Fibromyalgia - What is the root cause?
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Joy, how is the gluten free working out? My husband and I are going to try to get started in that direction. Are there good recipes somewhere out there in cyberspace??lol Someone just told us she went"clean" and after 6 weeks, feels like a new person, and has very little pain!!!!! You think?????0
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I have to say I just had a rude awakening. Somehow I was doing a more strenuous exercise without the stiffening side effects. I thought maybe because of the diet change. But due to a hetic week, I fudged some on my diet. I am having an issue with my left hip, leg, knee due to overuse in a harder exercise schedule. (I kind of thought I was normal for a bit due to the improved symptoms and tried to exercise like I used to.) But disregarding the new problem, I woke today in terrible pain and stiffness. I think it is because of having bread two days and sugar yesterday. It really makes me think the white stuff makes me worse. I guess it is new incentive to stay off it. My initial diet change was for weight loss. From my experience, I would say try it and see if it helps you.
Oh yes, Recipies, Mark's daily apple site. Almost any recipie site has some low carb Recipies you can look at. The South Beach Diet quick and Easy CookBook is good. I am a southern girl. If you like comfort food with no carbs, there is a cookbook called "500 Low-Carb Recipies" by Dana Carpender that is good. She does't cut the fat but you can tweak that too. Good luck! Let me know how it goes!0 -
THAT IS REALLY INTERESTING, AND MORE AND MORE, I AM CONVINCED GETTING RID OF THE WHITES IS THE WAT TO GO. WE ARE SLOWLY WEANING OUR WAY INTO IT. HAHA, I DON'T WANT TO SHOCK OUR SYSTEMS BY CUTTING EVERYTHING OUT ALL AT ONCE!! THANKS FOR THE RECIPE SITES, I WILL CHECK THEM OUT. HOPE YOU FEEL BETTER,JOYFUL.0
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My thoughts are:
- We're born either with it or predisposed to it. It may have a genetic factor, as well, as I believe my biological father has it.
- It may have something to do with early/extensive antibiotic usage.
- It may have something to do with the chicken pox virus. I had a pretty severe case when I was about 14. I've had obvious fibro symptoms since I was 15/16.
- It may have something to do with environmental pollutants/ sensitivity to chemicals, mercury (old silver fillings), etc. I grew up next to an open sewer and our water well was within about 300 feet of the sewer. I've always wondered if this had something to do with causing/triggering my fibro. My cousin, who grew up beside me, also has fibro.0 -
BrendaLee -
Interesting observations. I have never heard of any of those besides the genetic theory. My sister has MS and I believe FM which is obviously dwarfed by the MS. So any environmental impacts we would be equally exposed. I never had a significant chicken pox -- it was extremely mild and worse I never had it.
Another weird that I don't know matter or not, is when I was young, both my sister and I had weird bumpy arms for many years. Essentially looked sort of like "goose bumps" when you get a chill, but we had them all the time. Makes me think if we were both exposed to something. I always thought we were both deficient in some vitamin or something. Never quite figure that out.
What I do know, is I was raised on Tab and then Diet Coke. I know that pop impacts me. Probably not good that I was addicted to Tab before I was six years old. It was a different time. My kids only get coke on special occasions or sometimes eating out which isnt too often.0 -
I don't think we had much soda in the house growing up and definitely not diet soda.0
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My fibromyalgia becomes severe if I have even one diet drink. Anything with Aspartame or any other synethic sugar is like poison to my body. Also stress is a huge trigger for me.
I'm editing to say that my medical history is kind of interesting. At 3 weeks I survived spinal menigitus with no severe side effects. However, my doctor and I came to the conclusion that it did damage to the area of the brain that controls hormones. I started going through puberty at 4 years old. By 12 years old I had severe signs and symptoms of PCOS, by 14 signs of insulin resistance, anxiety, depression. I really think all of this has played a part in my FM. My grandmother suffered from a painful and dibilatating inflammatory disease that they never really diagnosed. She also lived with lukemia for nearly 20 years. Right now my sister is having the same issues. What seems to be a severe form of FM, possible RA or Lupus. They can't seem to figure it out but she is 25 and it's very dibilitating at this point. Interestingly she has gone through a very abusive marriage and divorice and the symptoms started after the stress of all of that began. My grandmother was also a highly stressed woman. I think stress and anxiety may be a huge source of FM.0 -
I started having severe pain about two years ago. My back was always in bad shape. No doctor seemed to believe me or wanted to help. I decided to try one more doctor before i would have gone to the mayo clinic. He took an xray of my back and said i had very bad lower back compression. He referred me to a pain clinic who did some further work with me. I had a compression fracture at t 12 and other pain that was not accounted for. It always felt like i was going to get the flu, ache so bad. They put me on Savella and lyrica which helped a lot but didnt do anything for my severe back pain. They finally gave me Nucynta which has been a Godsend. I can function and work, and didnt have to go on disability. Every day I get up is a small victory for me! Im just now feeling well enough to get back to the gym and start working out. I gained so much weight during this little fiasco! Now I have hope.0
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My fibromyalgia becomes severe if I have even one diet drink. Anything with Aspartame or any other synethic sugar is like poison to my body. Also stress is a huge trigger for me.
