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dfwmomFor juvenile fibromyalgia... 1. Fire the doctor. 2. Fire the school. 3. register at a virtual academy (ours is a public charter, so no cost). Pain management clinics manage pain, and grade their success by subjective pain scores over time. The worst symptoms of firbro are not the pain, it's nausea, fatigue, dizziness, fibro fog, etc. The medications they give for pain make those symptoms worse.Pharmacies lie about medications. Lyrica makes you run into walls, and doesn't even help with pain. Use supplements to help with sleep, such as sustained release melatonin and L-Tryptophan. Accupuncture helps. Exercise, and whole foods. LISTEN TO YOUR CHILD, and DON'T let other people, not even doctors or teachers, wrestle with you for control. YOU and your child are in charge, and only YOU know what you need, and what is working and what is not. Doctors can't cure you. If you've tried their medications, and learned biofeedback and had some cognitive behavioral therapy, you've seen their whole bad of tricks. Maybe, the doctor can't help you. But, you can help yourself.
ZorkXyrem is the only thing I've tried that helped dramatically. On Xyrem I had less pain and stiffness than normal folks. I could sit at the PC all day and not get stiff and sore. Off it now (cost). May try LDN next.
LDN has been a real help but i'm not 100%. My vitamin D is low as well. WBC has been low in the past. I'm too young for this. Ciprofloxacin (anti-biotic) I believe was my trigger. Brain fog sucks, especially when you're 20 years old.
Mindfulness Training. Make is a point to forgive and forget. Don't get angry. Move on. Focus on what you can do and get satisfaction from that.
B.at the moment i take tramadol,norflex,and savella. It helped great in the beginning but i have been on it for 3 months and it just helps ease it some. Im still in pain all day.. tired. I HATE the way i feel.. since hearing about LDN I'm going to get with my doctor and ask him about it.I can only pray I can find something that will make me feel like ME again :(
Re: Low-Dose Naltrexone (LDN) — This drug was a miracle for me! Migraines, brain fog, bad balance issues -- gone overnight. 9 months in, pain is 60% improved. If you cannot find a DR, call River Pharmacy in Canada or see them online. They will send it via India. It is very cheap. Compound it yourself -- take one 50mg. tablet, crush and dissolve in 50 ml distilled water, use baby doser and start at 1.5 mg/day at bedtime. I am now at 4 mg. Will try 4.5 soon. Cost=$139 for about 9 months! Everyone should try it. Won't work for everyone. It is an opioid antagonist meaning you cannot take any opioid drug along with it. Beware: most doctors including Rheumatologists neither know nor WANT to know about it. Just do it yourself, reading LOTS online first.
Re: Low-Dose Naltrexone (LDN) — Just found out about LDN and would very much like to try it. Does any one know of DR. in NE Texas that would prescribe it???
Re: Guaifenesin — Fibro not fiber.
Re: Guaifenesin — Gave me my life back. Helps with the pain and the fiber fog as well.
Re: Muscle aches in entire body — The never knowing what the next day will bring is so frustrating. The aches and muscle spasms are constant, but the intensity changes daily.
Re: Low-Dose Naltrexone (LDN) — I was on LDN for a year and a half with excellent results. Along with 5Htp, this treatment enabled me to stop taking all pain pills, anti-depressants and sleep meds. Unfortunately, I was then in a car accident , all my symptoms spiked and I was getting no relief from the LDN at all. I have now discontinued it, but hope to try it again in the future. I encourage all of you to at least give it a try. For me, for a time, it was a miracle!
Re: Duloxetine (Cymbalta) — It gave me permanent, uncontrollable twitching. It's been at least six years now, so I don't expect it to ever go away. Half my hair fell out as well, but it has grown back.
Re: Muscle aches in entire body — It feels like when you have the flu and your whole body is just aching. Even your fingers. Add to that...sharp shooting pain and electrical pain. Worse in shoulders, upper back, arms, hands, skin, and feet. This is pretty much every single day although during flares the pain level jumps dramatically.
Re: Low-Dose Naltrexone (LDN) — LDN gave me my life back. Ginny Dudek
Re: Magnesium — Magnesium Citrate is the most bioavailable form and the most effective, sans the laxative effect. Try Magnesium Glycinate to avoid that. Vit C 500mg PER HOUR also works wonders in 24 hours.
