gryfalcon
Active member
- Joined
- Mar 24, 2016
- Messages
- 55
- Reason
- Caregiver
- Diagnosis
- 06/2011
- Country
- US
- State
- TX
I have no financial ties to any products mentioned here, and no association other than being a member, with any websites that I may mention. If I mention them, it is only because I, as a mother of a child diagnosed with Fibromyalgia, CRPS and CFS/ME, have found them to be helpful.
My daughter was diagnosed at age 11, but has had symptoms since she was an infant. After years of trial and error, I am writing to share what has worked for us, because I have made it this far from the knowledge shared by other Fibro warriors, and it is time to pay it forward.
What worked slightly from conventional medicine.
- Biofeedback and CBT. Helpful in adjusting to the illness, but once you’ve learned those skills, you’ve learned them. An occasional refresher might help in a stressful time.
What hasn’t worked. Conventional medicine has not worked at all. After trying for six years or more, we no longer go to a conventional doctor for this illness. We tried
- amitriptyline. might have calmed nerve pain slightly and slightly improved sleep but almost unnoticeable and caused severe weight gain. Benefits weren't worth the side effects.
- , neurontin, gabapentin, lyrica, etc. Caused depression, irritability, and severe nightmares (x-rated slasher dreams like a horror film), and suicidal ideation
- Allergy shots. no help, but on days of allergy shot it caused a flare, so it turned a good day into a bad day, and a bad day into a worse day.
- counselling was a waste of time, gas and money, and an aggravation. She didn't like it. It didn't help her, and in fact, the counselor caused conflicts within the family, by saying different things to different people.
- Ibuprofen, NSAIDS. These do nothing for the fibromyalgia. However, we do use them occasionally, after a hard workout, to help to reduce normal inflammation which can be amplified by fibro.
- opioids like hydrocodone do nothing. Typically, in fibromyalgia, opioid receptors do not function normally, and besides, much of fibromyalgia pain is neurological pain, and opioids don’t help with that. Doctors normally use neurotransmitter type drugs, like SSRI’s, SNRI’s, tricyclics, etc., for neuralogical pain.
We ended up in a horrible cycle of going to the doctor every six weeks, paying $550 an office visit, so that we could get homebound forms signed for the school, and then begging to have absence notes signed by the doctor, and having the doctor and school looking at her and seeing nothing apparently physically wrong because Fibro doesn’t show up on any tests, and accusing her of malingering, and accusing me of enabling. It was horrible. The treatments she got from the doctor made her worse, and the stress of going to the doctor made her worse. There is a saying, that the definition of insanity is to keep doing the same thing, expecting different results. So, we did something different.
I began to discover supplements and genetics. My daughter is now a member of the “handful club”. This is a slang term for people who need a large number of supplements in order to function like a normal person, who take handfuls of pills daily, just to keep going. There is only reason to spend all this money and take all those pills, and that is because IT WORKS.
In talking to other people with difficult to diagnose problems, we found a reference to MTHFR. I had my daughter tested, and found that she has a heterozygous (the milder form) of mutations at two SNPs on the MTHFR gene. This means that she is less efficient at methylating (converting) some vitamins from the dietary form, to the form used in the body, which is typically done by attaching a methyl group to the molecule. This means that she needs the “bioavailable” form of this vitamin, the methylated version, which is sold a L-5-MTHF. This is sometimes sold in combination with B12 (we have used a product called “active B12”) because this vitamin is needed to process B12, which is why many people with MTHFR may have high B12 levels, but actually be B12 deficient, because they have it, but cannot use it, so it builds up. This is a very common mutation, and I would suggest that anyone who believes they have fibromyalgia or CFS/ME should have it checked.
