by Kathy Batesel
What's Wrong with Me?
My good friend Amber told me she's used SAM-e for depression. It helped her immensely, but I hardly dreamed it would solve my own medical problems. Disabling arthritis or fibromyalgia symptoms besieged me in 2000, thirteen years ago. Upon waking, my knees were so stiff and sore I had to wait several minutes before I could walk. My wrists, fingers, and ankles ached constantly, too.
"For heaven's sake!" I thought at the time, "I'm only 32!" I had only been out of the military for a couple of years, and while I was no G.I. Jane, I was otherwise in pretty good shape.
Arthritis symptoms weren't my only concerns. Within a short time after these painful wakings began, I started experiencing strange heart fibrillation once in a while, and I noticed my energy level dropping sharply. One day, I became winded from climbing a set of stairs! What happened to my stamina?
I made the first of many doctor appointments.
Basics about Fibromyalgia
For each question, choose the best answer. The answer key is below.
- Who is most likely to be affected by fibromyalgia?
- It affects men and women equally.
- Scientists aren't sure what causes fibro, but which of these things is NOT believed to trigger symptoms?
- Bacterial or viral infections
- Chronic stress
- Development of other autoimmune disorders like arthritis or lupus
- Symptoms of fibromyalgia are:
- Chronic and severe
- Chronic, but may fluctuate
- Chronic, but may fluctuate
What is Fibromyalgia?
- Fibromyalgia Symptoms - What Fibromyalgia Feels Like
What is fibromyalgia, how does it feel, and what makes the symptoms worse? This link from the fibromyalgia network explains common symptoms about the disorder.
Fibro, Myalgia, or Fibromyalgia?
The doctor examined me thoroughly. He sent me to a rheumatologist who concluded that I did not have rheumatoid arthritis. He ordered X-rays of my heart to see if it was enlarged. Nope. He tested for Lyme disease and ruled out lupus. He asked about my sleep patterns (what sleep patterns?) checked for tender spots around my neck, spine, and a few other areas to see if I had fibromyalgia.
Fibromyalgia, also called fibro, is an autoimmune disease that affects soft tissues and muscles. It causes widespread, disabling pain. Although I met most of the diagnostic criteria for it, I didn't meet the most crucial one doctors use for making a firm diagnosis: tender spots. Health Magazine's article on fibro reveals the points on the body known to trigger a pain response, but I only felt pain at a couple of points, and doctors hesitate to diagnose fibromyalgia if at least eleven of the eighteen points don't cause pain.
"Non-specific myalgia" wrote the doctor. He advised me to take anti-inflammatory, over-the-counter medicine daily to see if it helped. Because the pain could improve or worsen for weeks or months at a time, I couldn't really tell if it worked. I didn't notice immediate improvements when I took them, and the pain decreased on its own (but never went away completely) even when I stopped taking them.
Progressive Symptoms and Troubling Treatments
In the years since, my symptoms worsened. I gained weight, found myself experiencing depressions more often, the joint pain became unbearable, and I still had profound disturbances in my sleep. I rarely could get to sleep before 2:00 a.m., and sometimes at all. My thought processes got fuzzier. I had trouble focusing on complex ideas that never would have caused me problems before. My creativity dulled. I lost a great deal of ability to feel joy or pleasure.
And the rounds of doctors continued. Repeated blood testing revealed that I had a "high sed rate" in my blood - an indicator of inflammation within my body. I also had a positive rheumatoid factor, which can indicate rheumatoid arthritis, but isn't a reliable indicator.
A chiropractor I spoke with encouraged me to take a supplement called Cyruta-Plus, a nutritional supplement that seemed about as effective as the ibuprofen I'd taken years before.
My general practitioner prescribed high doses of Vitamin D and encouraged me to take magnesium supplements. I didn't experience a noticeable improvement after a month of these.
I visited psychiatrists who tried me on anti-depressant medications that proved largely unhelpful. I had some benefit from Cymbalta, but I'm scared to taking any medication for too long and I went off it after it cleared my thinking a little bit.
Another M.D. ruled out multiple sclerosis and sent me to another rheumatologist, who ruled out ankylosing spondylitis, then said I probably had sleep apnea, but a sleep study ruled that out, too. He encouraged me to take melatonin to help me sleep and also suggested ibuprofen. The melatonin worked for a few days but stopped working for me in less than a week.
