15 thoughts on “Things That Plague Us: Fibromyalgia”
Bobbi
Wow, Wendy, I had to double check to make sure I hadn’t wrote your post. We could be TWINS. Endometriosis, MTHFR, fatigue and extreme body pain and fog. I even have extreme sleep apnea, burning feet and swollen tongue. I too have found the medical profession a complete failure. I do have a few more in my hand though: plantar fasciitis, sesamoiditis, fallen arches, supination, extreme Enviornmental asthma after mould exposure, hernias, and my latest creation were two intestinal polyps the size of duck eggs.
I went and got the genetic testing at 23andMe, moved it onto LiveWellO, worked with a naturopath here in BC (Canada), but the issue for me is I keep getting sick and falling off my program. Back into the fog of dragging an exhausted brain dead body through a busy work day. So I am sick pretty much all the time with something – bronchitis is my favourite. During and since (2 years now), I typically get up in the morning, take the CPAP mask off and start my asthma attack. Not by choice. It is an allergic reactive productive horrible coughing attack that results in typically two of three things: Me and the immediate area are covered in asthma slime, I cough so hard I vomit – and just for fun pee myself too. I then typically see stars and look for my ventolin inhailer. Wondering if anyone else has had a). mould exposure and are MTHFR. and or b) has ever been diagnosed with aspergalus asthma.?
Hi Breanne, I have the same issue! Was exposed to both for the last 7 years and was diagnosed with fibromyalgia 3 years ago. Has anything worked for you?
Hello Andrea,
I love your articles! I was diagnosed with compound heterozygous C677T/A1298C a little over a year ago, and I am starting to get really frustrated with the my doctors lack of information and support. Everything I have researched about the condition, my doctor tells me the opposite. I am desperately looking to find another specialist that can steer me in the right direction–do you know what I should be searching for in order to find the help I need in my area? Thank you so much!
Despite being in a long pursuit of health I was a mess (fibromyalgia,restless legs, severe sleep apnea, I could go on) before I got genetic testing ( I have MTHFR) after an IgG test by food-allergy.com lab of Maine – indicated 13 food sensitivities +. I have limited my diet to gluten-free, corn-free, foods that I feel “well” after eating, & which did not react to ( I kept a food diary & used the results of the test as well as paying deep attention to my response to foods, which I had been taught to ignore ( “you’re too finicky” – when in fact my stomach would hurt or my throat & tongue would swell up or I would bloat up & feel groggy/confused…) Much of what I learned about eating was that we are not seeing the obvious – we are force-feeding ourselves foods that do not agree with us. I have gradually come around to eating only eat organic produce, non-gmo, and wild meats(my brother hunts), and I do it with certainty & conviction. It makes a difference. Back to the issue of MTHFR: I was severely anemic for years & had horrible endometriosis, ovarian cysts & multiple fibroids. (Lupron(chemo)to shrink because inoperable)
I have both the A and C mutations for MTHFR. I supplement with Methylguard, per my integrated medicine clinic practitioner, and then I added some supplements due to my own research: betaine, molybdenum, selenium,…and I take the D-Ribose powder with Magnesium “Calm” product, mix both those in water and drink gradually over the day, and I take liquid D drops. I am currently curious about another gene I’ll likely be tested for ( & find out I have): the SUOX gene.I suspect I have it because I cannot tolerate sulfite preservatives, they make my tongue swell, but it doesn’t come up on an allergy test (nothing does!) My tongue has been chronically swollen to the point of extreme sleep apnea most of the time ( 2 sleep studies, C-pap machine but couldn’t tolerate it) & therefore trying a low sulpher diet; eliminating some of the higher sulphur foods like too much of the cruciferous veggies. I added in more squashes & green juices(cuke/kale/parsley, etc.)and am very happy because I think it’s working! The other change is I did my 3rd guided detox diets for a week at a time, because I have high heavy metals( lead,mercury & tin) and those detox weeks have each shifted my health to a better place. I teach yoga 5 times a week, have survived stage 4 endometriosis, and have also survived being called a hypochondriac for decades, as well as depression. My biggest help was the MTHFR diagnosis, the compassionate care leading up to this(at an integrated medicine clinic where my provider communicated with naturopaths who were familiar with MTHFR, as well as chinese medicine, and basically everyone who believed me and/or listened sensitively. Just because the answers are a long time coming….well it’s all the more reason to NEED to hear “I believe you.” But also I have been suspecting the swollen tongue was the key to a lot of this forever, and nobody knew what to do. If I can use an online search engine, why can’t my provider. Just saying.