This discovery of the MTHFR mutation, and discovering many discussions of genetics and methylation on the Phoenix Rising site made me interested in genetics. I found a good overview of MTHFR on StopTheThyroidMadness, and that led me to get a 23andMe test, and to run methylation and detox reports on sites like geneticgenie, LiveWello and Promethease, and to analyze SNPs myself, reading research on the internet and then looking at specific SNPs in the 23andMe browser for the raw genetic data. Then I googled the SNPs and found discussions of them on the Phoenix Rising site. We began to try out supplements that other people were trying.
Meanwhile, my daughter started craving carrots and sweet potatoes. I started googling, and determined she was craving beta carotene, and with my newfound interest in genetics, started wondering which genes help convert beta carotene, and – lo and behold – discovered a mutation in the gene that converts beta carotene. So – I had her start taking first one, then two capsules of vitamin A daily. I also connect this to her severe acne and asthma, which tend to do better when she’s getting enough vitamin A.
I discovered that almost everyone with Fibro recommends certain supplements. My daughter takes these daily. When she does not, she begins to feel fatigued and sore, and this reminds her that she forgot to take them. We have discovered that multi-vitamins don’t seem to do much of anything, and so we take things separately. Some of her staples include –
- Natural Calm magnesium and minerals, a clear fizzy drink that comes in many flavors, which provides 4 grams of magnesium. We use the original flavor that is very lemony and drink it warm after it stops fizzing. It also comes in various flavors with sweeteners for people that prefer it.
- Perque, a powder mixed with warm water that provides 1.5 grams of vitamin C in a lemony tasting warm fizzy drink.
- Krill or Fish Oil she can get her hands on, about six capsules per day.
- Twinlabs Stress B vitamins. I’ve debated with her that it has folic acid, which MTHFR people should avoid, but it gives her a real energy boost.
- Several forms of B12 – methylcobalamin, cyanocobalamin, adenosylcobalamin. We use "Active B12" tablets which have L-5-MTHF in it. Also B12 patches.
- Co-Q10 or ubiquinol (a more bioavailable version of co-q10).
- MSM. We use huge jugs of MSM powder (sulfur). I run warm water into a gallon tea jug, and throw in a few black tea and green tea bags (or sometimes oolong instead of green tea). We serve it over ice, with fresh lemons and about a quarter tsp of MSM, and sip on it all day long.
- vitamin D3 daily, and if someone around her is sick, will take up to 50,000 daily (10 5,000 iu gelcaps) daily for up to a week. This helps us head off catching an illness, because she is sick twice as bad for twice as long than anyone else, if she does get sick. Another strategy when someone sick comes around is Wellness Formula.
– coconut oil. We keep tons of it on hand. She has learned that a spoonful can give her energy when she’s feeling sluggish. We also cook with it, instead of the oils we used to cook with.
- epsom salt baths
- arthritis rub from general dollar stores, that has alcohol, epsom salts and capsicum
- essential oils
She rotates through these...
- Kavinace and Travacor by neuroscience, that she rotates in occasionally. Kavinace helps with sleep
- turmeric
- adaptogens, such as holy basil, ashwaganda, ginseng and others.
- digestive enzymes
- L-carnitine
- NAC
- Niacin for the occasional flush which warms her, and also makes various muscle aches go away for a short time. Taking it with coconut oil or fish oil seems to make the flush come on more quickly.
- we found L-tryptophan and 5-htp don't seem to be very helpful. She tends to have very vivid dreams which interfere with sleep (abnormal sleep architecture is a hallmark for Fibro), and we found that L-tryptophan and 5HTP aggravate the dreaming problem and don’t really seem to help.
There's more. I just can't remember it all.
Dietary adjustments.
She varies her diet, and when feeling really bad, take a week to use one of several special diets she uses. This generally gives her a boost in energy.
- fruit smoothies, sometimes with a protein additive
- avoid wheat products, and possibly all grains, and milk products (casein) She doesn't always do this, but in general has reduced wheat and milk in her diet and
- brown rice and quinoa. If she feels really bad, she gets more serious about avoiding these.
- beans
- occasionally, she rotates through a diet where she avoids meat for about a week.
