I am taking: 20mg Ritilin,GuaifenexDM30,75mg Lyrica-AM
10mg Paxil,GuaifenexDM30,75mg Lyrica-PM
For the first time in 8 years I feel completely normal. I realize this is just treating the symptoms, but it gave my life back.
So far the Valcyte has worked for me. This is the first time in 20 years I've gone without steroids and antibiotics for a fall and winter. Im afraid to even say it, but I think I may be getting substantially better.
Trazadone for sleep, Valcyte, fish oil, and that's it.
The best thing for me was attitude: I try to do things that are meaningful even if they make me tired. Better to live your life tired than just to sit around. I try to stay engaged with my life and with people.
Next best: Naps, naps, and more naps. Also resting, or lying prone on the couch. And no, they do not affect my nighttime sleep. They help me to sleep better.
Then: Cymbalta is a great antidepressant. It helps some with pain. Lyrica is good too, and helps (some) with migraines.
Supplements: Vitamin D in large doses, helps with foggy brain, and neuro symptoms. Magnesium helps with painful legs. Probiotics and inulin fiber help with digestive troubles. Colloidal Silver helps sinus infections and sore throats.
Exercise is overrated. I try to exercise to lose weight, but always feel completely wiped out afterwards--even after swimming. What is much better for me is stretching and yoga. Also physical therapy, although my insurance stopped paying for it.
Practicing yoga several times a week helped me immensely with pain, tension and TMJ when I did it, both body and mind. (Sivinada style/gentle)
A cleansing/detoxing with a good herbal/fiber cleansing program and probiotics that takes 3 months has helped. It removes toxins, chemicals, metals, yeast, parasites , etc. and the mucoid plaque build up in your gastro tract so the nutrients from what you eat and the supplements can be absorbed by the body. All of these things affect your immune system. It was gross but facinating seeing what my body expelled everyday, and a relief knowing it was out of me....I plan to do it again in the near future because I didn't get to do the whole 3 months and I know there is more to be cleaned out. (colonix internal cleansing program)
Living life as stress free as possible helps too. I divorced a verbal/emotional abuser and that's helped to a point. Learning to let go of past hurts and wrongs, living in the moment instead of the past or future. (The Sedona Method Program and The Power of Now by Eckhart Toll)
Simplifying my home and lifestyle, weeding out and purging, less to take care of but what really matters to me. (Living the simple life by Elaine St James)
Plus positive thinking, watching my emotions and not letting things get the better of me, believing in my good health/life. Not discussing my illnesses or other negative things keeps the positive flowing...you know, the mind body spirit connection...we DO have the ability to heal ourselves, we have an entirely new body every 7 years...we are what we say, do, feel and think. For more on that watch The Secret DVD.
Eliminating all chemicals from my home, I use either homemade cleaners or plant derived cleaners. Essential oils instead of chemical air fresheners. The goal is to reduce the toxin imput while you purge the accumilation. I also use only organic body products, soap, shampoo, conditioner, lotion, face products, deodorant, tooth powder, cologne, and makeup. Plant derived laundry products; soap, fabric softner, chlorine bleach alternatives.
I will be eating organic foods as soon as I am able. I try not to use the microwave as much as possible. The destruction of our foodstuffs in growing, manufacturing and processing helped lead us to this challenge we are faced with, in my humble opinion.
And finally, I do not take any form of drug what so ever, with the exception of a decongestant for the sinus infections I get on occassion. (checking into guaifensen for this) My dr believes it was the anti-biotics, birth control pills and other drugs I was prescribed repeatedly since I was a baby set me up for this, along with a tubal lugation that messed up my endrocrine system. I am working with all natural means, supplements, vitamins, herbs, cleanses, hormones, bodywork, etc to beat this stuff.
I had a terrible time trying to get sleep until I put myself on a schedule and stuck to it.
Now I get at least four decent hours of sleep a night, if not more.
I try to fall asleep between 10-11pm. I get up each morning at 7am not matter how much I hurt! The joints have gotten better,less painful.
