Status
Not open for further replies.

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
Full disclosure. 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. I hope that's not against any rules.

I know this is a novel, not a blog post. Maybe there's something in here for you, if you are up to digging through it.

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 hasn’t worked. Conventional medicine has not worked at all. For years, she was treated for "hairline fractures" that could be seen on XRAY. They weren't fractures. They were CRPS and The Pains. So, if you have a history of "hairline fractures", consider if you really have fibromyalgia. Also, she had a severe episode of CRPS preceding her fibro diagnosis. I've found others who had CRPS as a child before Fibro diagnosis. They seem to be linked, almost like a progression of the illness.

After trying for six years or more, we no longer go to a conventional doctor for this illness. We tried amitriptyline, neurontin, gabapentin, lyrica, etc. I declined the antidepressants, because I was sick of feeding mood altering drugs to a teenager with a growing developing brain, and pain was only one of many symptoms, and not the worst, and treating pain often made other symptoms worse, and added new problems like weight gain. My daughter made the decisions on what she wanted to keep doing. There is no cure, and no treatment of underlying causes (because they don't even understand it well enough). if doesn't help, then don't do it!!! Allergy shots were no help. Biofeedback and CBT were helpful in adjusting, but once you’ve learned those skills, you’ve learned them. An occasional refresher might help in a stressful time. Typical counselling was a waste of time, gas and money, an aggravation, and a waste of life, for someone who had, at that time, only one good outing per week in her, which would then incapacitate her for days afterwards. She didn't have an "issue" to resolve. She was just sick. However, it may be helpful if your family is not adjusting or coping in a healthy manner with the disease. We were, so the counselor ended up fishing for "problems" to "solve", and it got pretty ridiculous. Plus, it seems that more than half the counselors out there are prejudiced and/or a bit crazy or just incompetent. Tens was not much help. Ibuprofen, NSAIDS, opioids, do nothing. Typically, in fibromyalgia, opioid receptors do not function normally, so normal painkillers are fairly useless, 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 neurological pain. But, those can have horrible effects, causing extreme weight gain, mood changes, etc. Lyrica was HORRIBLE. It caused horrible depression and irritabilty, and X-rated slasher nightmares. I've met others in person -- friends -- who had similar experience with Lyrica. AskAPatient is a good place to go to read about people's experiences. I regret giving this horrible drug to an innocent child.

We ended up in a crazy cycle of going to the doctor for no help, 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.
There is a saying, that the definition of insanity is to keep doing the same thing, expecting different results. So, we did something different.

We took her out of virtual school. Fired the doctor (she deserved it – after three years treating my daughter when a pain finally spiked during biofeedback, she said, “NOW, we know that pain you’ve been complaining about it real”. That doctor should lose her license! I transferred her to virtual school, did half her work (nonessential subjects), so that her workload of core subjects was reasonable for her capabilities, and life got better IMMEDIATELY. First rule of fibromyalgia – adjust your workload to be consistent with your capabilities, and avoid pushing yourself into a flare. Move the window by using diet, sleep, exercise, stress management and workload management, so that you can gradually do more without flaring.

The first thing that helped, even the tiniest little bit, was acupuncture, which was combined with electrical acupuncture (sort of like tens), infrared heat, and massage. Her muscle tension was measured at five times normal, once, at the ER. The masseuse said her back was so knotted up she felt like she had been in a car wreck. These treatments actually addressed at least one of the root problems, helped to unknot and relax those knotted muscles. However, it was a trade-off, because during a flare, she could not stand to be touched, so there were times when it was not an option. But, when I knew of nothing else that might even help a little bit, acupuncture was my only resource. And, alcohol. In an extreme pain situation, I would use a moderate amount of alcohol, although it had limited effect.

Then, 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 (perhaps only half as efficient as normal people), 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 as L-5-MTHF in supplements. This is sometimes sold in combination with B12 (we have used a product called “active B12”) because this vitamin is processed with B12, which is why many people with MTHFR may have high B12 levels, but actually may be B12 deficient, because they have it, but cannot use it, so it builds up.