I'm editing to say that my medical history is kind of interesting. At 3 weeks I survived spinal menigitus with no severe side effects. However, my doctor and I came to the conclusion that it did damage to the area of the brain that controls hormones. I started going through puberty at 4 years old. By 12 years old I had severe signs and symptoms of PCOS, by 14 signs of insulin resistance, anxiety, depression. I really think all of this has played a part in my FM. My grandmother suffered from a painful and dibilatating inflammatory disease that they never really diagnosed. She also lived with lukemia for nearly 20 years. Right now my sister is having the same issues. What seems to be a severe form of FM, possible RA or Lupus. They can't seem to figure it out but she is 25 and it's very dibilitating at this point. Interestingly she has gone through a very abusive marriage and divorice and the symptoms started after the stress of all of that began. My grandmother was also a highly stressed woman. I think stress and anxiety may be a huge source of FM.
I wanted to say that stress is a major trigger for me too. I kicked out my no good boyfriend and my pain lvls dropped down to half. I have my bad days of course but wow what a difference!!0 -
Mine started after a car accident
I was 8 1/2 months pregnant at the time. 0 -
American's have highly stressful lives.Those of us who work are usually over worked. Why can't we have siesta's here!0
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My fibromyalgia becomes severe if I have even one diet drink. Anything with Aspartame or any other synethic sugar is like poison to my body. Also stress is a huge trigger for me.
I'm editing to say that my medical history is kind of interesting. At 3 weeks I survived spinal menigitus with no severe side effects. However, my doctor and I came to the conclusion that it did damage to the area of the brain that controls hormones. I started going through puberty at 4 years old. By 12 years old I had severe signs and symptoms of PCOS, by 14 signs of insulin resistance, anxiety, depression. I really think all of this has played a part in my FM. My grandmother suffered from a painful and dibilatating inflammatory disease that they never really diagnosed. She also lived with lukemia for nearly 20 years. Right now my sister is having the same issues. What seems to be a severe form of FM, possible RA or Lupus. They can't seem to figure it out but she is 25 and it's very dibilitating at this point. Interestingly she has gone through a very abusive marriage and divorice and the symptoms started after the stress of all of that began. My grandmother was also a highly stressed woman. I think stress and anxiety may be a huge source of FM.
I wanted to say that stress is a major trigger for me too. I kicked out my no good boyfriend and my pain lvls dropped down to half. I have my bad days of course but wow what a difference!!
Good for you!0 -
I think it has a variety of causes and that if someone is predisposed to it events or environment can trigger it's manifestation. Inflammation is probably involved too.
I was never a high energy person and I can remember shooting pains in my legs and feet as a child. Things started going downhill when my horse hit me in the chin hard with his head.
My husband, children and I all had ADD. My youngest has Aspberger's. He and my husband have essential tremor and I am afraid my middle son is showing signs of middle son. My middle son was just diagnosed with IBS just like me.0 -
I dont know
I ve dealing with this disease since I was in my teens. I'm now 24 and tired of hearing that I have one of the worst cases my docs have seen.
Having read through the responses here nothing strikes a chord with me.
I have no clue.0 -
Years of mental and physical abuse, then later car accidents made it much worse0
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i've had episodic pain as long as i can remember: started with "growing pains" in my ankles at age 6. it was an occasional problem until i hit my early twenties. i'm not sure exactly what caused it to blow up and go nuclear like it did--only thing i can i think is it might have been exacerbated by a really hard fall i took off my board (not quite as traumatic as a car accident but similar).0
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@gavians I don't know the root cause. No one does. Some think it's overactive nerves. I think it's a mixture of stress, poor nutrition, additives in food (preservatives, hormones, etc), and stress in our environment. Including overuse of computers, tv, iphones. We weren't made to sit in one position and stare at things for so long. We were made to work the fields and hunt walk far distances. Part of it I'm sure is evolutionary. When I'm feeling super conspiracy-theory-esque I think it's air waves too from micro to cellular from tv to radio, etc.