I've also read that if you sleep between the hours of midnight until 2-3am you get the best sleep between these hours. Forget exactly the reason why, sorry...
short term memory loss is another issue due to FM, medication and age.
RIBOSE~ I'm on my third trial now.
I really cannot feel a difference so I won't pay the high price for this anymore.
I'm also one of those people who cannot tolerate exercise. I've tried many times over and simply cannot do it without spending days down in pain.
I can stretch if I do so very gently, avoiding over doing it. I had hoped to be able to do yoga, but sadly I had to drop out of that class too. I feel pathetic not to mention my muscles are falling badly and I don't know what to do about it. I'm only 53 and I don't like where my muscles are heading! Before we moved South I would joke about my muscles getting here before me!
I read all to often about FM's who can exercise and feel so much better for doing so, this always leaves me feeling miserable and wondering- why can't I!
It's got nothing to do with being lazy,I have the desire.I have the time. I simply cannot do anything repetative. I'm artistic yet my FM keeps me from being productive because sitting in one position for any amount of time can put me into a pain cycle for days! I've tried changing up my positions, my chair,it's helped a little but still I can't spend the time I'd like to painting.
I do what I can and try to keep a postive attitude and a smile : )
I saw all the stuff you've done for your fibro and I've done it all too, but nothing but drugs made me better until someone told me to cut gluten out of my diet. No WHEAT products. I did it and I have NO PAIN now. I am off all my drugs. No antidepressants. No lyrica. No nothing! I've tried to tell people and they won't listen. I think some of them want to be sick. I don't. Please try it for just one day and see how you feel. I could tell in one day. Last night I ate some regular cookies to see what would happen, and I had terrible pain so bad I could not sleep. That was the first pain I've had since I got onto a gluten free diet, but the cookies were made with wheat flour. I am 100% convinced that this is the key at least in my case and a few others that have listened to me and tried it. The lady who told me did it and she is well now too. Her doctor told her to cut out dairy too. I drink soy milk anyway and have very little other dairy so I don't even pay any attention to that but I do pay attention to the gluten(ingredient in wheat) and I swear to God that I am well now. I had fibro for 30 years that I know of. I can do anything I want now. It is so wonderful! Good luck to you.
First timer here....I too have taken myself off wheat and gluten and that has helped the digestive part of fibro tremendously. I have had IBS for 31 years and did not realize that I couldn't tolerate those foods. I had a sinus infection last week and was prescribed Zithomax. My chronic pain was so low I couldn't believe it! Has anyone else experienced this with an antibiotic? I am going to an internest in April and will definately tell her about this!!!! Thanks for your responses!
Rest and Restore, Fibromyalgia and Fatigue Center supplements are really helping me with a better sleep and that way I wake up in less pain and with energy. I don't feel like a truck hit me and then ran over my dog and then put it in reverse and rolled over me again for good measure.
I'm loving having this energy! It's on their website I think. Fibroandfatigue.com
1. mindfulness meditation (Kabat Zinn books and cd's)
2. massage therapy
3. pacing, pacing, pacing
4. changed my entire life circumstances to eliminate stress as much as possible; got to grips with what I needed in my life to nurture myself and then went for it
5. Gabapentin 300 mg at night (for CNS hyper-reactivity) and Imovane 7.5 mg at night(for sleep)
6. Left an unsupportive environment and married a supportive loving man
7. finding something joyful to do (bought a horse)
8. supplements especially magnesium and potassium
9. telling myself it's okay to rest
10. journaling for pain/depression etc, journaling for what I'm thankful for, keeping a health log of what I try and what the results are
11. Ambrotose AO powder from Mannatech for energy
12. Fatigued to Fantastic powder from Dr Teitelbaum's web site. His book of the same title kept me sane in my darkest hours. The powder contains a very comprehensive list of vitamins and minerals.
13. Eleven hours in bed at night.
14. Focus on friends and don't worry about time/energy for acquaintances. Spend time with people who support me. Spread out social commitments.
15. Give up on 'should' and guilt, it's okay to say 'no'
Being a natural health professional, researcher and also former/present CFS experiencer, I have come to the conclusion that CFS is an obvious malfunction of tissue metabolism in all organs particularly the brain and glandular system. On a cellular level this can equate to mitonchondrial dysfunction, and starvation.
