Finding Solutions That Work
According to online sources, somewhere between three to six million Americans have fibromyalgia, and over 80% of those affected are women between the ages of 35 and 55. Anyone can get fibromyalgia, even children. It can be caused by an infection, a virus, a car accident, a divorce, moving to a new home, the loss of a loved one, even post traumatic stress disorder.
The Mayo Clinic describes Fibromyalgia as "a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." The pain can be excruciating, affecting all aspects of a person's life. Common coexisting conditions are depression, anxiety, insomnia, endometriosis, headaches and IBS.
Many of these mostly female patients were once highly motivated people. I know them. I talk to them online everyday. They've told me of their careers, their marriages, their families, the things they use to love to do. Some of them have lost everything. They didn't choose to get fibromyalgia or to become disabled. Nor are they lazy or simply unable to deal with the aches and pains of everyday life. Many of them feel as if fibromyalgia has robbed them of their lives and happiness. It's not unusual for a women with fibromyalgia to end up divorced because her spouse may not understand or be able to tolerate the changes in their lives.
My journey with fibromyalgia began a long time ago in the winter of 1995. I'd just recovered from the worst flu of my life. It was a three-week-long virus that left me weak and thin. But when my fever broke the aching never went away, and I began to have trouble sleeping. Back then I didn't notice the pain very much during the day. But when I tried to fall asleep at night, especially on those cold, stormy winter nights, the weight of my body against my bed made me ache and burn all over.
At the time I was working as an administrative assistant, and there were days when it was difficult to pull myself out of bed in the morning to work an eight-hour day. I'd drag myself home each night feeling exhausted and wondering why I had so little energy. But in the summer of 2007 the intensity of my symptoms exploded after recovering from a serious intestinal infection called C. Diff.
What had once been only an uncomfortable annoyance on cold, winter nights, now seemed like a monster that had crawled inside my body, attacking every joint, muscle and nerve fiber. The pain is difficult to describe, but if you've ever had labor pain, especially back labor, then you have an idea of the type of pain I'm talking about. Back then a good day was a six or below. But during the worst months of my disease I averaged an eight most days.
I remember feeling relieved in 2008 when I was finally diagnosed with fibromyalgia. Until that day I hadn't realized how much I feared those around me might be thinking I was a hypochondriac. To have an actual diagnosis also brought me a sense of hope. I could research fibromyalgia, find out what caused it and maybe how to lessen the symptoms, right? Unfortunately, is wasn't that easy. What the major medical institutions, and my doctor, had to say about fibromyalgia was not at all uplifting: "No one knows what causes fibromyalgia and there is no cure."
That was difficult for me to hear. I couldn't imagine feeling this way for the rest of my life, or the possibility that I might have to be on pain killers while raising my daughter. To accept that I could never get better was not something I could do.
Depression can be as difficult to deal with as the physical pain of fibromyalgia. I never understood true clinical depression until I experienced it. I knew there was something out of balance. I tried two different antidepressants and had bad reactions to both. After more research I ended up taking the amino acid 5-htp. 5-htp is the precursor to serotonin. Certain types of antidepressants work by conserving serotonin, so my plan was to provide my brain with more of the raw material to make its own serotonin. 5-htp ended up helping my depression and also helping me sleep better. One important note is that 5-htp should not be taken if a person is also taking a prescription antidepressant as it could cause a life-threatening condition called serotonin syndrome.
5-htp also became my first proof that I could improve my symptoms of fibromyalgia without prescription drugs. But I knew it was the tip of the iceberg. There were so many other symptoms to deal with. Next I researched restless leg syndrome (RLS) and found that many people with fibromyalgia are deficient in magnesium. Magnesium is a precursor to dopamine, and people with RLS are known to have low levels of dopamine. Increasing my magnesium, especially just before bedtime, took care of my RLS. Another victory, and more confidence!
The Physical Medicine Doctor who diagnosed me prescribed Lyrica and sent me on my way. She said most of her patients did very well on Lyrica. I hadn't intended on taking it because I've never liked the idea of taking any kind of drug, prescription or otherwise, but dealing with the pain of fibromyalgia on a daily basis made me reconsider. In an effort to remain hopeful I compromised. I decided I would take Lyrica, but only while researching alternative cures. Perhaps there were others out there with fibromyalgia who'd found some miracle herb or vitamin that could help.
