Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.
I WANT TO TELL THE WHOLE WORLD
Valen Labs and Dr. J. Teitelbaum as he has discovered that ribose (a sugar) irridicates pain in almost 70% of cases. This has been true for me:
RIBOSE, 5 mg, 1-3TIMES DAILY with food has saved my life. I am 50 to 75% better in terms of pain. Naps have decreased.
There has been a slight downfall with it in my case. You may be able to avoid it. I am very petite at 5'2", 112 lbs. It can cause hypoglycemia, anxiety, and panic attacks if taken at too large of a dose per body weight. It should be taken with a high carb meal.
I saw a drastic change in my life in 3 weeks. Now I can take long walks, clean the kitchen floor, type longer, wash my hair without pain, prepare a large meal, drive longer, avoid long naps, etc.
The latest news is very sad, as of 10/27/06 pm, I have decided that the hypoglycemia episodes are more than I can handle and I'm going to give this a break. Maybe I will try it again later...and I highly recommend it for an individual who does not suffer with a low body weight or hypoglycemia. It may even help you to loose weight. I hope that I just helped somebody because it felt like I was living in Disney World (being pain free).
[This Message was Edited on 10/27/2006]
[This Message was Edited on 10/27/2006]
[This Message was Edited on 10/24/2007]
CFS and Fibro cost me a very good job and career in my early 50's, went on LTD and eventually onto Social Security Disability and Medicare, which were lifesavers. Because I always embraced job and life with gusto, getting so sick was devasatating. I have been dealing with these challenges for 17+ years. The one thing which has sustained me through the wild roller coaster ride, the highs and lows of energy, pain, sleeplessness, loss of much social life, et al...is..putting as much energy as possible into finding solutions.....widely networking with other PWC's, reading everything published on our illness and being teachable about experimenting with what I used to think were pretty far out protocols....esp. outside mainstream medecine. A few of the highlights:
Went to the Optimum Health Institue in San Diego for three weeks and totally cleansed the body with vegan , wheat grass, colonics, massage, etc.
Finding excellent Allergy/Immunology Doc and reduce the allergy load, do 4 day rotation diets and to this day, still do Antigen injections. This gave me first breakthrough to more energy and better health. Maintaing healthy diet is critical.....no alcohol, caffeine, low sugar, modest grains, etc. This same doc got me started on a special kind of Transfer FActor, a liquid human blood product (from people with carefully screened strongest immune system). I still use as an injectable twice a week...paid so far by Medicare.
Findd the best Thyroid doctors and get right meds....Synthroid and Cytomel for me. It raisedd body temp one full degree, cut chills, and helped restore Adrenal burnout. GEt checked three times a year.
Worth mentioning that two products which have helped many PWC.s.....IVIG (Intravenous Gamma Globulin) and all forms of anti depressants have not worked for me at all. I am hypersensitive to wide range of medications, and the side effects make me even sicker. So this really pushed to work with Naturopaths and alternative healers.
In addition to treating the allergies and thyroid/adrenals, one of the most important symptoms to treat is the major sleep disorder. Klonopin worked best of all for 8 years, and then I experimented with less habit forming meds and herbs. The herbs help but I need a potent kick to sleep properly. TRied 7 meds. Neurontin, AmbienCR, Lunesta, Rozorem, Gabitril, trazodone,etc. Bad side effects, heavily sedated all day.....so happily back on Klonopin. In addition to now needing less sleep and awaking somewhat refreshed, my fibro goes down with proper sleep.
I find very little male company for this illness, so helped start a six people support group....me and five lovely ladies . To this day, ssome of us stay in close touch and share breakthrough info. Also important to have understanding allies while many of our families and friends do not cut us much slack. Rich's Bulletin Board creation is such a great idea like this.
ONe major improvement came for me being very involved with a Naturopathic doc with European training ....for past four years. Using daily liquid herbal extracts, etc. It has helped with more energy, calming nervous system, more mental clarity. It has put me in the poor house, but I have at least half a life, modest social life, a small used book business selling on internet and loving it. ONe of his effective products not so expensive is Shark Cartilege Powder which truly reduces worst Fibro....and some arthritis. And fish oil, vit. C and garlic daily to keep away most colds, infections.
Your "posts" are so informative and encouraging. THanks to all of you. I will get back on Probiotics, maybe try Pro Health's Transfer Factor. and Massages. Last thought. Stretching is critical for me to reduce fibro and walking and light swimming help immeasurably.
Keep the faith ....and remain teachable.
This is what keeps me going!