Anyway what I do know is that diet and exercise definitely help. And lots of stretching. I've lost overall 60 pounds, but I still feel a ton of pain and tension. So. I know it's not weight loss and diet alone.
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@jillrobin82 - I agree it isn't just wait. When I was heavier that is what most people just figured. But I discovered fibro about a year after losing 70 pounds and was in the best shape of my life running over 20 miles per week and lighting weights 3x per week and was eating like a champ. I was doing nothing wrong for my health.. then suddenly I couldn't lift weights, then suddenly, I could only make it running for like 3 minutes before I could barely walk. So absolutely not, weight doesn't cause fibro -- but it sure does aggravate I am sure. In my case the fibro was a primary reason for the weight gain. Now I fight despite and am finally winning the war!0
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@gavians It's a reminder to me to keep my life balanced.0
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being in an emotionally abusive environment for many years as a child was undoubtedly the cause for me.0
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@jillrobin82 - I agree it isn't just wait. When I was heavier that is what most people just figured. But I discovered fibro about a year after losing 70 pounds and was in the best shape of my life running over 20 miles per week and lighting weights 3x per week and was eating like a champ. I was doing nothing wrong for my health.. then suddenly I couldn't lift weights, then suddenly, I could only make it running for like 3 minutes before I could barely walk. So absolutely not, weight doesn't cause fibro -- but it sure does aggravate I am sure. In my case the fibro was a primary reason for the weight gain. Now I fight despite and am finally winning the war!
Sort of a similar situation for me...in that I had been a Fitness Instructor, and Physical Rehabilitation Assistant for over 25 years - never overweight and never watched my diet although I did eat fairly clean without a lot of processed food.
Then in 2010 I got extremely sick with a serious lung infection after working at the Olympics in Whistler. When I finally recovered from the illness I was in full blown Fibromyalgia mode and after tons of tests was quickly diagnosed by my MD & Rheumie. I went from working out 5 hours a day with clients to not being able to walk 2 flat blocks. I am now managing my pain and energy levels and sleep with only natural supplements, without regular drugs.
I eat gluten free which has solved my IBS symptoms, my asthma, and most of my muscle attachment /joint pain. I take melatonin and cal/mag for sleep (I tried magnesium citrate and Glucosamine and MSM but those did not work for me). I also swear by Reishi mushroom extract daily 1/2 hr before breakfast for help with the energy pathway systems in my mitochondria. Only two brands work for me (my doc suggested I experiment to find out) and they are not the cheapest, but they probably have a better controlled level of active ingredient. Works wonders for my energy/fatigue levels. I sometimes have a bad day especially when stress levels are up (My brother died last year with a very rare auto immune disease similar to lupus and my folks are seniors with health issues and I am the only child/caregiver now) but I can handle it with heat, rest, massage, and Extra Strength Tylenol or Robaxacet if it's really bad.
Soooo, there's my story. Interestingly I have several extended family members who also have been diagnosed with FM after traumatic events like car accident and serious illnesses. I think our family is more prone to having a sensitive system and strange auto immune things seem to happen to our bodies because of it.0 -
Some new studies posted on Medscape (Health professionals continuing education site)
I'll copy & paste since you must be a member to read the abstracts.
QUOTE: Medscape Medical News > Conference News
Fibromyalgia Symptoms Respond to Parathyroidectomy, in Some
Miriam E. Tucker
May 01, 2014
BOSTON – For some patients diagnosed with fibromyalgia, parathyroidectomy may be the cure.
In a new study, nearly all patients with primary hyperparathyroidism (PHP) who had a preexisting diagnosis of fibromyalgia (FM) experienced improvement in their FM symptoms following parathyroid surgery, and 1 in 5 were able to drop all of their FM-related medications.
The finding suggests that a subset of patients diagnosed with FM actually have unrecognized PHP, which can be cured with surgery. The implication is that screening for the endocrine condition should be included as part of the FM workup, which it currently is not, Kelly L. McCoy, MD, assistant professor of surgery at the University of Pittsburgh, Pennsylvania, said here at the American Association of Endocrine Surgeons (AAES) 2013 Annual Meeting.
"Look for PHP before diagnosing FM. Even if they really do have FM, they may appreciate significant symptom relief and medication decrease after successful surgery," Dr. McCoy told Medscape Medical News.
Large Symptom Overlap Between 2 Conditions; Screen FM for PHP
Primary hyperparathyroidism, characterized by persistent hypercalcemia in the presence of an inappropriately elevated parathyroid hormone (PTH) level, occurs in up to 0.5% of the US population. Surgical treatment is usually successful.