I'd like to encourage anyone with fibromyalgia to join an online support group; just be sure they are supportive. There are some I know of I would highly recommend. But ironically, my first foray into an online support group was not, at least in the beginning, a positive experience.
I watched in horror as the support group old-timers welcomed each newbie by telling them that it was important for them to accept that their lives would never be the same, and they were encouraged to grieve. They were also encouraged to accept that there was no cure for fibromyalgia, only drugs that might assuage their symptoms. Were the old timers moles for Big Pharma, discouraging or even attacking anyone who might stray from the herd? For a while I contemplated leaving the group. Instead, I stopped reading the digest for several months.
In late spring of 2009 while scanning my email I absentmindedly opened that old fibromyalgia support group digest, and there at the bottom of the page was a post that would be my first glimmer of hope to quell the pain of fibromyalgia. The poster spoke of a non-toxic, inexpensive, generic drug called Low Dose Naltrexone (LDN), and how much better her pain level and other symptoms had been since she began taking LDN some months back. It wasn't exactly alternative, but it wasn't a pain killer either. This was something completely different! I quickly researched LDN and found, to my great fortune, that there was an open clinical trial at nearby Stanford University. Within a month I was enrolled in the Stanford Phase II LDN for Fibromyalgia Clinical Trial, and two weeks later my pain, depression and exhaustion began to go away.
I can say with confidence that LDN brought me about seventy-five-percent back to normal. I was able to do more than I'd done in years. I spent more time with my daughter, did more cooking and household chores, and generally felt like a happier person. But I wanted more. I wanted to feel completely well. And as Dr. McCandless, who owns one of the LDN online support groups, says, "Seldom is LDN a standalone treatment". Though I was beyond thankful that LDN had given me so much of my life back, I understood there would have to be more to my solution. So on I went.
By now it was the fall of 2009. The intestinal infection I'd had two years earlier had left me with malabsorption, causing vitamin and mineral deficiencies, and I realized that, even with LDN, some foods could still trigger a fibromyalgia flare. After careful analysis I identified my food triggers, but I was left nervously wondering, What CAN I eat, and how can I heal my gut? At 5'6" I weighed only 100 lbs. Going gluten and dairy free helped, for a while. But it wasn't the complete answer.
Fortunately I came across a website called "Stop the Thyroid Madness", and upon reading the symptoms of hypothyroidism I was stunned to discover they were identical to the symptoms of fibromyalgia. Could it be that I never had fibromyalgia at all, but only undiagnosed hypothyroidism? I went to a new doctor, a doctor of osteopathy, and he explained very thoroughly why I was most definitely hypothyroid, even though one doctor and two endocrinologists had insisted that my thyroid was fine. He prescribed a compounded, time-released T3 (T3 is the active thyroid hormone). After a few weeks of taking T3 I felt something I hadn't felt in years. I felt well. There was a relaxed feeling deep inside my body that I recognized as inner-healing. I began sleeping deeply and dreaming again. I woke refreshed and happy. My depression, anxiety, pain, fatigue and even my stomach problems, were gone. I was able to eat things I hadn't been able to tolerate in years. And to celebrate our good fortune my husband and I took a ten day trip to Hawaii in the summer of 2010.
I'm not suggesting that everyone with a diagnosis of fibromyalgia actually has undiagnosed hypothyroidism, but I am saying that, to a large degree, this was true for me. And I could have avoided years of pain and discomfort if I'd had a doctor who really understood how to diagnose hypothyroidism. I think it's extremely important for anyone who's been diagnosed with fibromyalgia to at least eliminate the possibility by checking out the "Stop the Thyroid Madness" website and get the recommended labwork. There's also a page on how to find a good doctor.
It's true that my life has never been the same since my diagnosis of fibromyalgia. I'm a different person now; a person who understands other people's pain, and therefore can have more compassion. And I've befriended more than a few online heroes; ordinary people doing extraordinary things to help other people they don't even know. There are my friends at LDNNow who work tirelessly in the UK to get signatures so that the British government will pay for LDN clinical trials. Another of my online friend keeps an LDN-prescribing-doctors-list by location so she can help anyone who's having trouble finding a doctor who prescribes LDN.