- focus on whole foods, and avoiding corn syrup, additives, etc
- dried apricots for snacks. Good alternative to candy or sweets
She’s not cured. But – the difference is AMAZING. And, if she stops taking these, her condition starts to deteriorate again. We call it the Toolbox. For every problem – fatigue, sensitivities, acne, blood pressure problems, temperature regulation problems, muscle aches, nerve pains (we call them The Pains – stabbing pains like a hot knife through the leg or the shoulder), and the hundred other symptoms she deals with daily – she has specific remedies that she turns to.
It’s definitely expensive. But, we have saved a great deal of time, gas, money and aggravation in useless doctor visits, so that makes up for some of it. We almost never buy things at a store, because it costs so much more if you don’t buy it online. By taking these supplements, she has gone from a situation in which one trip out for three hours, to take a standardized test for school, put her out of commission for a week – unable to do schoolwork, unable to even read, basically stuck in bed for a week, in the dark, with a blanket over her head (assuming the typical position for someone in a CFS/ME flare). Now, with supplements, she has been able to do more of her schoolwork, and also take on a job where she works shifts of up to 5-8 hours, up to four days a week, involving physical activity like carrying heavy things, walking fast or jogging back and forth for hours. That’s an AMAZING difference.
She also has syncope. If she gets out of a hot bath or shower and stands up, her blood pressure can fall abruptly causing greyouts or blackouts. However, warm baths with epsom salts are a great tool for muscle pain, and warm baths help you sweat, which helps detox and that’s big in someone who does not detox efficiently like my daughter. So, we have developed this trick. When she goes in for her bath, if she is concerned about syncope, she brings a vinyl beanbag chair in with her. When she gets out of the bath, she drops into the beanbag, and props her feet up, and lets herself adust for a few minutes, before trying to get up.
We tried low dose naltrexone (LDN), ordering it from Canada. It did not help much, but did provide an energy boost. However, it also disrupted sleep. I got concerned because I read a case report where a patient developed opioid resistance after using it long term. I recommend caution, but believe it can be helpful for some.
I hope this information helps someone. It is my way of paying it forward for all the Fibro veterans who shared their tips with me, when I was new to this and bewildered and very alone, with a child depending on me.
My daughter was diagnosed at age 11, but has had symptoms since she was an infant. After years of trial and error, I am writing to share what has worked for us, because I have made it this far from the knowledge shared by other Fibro warriors, and it is time to pay it forward.
What worked slightly from conventional medicine.
- Biofeedback and CBT. Helpful in adjusting to the illness, but once you’ve learned those skills, you’ve learned them. An occasional refresher might help in a stressful time.
What hasn’t worked. Conventional medicine has not worked at all. After trying for six years or more, we no longer go to a conventional doctor for this illness. We tried
- amitriptyline. might have calmed nerve pain slightly and slightly improved sleep but almost unnoticeable and caused severe weight gain. Benefits weren't worth the side effects.
- , neurontin, gabapentin, lyrica, etc. Caused depression, irritability, and severe nightmares (x-rated slasher dreams like a horror film), and suicidal ideation
- Allergy shots. no help, but on days of allergy shot it caused a flare, so it turned a good day into a bad day, and a bad day into a worse day.
- counselling was a waste of time, gas and money, and an aggravation. She didn't like it. It didn't help her, and in fact, the counselor caused conflicts within the family, by saying different things to different people.
- Ibuprofen, NSAIDS. These do nothing for the fibromyalgia. However, we do use them occasionally, after a hard workout, to help to reduce normal inflammation which can be amplified by fibro.
- opioids like hydrocodone do nothing. Typically, in fibromyalgia, opioid receptors do not function normally, and besides, much of fibromyalgia pain is neurological pain, and opioids don’t help with that. Doctors normally use neurotransmitter type drugs, like SSRI’s, SNRI’s, tricyclics, etc., for neuralogical pain.
