D-Ribose

[Ree4tu]

Has anyone had success with D-Ribose? I am confused about its role in helping fibromyalgia particularly because it is classified as a type of sugar.  I thought sugar was bad for fibromyalgia because it promotes inflammation or is this type of sugar not considered to have an inflammatory effect?

[ObiQuiet]

Hi there.  For the past 3 weeks I've been taking D-Ribose powder, and mixing it with a Magnesium Glycinate formula (with Calcium, Malic Acid, Potassium, variety of B vitamins, etc), and Vitamin C (with antioxidants, electrolytes and B vitamins) on the recommendation of my aunt.  She has been taking this for months and it has helped her enormously - she suffered badly with Fibro for years.  My symptoms have been much more tolerable than hers, but still a concern in my life.  

I can't believe how much it has helped me, and with things I didn't expect.  I have IBS and I am MUCH more comfortable now.  My energy is dramatically increased, my body feels so much more comfortable - my neck and back isn't a constant knot anymore.  

I've been off caffeine for years, and hate anything that makes me feel jangly.  I was concerned this energy increase might make it feel like that - not at all.  I just generally feel good (and have been known to randomly call out "Is this what normal people feel like??")  My most amazing revelation was when I realized that I felt as good at 7pm as I did at 10am - AND that at 10 am I felt really good!!

Just as a comment regarding the side effects of Magnesium: apparently Magnesium Oxide & Magnesium Citrates can cause diarrhea, and aren't absorbed as well.  Magnesium Glycinate is supposed to be better absorbed and doesn't cause diarrhea. I am just getting this info off the pamphlet that my supplement comes with, but I can attest that it does not cause me any "bathroom issues" :-)

[robbomac3]

Re the Magnesium and its role in laxatives.

I've found taking magnesium very useful, and if I take large amounts,, around 10,000mg (10g) it can have the same effect.  The way I've found around this, after reading up on it, is to take small amounts regularly.

I take a variety of good multi-vitamin / multi-nutrient supplements, and boost these by taking extra sports drinks mixes or magnesium powders that have a variety of different types of magnesiums in them.  The cheapest one is Magnesium Oxide and so many will contain a large about on this type but its also used as a laxative, & its harder to absorb.  I've found a few brands that have three or four or five different types of magnesiums, malic acid (which helps the absorbtion) and also some have other nutrients.  For variety I tend to take different ones from time to time.

I've found it helps with the energy and the sports drinks are probably helping with potassium and other nutrients too.  I have gotten used to how much I need how often, sometimes I'll take small amounts morning and afternoon, sometimes I'll take them 3 or 4 times a day, other times I'll take them every second day.  I think a lot of it depends on what else I'm eating.

If I eat a lot of fresh green vegie leaves like spinach, kale, Warrigal greens etc I need less supplement.

What I've been doing more recently is to mix up half a teaspoon of Mg powder (about 2 to 3 g of Mg)  with about 1g of Vitamin C in the morning and drink that in water or juice.  

If the amount you are taking is having a laxative effect, reduce the amount as well as divide it up through the day and take it at it two or three different times to spread the dose out and then slowly increase that over time.  The bowel tends to adjust to magnesium and also vitamin C can be taken in the same way.

In time you may find that your body is able to be supplemented with larger amounts than you can take in initially and then monitor if that is beneficial for you, or not.

Hope this helps

p.s. I found this page looking for D-Ribose info for CFS and Fibro

[Ladytexan2]

Hi I just read your question and I had to write back and tell you it definitely is helping me and it started helping right away!  Apparently it is a natural kind of sugar the body produces and they have found that people with fibromyalgia do not produce enough of this stuff I want to say it's ATP or something like that that the muscles need to recover.  It also has given me more energy and lifted my moods so as not to be as cranky.  I have only been taking it 2 or 3 weeks and it's almost time to buy another bottle.  I have only found it in one store here so far but I have not checked the vitamin stores.  I got it at a little grocery store that carries a lot of herbal supplements and it was around $21 maybe a little more with tax but money well spent!  Good luck and God bless you and yours with each step and breath you take.

