I am not new to this forum, but I haven't posted in quite a long time. I hope everyone on here and elsewhere are doing as well as can be expected.
Me; my life has gotten so very, very small!! I've been at this point for about a year now. It's like this: When friends call me on the phone, in my head I'm begging them (never aloud) please, not to ask me to go out to dinner because I simply don't have any energy to speak of at all.
Taking a shower is exhausting. Let's not even get into keeping my bedroom dusted and waxed, because I'm not at the point that I write with my finger "dust me" on most of the surfaces of my furniture!! Ha!!
I've tried Nuvigil, and was very hopeful, but all I got was severe nausea and dizziness.
I'm seeing my doctor tomorrow and I'm thinking of requesting a prescription for Provigil, as someone I know took Nuvigil and had horrible headaches, but he has taken Provigil and it really seems to be working for him.
But, you people are the experts and I was wondering if you would share some of your tips with me, whether they be medicines that helped you, or physical therapy, massage, whatever.
I am totally terrified that this will always be my life, so please anyone, give me what you've got!!
Thank you so very, very much for your time, and I do apologize for this long diatribe, but I can turn to no one else who can really relate like all of you can relate.
I am either having a good period or taking vit D (rx 50,000 mg/wk) and supplementing magnesium (powder) is helping some. I am still napping 2 hrs and tired by 7 (or short nap around 6) but this is an improvement. Before I had regressed to being barely functional about 3 hrs before having to nap.
There are others on here who can give you info about supplements. Research what is suggested and always check with your doc first.
A few fundamental suggestions:
1. LOW carb diet-if possible to follow SCD program combined with anti-candida diet-not easy to adhere but could be a life saver!!
2. Coconut Oil. Best is extra virgin. Start with 1T daily, week 2- 2T daily
and build up to 4T daily. Eliminate ALL cooking oils! Use only EVCO.
It does not cause inflammation as it does NOT alter with heat.
It converts to energy easily-does not store as fat. Increases metabolism.
Also it a great anti-fungal with antimicrobial,antiviral and antiparasitic qualities. For more info go to the coconut research website.
3. Malic acid supplementation.
4. CoQ10 for ATP cellular energy production in the mitochondria.
5. Conscious deep breathing. Try for 7"- 7" - 7" inhale through the nose,
hold, exhale through the mouth and continue for 5-10'. Repeat throughout the day. Deep breathing through the diaphragm helps limit Lactic acid production associated with shallow breathing.
6. Drink plenty of filtered water or spring water.
7. Consider Hypnotherapy 6-12 sessions for fibro issues-pain,fatigue,sleep. Find a Therapist who works with fibro. It makes a huge difference (I can attest to this as I do Hypnotherapy among other Holistic Therapies)
8. Magnesium Oil transdermal treatment. Spray, massage Magnesium Oil
(Magnesium Chloride flakes with distilled water 50-50) on your body except sensitive areas and leave on 20-30' and then shower well.
Use a long handle brush afterwards to brush your entire body for lymphatic stimulation.
9. Eat nutrient dense quality fresh and organic foods, avoiding processed
and multi-ingredient products.
10. Do heavy metals detox. Remove mercury fillings if you have any.
11. Do engage in light activity EVERY day. Short walks, bouncing on mini trampoline, swimming in the pool-anything you can do at all! Do not stay put for too long.
12. Meditate before going to sleep. Listen to meditation cds if not able to meditate.
Following just some of the above suggestions will make a significant difference in you energy levels.
Also the advice from Buffy is good. Magnesium delivery is usually an issue as many people get diarrhea from the powder. The magnesium oil application is a safer and more efficient method.
Wish you well.
Happy and safe Holidays.
Thank you so very, very much for responding to my missive. Sad to say, but oh, so true, it does help to know that there are other people out there in this great big world who have the same problems to deal with as I do.
About this magnesium. I dislike sounding ignorant, except when I actually am, and this is one of those situations.