JackabugRe: Tender points (trigger points) — They need to add more locations beyond the standard-criteria 18! Too many docs, even rheumatologists, think ONLY those 18 are genuine FMS points.
Doctors also need to get better at pressing on the actual points. I've had a few come within a centimeter (1/2") of one of my "standard" points, then move on assuming I wasn't sensitive there, when they were just off the mark. If a housecat can find these points (easiest way to give a non-clinical -- i.e. yeah, go to an MD for confirmation but this is what to look for -- diagnosis to someone wondering if they have FMS is to find out if their cat steps preferentially on their trigger points when walking on them) then why can't doctors with years of medical training poke us in the correct spots?
JackabugRe: Brain fog — Many days, especially when the weather's good, I have little or no fog. When it's at it's worst, though, I'm useless... can barely form a sentence, flail for words, lose the thread, can't recall priorities (e.g. need to pay bill / take medicine / plan a meal / etc.) for that day.
ISBeagleRe: Tai Chi — s/b Tai Chi dvd
DiDeRe: Stress — I believe stress was my major contributing factor and definately contributes to flare ups. My stress is pretty much all job related but I got really bad when combined with house hunting and buying.
DiDeRe: Physical activity — Controlled excercise is crucial to getting relief and energy back. I do cycle classes, pump - weights and swimming and I feel better instantly. Physical activity like moving house, office, conferences or all day physical jobs exacerbates my symptoms to the point where I need to take a day off and rest.
DiDeRe: Massage — Has to involve trigger point deep tissue to really work for me.
DiDeRe: Heating pads/packs — You can buy stick on heat pads that last 8 hours and they are brilliant. I put one on my sore places on my back overnight and I get alot of relief
klayRe: Magnesium — Fabulous. I felt almost 95% relief within 24 hours and I had a bad case of fibromyalgia. I had tried everything. I tried magnesium chloride which absorbs better than others.
janewhiteRe: Physical activity — I agree with bikerkitty and Magenta: Exercise can worsen the pain, but once I learned to exercise the right way, I got stronger and started feeling better. And of course, the only cure for morning stiffness is movement.
lockhogRe: Physical activity — I'm trying to figure out if I have fibrmyalgia. I have a lot of the symtoms. trouble sleeping, irritible bowls and bladder, fatigue muscle aches, but my main problem is foot pain that is severe in both feet. They ache so bad it unbelieveable. Also numbness and can't stand the cold at all on my feet. My feet are always cold.
FibrochondriacRe: Weather changes — I just moved from Seattle to San Diego. Wow, what a difference! I'll flare if I do too much, but the everyday aches and pains are significantly less. Going from a normal 7-8 to some days 3-4 (on a scale of 1-10...but you knew that right?). I still have the pain and stiffness when I wake up in the morning but still getting away from the damp cold weather really helped.
snodove65Re: Duloxetine (Cymbalta) — I was allergic to this medication.
FibrochondriacRe: Born with it / Genetics — Yeah, I can see where genetics would cause it. My 25 year old daughter was just diagnosed with Interstitial Cystitis...which apparently is related to fibro. I wouldn't wish either on my worst enemy...
FibrochondriacRe: Cold weather — Just moved from Seattle to San Diego. Feeling quite a bit better. The pain is still there...but I'm not suffering as much. Does that make sense?
FibrochondriacRe: Stress — I had, what was for me, a really high stress job (doing something you hate and getting paid really well for it. So glad it's over!) and I think my reaction to it caused the mother of all flare ups and caused me to, ultimately, lose the paycheck.
FibrochondriacRe: Ross River Fever — What is Ross River Fever? Never heard of it and I thought I'd researched fibro to the point of overkill.
FibrochondriacRe: Morning stiffness — Morning stiffness? Oh I call that my "crab walk" and it takes a good hour for it to go away on a good day. Too bad there isn't a severity score of "down right ridiculous" because this has to be one of the silliest parts of this disorder. But I try to laugh about things...how else can you handle it?