Medical marijuana can also help ease the pain for those on the road to recovery. There are some very effective non-psychoactive strains that help tremendously. Cannabidiol (CBD), is one of the many Cannabinoids in Marijuana. CBD is a non-psychoactive substance that quells the nerve pain of fibromyalgia but won't leave you feeling "stoned". A good way to reap the benefits of CBD is to find a strain of Marijuana that is higher in CBD than THC so you won't feel high. There is one I know of called Harlequin. CBD is also good for all kinds of IBS so ingesting the oil of a high CBD plant would help that as well. If you live in a state with medical marijuana laws you can find a strain of marijuana with high CBD by googling "high CBD strains", or call your local dispensary and ask if they carry these strains. Many of them will list their high CBD strains on their websites.
If you don't feel comfortable using marijuana, or don't live in a state that allows medical marijuana, a good alternative, and my favorite solution to stop the pain, is an anti-inflammatory herb called Boswellia: Boswellia for Fibromyalgia Take two Boswellia pills three times a day with meals. Swanson Vitamins is a good resource for Boswellia: Swanson Boswellia NOTE: Boswellia takes eight weeks to start working, so don't give up early.
Tweet
If you've been diagnosed with fibromyalgia, think that you may have it, or know someone who does, please leave a comment below.
Helpful Tips:
Have blood tests done to check for vitamin, mineral, amino acid deficiencies and hormonal imbalances. Give your body what it needs while you're healing from fibromyalgia. Malabsorption, which is a very common problem for people with fibromyalgia, may be depriving you of the vitamins, minerals and amino acids your organs need to stay healthy. That deprivation may be causing many of your fibromyalgia symptoms. Knowing what vitamins, minerals and amino acids you're low in and taking those supplements can help your body achieve a more healthy balance.
Don't believe your doctor if he/she tells you there's no cure for fibromyalgia. There are people out there who've gotten better. Find those people online and ask for their advice. Genuine fibromyalgia survivors won't try to sell you anything and will be happy to share their stories with others who might be helped by their experience.
Helpful Online Support Groups
Helpful Links
According to online sources, somewhere between three to six million Americans have fibromyalgia, and over 80% of those affected are women between the ages of 35 and 55. Anyone can get fibromyalgia, even children. It can be caused by an infection, a virus, a car accident, a divorce, moving to a new home, the loss of a loved one, even post traumatic stress disorder.
The Mayo Clinic describes Fibromyalgia as "a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." The pain can be excruciating, affecting all aspects of a person's life. Common coexisting conditions are depression, anxiety, insomnia, endometriosis, headaches and IBS.
Many of these mostly female patients were once highly motivated people. I know them. I talk to them online everyday. They've told me of their careers, their marriages, their families, the things they use to love to do. Some of them have lost everything. They didn't choose to get fibromyalgia or to become disabled. Nor are they lazy or simply unable to deal with the aches and pains of everyday life. Many of them feel as if fibromyalgia has robbed them of their lives and happiness. It's not unusual for a women with fibromyalgia to end up divorced because her spouse may not understand or be able to tolerate the changes in their lives.
My journey with fibromyalgia began a long time ago in the winter of 1995. I'd just recovered from the worst flu of my life. It was a three-week-long virus that left me weak and thin. But when my fever broke the aching never went away, and I began to have trouble sleeping. Back then I didn't notice the pain very much during the day. But when I tried to fall asleep at night, especially on those cold, stormy winter nights, the weight of my body against my bed made me ache and burn all over.
At the time I was working as an administrative assistant, and there were days when it was difficult to pull myself out of bed in the morning to work an eight-hour day. I'd drag myself home each night feeling exhausted and wondering why I had so little energy. But in the summer of 2007 the intensity of my symptoms exploded after recovering from a serious intestinal infection called C. Diff.
What had once been only an uncomfortable annoyance on cold, winter nights, now seemed like a monster that had crawled inside my body, attacking every joint, muscle and nerve fiber. The pain is difficult to describe, but if you've ever had labor pain, especially back labor, then you have an idea of the type of pain I'm talking about. Back then a good day was a six or below. But during the worst months of my disease I averaged an eight most days.