This discovery of the MTHFR mutation, and discovering many discussions of genetics and methylation on Phoenix Rising (one of the largest internet forums of CFS/ME survivors) made me interested in genetics. I found a good overview of MTHFR on StopTheThyroidMadness, and that led me to get a 23andMe test (signup online to have a kit mailed to you, spit in the tube and mail it back, and results are posted online), 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. I learned where some of the problem spots are in her methylation and detox, and then googled Phoenix Rising for more information on things like methylation, detox and specific SNPs (a SNP – single nucleotide polymorphism -- is a mutation at a particular location in a gene).

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 connected this to her severe acne and asthma, which tend to do better when she’s getting enough vitamin A. Recently, she became concerned that two per day may be too much, and dropped back to one, and a month later, developed a huge craving for carrots. Back to two per day, I guess.

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. A very similar product, Perque, is a powder mixed with warm water that provides 1.5 grams of vitamin C in a lemony tasting warm fizzy drink. This has become a nightly ritual, and also helps to warm her up because she is ALWAYS cols. She takes any kind of Krill or Fish Oil she can get her hands on, about six capsules per day. She gets nervous when the Twinlabs Stress B vitamins get low, although I’ve debated with her that it has folic acid, which MTHFR people should avoid, but it gives her a real energy boost. I try to keep several forms of B12 around for her – methylcobalamin, cyanocobalamin, adenosylcobalamin, using patches, and active B12 and Adeno B12. She also takes Co-Q10. In addition, she keeps several herbs. She bought a huge container of turmeric that she uses in food, and also in skin care concoctions. She rotates through many of the beneficial herbs (adaptogens) as well, such as holy basil, ashwaganda, ginseng and others. Also, we use huge jugs of MSM powder (sulfur) which we add into our beverages. She uses MANY, MANY supplements, and I’ve probably forgotten some. She also takes 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.
We have also discovered some special blends, such as Kavinace and Travacor by neuroscience, that she rotates in occasionally.

Also – 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.

For bedwetting, an alarm works amazingly well with someone who has an overactive nervous system. The alarm went off once, and the bedwetting problem was 99% solved. There is at least one advantage to having central sensitivities!

She has learned that wheat products, and possibly all grains, and milk products (which generally trigger wheat allergies since cows eat grains) – basically gluten and casein. However, the truth is that she doesn’t really do that. However, she has learned that eating a typical diet, with cookies, bread, etc. will make her sluggish and start to flare, and so when she feels bad, she will switch to a more whole foods diet. She eats a lot of smoothies, with fruit and may sometimes add a protein powder. She eats a mixture of brown rice and beans (cooked with mexican spices like garlic, cayenne, paprika, chili powder), with tuscan herbs and fresh cilantro and lime. Indian curry. Interestly, Indian foods tend to have more natural ingredients and less additives. Quinoa. Sometimes, we make a beans and quinoa bowl. She will sometimes cut out most meat in her diet. Digestive Enzymes. But, sometimes includes fresh cooked meat in her diet, like steaks or chicken. Chipotle or places like that, is a good way to eat out when she’s Bottom line – rotating her diet is one of her “medicines” for this illness. When she’s not excluding meat or cheese, we keep a good quality sliced salami from the deli counter, and some good cheeses, for a quick natural snack.
She also uses L-carnitine, NAC, and some other enzymes, etc.

She is also practically living off dried apricots at the moment. This gives a quick energy boost, fiber, and is a natural alternative for candy or cookies, when he sweet tooth hits. We pick up bags of them at Aldi or Big Lots.

Every day, we fill a gallon glass jar with hot tap water, and throw in a mixture of oolong or green tea (about five normal bags) and a couple black tea bags. After this sits for five minutes, we drink it thorughout the day (usually need to refill it at least once). We squeeze fresh lime and lemon, and add about a quarter/half teaspoon of MSM powder into each stadium cup glass of it, and drink this throughout the day.