A third rheumy ordered X-rays of my spine, fingers, and knee joints. He diagnosed me with non-aggressive rheumatoid arthritis, showing me areas of joint inflammation on my upper and lower spine and in my fingers. "But there is none in your knees or ankles," he said, despite the chronic pain I had there. He prescribed an anti-malaria medicine that worsened the pain, and I stopped taking it, but I continued to take the Tramadol he prescribed, which seemed to provide a small measure of relief.
By this time, I'd spent a great deal of time doing research on the Internet, and although I am not a doctor, I was forming a few theories of my own as I spent hours looking up words and trying to figure out the complex studies I read about.
Auto-Immune Diseases Affect 1 in 5 Americans
Nearly everything that had been tested for fell under the category of auto-immune disorders. An auto-immune disorder is essentially a condition where our bodies don't fight off the bad stuff and instead, let it thrive.
I started feeling convinced that with so many kinds of symptoms affecting so many body functions, the answer had to be connected to some kind of chemical or cell that was present throughout the body, but I had no idea what that might be, and the docs didn't seem helpful either.
In fact, when reading about how auto-immune disorders come about or how depression is treated, I constantly came upon the same sentence. "Scientists do not understand...."
Over the last couple of years, I became increasingly desperate as my ability to feel joy and pleasure dropped off sharply. Frequently, I felt numb and empty even though my life is the best it has ever been, with a warm, devoted husband who treats me like his queen and and wonderful grandchildren that have come into my life. I discovered that there's a technical term for this condition: Anhedonia.
Again, I found that disclaimer that said the condition was poorly understood. But I also ran across something else - a reference to Sam-E, the same supplement my friend had told me about helping her depression a few years ago.
Columbia Psychiatrist on SAM-e (Barbara Walters Interview)
No over-the-counter product, including Sam-E, should replace a medical doctor's care! Talk to your doctor about the potential benefits and problems of using Sam-E. Certain people should not use this product for any medical conditions.
Stomach pain and dry mouth may be a problem for some users. You should thoroughly read reviews and talk to your physician before trying Sam-E.
Sam-E - What it Does
I read basic information about Sam-E plus approximately a hundred reviews of Sam-E from actual users. WebMD's reviews were the first ones I read. was surprised by the overwhelmingly positive reviews I found there. While a few said it took a while for it to help them, most reported fast improvement in mood, energy level, mental clarity, and even arthritis and fibromyalgia conditions. A few of them said they had stomach pain from using it, and did not report improvement (about six percent of reviews reported this being a side effect that made them stop using it.) No other side effects were mentioned.
You can imagine how hopeful I felt. They were saying that a single, over-the-counter supplement was addressing every single complaint I'd been having for nearly a decade and a half! I figured I could deal with a bellyache if it'd fix the rest, but I needed to know more first.
I looked deeper into what Sam-E contains, studies that have been performed, and how it works. It has a number of complex scientific names, like S-Adenosyl Methionine, but I'll keep it simple here. I ignored reports that appeared biased or were published by a drug manufacturer or retailer.
I discovered that Sam-E supplements replicate an amino acid that's naturally in our bodies but is not found in food sources. This was consistent with what my suspicion about a single, system-wide deficiency possibly causing my health problems.
This amino acid is a protein. The way it works in our bodies is explained well in this 1999 article from Newsweek magazine, reprinted by Biopsychiatry online. A natural process called methylation transforms the beneficial SAM-e amino acids into homocysteines that are toxic. A healthy body with adequate B-vitamins normally will recycle the homocysteines back into SAM-e, but our levels of SAM-e naturally decrease with age. Poor nutrition choices and frantic lifestyles can challenge our bodies to work at optimal efficiency.
Because it has been in use in European countries as a prescription or non-prescription drug since the 1960s, there are many existing studies on SAM-e's effects, but most have not been sponsored by a major U.S. research facility, so American doctors may be reluctant to recommend it. It's sold as an over-the-counter nutritional supplement. As such, it is not monitored the the Food and Drug Administration (FDA).