I also have lupus (SLE), in other words, the really bad kind of lupus and in one of my books regarding the medicines prescribed by doctor's versus the supplements I can take says NO!!! because it will negate the plaquenil I take to help control the most major lupus flare-ups.
What I am asking is; do I ingest this magnesium, or put in all over my body? Because, either way it sounds as if it would get into my bloodstream and that's not good for me.
I am going to print out your response, as well as Buffy's so I will have them in my medical information files.
I, too, have SLE along with fibro and CFS (as well as other medical problems) and I definitely suggest you checking with your doctor before trying the magnesium or any other supplement for that matter. I've asked my doctor about supplements before and the answer I've always gotten is that with SLE they should be avoided because they ACTIVATE or BOOST the immune system and in auto-immune diseases, the immune system is already out of whack and actually usually needs to be depressed rather than boosted. Hence, the usual use of immunosuppressent meds with SLE and other forms of lupus and aother auto-immune diseases.
I'm afraid I don't have much to offer in regards to what might work - I'm still searching myself! I'm slowly learning to do what I can when I can and what doesn't get done today will still be there tomorrow. I try not to be too hard on myself about not getting everything done that I have intentions of doing, but that, too, is a long and continuing process. However, I've also learned that if I do push myself beyond my limits, I end up suffering for days or more, so I really do try not to get to that point.
Plaquenil is a drug that if you must take, consider taking the minimum dosage possible as the long term effects may seriously affect vision (macular degeneration).
The immuno-suppressing approach -in regards to taking supplements- seems to be a questionable, as one of the aspects of SLE is the presence of mycoplasma nano-organisms. The so called autoimmune response is the immune system's attempt to locate (as they're disguised with cell membrane hiding within the tissues) tag and destroy these.
For reduction of flare ups a strict alkaline diet is recommended along with foods that do not contribute to the flare-ups. Avoiding red meat, fried and processed foods,cooking oils, flour,sugar,grains, artificial sweeteners, junk foods,sodas and dairy will help a lot.
Try instead to consume free range chicken, mercury-free fish, organic vegetables, Extra Virgin Coconut Oil 2T daily to start,some seeds and nuts and drink plenty of alkalizing filtered water.
I use in my 750ml stainless water bottle, filtered water, 1/4t baking soda,1/4t raw unprocessed sea salt, 1 bromelain tablet, 5-10 drops of 3% food grade H2O2 and 2T of ACV 5 days a week! I sip throughout the day plus another 750ml just filtered water.
You urine PH should be about 6.75-7.35. Just get the test strips from the Drug store. To fight the mycoplasmas try food grade Borax powder added to the alkalizing water . Add about 1/8th of a teaspoon and increase to 1/4t in a week or 2 for the body to get used to it.
Heavy metals detoxification also is needed as the mycoplasmas flourish in
an acidic enviroment specially where's a concentration of heavy metals.
The irony is that the very suggestion of avoiding Magnesium supplementation-for fear of rendering immuno-suppressive drugs less effective- is actually a paradox. Magnesium protects the cells from heavy metal deposition -one of a few hundred important bodily functions where Mg is involved.
My concern is that from the one hand we try to contain some symptoms of this condition by suppressing the immune system using various drugs,
and on the other hand perpetuating the disease and encouraging numerous imbalances in the body such as low electrolytes, low expression of cell membrane potential, impaired neurotransmission, inhibited hormonal regulation and transmission, lack of calcium and potassium control in the body (excess calcium gets deposited in the joints,arteries,brain)-, metabolic issues- including inability to utilize Protein, Vit.C and Vit.E , cardiovascular problems HBP and arrhythmia, muscle fatigue and on it goes.
I would like to know one thing from the prescribing doctors.
How is it possible for the patient to reach acceptable quality of health with a suppressed immune system and all these serious potential imbalances?