For sleep, we occasionally use melatonin, 3 or 5 mg either sustained release or not, depending on what effect we are trying to achieve (SRT to stay asleep, and non-SRT to get to sleep, and also skullcap, valerian and hops. Also Kavinace ultra-pm. 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.

I know this sounds excessive, but it happened over time. We started with one thing, and added things, and found they worked. We learned we have to use products for weeks or months before we see the full effects.

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 shop on ebay, have amazon prime to get free shipping, use ebates and drugstore dollars on drugstore.com. 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 was at maybe 15% function, and now is up to 65-70% function. I just can't express how much this means, to see a kid being a kid again, instead of huddled in a dark room under a blanket all day, every day.

She uses her iphone for everything. The kindle helps her to adjust the contrast and font so she can read, because eyes jumping is a symptom of fibro. She wears earbuds constantly, and I have to replace them, sometimes every few days because they get fatigue in the wires. She can use them for white noise, for self hypnosis sessions, sleep routines, music therapy, for socializing, texting, etc. to stay in touch with the world while she is home bound (she is doing virtual school because she was too unwell to go to regular school).

One other type. She 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.

Research says people with fibromyalgia who are moderate alcohol users function better than non alcohol users or people who use more than moderate amounts. But, alcohol hits the opioid receptors, and opiod receptors don’t work so well in FibroWarriors. Also, the metabolic cost can be too high for people who don’t detox efficiently like my daughter. She can drink a very moderate amount, very occasionally, but that is all. I have used alcohol in a severe crisis, when she dropped to the ground, screaming and writhing in pain almost like a seizure, because on our one trip to the ER, when she was frozen stiff and could not move, they told me, “we don’t treat pain” and sent her away with no help. So, it’s up to me to find something in a crisis, from what’s available to me.

Marijuana hits the cannibus receptors, unlike opioids. The cannibus receptors are safer, because opiod receptors can shut down your autonomic nervous system (it’s possible to drink yourself to death or die from opiod overdose), and that’s not the case with the cannibus receptors. However, the smoked form of marijuana can aggravate asthma, increase paranoia and, for my daughter, aggravates the blood pressure problem severely. So, it’s not much help. However, one might experiment, in a state where it is legal, with strains of different levels of THC versus CBD, and other forms, such as oils, foods or vapor. I do believe there is potential in marijuana for pain control, based on the research, but we do not have the access to explore it fully.

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.

There is a form of muscle relaxer called cyclobenzaprine which is being researched for Fibro. Normally, it is given in high doses like 50mg. They are experimenting with low doses of about a tenth of that, for a nightly dose in fibromyalgia patients. Given the muscle tension and muscle knots, and sleep disruptions, I believe this could be helpful. In small trials, it has shown to be somewhat effective.

Some websites that have helped us over the years. Phoenix Rising for discussions of genetics and methylation, and much more. CureTogether for ideas on what helps. AskAPatient. StopTheThyroidMadness. And, many other forums such as this one.

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.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
Wow. I just wanted to thank you for the share. The hours, time and money you have spent are daunting. It is a wealth of knollege and I'm convinced "fibromyalgia" can have many causes. I believe mine and my sons may be due to a gene we posses that doesn't chelate mold out of our body (always shared the same symptoms but lived in a rental home that we became severely ill in only to find it had two bathroom walls of aspergilius growing between) moving out helped my hubby but my son and I are not getting better). Hours of research!!! Just finding a doctor that test/treats it (first apt. Next month). But some steps I've taken are already helping. I wish I had a "you" that had gone before me and shared.
I do not know if detoxing will help but I did post about my exsperiance with ionic foot detox in alternative" (no I'm not selling anything lol).
I'm like you, I don't mind the exsesive if each component helps.
God bless you and your family for your patience/diligence and generosity in sharing.
May a cure be close!
 