1. Recent research into Trans-Resveratrol (the red wine molecule that has extended life spans in several species), that it improves mitochondrial function and biogenesis (production of more, new and better functioning mitochondria). Mitochondria are the cells energy powerhouses. There are VERY obvious increases in stamina after taking 500mg capsule of a 98% pure Trans-Resveratrol supplement. Not to mention, better carbohydrate tolerance. Resveratrol has shown beneficial effects for the brain, heart, liver, not to mention it enhances insulin sensivity, regulates the stress response, and activates DNA repair genes. THIS IS KEY!
2. In addition I would recommend either a sublingual or injectable Cocarboxylase supplement or therapy. The western name for Cocarboxylase is Thiamine Pyrophosphate or Thiamine Diphosphate which is the active coenzyme of Vitamin B1. This is a keystone in both carbohydrate metabolism and dozens of studies have shown its capacity to regenerate nerves. THIS IS KEY!
3. Pyridoxamine - The all time best version of vitamin B6. I would recommend 1 capsule daily of a product Jarrow formulas makes called "Pyridoxall", contains 3 versions of B6. This products seems to normalize nerve conductivity and releive anxiety, depression and cardiac arrythmias. Very potent and Pyridoxamine also scavenges certain unhealthy proteins that cause aging. Great for proper protein synthesis in the brain and body. IMPORTANT
4. PhosphatidylSerine - Very important brain lipid needed for brain mitochondria and energy metabolism. IMPORTANT
5. Transfer Factor classic then later adding advanced formula (4life). This product re-educates the immune system amazingly well. You can actually begin to feel a difference slowly but surely. This is a must, in addition to 2 good probiotics; Culturelle and Ultra Flora Plus DF by Metagenics. VITAL
6. 100mg of Vitamin B5 daily. Pantothenic Acid - NEEDED FOR EVERYTHING TO HAPPEN. Too much to type.
7. Royal Jelly and Bee Pollen for those not allergic to them. Best superfoods for energy and strength without stimulating and exhausting effects like most herbal adaptogens. I am not an advocate of herbal adaptogens because they offer no nutritional backbone, but only stimulate.
8. Pure Nutrition whey protein isolate. Pure, natural, hormone free no additives and natural herbal sweeteners.
9. Ascorbic Acid powder, and Intravenous Therapy when possible. atleast 4.5 grams of powdered Vitamin C in a glass of water daily. An IV of 15-20 grams of Vit C gives a tremendous boost. Good for noradrenergic and serotonergic systems.
10. Those with severe depression who can tolerate S-AME, 200mg daily is a great addition to the above mix. Very synergistic.
11. Ascorbyl Palmitate - Fat soluble version of Vitamin C. Gets into the brain and liver. VERY important organs involved in CFS.
12. Potassium/Magnesium Aspartate. Great for strength. google it for more info. (Kal/Mag aspartate)
13. A good natural multivitamin.mineral. Preferably FERMENTED not synthetic USP chemicals. Make sure it includes a phospholipid complex!
14. Pycnogenol the patented pine bark extract. For microcirculation in the brain and body. Can thrown in a good grapeseed supplement too.
15. Those with cardiac dysrythmias avoid large doses of Vitamin B2 (Riboflavin) and high doses of NADH. They can often trigger irregular heart beats. So can large doses of Coenzyme Q10. Although i do advocate average of 30mg of Q10 twice daily.
16. Whoever can obtain Nootropil (Piracetam) from Europe in capsule form of 400mg caps. I would take 1 cap twice daily. Enhances neurotransmission and noradrenergic activity. Gives strength. Its a quasi-drug classified as a cognitive enhancer but more like a safe amino acid supplement. Its as safe as salt, been around since the 1960s and approved in every country in the world except our corrupt USA. (they want us to stay dumb here).
17. UDO's Omega 3-6-9 EFA capsules. Best for the endocrine system. Improves brain function also.
18. Everyone may want to try EPICOR. This is similar to a product I am researching from Russia. Although the Russian product makes this one look like a joke, for now I would suggest everyone to give this product a try because it sounds like it can ALOT of good. ******* MUST TRY.