There is strong evidence that it helps as well or better than most prescription anti-depressant drugs for people experiencing major depression, and sizable evidence that it helps with osteoporosis. There is conflicting evidence or a lack of strong evidence for help with other conditions it's thought could benefit from Sam-E: liver function, ADHD, fibromyalgia, and pre-menstrual conditions like PMS (pre-menstrual syndrome) and PMDD (pre-menstrual dismorphic disorder). For an overview of scientific findings, dosage information, and precautions, visit these links:
SAM-e in Scientific Circles
- NYU Langone Medical Center
NYU Langone Medical Center is one of the nation’s premier centers of excellence in healthcare, biomedical research, and medical education. This page reviews studies completed to date on Sam-E.
- S-Adenosyl-L-Methionine (SAMe): An Introduction | NCCAM
S-adenosyl-L-methionine, also called SAMe, may be helpful for depression, osteoarthritis, and cholestasis. From the U.S. National Institutes of Health.
- University of Maryland Medical Center
An overview of S-adenosylmethionine (Sam-E) uses, dosage, side effects, and warnings.
People who should not take SAM-e without their doctor's strict approval:
Anyone with bipolar disorder / manic-depression
Anyone with AIDS
Anyone with Parkinson's disease
SAM-e on Amazon
Rate SAM-e if You Have Tried It
My Experience with SAM-e
I decided to give SAM-e a try because the type of side effects weren't severe and the risk seemed reasonable after reading so many positive reviews. If it helped even one of my symptoms well - the low energy, chronic pain, fatigue, and poor sleep - I'd be a happy camper. If it didn't, I'd be out the cost of another doctor visit or two.
The same day, I drove to a nearby store, where I found two versions of SAM-e. Both contained the ingredient thought to cause upset stomach - (mannitol) but the one labelled SAM-e COMPLETE specifically described improved mood and joint functioning, so that's the one I chose. I'd hoped to find one without mannitol, but I'd either have to chance it or wait for an online order to arrive. After fifteen years of pain, it probably would have been okay to wait a few more days, but I decided to gamble.
I took the recommended dosage of 400mg on an empty stomach as advised. Although much of what I'd read encouraged users to take the supplement each morning, I took my first dose in the early evening.
The next morning, I paid particular attention to how I felt climbing out of bed.
I had no pain at all in my knees, ankles, or feet!
I'd expected to see a little improvement, but a complete absence of pain far exceeded my wildest hopes. I tested a bit more. A gentle squeeze on the middle joint of my pinkie finger revealed that it still felt tender, and so did the center knuckle of my middle finger. By the next day, their pain was diminished significantly, too.
Believe me, the disappearance of so much pain was a mood lifter all by itself! Getting up from a chair, dressing myself, and letting the dogs in and out no longer felt like challenges.
I don't know if it's just feeling better because I've been pain-free or if it's due to SAM-e, but I've felt more energy and motivation than I have in a long time, too. My husband has noticed the changes. He told me I "seem upbeat" lately.
You know what? He's right.
jellygator (author) from USA on December 17, 2016:
I use the one I posted about in the yellow box. I don't take it all the time these days, but when I have flare ups of pain (yes, I do still have some at times) or depression, I buy a box and use it for a few weeks.
Moringa on October 23, 2016:
Hi jellygator. Did the pain return after you stop taking the sam-e?
What kind of drug made you stop taking it, and how long you used it overall?
I have severve pains all over my body and really bad morning stiffness for about 4 month. I am not diagnosed yet, all my tests are OK. And pretty sure that i have some kind of FMS. I tried alot of homeopatic drugs and supellments nothing helped. I raed what you wrote two years ago and it gives me a little hope. What kind of brand you sugesst? In my coutry there is only 200 mg pills costs about a 70$ per 30 pills and i thought of ordering it online any recomendation on such a place?
jellygator (author) from USA on October 04, 2016:
Hi MJ, I had to discontinue it while taking another medication. I wish I was still taking it, though. I hope you'll come back and post your experience with it here, though! I'm confident you'll feel great benefits.
MJ on October 02, 2016:
Hi there ! I was just wondering if your still taking the Sam-e. I'm hoping and praying this works for my fibro and mood. Just bought some tonight and very curious if your still having positive results.