I remember feeling relieved in 2008 when I was finally diagnosed with fibromyalgia. Until that day I hadn't realized how much I feared those around me might be thinking I was a hypochondriac. To have an actual diagnosis also brought me a sense of hope. I could research fibromyalgia, find out what caused it and maybe how to lessen the symptoms, right? Unfortunately, is wasn't that easy. What the major medical institutions, and my doctor, had to say about fibromyalgia was not at all uplifting: "No one knows what causes fibromyalgia and there is no cure."
That was difficult for me to hear. I couldn't imagine feeling this way for the rest of my life, or the possibility that I might have to be on pain killers while raising my daughter. To accept that I could never get better was not something I could do.
Depression can be as difficult to deal with as the physical pain of fibromyalgia. I never understood true clinical depression until I experienced it. I knew there was something out of balance. I tried two different antidepressants and had bad reactions to both. After more research I ended up taking the amino acid 5-htp. 5-htp is the precursor to serotonin. Certain types of antidepressants work by conserving serotonin, so my plan was to provide my brain with more of the raw material to make its own serotonin. 5-htp ended up helping my depression and also helping me sleep better. One important note is that 5-htp should not be taken if a person is also taking a prescription antidepressant as it could cause a life-threatening condition called serotonin syndrome.
5-htp also became my first proof that I could improve my symptoms of fibromyalgia without prescription drugs. But I knew it was the tip of the iceberg. There were so many other symptoms to deal with. Next I researched restless leg syndrome (RLS) and found that many people with fibromyalgia are deficient in magnesium. Magnesium is a precursor to dopamine, and people with RLS are known to have low levels of dopamine. Increasing my magnesium, especially just before bedtime, took care of my RLS. Another victory, and more confidence!
The Physical Medicine Doctor who diagnosed me prescribed Lyrica and sent me on my way. She said most of her patients did very well on Lyrica. I hadn't intended on taking it because I've never liked the idea of taking any kind of drug, prescription or otherwise, but dealing with the pain of fibromyalgia on a daily basis made me reconsider. In an effort to remain hopeful I compromised. I decided I would take Lyrica, but only while researching alternative cures. Perhaps there were others out there with fibromyalgia who'd found some miracle herb or vitamin that could help.
I'd like to encourage anyone with fibromyalgia to join an online support group; just be sure they are supportive. There are some I know of I would highly recommend. But ironically, my first foray into an online support group was not, at least in the beginning, a positive experience.
I watched in horror as the support group old-timers welcomed each newbie by telling them that it was important for them to accept that their lives would never be the same, and they were encouraged to grieve. They were also encouraged to accept that there was no cure for fibromyalgia, only drugs that might assuage their symptoms. Were the old timers moles for Big Pharma, discouraging or even attacking anyone who might stray from the herd? For a while I contemplated leaving the group. Instead, I stopped reading the digest for several months.
In late spring of 2009 while scanning my email I absentmindedly opened that old fibromyalgia support group digest, and there at the bottom of the page was a post that would be my first glimmer of hope to quell the pain of fibromyalgia. The poster spoke of a non-toxic, inexpensive, generic drug called Low Dose Naltrexone (LDN), and how much better her pain level and other symptoms had been since she began taking LDN some months back. It wasn't exactly alternative, but it wasn't a pain killer either. This was something completely different! I quickly researched LDN and found, to my great fortune, that there was an open clinical trial at nearby Stanford University. Within a month I was enrolled in the Stanford Phase II LDN for Fibromyalgia Clinical Trial, and two weeks later my pain, depression and exhaustion began to go away.
I can say with confidence that LDN brought me about seventy-five-percent back to normal. I was able to do more than I'd done in years. I spent more time with my daughter, did more cooking and household chores, and generally felt like a happier person. But I wanted more. I wanted to feel completely well. And as Dr. McCandless, who owns one of the LDN online support groups, says, "Seldom is LDN a standalone treatment". Though I was beyond thankful that LDN had given me so much of my life back, I understood there would have to be more to my solution. So on I went.
By now it was the fall of 2009. The intestinal infection I'd had two years earlier had left me with malabsorption, causing vitamin and mineral deficiencies, and I realized that, even with LDN, some foods could still trigger a fibromyalgia flare. After careful analysis I identified my food triggers, but I was left nervously wondering, What CAN I eat, and how can I heal my gut? At 5'6" I weighed only 100 lbs. Going gluten and dairy free helped, for a while. But it wasn't the complete answer.