Haven't had this ME for long - about ten months but two things have helped me incredibly so far.
Shark Liver Oil (with Squalene deep sea from NZ) - within three days of starting it I felt the brain fog lift, at literally 3pm one day. It was an awesome feeling! Like a veil was removed from my brain! The fatigue also improved significantly and has stayed there - not perfect but better. My nutrition practitioner who prescribed this for me said shark live oil was particularly useful for removing heavy metals and toxins from the body even though I haven't seen it described thus anywhere on my web searches!!
The other thing which has helped muscle twitches (fasciculations - I was having about 10,000 per day) enormously is Folinic Acid. Reduced to probably 1 - 2,000 per day now.
These above two supplements were dramatic.
I think Vit B1 helped also but not so dramatically
Have tried other things with no noticeable change like Vit B12(methycobalamin) sublingual and N-Acetyl-L-Cysteine.
Rather than a heating pad, I use what I call my "heat bag." I have a square one and an oblong one that I put in the microwave. It helps my knees mostly, but for some reason, I need cold on my neck. When I have difficulty sleeping due to neck pain - AND feeling hot (which I think is a F symptom) I get cold gel packs out of the freezer and place on my neck, up to and including those 2 bones at the base of the skull. These gel packs are very inexpensive @ around $2. at Wall Mart and I keep 1/2 doz and keep getting cold ones until I fall alseep. I never thought COLD would be what puts me to sleep, but it works for me!
Yoga has been extremely beneficial to me. I am 55 years old and began last fall and my pain dissipated within a couple of weeks. Unfortunately, it just returned when I was put on Red Yeast Rice Extract for high cholesterol. I was happy to take that instead of Lipitor because I'm aware of the side affects of statin drugs - Polymyalgia being one of them, which my Father got recently. As soon as my muscles aches, pains, twists returned, I went off of it, but it's been a couple of weeks and it remains. I continue with my Yoga which always helps and the Malic Acid seems to be helping . . . along with Magnesium and Celadrin. Celadrin cream works wonders for me. It can take the pain away (in my knees) in 5 min, so I can return to sleep. If you don't know of this, please google it, because not only is it a supplement, but the skin cream is proven to penetrate the joints and lubricate them. Other ingredients cool the area and topically, it feels better quickly.
If anyone has heard of Red Yeast Rice Extract and it's side affects and or benefits, (as I might be off here - perhaps coincidence???) please respond and title it Red Yeast Rice Extract so I can find it easily.
To the person that wrote about Amour Thyroid being the key . . . I live in Canada and it's not that easy to obtain here. I believe Armour Thyroid in the states is what Canada has labelled Natural Thyroid - meaning dissicated pig thyroid. First I was put on Synthroid and then an holistic doctor put me on Natural Thyroid. I didn't seem to feel better and so went to an Endocrinologist that specializes in Thyroid.
Unfortunately, he does not believe in natural thyroid and put me back on Synthroid. I have stablized and feel a lot better, however, some things nag at me. My skin is dry and my hair has thinned, especially at the temples. My eyebrows seem to fall out in clumps in strange places. Being a little vain, this drives me nuts. I can't help but think if I was on natural thyroid once again, these things may improve, as I know the natural is T3 and the synthetic is T4. T3 is vital for depression, skin, hair, etc. Try to find an endocrinologist that believes in natural thyroid. I'm also afraid to go off the Synthroid since I do feel more normal than I have in years, with the exception of the fatigue and the "hair thing" - LOL!
Any feed back would be wonderful and if anyone knows of a GOOD thyroid specialist in Toronto Canada, please list her/her.
lots of water
omega 3 fish oil capsules
marijuana using vaporizer
TENS unit for rigid back muscles
5 mg flexeril at night when needed for muscle spasms
Multi-vitamin w/ minerals
working on my music
havin' loving, supportive hubby
and a dog and a bunny ;-)
when pain is really bad, a shot or two of Evan Williams black