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
Thanks for your kind comment. I am very interested in what you mentioned about a gene that doesn't chelate mold out of the body. Do you have a specific SNP or gene reference that could help me investigate that? My daughter has had some exposure to mold, but not severe, according to some testing we had done. I've wondered if genetic intolerance to mold was playing into this in some manner.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
HLA-DRBQ. I did not become deathly ill until we moved into that house, "toxic" mold is I guess called toxic for a reason! I weighed about 110 and was in the home almost around the clock, i believe this is why I got it the worst. My biggest fight with making the rental company clean it ALL up right was if an infant had been in that house (and I now know if they had this gene) it most likely would have killed them, if I'm correct, i won't know until I get tested.
Even if your daughter test negative for the gene the fact that she tested positive for mold, I would look into both chelating it out of her and maybe have your home tested to c if there is any hidden mold. (I think we paid about 700 to test the house). I know it's a lot, but if it's the answer what a blessing that would be!!!
Please let me know what you learn.
Blessing to you.
 
Last edited:

gryfalcon

Active member
Joined
Mar 24, 2016
Messages
55
Reason
Caregiver
Diagnosis
06/2011
Country
US
State
TX
I can see the symptoms reaching back to infancy, once I realized what I was looking at (we just took it for granted and adapted) so I know that the underlying problem is genetic. Her grandmother had it, too. And, her aunt has it. I have my suspicions about other family members. It's possible they were all exposed to mold, but they all lived in different houses and I've come to realize that everyone in the South and Southwest is exposed to mold, at some level, and whatever she was exposed to, so were myself, my husband and my other child. So, it goes farther than mold. Identifying these genetic breaks in her chemical pathways has helped us to go from about 20% function to maybe 60% function, which has been HUGE. I think she can carve out a reasonable life at this level, maybe slightly scaled down, whereas where we were three years ago was bleak. If there is a mold problem, she is now able, physiologically, to deal with it more effectively, most probably due to repairs in her chemical pathways. We've also redone our kitchen and both bathrooms down to the studs, and pulled up our carpet, so that helps to ease my mind.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
I had rue led out mold years ago (Vanderbilt medical tested me positive for allergy to it but assured me the hype was nothing) I was working at the church where my son had gone to MDO as MDO director, we discovered a water leak and I have always been sensitive to musky smells. The ASPERGILIUS house had me re investigating mold, my problem has always been why was I sick and not my husband. When the fibro diagnoses came in I started looking at suggested causes and up came mold again but this time I learned if this gene. It makes sense. Making scence doesn't make it so. But if regular mold caused low grade symptoms my whole life I can imagine what living in toxic mold did!
My son has informed me of a problem he's apparently had for the past year that I believe will require a MRI so that might take my testing money and slow my progress on this theory. But I will try to keep you posted on any definitive answers I get.
Yes the South is known for our hospitality but anyone from the north will tell you we smell like mold!!! Lol. But I do love the southern life.
 

Eyesup

Senior member
Joined
Dec 11, 2015
Messages
376
Reason
DX FIBRO
Diagnosis
12/2015
Country
US
State
Florida
I'm also finding it very interesting how many active members on this forum are within hours of each other here in Texas.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
Yeah, that's curious information! Eventually people living in those locations could gather one day?
 

remnant

Senior member
Joined
Mar 11, 2016
Messages
209
Reason
Diagnosis
00/0000
Country
KYA
State
Central
What I can say is that this narrative is typical of fibro experiences but with an added twist. The fact that you learned at every step of the way and applied it to your child was the game changer. Each fibro experience is unique and drugs may work for one but fall flat in other situations. Others get better with mere behavioural modifications.
 

remnant

Senior member
Joined
Mar 11, 2016
Messages
209
Reason
Diagnosis
00/0000
Country
KYA
State
Central
What I can say is that this narrative is typical of fibro experiences but with an added twist. The fact that you learned at every step of the way and applied it to your child was the game changer. Each fibro experience is unique and drugs may work for one but fall flat in other situations. Others get better with mere behavioural modifications.
 

oportosanto

Distinguished member
Joined
Mar 16, 2016
Messages
166
Reason
Relative
Diagnosis
05/2015
Country
US
State
FL
That is something typical here, some drugs work in certain cases, but not others that is why this is a disease so hard to fight.
 
Status
Not open for further replies.
Top