ladytexan2

[DocAnn]

Dr Haiden here.  Just thought I would try to clarify the D-ribose a little for you.  D-ribose is a special sugar that is used in the mitochondria to make ATP.  Think of the mitochondria as little energy producing batteries and ATP is the energy currency they put out. We think that mitochondrial dysfunction or challenge is involved in an increasing number of health problems in some fashion, including fibromyalgia and chronic fatigue.  But the mitochondria produce energy from food in many enzymatic steps that require specific nutrients.  To add to the complexity, the enzymes may be more or less efficient in different people depending on genetics or exposures to various things that can be toxic.  So, the D-Ribose can be important for some people, but still only part of the solution.  Hope that helps.

[PlateletGal]

"I don't think it's just a coincidence, do you?"

Nope. I worked with a nurse who had autoimmune type issues after her husband served in the Gulf War. Her husband ended up having Gulf War Syndrome and she swears that her health issues were due to his illness.

According to Nicholson's website,  a European study that about 6.5% of CFS patients came down with their illness after a blood transfusion.  Many of these patients later were found to have systemic mycoplasmal or other bacterial or viral infections.

[Ree4tu]

The doctor on his staff works in a community hospital (not a veterans hospital) near my home.  I am not sure what she does for the hospital.  The interesting thing is I am also located near a veterans hospital.  Evidence that the mycoplasma infections from the Gulf War have definitely been here in my area!  Also my cousin is a nurse and took care of a Gulf War veteran.  She now has an autoimmune illness. I don't think it's just a coincidence, do you?  This gets more and more interesting!

Ree4tu

[Ree4tu]

Thanks, I will check out muscleze.  I use to take about 1,000 mg of magnesium a day.  It did help with the muscle spasms, but gave me diarrhea - can't win!  

I think people with fibro lack a lot of nutrients... I have started on a liquid multivitamin supplement to hopefully help with this.  I was told to use a liquid because it's absorbed better than a pill.

Thank you again,

Ree4tu

[PlateletGal]

"I just realized someone on his staff is located where I live!"

That is great ! I'm a little jealous, but happy for you ! ; ^ )

We are confirming the date with Dr. Nicholson... looks like it will be in early October. I'm happy that you've had a chance to check out his website and read the research... he has a very impressive bio and I also believe he has CFS.

[kitty51]

Lack of magnesium is another one,thats give you bad muscle spasms,so my chiro said to get muscleze its more than just magnesium and i have been on it now for about a month.I started to feel the difference after about 2 weeks,I can get out of bed now without the stiffness in my joints,still have aches and pains though.when it get too unbearable i use my tens machine.We lack this and that and have to much of this and that, the more i read the confusing it gets,I would have spent so many $$$$$$ on different meds and natural meds,and havent advanced to far.Maybe the answer isnt too far away,and its probably something simple like eating peanut butter LOL................

[Ree4tu]

I am very excited about this. I have been searching for the cause for a year now and I am sure others have been searching much longer.  I never believed in just treating the symptoms.  I agree, it is helping with autoimmune diseases as well. My cousin has RSD and this information has given her hope as well.

I will have questions for Dr. Nicholson.  I think his work is amazing from what I read. I just realized someone on his staff is located where I live!

Thanks so much

[PlateletGal]

Hi Guys,

I'm thrilled to hear that you are interested in finding the cause of our condition and not just treating the symptoms. I think that the research that has been done on CFS & fibromyalgia patients isn't helping only our syndomes... but it is also helping people with autoimmune diseases as well.

I am THRILLED to announce that we will have a physician (Garth Nicholson, Ph.D) here very soon to answer all of our questions about fibromyalgia, CFS and the role that mycoplasmas play in these illnesses. I will keep you posted and in the meantime, you might want to jot down some of your questions (when the brain-fog isn't too bad, that is!)