Ultra Inflamax (drink mix 1 x each day in the morning)
Musinex DM ( 1 each morning)
Aleve(1 twice a day)
Vitamin D (once a week)
Magnesium, Calcium, Potassium (every night)
Bio Identical Hormones (night)
Frequency Specific Micro Current once a month
Ionic Foot Bath 2 times a week for 2 weeks then once a month
Alpha Spa - once a week
Quit all sugar substitutes...NO Diet POP... no prepackaged foods.
eat more fresh vegies and fruit.
Drink more water
This has taken me for horrible pain, fatigue and brain fog to feeling like I'm actually ...almost a normal human being.
I forgot the two things that have helped me the most.
Novacaine shots wherever it hurts and High dose magnesium, vit c and b IV's once a month.
1. stretching daily, beginning upon awakening and before
getting out of bed.
2. heating pad
3. warm, not hot, baths
4. mirapex, a parkinson's drug. this has helped tremendously
the aches and pains
5. evening primrose oil
6. OPC3 for stamina
7. ambien & zanaflex for sleep
8. zyflamend pm for sleep
9. avoid allergens & irritants. change pillowcase daily
all the above is for fibro
for an epstein barr flare i add
1. morinda capsules, noni juice or mangosteen juice
2. thim j capsules
3. a prescription anti viral
thanks for the great topic!
this is a GREAT idea! thanks.
I'll share what has helped me the most with specific symptoms, but please keep reading for the real thing that gave me my life back.
Nature's Sunshine Chromium GTF (no other brand worked) - gave my muscles the energy to get through the day after feeling like each limb weighed more than 100 lbs - also helped greatly with severe hypoglycemia
Standard Process Magnesium Lactate (no other brand OR form of magnesium worked) - gave me great relief from the anxiety and emotional roller coaster, plus helped me to sleep better and more
Nature's Sunshine Vitamin B6 (again, no other brand worked for me) - rid me of my constant palpitations and arrhythmias, and even "cured" me of mitral valve prolapse
Brain fog has been helped tremendously by a few things - not sure which had the most effect: The Lecithin from Lewis Labs, L-Tyrosine, L-Phenylalanine, and I recently began using Ultimate Brain Support by Real Advantage Nutrients.
Energy has been improved to varying degrees by a few different things. One recent thing is Taurox SB drops - these help the fatigue by balancing an overactive immune system. (I tried the NADH mentioned by someone above, but if your cells are "too open" like mine, this will act like caffeine and you'll end up wired and shaky and weak and more exhausted.) Rhodiola Energy by Enzymatic Therapies is something I'm experimenting with and I'm cautiously optimistic.
There is a whole list of other supplements I could name here, but I'd rather tell you what will work for everyone, regardless of symptoms or causes. (Notice I didn't say "cure" - everyone will see big improvement from this program, but it's up to individuals to remain long-term vigilant to make it work.)
Metabolic Typing Program. WAIT! Before you say "I read the book, took the test, did the diet, and didn't feel any better," let me explain that I'm talking about doing the comprehensive testing and working with a specially trained counselor. After losing 2 careers, and being almost bedridden for 2 years plus horrible trouble for a year before and after, and struggling since age 3 with this hideous dysautonomia, I finally have a full life again. Perfect? No. But my bad days now are fewer and much better than my good days ever used to be. And I have a strong suspicion that if time and money allowed me to follow this program at 100% commitment for another couple of years, I would feel awesome every single day.
Through a series of at-home tests (you buy the kits and equipment, then send in your results) plus a hair analysis and a huge questionnaire about your symptoms, they put together a long report about you. Your body chemistry is individual, and they understand that and work with you as an individual - they don't care what label has been put on your health. They go for the cause - what is out of balance - then teach you how to eat and add supplements accordingly. It's the most amazing thing I've experienced, and completely reinforces what I believe, that illness is due to imbalance and ONLY thru whole-food nutrition can we heal, not poisons better known today as prescriptions.
After just the 2-day pre-test meal plan, I went from more than 5 years of eating every 90 minutes due to hypoglycemia (yes, even after years of no sugar or fruit!) to just 3 meals a day. After just 2 weeks on the nutrition plan I felt an upswing in my energy and mood. After 6 weeks of that plus slowly adding supplements, I could see how dramatic this could be. I then experienced 6 or 7 solid weeks of feeling energetic and motivated! When I slid backward, I retested and learned that my body chemistry had shifted so much that we had to rework our plan (that is to be expected). Again, the improvements expanded. And on and on.
You must be vigilant to make this work. But it is OH SO WORTH every minute, every penny and every bit of effort to stick with it. Gang, I can't urge you strongly enough to look into this. It's about being healthy for life, not just treating our wild symptoms. As I said above, it may not cure anyone, but you do NOT have to continue losing jobs, partners, families, self-esteem and more. Your illness CAN become part of your PAST!