Suzie from Carson City on January 09, 2016:
EXCELLENT description of Sam-e! You have covered it all and quite professionally. This supplement is all that you present and then some. I recall selling quite a lot of it when I worked for a few years with "General Nutrition Corp."
I have a great interest in integrative medicine and appreciate well-researched material. Thank you. Peace, Paula
Yahya Abdal-Aziz on October 26, 2015:
Thanks for the detailed info in your article! I've had CFS for well over a decade, along with several other major health issues, and had to stop work completely nine years ago. Although I'd heard of SAMe, the previous reviews I'd read didn't inspire much confidence.
But today I read the article you've referred to from the University of Maryland, and this has encouraged me to consider trying it. Note, however, that the UM article suggests that if you're taking Tramadol (Ultram, etc.), you should consult a doctor before taking SAMe - so I plan to do just that.
Then I read your article about your experience with SAMe. It's really encouraging! Wouldn't it be wonderful to wake without pain and stiffness?
Have you found it makes any difference to your fatiguability, or conversely, your stamina? That would be great if it did.
As for the mannitol, I don't know whether the SAMe products available here in Australia use it; I hope not, since I have bad reactions to xylitol, another sugar alcohol used in sugar-free chewing gum and many diet drinks; they all trigger, or worsen, the symptoms of Irritable Bowel Syndrome (IBS is a common complication or "comorbidity" of CFS and fibromyalgia).
Anyway, thanks again for taking the trouble to share your experiences with us all!
Almostacure on April 20, 2015:
Sam-e was great for my mood and depression. Its hard to explain but it felt like my body & mind could tell the difference between a natural cure vs a chemical one. I always felt "fake" happy on pharmaceuticals if that makes any sense.
Unfortunately, I experienced the same problem as a commenter above. I started to get severe gastrointestinal problems that I wound up in the hospital. At first it was minor gas type pains that came now and then, then they became more frequent until it was full blown and unbearable. I was sweating profusely and keeling over in extreme pain with OTC medicines having no effect. I tried reducing the dose (which was already way below what was recommended) cutting the pills in half to all out stopping with no reduction in pain.
The hospital doctors could not explain it. Some thought it was in my head, others thought I was probably addicted to pain killers as dilaudid (a very strong painkiller) only worked for like 10 minutes. Eventually it passed with no anomalies in my urine, feces and blood. The only thing that was noticed but no doctor were worried was a slight swelling in the intestines detected by MRI.
Years later I remember how well it worked and attempted it again after reading that it could have been the mannitol (a sugar alcohol) that was an ingredient in most Sam-e products. I tried one which did not have mannitol in it and even confirmed with customer service but who really knows. Manufactures don't always label every ingredient and I am sure the CSR just read the label. Anyhow, stomach pains started to happen even when trying to counter it with "Yogi tea stomach" which basically has every herb to sooth the stomach. Still no relief and I quit right away not ready to ever live that painful experience.
I then tried TMG which was supposed to be a weaker substitute for Sam-e but it didn't do anything close to Sam-e.
All manufacturers I used were very reputable and had enteric coating.
It really a shame that my cure is my poison. This was the only substance that worked and I tried many both herbal and pharmaceutical. Did anyone else on here have the same issue but found a way to combat it?
jellygator (author) from USA on October 22, 2014:
So glad to hear that, Yolanda!
Yolanda on October 18, 2014:
I started Sam-E a week ago and i feel amazing! My knee and joint pain has severely cutailed. Im almost certain in 1 Week it wipl be gone! Thanks for sharing!
jellygator (author) from USA on April 16, 2014:
I hope it does, too. Please stop back in and let us know how it does for you. I felt an immediate difference, but it does cause me stomach pain if I don't watch it. I can't imagine doubling the dosage! If you have not talked to a doc about this, it might be worth considering!