Thanks so much for sharing your journey here, Wendy. Sounds like you have really come a long way! I agree with you that it’s really frustrating when we seem to know more than our practitioners. I am optimistic that this is changing, at least among some practitioners, although too slow for most people’s needs.
I actually had just made an appointment with someone from Dr. Ben Lynch’s site right before you posted this. Someone that had just attended his most recent conference. There are not many options here in Ohio. My NP is working a little with me but not much. I have gotten back to about 75% but seem to be stuck here. I’ll keep working at it. That’s what I do! Have a great day!
Can my primary care test my blood for mthfr? If not please tell me of a doctor in the memphis or surrounding areas that can. I went to a hemotologist/oncologist in September of 2014 as they thought I had CML. $9,000 in debt later from genetic testing I’m negative for CML told unsure but it’s just fibro. I have swollen tongue, thick silvia on tongue, rash by joints on my body, breakouts and rashes by mouth, and severe IBS and swelling and CFS.
Yes, he or she can, Stephanie…but a cheaper way would probably be to do 23 and Me depending on whether the doc can get the test covered by insurance…plus you get information about other relevant SNPs
I just completed a 23andme and wonder how I would look for this mutation? My son and I have all of these symptoms and issues, however, I am just finding this information. I don’t know where to begin?
I am not a doctor and THIS BLOG DOES NOT PROVIDE MEDICAL ADVICE. This site is about my own healing journey. If you know or believe that you have a MTHFR mutation, hypothyroidism or other health problems, please get yourself tested and find a doctor or natural health practitioner who is willing to help you find the root cause and develop a personalized treatment plan for your particular body. This site is provided for informational purposes only, and the content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider for answers to any questions you may have regarding a medical or health related condition. The content here is not intended to be relied upon for medical diagnosis or treatment. Always consult a health professional before making dramatic changes to your diet or lifestyle and before taking supplements. You are ultimately responsible for your own health. Reliance on this website and its content is solely at your own risk.
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Bobbi
Wow, Wendy, I had to double check to make sure I hadn’t wrote your post. We could be TWINS. Endometriosis, MTHFR, fatigue and extreme body pain and fog. I even have extreme sleep apnea, burning feet and swollen tongue. I too have found the medical profession a complete failure. I do have a few more in my hand though: plantar fasciitis, sesamoiditis, fallen arches, supination, extreme Enviornmental asthma after mould exposure, hernias, and my latest creation were two intestinal polyps the size of duck eggs.
I went and got the genetic testing at 23andMe, moved it onto LiveWellO, worked with a naturopath here in BC (Canada), but the issue for me is I keep getting sick and falling off my program. Back into the fog of dragging an exhausted brain dead body through a busy work day. So I am sick pretty much all the time with something – bronchitis is my favourite. During and since (2 years now), I typically get up in the morning, take the CPAP mask off and start my asthma attack. Not by choice. It is an allergic reactive productive horrible coughing attack that results in typically two of three things: Me and the immediate area are covered in asthma slime, I cough so hard I vomit – and just for fun pee myself too. I then typically see stars and look for my ventolin inhailer. Wondering if anyone else has had a). mould exposure and are MTHFR. and or b) has ever been diagnosed with aspergalus asthma.?
If so – would love to hear your story.
Breanne
I have had stachybotrys and aspergillus mold exposure and have terrible fibromyalgia
Melissa
Hi Breanne, I have the same issue! Was exposed to both for the last 7 years and was diagnosed with fibromyalgia 3 years ago. Has anything worked for you?
Katherine
Hello Andrea,
I love your articles! I was diagnosed with compound heterozygous C677T/A1298C a little over a year ago, and I am starting to get really frustrated with the my doctors lack of information and support. Everything I have researched about the condition, my doctor tells me the opposite. I am desperately looking to find another specialist that can steer me in the right direction–do you know what I should be searching for in order to find the help I need in my area? Thank you so much!