Fibromyalgia, a poorly understood condition involving widespread musculoskeletal pain, occurs in 0.7% to 6% of the population. The treatment is medical, based on symptoms. The economic burden of FM is estimated at tens of thousands of dollars per patient, and up to a third of patients are unable to work, Dr. McCoy said.
The diagnostic confusion between PHP and FM arises because there is a large symptom overlap between the 2 conditions: in both, patients experience fatigue, musculoskeletal pain, headache, cognitive dysfunction, and mood disturbance. Both conditions are also far more common in women than in men, and both increase with age.
In a recent small study presented at the American College of Rheumatology (ACR) meeting in October 2013, unsuspected PHP was found in 10% of patients diagnosed with FM, in contrast to just 0.1% of the general population.
The current study looked at the connection from the endocrine surgery side: of 2184 patients treated for sporadic PHP, 4% (80) had a prior FM diagnosis.
AAES session moderator Mira Milas, MD, professor of surgery and director of endocrine surgery at Oregon Health & Science University, Portland, told Medscape Medical News that the data align with her experience.
"I completely agree with their findings. It is pretty much the uniform experience of all parathyroid surgeons that many patients who actually have primary hyperparathyroidism have been given a diagnosis of FM....The 4% prevalence found in this study is consistent with my experience. That's not a small number."
Dr. Milas, who was not involved in the study, said she also agrees with Dr. McCoy's call for PHP screening. "The impact of this paper is that it will be exceptionally important to reach out to primary-care doctors, to rheumatologists, and to fibromyalgia centers to present this information and experience and encourage them to do a screening. It's not widely appreciated."
Screening for PHP involves obtaining an initial serum calcium level. If the level is high, the patient then needs further lab work, including calcium, parathyroid hormone, vitamin D, and possibly 24-hour urine calcium levels. "It is very easy to screen for PHP," Dr. McCoy told Medscape Medical News.
Fibromyalgia Symptom Relief
In their study, Dr. McCoy and colleagues queried a prospectively maintained parathyroidectomy database to identify patients who had undergone the operation during 1995–2013. For the analysis, they included all patients who had biochemical confirmation of PHP, had been offered the surgery according to symptoms and published guidelines, and had a minimum of 6 months of follow-up.
Of the 80 total patients with a prior diagnosis of FM, complete data were available for 74. All were women, with a mean age of 61 years. The majority (55) had 3 or more FM/PHP symptoms. Half (53%) were taking anti-inflammatory drugs, 35% were on narcotics, 31% were taking fibromyalgia-specific drugs, and 28% were on antidepressants.
Compared with the 2110 patients with PHP only, the 74 with both FM and PHP were significantly more likely to have musculoskeletal symptoms (100% vs 54%), fatigue/depression (96% vs 57%), cognitive decline/memory loss (62% vs 31%), and headache (19% vs 10%).
Parathyroidectomy produced a durable PHP cure — defined as a normal serum calcium level at 6 months or longer postoperatively — in all but 1 (97%) of the PHP/FM patients.
Symptoms were assessed by the provider and by a standardized questionnaire beginning in 2011. Over a mean follow-up of 14 months (range, 6–57), 89% of the FM/PHP patients reported improvement in at least 1 symptom and 25% reported improvement in all 4 of the FM/PHP symptoms. Cognitive function was the most commonly improved symptom, reported by 80%, followed by fatigue in 71%, pain in 55%, and depressive symptoms in 39%.
As their symptoms improved, 84% of the patients stopped taking at least 1 medication, and 21% dropped all their FM/PHP medications. Anti-inflammatories were the most commonly dropped class of drugs, followed by narcotics, antidepressants, and FM-specific drugs.
A Proportion of FM Patients Could be Misdiagnosed
The 21% was "the most significant and somewhat surprising finding" of the study, Dr. McCoy said, leading the investigators to suspect that in those patients at least, the FM might have been a misdiagnosis and they actually had only PHP.
On the symptom questionnaire, 54% of the FM/PHP patients reported general wellness, and 57% noted improved quality of life following surgery (P = .01 for both).
Dr. Milas told Medscape Medical News, "The key take-home message is that all patients who are potentially diagnosed with FM or carry that diagnosis, wherever they are in their course of treatment, should be screened for parathyroid disease."
Dr. McCoy added that she is hoping to soon launch a multi-institutional study to expand on the preliminary findings reported at the ACR meeting, investigating the prevalence of PHP among patients seen at FM clinics around the country.
"These patients are labeled as sick, and they may have something that we can fix. I think it's really crucial to do a bigger study so we can get this out there."
Neither Dr. McCoy and colleagues nor Dr. Milas have disclosures.
American Association of Endocrine Surgeons 2014 Annual Meeting; April 29, 2014; Boston, Massachusetts. Abstract 38.
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