrens as well.

My mother even with Cancer could run circles around me.

Just think how I felt lying to her as I took care of her, running her back and forth to her doctors in Boston and not telling her how bad I felt because I was too worried about her. She would say you look so tired and pale are you okay, and I would say, of course, I just had a busy day at work.

Who would of thought! I used to ride and show horses with my two kids. Bathing horses, cleaning stall, polishing the silver on the western saddles, cleaning the leather! Hmmmm, I can still smell all the wonderful aroma's of our horses! How delicious those days were, how happy I was. Combing the horses manes and tails until the were shiny and silky and smelled so scrumpcious. Up at 5 a.m. for a horse show, up until late at night getting the horses down for bed. Enjoying the excitement and fun a horse show can bring and watching my children compete with all the ups and downs of winning and losing.

Up all night watching our horses give birth to their babies. Spoiling their foals like crazy, watching the silly things foals do, making me laugh like crazy, and watching them grow up to be great horses. My children, home, husband, horses, and dogs, were my life, a life I loved and thought I would always have, and when I grew older, well....then I would take time for myself to just stop and smell the roses while trail riding with my horse through the woods and soaking up the swaying relaxing feel of the ride with the sun filtering through the trees, the smells of the woods, the leather saddled melding in with the aroma of the horse oils, and soaking up the sunshine and feeling the breeze on my face. I could ride for hours just chatting and laughing with my kids.. life is just....a life. My horses have had to be boarded a a friends stable so that they can be taken care of, since I no longer have the energy with all the pain. I cannot clean a stall, climb up to ride a horse, or even brush them. They are no longer shown and I rarely get to see them because they are almost two hours away and the drive can be too long for me. I'm just to tired.

The horses stalls with their automatic waterer's and their outside fences, round pens, and lean too's have been taken down. They no longer roam my land. They are just a beautiful memory of what I was and had been. I set in my recliner and think of what it would be like to just ride one more time and it excites me to think of it. In order to keep myself busy I work a 40 hour job, which is sitting down. I am getting through the days, barely. I don't know how long I will be able to do that . I am the type of person who needs to keep my mind busy to starve off the depression. I can't take the drugs they make me sick. I am on some meds, but not much. Just to take the edge off the pain.

Today, I went to my married daughters house to help her make valance's for her son's room. I used to make all kinds of designer window dressing before the Fibo hit. But it is so nice to spend time with her. We made the curtains and I pushed myself through and slept when I got home. I am taking my grandson for two days while he is on school vacation and my husband and I are going to head to the Children's Museum in Boston. I don't know how I am going to make it through the day, nor does my husband, but he knows I want to do this, so he is going to help. I just have to try. I'm sure if my legs manage to hold up, the pain will be bad, but the smile on his face does something to me. I don't know what it is with kids and animals, but they bring a smile to me even on my worst days.

I am hoping to work until I am 62, but at this point it doesn't seem like a reality. If I make another 2 1/2 years I will be doing good, but really that is not what I want.

I have learned with Fibro that what you want is most likely not possible and it is very hard to swallow for sure.

I don't think the medical community has done enough for this disease and the drugs available are very dangerous to many people, me including. I have allergic reactions to most drugs, even after being on one for 4 years.

I'm sorry I wrote such a long story...but I was sitting in my recliner after I work up and thinking about what I really would like to be doing....and writing about it was about all I could do.

I hope things get better for is tough and don't let anyone tell you otherwise, no matter how GOOD you look!


kvc33 - February 28

Thank you for your story. It was beautifully written and you could definitely 'sell' it. My illness started in childhood so I have never known the busy, active happy life that others have. Sometimes I think it is easier for me than for others who have lost so much, but I lost my dreams of marriage and children, work and social life. Nothing has gotten any better for 17 years. The only way I can get through it sometimes is to look at people who are worse than I am, then I can feel grateful for a while. I spent yesterday in bed barely able to get up and get a glass of water. I thought about people who are paralyzed and can't roll over in bed and get bed sores because of that and I felt very grateful that I have been spared that. I want a world where everyone is well and happy and I don't think that's too much to ask, but I won't get it here.


Jocelyn - February 28


I am so sorry to hear that your Fibro started in Childhood and that you have never enjoyed life to your fullest potential. This disease robs everyone, but I am now realizing, from hearing for you, that it can rob people in their early life. I thought Fibro started later, but I have read of cases, like you, that start in childhood. You must still be very young, does the "33" in your name mean you are 33 years old now? Do you live with someone who can help you? You have a great outlook being able to look at people who are worse than you. I do that too, I tell my husband that all the time. I wouldn't accept that I had this disease for a very long time, I kept blaming it on something that the doctors must be missing, but I recently told my husband and kids (they are grown up) that I have accepted what I have been dealt with and will deal with it the best I can. Of course, I can count my blessing that I was able to have a life before it was taken from me.

I hope that you can meet someone who understands your disease and would love to be with you. There is always a chance isn't there???

Did your Fibro progress over the years or was it always as bad as it is today? I just need to talk to someone who knows a lot about this disease. Although I am 56 now, I was in my early 30's when I started. It seemed to progress slowly at first, but over the last 4 years it has been blowing me away.


kvc33 - February 28

My primary diagnosis is CFS. It started very slowly when I was 11. It slowly progressed. At age 30 all of the symptoms that were mild became severe and it has been that way for 17 years now. I have a wonderful partner who has it as well but his case is much less severe than mine. I live alone, I must as I need peace and quiet a lot. My pain is mild, my exhaustion severe.


Jocelyn - February 28

Isn't it odd how things come about. I also have CFS, along with the Fibro and Sjogrens. However, I am the opposite of you. The pain is what is worse than the Fatigue. I had the fatigue when I was young along with sleeping disorders etc. Since I am no longer active, the fatigue is not bad, unless I do a lot of exercise type things like walking, sewing, swimming, but still at that, a nap takes care of it. It is the pain in my back and both legs that does me in. I had widespread pain for years, but that is now mild. It changes as time goes by except the back and legs, that worsens. I do believe when I retire from work, that will improve to some degree. I think sitting in front of a computer all day puts so much stress on my spine causing me leg pain as well.

I am so happy to hear you have someone special in your life and if living alone is what you need, then that is good too.

I hope to hear from you again. So take good care of yourself. I hope you have a comfortable bed since you must have to spend a great deal of time there with the CFS. Too bad they can't help with that either.

I just can't figure out why things just become so severe so fast.



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