Fortunately I came across a website called "Stop the Thyroid Madness", and upon reading the symptoms of hypothyroidism I was stunned to discover they were identical to the symptoms of fibromyalgia. Could it be that I never had fibromyalgia at all, but only undiagnosed hypothyroidism? I went to a new doctor, a doctor of osteopathy, and he explained very thoroughly why I was most definitely hypothyroid, even though one doctor and two endocrinologists had insisted that my thyroid was fine. He prescribed a compounded, time-released T3 (T3 is the active thyroid hormone). After a few weeks of taking T3 I felt something I hadn't felt in years. I felt well. There was a relaxed feeling deep inside my body that I recognized as inner-healing. I began sleeping deeply and dreaming again. I woke refreshed and happy. My depression, anxiety, pain, fatigue and even my stomach problems, were gone. I was able to eat things I hadn't been able to tolerate in years. And to celebrate our good fortune my husband and I took a ten day trip to Hawaii in the summer of 2010.
I'm not suggesting that everyone with a diagnosis of fibromyalgia actually has undiagnosed hypothyroidism, but I am saying that, to a large degree, this was true for me. And I could have avoided years of pain and discomfort if I'd had a doctor who really understood how to diagnose hypothyroidism. I think it's extremely important for anyone who's been diagnosed with fibromyalgia to at least eliminate the possibility by checking out the "Stop the Thyroid Madness" website and get the recommended labwork. There's also a page on how to find a good doctor.
It's true that my life has never been the same since my diagnosis of fibromyalgia. I'm a different person now; a person who understands other people's pain, and therefore can have more compassion. And I've befriended more than a few online heroes; ordinary people doing extraordinary things to help other people they don't even know. There are my friends at LDNNow who work tirelessly in the UK to get signatures so that the British government will pay for LDN clinical trials. Another of my online friend keeps an LDN-prescribing-doctors-list by location so she can help anyone who's having trouble finding a doctor who prescribes LDN.
Medical marijuana can also help ease the pain for those on the road to recovery. There are some very effective non-psychoactive strains that help tremendously. Cannabidiol (CBD), is one of the many Cannabinoids in Marijuana. CBD is a non-psychoactive substance that quells the nerve pain of fibromyalgia but won't leave you feeling "stoned". A good way to reap the benefits of CBD is to find a strain of Marijuana that is higher in CBD than THC so you won't feel high. There is one I know of called Harlequin. CBD is also good for all kinds of IBS so ingesting the oil of a high CBD plant would help that as well. If you live in a state with medical marijuana laws you can find a strain of marijuana with high CBD by googling "high CBD strains", or call your local dispensary and ask if they carry these strains. Many of them will list their high CBD strains on their websites.
If you don't feel comfortable using marijuana, or don't live in a state that allows medical marijuana, a good alternative, and my favorite solution to stop the pain, is an anti-inflammatory herb called Boswellia: Boswellia for Fibromyalgia Take two Boswellia pills three times a day with meals. Swanson Vitamins is a good resource for Boswellia: Swanson Boswellia NOTE: Boswellia takes eight weeks to start working, so don't give up early.
Tweet
If you've been diagnosed with fibromyalgia, think that you may have it, or know someone who does, please leave a comment below.
Helpful Tips:
Have blood tests done to check for vitamin, mineral, amino acid deficiencies and hormonal imbalances. Give your body what it needs while you're healing from fibromyalgia. Malabsorption, which is a very common problem for people with fibromyalgia, may be depriving you of the vitamins, minerals and amino acids your organs need to stay healthy. That deprivation may be causing many of your fibromyalgia symptoms. Knowing what vitamins, minerals and amino acids you're low in and taking those supplements can help your body achieve a more healthy balance.
- Common deficiencies are: The B vitamins, vitamin C, beta carotene, zinc, selenium, D3, CO-Q10, DHEA, magnesium, calcium, iron, amino acids (especially those of taurine, alanine, tyrosine, valine, methionine, phenylalanine, and threonine).
Don't believe your doctor if he/she tells you there's no cure for fibromyalgia. There are people out there who've gotten better. Find those people online and ask for their advice. Genuine fibromyalgia survivors won't try to sell you anything and will be happy to share their stories with others who might be helped by their experience.
Helpful Online Support Groups
Helpful Links