FibrochondriacRe: Avoid gluten — I was amazed at the difference it made. We just moved and I was too tired to cook so resorted to eating take out. Wow, bad move. Serious pain. No more burgers for me!
dvanceRe: Pregabalin (Lyrica) — The lyrica did seem to work, but I gained weight, about 14 pounds; and my eyes changed enough that I had to get new glasses. I quite taking it and most of the weight is still on and my eyesight didn't change back.
chriszRe: Zolpidem (Ambien/Stillnox) — I have taken Ambien virtually since it came out. It has been the most effective medication I have taken.
chriszRe: Pain in hair/scalp — This seems like a strange symptom, but I can touch the tip of my hair and have it hurt at the roots when I am in a significant fibro flair.
cris_portugalRe: Avoid alcohol — Lyrica was useless, in fact caused diziness and increased muscle morning stiffness (!); Amitryptiline seems to have helped over the past 6 years but contributes to weight gain, dry mouth and "slow motion" in early hours of the day. Cylobenzaprine helps if taken with amitryptiline, alone for me doesn't seem to have an effect; tramadol and codeine seem to bring moderate improvement in myopains but may cause diziness, also it's not convenient to drive or perform any activities which require focused attention and rapid reflexes, if one needs to be well alert
nicolelbtRe: Rest — Knowing when to slow down and give myself a break seems to minimize how long flair ups last
MagentaRe: Physical activity — I have the same experience - it can wipe me out but in the long run, obviously it is crucial.
MagentaRe: 5 HTP — This really seemed to help for a while, but then stopped working - frustrating.
MagentaRe: Progesterone — I tried this for gyn. issues, but not fibro - it causes me to bloat with crazy mood swings, yuck.
MagentaRe: Guaifenesin — I haven't tried it at the therapeutic dose yet, so hard to tell.
MagentaRe: Massage — Has been a lifesaver.
MagentaRe: Pregabalin (Lyrica) — I took this for both fibro and vulvodynia - I felt a lot of relief within days, but then became painfully bloated and had trouble urinating, so I had to stop
MagentaRe: Weight gain — I didn't have weight gain from fibro, but it has been up & down because of meds prescribed
jambo1Re: Antibiotics — have fibro sinces im 19 years old 22 two now tried every thing nutting works my hole life is gone cant work cant drink cant do any thing i love d used to weight life jog swim just sit in every day cant put on weight wen i was 19 i was nearly 11 stone now im 9 stone 5 cant see the light at the end of the tun need a cure cant live like this:(
mareeRe: Excessive antibiotics — was given 80 pills in 10 days.
mareeRe: Magnesium — helped with the pain
mareeRe: Pregabalin (Lyrica) — made it more painful
bikerkittyRe: Physical activity — both yes and no. If I overdo it, it makes me extremely fatigued. But I found that once I was able to exercise I do feel much better. (this was after 3 years of antibiotics and 3 months of physical therapy to help me get some muscles back).
bikerkittyRe: Antibiotics — Fibromyalgia is just a diagnosis that they can't figure out whats really wrong. Many people actually have Lyme disease which is somewhat treatble. I improved greatly after 3 years of antibiotics. It's a controversial diagnosis and treatment but I've had a lot of improvement with pain from treatment. igenex.com western blot is the lyme test that is occasionally right. The ELISA test is a waste of your money, don't bother it's almost always negative even if you have lyme since it only tests for one band. Remember that most lyme tests are 70% false negative. I tested unconclusive with igenex test and then after being on antibiotics for three months, I then had a strong positive. They believe this is because if you are really sick then all your antibiodies are actually tied up with bacteria so there's none left to show up in the test. Once you start treatment then you see more free antibodies. I'm not completely better, but I've regained a lot of functionality and now am able to get restoritive sleep even though I still have a lot of fatigue, the pain is much improved.
bikerkittyRe: Magnesium — IV magnesium temporarily helped
bikerkittyRe: Avoid alcohol — might help some, not a big improvement.. improves immune system
it worked better to drink than any painkiller I had though.
bikerkittyRe: Avoid caffeine — helped with PMS symptoms not for fibro
bikerkittyRe: Heating pads/packs — helps a little, temporarily, cold makes it hurt more and causes muscles cramp
bikerkittyRe: Hot showers/baths — helps temporarily
bikerkittyRe: Rest — since lack of restful sleep is the problem, this obviously is not helpful.
bikerkittyRe: Trigger point injections — helped for about a week, was wildly expensive, didn't help that much overall
bikerkittyRe: Massage — temporary relief
bikerkittyRe: Duloxetine (Cymbalta) — made me nauseous and suicidal.
bikerkittyRe: Anxiety — not caused by "fibro"
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