We ended up in a horrible cycle of going to the doctor every six weeks, paying $550 an office visit, so that we could get homebound forms signed for the school, and then begging to have absence notes signed by the doctor, and having the doctor and school looking at her and seeing nothing apparently physically wrong because Fibro doesn’t show up on any tests, and accusing her of malingering, and accusing me of enabling. It was horrible. The treatments she got from the doctor made her worse, and the stress of going to the doctor made her worse. There is a saying, that the definition of insanity is to keep doing the same thing, expecting different results. So, we did something different.
I began to discover supplements and genetics. My daughter is now a member of the “handful club”. This is a slang term for people who need a large number of supplements in order to function like a normal person, who take handfuls of pills daily, just to keep going. There is only reason to spend all this money and take all those pills, and that is because IT WORKS.
In talking to other people with difficult to diagnose problems, we found a reference to MTHFR. I had my daughter tested, and found that she has a heterozygous (the milder form) of mutations at two SNPs on the MTHFR gene. This means that she is less efficient at methylating (converting) some vitamins from the dietary form, to the form used in the body, which is typically done by attaching a methyl group to the molecule. This means that she needs the “bioavailable” form of this vitamin, the methylated version, which is sold a L-5-MTHF. This is sometimes sold in combination with B12 (we have used a product called “active B12”) because this vitamin is needed to process B12, which is why many people with MTHFR may have high B12 levels, but actually be B12 deficient, because they have it, but cannot use it, so it builds up. This is a very common mutation, and I would suggest that anyone who believes they have fibromyalgia or CFS/ME should have it checked.
This discovery of the MTHFR mutation, and discovering many discussions of genetics and methylation on the Phoenix Rising site made me interested in genetics. I found a good overview of MTHFR on StopTheThyroidMadness, and that led me to get a 23andMe test, and to run methylation and detox reports on sites like geneticgenie, LiveWello and Promethease, and to analyze SNPs myself, reading research on the internet and then looking at specific SNPs in the 23andMe browser for the raw genetic data. Then I googled the SNPs and found discussions of them on the Phoenix Rising site. We began to try out supplements that other people were trying.
Meanwhile, my daughter started craving carrots and sweet potatoes. I started googling, and determined she was craving beta carotene, and with my newfound interest in genetics, started wondering which genes help convert beta carotene, and – lo and behold – discovered a mutation in the gene that converts beta carotene. So – I had her start taking first one, then two capsules of vitamin A daily. I also connect this to her severe acne and asthma, which tend to do better when she’s getting enough vitamin A.
I discovered that almost everyone with Fibro recommends certain supplements. My daughter takes these daily. When she does not, she begins to feel fatigued and sore, and this reminds her that she forgot to take them. We have discovered that multi-vitamins don’t seem to do much of anything, and so we take things separately. Some of her staples include –
- Natural Calm magnesium and minerals, a clear fizzy drink that comes in many flavors, which provides 4 grams of magnesium. We use the original flavor that is very lemony and drink it warm after it stops fizzing. It also comes in various flavors with sweeteners for people that prefer it.
- Perque, a powder mixed with warm water that provides 1.5 grams of vitamin C in a lemony tasting warm fizzy drink.
- Krill or Fish Oil she can get her hands on, about six capsules per day.
- Twinlabs Stress B vitamins. I’ve debated with her that it has folic acid, which MTHFR people should avoid, but it gives her a real energy boost.
- Several forms of B12 – methylcobalamin, cyanocobalamin, adenosylcobalamin. We use "Active B12" tablets which have L-5-MTHF in it. Also B12 patches.
- Co-Q10 or ubiquinol (a more bioavailable version of co-q10).
- MSM. We use huge jugs of MSM powder (sulfur). I run warm water into a gallon tea jug, and throw in a few black tea and green tea bags (or sometimes oolong instead of green tea). We serve it over ice, with fresh lemons and about a quarter tsp of MSM, and sip on it all day long.