The human body cannot be treated only for symptoms, concentrating in only specific organs or other parts of it. It must be treated as a whole, respecting the important inter-connections of all the organs and systems as well as the mind and spirit aspects of ourselves.
My ultimate recommendation is to stick with your doctors advice and treatment plan if you are experiencing long term improvement and you are satisfied with the level of health you have reached from the start of your treatment till now. However, if this is not the case, then I suggest that you take a serious look at your present situation and perhaps explore some alternative ideas.
Being skeptical is great, as long as you exercise skepticism fairly.
That means, that you must include your doctors' advice, the treatment plan and medications you are taking, information from books and the internet, including the various posts in this forum.
My suggestions as well, as they are only my opinion, based on my
knowledge and experience, should go through the same scrutiny.
It is your health and your life. Leave no stone unturned. And don't take no for an answer either.
I have come across people who reversed MS, Bi-Polar,Cancer.
There's no such thing as Incurable! Looking back at my own life, I'm not even supposed to be around, following my 2 near fatal accidents and my "long gone" undiagnosed illness. And here I am, in great health today, offering my advice to anyone who wants it.
Suda, should you consider Mg supplementation, transdermal is the superior delivery method-see #8 in my original reply.
There are many things that can be done.
Just keep an open "skeptical" mind!
Blessings to all!
Happy and Safe Holidays!
Thank you for your kind comments.
It is indeed, a great satisfaction to see individuals like yourself, eager to
widen their knowledge base and apply it in their quest for better health and consequently a better life.
My Guides have worked it out for me that I'm constantly in touch with
the ultimate resources for the optimum answers! Really!!
There's always this "knowing" where to look, what to do, who to seek, what to avoid in regards to finding solutions or making the right decisions.
In return, I help people do the same. It's part of my purpose. Call it Karma.
I've been told that I come from a tradition of natural Healers, as in Past Lives I was a Healer,a Medicine man, a Shaman.
My intuition has connected me to the Hay House Wisdom Community,
one of the finest resources for Inspiration, Spirituality, Personal Growth,
Wellness and Health. Hay House Radio is Free, however the Wisdom Community membership ( there'a nominal cost) allows 24/7 access to the members to all the programs.
Top Educators and Leaders in their respective fields are available to offer us their wisdom and teachings. I have had the privilege to meet many of them personally, in workshops, seminars and lectures. Like Dr. Wayne Dyer, Bruce Lipton, Denise Linn, Sonia Choquette, Doreen Virtue, Dr Brian Weiss, Dr David Perlmutter, Deborah King.
Just do a search for Hay House Radio and get a taste of Best of the Best
mediums for wisdom and true knowledge.
I have also invested a fortune in CD programs, books, newsletters, seminars, workshops , many courses, and in recent years in NLP, Advanced EFT, Energy Psychotherapy,Hypnotherapy, Reiki.
The Internet-as you mentioned- is a great place to learn as long as you are able to shift through the biased and or unreliable or even dangerous information. "Pseudoscience" is a great course to take for anyone doing internet research. You'll be surprised with all the devious methods used online to portray data as factual, the numerous botched studies that supposedly "prove" certain findings- specially medical. As they say it's a big racket out there. Proceed with caution.
My wife as a Dietitian, has influenced my life greatly.
Nutrition, biochemistry, supplementation, weight management are huge factors in Health-something usually ignored by conventional medicine.
Also my connection to the Spirit world has been one Major source of
Revelation. If interested, listen to Sonia Choquette. Actually do a YouTube
search as there are many of her video clips available. She's a fantastic spiritual teacher and psychic and makes it easy for most people to explore their psychic and spiritual aspects of themselves.
When we mainly use our Spirit for guiding us, life becomes fluid.
When we mainly use our Mind for guiding us, life becomes "rocky".
Have fun learning!
Big Hug too! ( we need 4 hugs a day minimum - says my daughter-
just for survival!)
Happy and Safe Holidays!
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