Debbieb on April 16, 2014:
Have arthritis in lower spine. Decided to try SAMe since nothing else is working. Staring taking 400mg a week ago. I have seen no changes so yesterday I added another pill. I will do this for a week and increase to a third if I need to. I hope SAMe works for me.
jellygator (author) from USA on August 19, 2013:
Hi Staro, and thank you for sharing your experience with Sam-e. I have been using the Nature Made with the mannitol, and although I would prefer to find Nature Made brand without it, too, so far I haven't. Could i be that your body is better off taking two half doses instead of one big one that might be overwhelming it? Maybe it would be helpful to talk to your doctor about this!
staro on August 18, 2013:
I've had fibromyalgia/chronic fatigue for 14 yrs now. I also get bad dizziness and migraines. Living with all these symptoms causes depression in the happiest of people.
I have been on and off Sam-e for years. It always lifted my mood with very little side effects (only a little bit of stomach cramping at first, but nothing I couldn't handle). I always used the brand Nature Made which I would buy from Costco. They have frequent discounts and I can be sure that I get a product that hasn't been tampered with.
Well, I hadn't taken sam-e for a couple of years. When I bought it again last week, I noticed that the packaging info had changed. It no longer had "liver support" on the list of things it was good for, for some reason. I bought the 400mg so I wouldn't need to take 2 and I don't think Costco offers 200mg anymore.
Within an hour of taking it, I noticed a heaviness in my chest and extreme jitteriness. My stomach began to cramp and I would double over as soon as I would eat or drink anything even water!!
I didn't stop taking it, thinking these side effects would pass. I've been taking them for 6 days now and the stomach cramps, jitteriness and heart palpitations are as strong as ever! I even have severe insomnia. I looked up the reason it causes stomach cramps and read in several blogs that it was caused by the sugar alcohol mannitol!
Did they not use this ingredient when I bought this product before? Also, why was it making me so jittery and all when it never did before?
I've been searching for a sam-e product without alcohol but haven't found one. Natrol doesn't have it but they are not a company I trust. GNC used to not have it but now does.
I loved Sam-e, it was one of the only pills I could take without side effects that actually helped! But now, I am forced to stop taking it because even though my mood has slightly lifted, I can't live with these added symptoms :-(
Deborah Brooks Langford from Brownsville,TX on May 13, 2013:
Blessings to you I will be back.. come visit me.. deb
jellygator (author) from USA on May 13, 2013:
If you try it, I hope you'll come back and let us know how it works for you, Deb. I can't believe the difference!
Deborah Brooks Langford from Brownsville,TX on May 13, 2013:
This is a very interesting hub.. I have FIBRO.. and I know how if feels and I know what triggers it.. I know what i can eat not eat.. I know i have to walk every day and work out and eat fresh.. limit caffeine.. NOT SODAS AT ALL..lots of water..
thank you for writing this hub.. I will look into Sam E and see how it makes me feel
jellygator (author) from USA on March 29, 2013:
I am stunned at the huge difference it has been making in my life. I think there's something important about that methylation process turning the good proteins into bad ones, because something that affected almost every aspect of my life seems to have vanished. I hope your friends can get as much benefit from it as I'm getting! They'll thank you forever.
Dianna Mendez on March 29, 2013:
Quite an interesting read on this product share. I have friends and family suffering from fibro. I will have to share this information with them. I hope you continue to improve.
jellygator (author) from USA on March 27, 2013:
mbwalz: If you do give it a try, I'd love to hear if you find it helpful. I am amazed at the difference.
Carol: The docs seem to be mostly in the dark about many of the autoimmune disorders. They all begin at a cellular level, so I guess it's hard to study well, but it can be frustrating for those of us who are under the thumb of one of these diseases. I'm so grateful to be feeling better right now!
Thank you both for visiting and commenting!
carol stanley from Arizona on March 27, 2013:
I have heard if Sam E and how wonderful you feel better. I will suggest it to a friend of mine who has fibro. It also shows you there is much that doctors know nothing about. Glad it worked for you. Voting up and sharing.
MaryBeth Walz from Maine on March 27, 2013:
That was really great info. I have Ehlers - Danlos Syndrome which is often misdiagnosed or co-diagnosed with Fibro. We also tend to get arthritis early on. I always wake looking for that darned truck that spent the night running back and forth over me. I've tried Turmeric and Malic Acid. Right now I'm taking Magnesium malic to help with the pain - it's been shown to help with Fibro. SAM-e sounds like something I might try too, especially in the winter when I do experience some depression. Thanks so much for the info, so glad it's helped you! Voted up and shared!