Best of health to all!
Some things that are helping:
Sleep: Xyrem. It's been a life saver for me: I get good deep sleep and wake up refreshed. Since starting on xyrem, my aches and pains have lessened, I stay alert all day, and have a lot of subtle improvements (including weight loss).
Hormones: I take armour thyroid, cortef. I feel very stable now, and as I get better, the doses are being cut.
Infection: I treat myself for candida on an ongoing basis, with diet, and with rotation of anti-candida supplements. I also take a probiotic everyday.
I take Proboost for the antiviral effect. When I start to catch a cold, my doctor tells me to take it 3 times a day for a few days. Otherwise, I take one every morning.
Nutrition: My way of eating is to avoid gluten, eat lots of fresh veggies, and plenty of good quality protein.
I avoid sugar and too much starchy foods. I rarely have processed foods, and avoid transfats and high fructose corn syrup like the plague.
Sam-E for mood and joint pain (I notice right away when
I miss taking this one)
Good all around vitamin/mineral supp.
Cod liver oil in a kefir smoothie everyday.
Magnesium 3 times a day, once with malic acid.
Extra vit. D3
Milk thistle for liver health.
I have to say, I was doing all this and not seeing a dramatic improvement until I started taking xyrem. I think acheiving deep sleep allows all the supplements to be put to good use.
At the first of April, I started the methylation cycle block supplements. Within 2 months, I noticed definite improvement. I sleep better, dropped the female hormones, and take less armour and cortef.
Look for any thread that discusses methylation supps, find rich vank, and click on his name. You'll find the information there.
Update 11/29/07: I am being treated for lyme disease. Not mentioned earlier in this post is that right after posting that I was near remission, I had a terrible relapse. I just happened to go to a doctor who is a LLMD (lyme literate) and he recognised that I might have lyme and tested me for it.
I still recommend all the above as helpful for me, but also hope everyone with either CFS or FM find a LLMD and get tested. Lyme is treatable, but progresses (slowly for me, as in decades) and is worth the trouble to find out if that's the underlying cause of illness.
[This Message was Edited on 02/08/2009]
Hi Daisys, I'm interested in "SAMe" Can you share with me, information please. I am presently involved in some research trials conducted by a University here in Melbourne Australia, I am now into the 2nd. week of the trial, six weeks to go. Xyrem is not available here nor is Duloxatine. Very strict and so slow if ever to release them here. I have read a lot of favourable reports from those taking Xyrem or Duloxatine. Would you like to add anything that might be of interest that I might like to share with my Doctor.
Kind regards, ilikasip
I WAS DIAGNOSED WITH FMS AND SEVERE MFS ABOUT 3 YEARS AGO. I HAD TEST AFTER TEST WITH X-RAYS, MRIs AND NOTHING REVEALED WHAT WAS CAUSING MY PAIN. IT BECAME DEPRESSING WHEN MY EVERY TEST CAME BACK NEGATIVE FOR ILLNESS. A NEGATIVE RESULT FOR ILLNESS SHOULD BE GOOD NEWS, BUT IT BECAME DISTRESSING AND FRUSTRATING BECAUSE MY SYMPTOMS COULD NOT BE EXPLAINED. I FELT THE DOCTORS THOUGHT I WAS MAKING IT ALL UP, LIKE I WAS A HYPOCHONDRIAC OR SOMETHING. I JUST WANTED TO KNOW WHAT WAS HAPPENING TO ME. I THOUGHT I WAS DYING (SOME DAYS WAS WILLING TO DIE THAN TO FEEL THIS PAIN ANOTHER DAY)OF SOME TERMINAL ILLNESS THAT THE DOCTORS COULDN'T LOCATE. EVENTUALLY I WAS DIAGNOSED. IT TOOK 5 DOCTORS AND 3 YEARS TO FIGURE OUT WHAT WAS HAPPENING AND 3 MORE YEARS TO ACCEPT MY CONDITION. I HAVE BEEN FIGHTING IT EVERY STEP OF THE WAY. I USED TO BE A VERY HIGH ENERGY PERSON. FINALLY AFTER 6 YEARS OF PAIN, I SURRENDER! TAKING CARE OF MYSELF IS NOT SOMETHING I DO WELL. THIS DISEASE REQUIRES A LOT OF SELF-DISCIPLINE. THANK YOU FOR THE ADVICE OF TRYING ONLY ONE SUPPLEMENT, MEDICATION, REMEDY, ETC. AT A TIME. I WOULD HAVE NEVER THOUGHT OF THAT AS BEING SO IMPORTANT. I JUST BEGAN TAKING 1000 MG OF CALCIUM CITRATE AT NIGHT AND 250 MG OF MAGNESIUM 4 TIMES A DAY. HOW LONG SHOULD I WAIT UNTIL I ADD SOMETHING ELSE?