- vitamin D3 daily, and if someone around her is sick, will take up to 50,000 daily (10 5,000 iu gelcaps) daily for up to a week. This helps us head off catching an illness, because she is sick twice as bad for twice as long than anyone else, if she does get sick. Another strategy when someone sick comes around is Wellness Formula.
– coconut oil. We keep tons of it on hand. She has learned that a spoonful can give her energy when she’s feeling sluggish. We also cook with it, instead of the oils we used to cook with.
- epsom salt baths
- arthritis rub from general dollar stores, that has alcohol, epsom salts and capsicum
- essential oils
She rotates through these...
- Kavinace and Travacor by neuroscience, that she rotates in occasionally. Kavinace helps with sleep
- turmeric
- adaptogens, such as holy basil, ashwaganda, ginseng and others.
- digestive enzymes
- L-carnitine
- NAC
- Niacin for the occasional flush which warms her, and also makes various muscle aches go away for a short time. Taking it with coconut oil or fish oil seems to make the flush come on more quickly.
- we found L-tryptophan and 5-htp don't seem to be very helpful. She tends to have very vivid dreams which interfere with sleep (abnormal sleep architecture is a hallmark for Fibro), and we found that L-tryptophan and 5HTP aggravate the dreaming problem and don’t really seem to help.
There's more. I just can't remember it all.
Dietary adjustments.
She varies her diet, and when feeling really bad, take a week to use one of several special diets she uses. This generally gives her a boost in energy.
- fruit smoothies, sometimes with a protein additive
- avoid wheat products, and possibly all grains, and milk products (casein) She doesn't always do this, but in general has reduced wheat and milk in her diet and
- brown rice and quinoa. If she feels really bad, she gets more serious about avoiding these.
- beans
- occasionally, she rotates through a diet where she avoids meat for about a week.
- focus on whole foods, and avoiding corn syrup, additives, etc
- dried apricots for snacks. Good alternative to candy or sweets
She’s not cured. But – the difference is AMAZING. And, if she stops taking these, her condition starts to deteriorate again. We call it the Toolbox. For every problem – fatigue, sensitivities, acne, blood pressure problems, temperature regulation problems, muscle aches, nerve pains (we call them The Pains – stabbing pains like a hot knife through the leg or the shoulder), and the hundred other symptoms she deals with daily – she has specific remedies that she turns to.
It’s definitely expensive. But, we have saved a great deal of time, gas, money and aggravation in useless doctor visits, so that makes up for some of it. We almost never buy things at a store, because it costs so much more if you don’t buy it online. By taking these supplements, she has gone from a situation in which one trip out for three hours, to take a standardized test for school, put her out of commission for a week – unable to do schoolwork, unable to even read, basically stuck in bed for a week, in the dark, with a blanket over her head (assuming the typical position for someone in a CFS/ME flare). Now, with supplements, she has been able to do more of her schoolwork, and also take on a job where she works shifts of up to 5-8 hours, up to four days a week, involving physical activity like carrying heavy things, walking fast or jogging back and forth for hours. That’s an AMAZING difference.
She also has syncope. If she gets out of a hot bath or shower and stands up, her blood pressure can fall abruptly causing greyouts or blackouts. However, warm baths with epsom salts are a great tool for muscle pain, and warm baths help you sweat, which helps detox and that’s big in someone who does not detox efficiently like my daughter. So, we have developed this trick. When she goes in for her bath, if she is concerned about syncope, she brings a vinyl beanbag chair in with her. When she gets out of the bath, she drops into the beanbag, and props her feet up, and lets herself adust for a few minutes, before trying to get up.
We tried low dose naltrexone (LDN), ordering it from Canada. It did not help much, but did provide an energy boost. However, it also disrupted sleep. I got concerned because I read a case report where a patient developed opioid resistance after using it long term. I recommend caution, but believe it can be helpful for some.
I hope this information helps someone. It is my way of paying it forward for all the Fibro veterans who shared their tips with me, when I was new to this and bewildered and very alone, with a child depending on me.