Andrea Post author
Hi Katherine – doctors lists:
http://www.methyl-nation.com/p/doctor-referrals-by-state.html
http://mthfr.net/mthfr-resources/
Wendy
Despite being in a long pursuit of health I was a mess (fibromyalgia,restless legs, severe sleep apnea, I could go on) before I got genetic testing ( I have MTHFR) after an IgG test by food-allergy.com lab of Maine – indicated 13 food sensitivities +. I have limited my diet to gluten-free, corn-free, foods that I feel “well” after eating, & which did not react to ( I kept a food diary & used the results of the test as well as paying deep attention to my response to foods, which I had been taught to ignore ( “you’re too finicky” – when in fact my stomach would hurt or my throat & tongue would swell up or I would bloat up & feel groggy/confused…) Much of what I learned about eating was that we are not seeing the obvious – we are force-feeding ourselves foods that do not agree with us. I have gradually come around to eating only eat organic produce, non-gmo, and wild meats(my brother hunts), and I do it with certainty & conviction. It makes a difference. Back to the issue of MTHFR: I was severely anemic for years & had horrible endometriosis, ovarian cysts & multiple fibroids. (Lupron(chemo)to shrink because inoperable)
I have both the A and C mutations for MTHFR. I supplement with Methylguard, per my integrated medicine clinic practitioner, and then I added some supplements due to my own research: betaine, molybdenum, selenium,…and I take the D-Ribose powder with Magnesium “Calm” product, mix both those in water and drink gradually over the day, and I take liquid D drops. I am currently curious about another gene I’ll likely be tested for ( & find out I have): the SUOX gene.I suspect I have it because I cannot tolerate sulfite preservatives, they make my tongue swell, but it doesn’t come up on an allergy test (nothing does!) My tongue has been chronically swollen to the point of extreme sleep apnea most of the time ( 2 sleep studies, C-pap machine but couldn’t tolerate it) & therefore trying a low sulpher diet; eliminating some of the higher sulphur foods like too much of the cruciferous veggies. I added in more squashes & green juices(cuke/kale/parsley, etc.)and am very happy because I think it’s working! The other change is I did my 3rd guided detox diets for a week at a time, because I have high heavy metals( lead,mercury & tin) and those detox weeks have each shifted my health to a better place. I teach yoga 5 times a week, have survived stage 4 endometriosis, and have also survived being called a hypochondriac for decades, as well as depression. My biggest help was the MTHFR diagnosis, the compassionate care leading up to this(at an integrated medicine clinic where my provider communicated with naturopaths who were familiar with MTHFR, as well as chinese medicine, and basically everyone who believed me and/or listened sensitively. Just because the answers are a long time coming….well it’s all the more reason to NEED to hear “I believe you.” But also I have been suspecting the swollen tongue was the key to a lot of this forever, and nobody knew what to do. If I can use an online search engine, why can’t my provider. Just saying.
Andrea Post author
Thanks so much for sharing your journey here, Wendy. Sounds like you have really come a long way! I agree with you that it’s really frustrating when we seem to know more than our practitioners. I am optimistic that this is changing, at least among some practitioners, although too slow for most people’s needs.
Kris
Fabulous article! I’m still trying to find a doctor to help me with everything taking the non traditional route. Keep up the great work.
Andrea Post author
Thanks so much, Kris – if you need some help finding a doctor, I have a few databases and lists linked to on the resources page. Good luck!
Kris
I actually had just made an appointment with someone from Dr. Ben Lynch’s site right before you posted this. Someone that had just attended his most recent conference. There are not many options here in Ohio. My NP is working a little with me but not much. I have gotten back to about 75% but seem to be stuck here. I’ll keep working at it. That’s what I do! Have a great day!
Andrea Post author
Good luck, Kris – hope you get to 100% really soon =)
Stephanie Marx
Can my primary care test my blood for mthfr? If not please tell me of a doctor in the memphis or surrounding areas that can. I went to a hemotologist/oncologist in September of 2014 as they thought I had CML. $9,000 in debt later from genetic testing I’m negative for CML told unsure but it’s just fibro. I have swollen tongue, thick silvia on tongue, rash by joints on my body, breakouts and rashes by mouth, and severe IBS and swelling and CFS.
Andrea Post author
Yes, he or she can, Stephanie…but a cheaper way would probably be to do 23 and Me depending on whether the doc can get the test covered by insurance…plus you get information about other relevant SNPs
Kim
I just completed a 23andme and wonder how I would look for this mutation? My son and I have all of these symptoms and issues, however, I am just finding this information. I don’t know where to begin?
Andrea Post author
You have to download your raw data https://www.23andme.com/you/download
Then upload it to a third party application to get your health data – please see this article