I tried to start an exercise program so many times and every time I started I would have a major flare.
All the suggestions said to exercise at your own pace. Well, when you go from a "normal" life to a life with FM how do you know what your pace is.
I exercised too much and too hard. I couldn't keep up in even the most beginning classes and would leave feeling overwhelmed.
Finally I found that I could get in a pool and just kick around with a kick board and after about 2 weeks of this I felt so much better. Now I'm walking 30 + minutes a day since the pool is cold. (I think I will join a gym that has a pool, it is so much better for me)
No strength trainind in the beginning. And as I've added in strength training I'm doing it very slowly, and only using my body as resistance. Eventually I'm sure I will be up to weights or resistance bands. But starting so very slow, and slowly building up has helped so very much.
Also eatting a balanced diet with low sodium. Also I found I have a slight allergy to wheat so I stay away from that.
I do have flares still, but there is much more time between them and it is much easier.
So to summarize. Find a very gentle exercise that's right for you....mine is working out in the pool.
Take strenght exercises very slowly and work up very slowly.
Eat the best you can.
Get tested for food allergies.
Take care of you!
Remember, if you aren't well, you can't take care of anyone else.
Keep the best attitude you can. Seek out fun. Try to have fun in everything you do.
Sure, I'll respond in a separate post, don't want to get off topic here.
Daisys that's great, I'm still learning all of this posting thingo, how do we go about as you suggested, do we pm or remain in open forum? Cheers, ilikasip.
If there's a private message feature on this board, I'd like to know about it, too.
I did start another thread.
Hi, I had a bit of a look around and saw this....
# Email addresses and instant messenger information MAY NOT be shared on the message board for safety reasons. They MAY be shared in the chat rooms at your discretion.
I am very aware of the dangers and (at your discretion.)
I have not followed up the info there though.
Monkeyman, so good to see someone talking about EFT (Emotional Freedom Technique). Wanted to mention two more website to get info on it. www.eftupdate.com is the psychiatrist Patricia Carrington's newsletter about the latest in EFT research and application. www.eftsupport.com gives more info and a list of practitioners. I have used EFT for myself and my clients for years and have seen people experience great relief for health and mental issues. The hardest part about it is remembering to do it. If anybody has questions please feel free to ask and I'll answer as best as I can.
the things that helped best against...:
(Fresh and/or cooked as a tea, or used use it with exotic foods)
- Fibromyalgia pain
* Magnetic field therapy
(My shooting/rheumatic pains basically completely disappeared!)
all the best
When you post about what workds for you, could you please identify whether it is for FMS or CFS? They really are two separate things. THanks
For others out there, that are in the same boat as me financially and have FM.
I too am a nurse, or had been for at least 9 years and a manager of an assisted living for two. It was the stress and surgery then pnuemo that did me in.
What I do is what I can afford. If you can afford supplements, thats great. I wish I could! (I at least have insurance that will cover my meds but not supplements or herbs, etc.) I totally believe if I could all these would help and make my life easier.
Relieve stress, that would be great but I have two teenage boys, do foster care for another teenage boy and cannot work currently!
What do I do that helps:
1) First and formost...have a great general practioner!
2) Tramadol four times a day (for pain)
3) Lyrica two times a day (for pain)
4) No Xanax under any conditions, it interfers with the Lyrica.
5) Relpax for Migraines
6) Rantadine for reflux
7) Aleve for aches in joints that the others do not reach
8) Crochet (when my shoulders do not ache)
9) Sleep on my couch (I haven't slept in my bed for 6 months) *I have tried but just cannot do it and cannot afford a different bed.
10) Keep my house cool (under 70) especially at night because of the night sweats.
11) A lot of liquids to keep my bowels regular and my joints less painful
* I cannot take prednisone or codiene as I have very painful reactions to these meds. They make my symptoms worse.
A healthier diet would be great, but it takes all I have to fix three teenage boys and my husband something to eat, let alone try to change my eating habits. Unfortunately, healthier means more expensive, and I just can't do that.
I don't know if this will be much help, but I hope it helps others out there that are where I am at.
My hopes is that someday healthcare will realize the benefits of natural remedies and homeopathy medicine and it will be a part of prescriptions, but unfortunately our healthcare system leaves a lot of room for improvement yet. (Sigh, I should know, I am in healthcare!)
Everyone, take care and have a blessed day,
[This Message was Edited on 11/05/2006]
[This Message was Edited on 11/05/2006]
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