[Ree4tu]

Thank you so much for the information.  I believe my natural practitioner has a call into Dr. Nicholson's facility. I researched mycoplasma infections and I have every symptom.  I almost can't believe it . Why weren't we all tested for this, like it's a secret. Also what's interesting is I recently stop taking antibiotics which I was on many years for acne and that's when this all seemed to get worse.  I read that antibiotics can help with mycoplasma infections.  
Also read about Lyme Disease and how it doesn't show up in blood tests which was in my case.  My natural practitioner suggested another type of test.  To think of how many people are suffering and not being treated for the appropriate illness makes me even more sick. I give you a lot of credit for discovering this. You must have done so much work on this, so thanks again. Please persuade Medhelp to allow you to get this information out, along with effective natural treatments. It would help so many.

My Best,

Ree4tu

[katika29]

With regard to what to discuss on your HealthPages: I would like you to explain to us what Drs. believe is happening to our bodies when we have fibromyalgia. It would be great if you could educate us with the knowledge you have acquired, in a simple to understand text. For example, I have no idea what mycoplasma infections are and how they affect us if we have fibromyalgia.  It would be helpful to all of us who have not done so much research or don't really understand the medical jargon relating to FM and CFS,  if you could explain in simple terms what is happening chemically or biologically to us. In addition, I would like to know how one goes about finding a natural health care provider who accepts medical insurance, and is well versed in the protocol of remedies which would be helpful in curing or at least alleviating the pain we are all dealing with. It would also be great to learn which natural vitamins or even prescription drugs have been found to be beneficial for Fibromyalgia and Chronic Fatigue sufferers. Thank you for the care and concern you show for everyone in the comments you post.

[PlateletGal]

Your physician may want to google "Dr. Garth Nicholson --- The Institute for Molecular Medicine". I believe Dr. Nicholson has a lab at his non-profit organization, which tests patients for mycoplasma infections.

[Ree4tu]

Thank you for your response.  It seems my natural practitioner is having a difficult time tracking down a lab which tests for mycoplasma infections. They called the lab which use to test for them and they no longer do it. They have phone calls in to some other places, but haven't heard anything yet.  Also I was hoping you could share the treatment you receive to kill the pathogens.  They gave me colloidal silver for now until they research it a little further. Anything you could share would be very helpful.  I will be excited to see what the expert physician has to say.

Thank you again,
Ree4tu

[PlateletGal]

Hi ! I'm sorry... I saw your post earlier and have been meaning to respond, but didn't get around to it in time.

I have read promising studies on D-Ribose in both CFS and fibromyalgia patients. I used to take D-Ribose and the first few months, it helped. After that, it didn't seem to give me that boost of energy that I had after I initially had. (the same with raw apple cider vinegar... have you tried that in your drinking water ?)

I am soooo happy to hear that your healthcare provider is looking into testing for you for mycoplasma infection. I am on a similiar treatment plan that is killing these stealth pathogens and although it is a long treatment, it is working for me. I have contacted a physician who is an expert on these mycoplasmas and we hope to have him here soon in the fibro/CFS forum, answering all of our questions. I'll let you know when we have a date scheduled.. I'm very excited about this opportunity and know that other members are as well !

[Ree4tu]

I am going to answer my own question to help others.  I spoke with my natural healthcare provider today and she said D-Ribose is helpful for fibromyalgia to restore cellular energy.  It does not cause inflammation.

Interestly, I received the results of my hair analysis and it indicated my body is not properly metabolizing sugar and carbohydrates due to a severe deficiency in potassium.  Potassium is necessary to transpost glucose across the cell membrane to perform basic body functions. It also showed deficiencies in other minerals indicating my body is not properly absorbing them.  I am wondering if all people with fibromyalgia do not absorb nutrients properly and what causes this problem. I also had metal toxicites of copper, mercury and aluminum. Any one of these problems can disrupt the entire body and lead to multi-system dysfunction.

My natural healthcare provider is also looking into testing for mycoplasma infections and various viruses. Will post my findings in hope of helping others.

For now she suggested a liquid multivitamin and some supplements to support sugar metabolism, nerve function, and rid my body of bacteria and other toxins.

I hope this information helps someone.

Warmest Regards,
Ree4tu