I have had a complicated medical diagnosis that includes Chronic Fatigue Syndrome (CFS) for about ten years now. A couple of weeks ago I discovered the supplement D-Ribose. Let me preface this by saying I am not your typical user of alternative remedies or treatments. I don’t normally use supplements, oils, or herbs. About the farthest I usually stray from traditional medicine is a multi-vitamin or iron tablet. But a lack of medical insurance coverage and no access to the fabulous doctor I once had puts me in a jam.
Though eager to share my experiences, I put off writing about it until any side effects had a chance to either manifest fully or resolve. It can be difficult to tell if symptoms you’ve had before — like nausea, dizziness, and insomnia — are actually side effects of a new treatment or part of the constellation of problems associated with CFS and fibro. I’m assuming I’ve waited long enough, and that whatever is still sticking around is what I’ve got left to deal with.
The reports I read online regarding the use of D-Ribose indicated improvement of classic CFS symptoms. This information came from anecdotes of fellow CFS sufferers as well as the websites of well-respected medical institutions. A few claims promised improvement of Restless Legs Syndrome (RLS) as well. So I placed an order and gave it a try.
I have had moderate improvement in energy levels and cognitive function. Unfortunately these are very short lived, as in about three or four hours of benefit per dose. And then it is gone. If I miss a dose or two, fatigue is knocking at my door.
The supplement has stopped one of the longest spells with an irregular heartbeat that I’ve had in years. I was diagnosed with mitral valve prolapse as a teenager and try very hard not to panic when my heart gets out of whack. Most of the time it resolves on its own. This one dragged on for a couple of months and had me concerned.
As happy as I am for these improvements, D-Ribose is not a miracle cure. It seems to have peeled away a few very pesky layers of onion. There are still serious problems underneath.
The awful push-crash cycle is still present. This I learned the hard way.
I felt energized after about the third day on the stuff. So I got moving — housework, grocery shopping, a trip across the bay, and even walked a few laps around a local park. Boy did I pay for all that the next day, even with the D-Ribose. Although I had the extra short-term energy needed to do those things, I was housebound for a few days afterwards. So now the challenge is to use those little energy bursts very wisely and remember that there will be a crash to follow any significant activity, just like before.
The pain from fibro flares is magnified. The hurting is more intense, longer lived. I have had to rely on OTC painkiller every day. Due to chronic anemia, ibuprofen is my first choice. I usually tolerate it reasonably well, though prolonged use causes stomach pain. The stomach pain and discomfort I initially experienced from starting the D-Ribose has mostly subsided.
The biggest surprise has been my legs. For about two nights, there was no RLS, no constantly moving and rolling around. This was fabulous, except that staying in the same position while sleeping for several hours results in intense fibro pain when I wake up. It’s a give and take. A pain-free night is probably due to my changing positions often. A restful night means I’m most likely hurting when I wake up.
After about the third or fourth day on this stuff at full strength, the RLS was replaced by muscle pain, stiffness, and cramps. Those were not limited to the legs. I am perplexed by this as D-Ribose is used to treat muscle cramps in the legs.
Two nights ago brought the worst of it. Not only was the cramping and pain present, but the restless legs returned in full force. And this in spite of my taking the D-Ribose and an OTC med for leg cramps before going to sleep. To say that I was puzzled and disappointed was an understatement. Last night I discontinued the OTC leg cramps med and had a better night. By “better” I mean much closer to the status quo.
I’m supposed to use a Bi-pap machine at night when I sleep. Not even possible with all the tossing and turning and getting up and down with painful legs. The alarm goes off when the mask dislodges. That would wake up everyone in our tiny house, not just me. It is not helpful to alleviate the symptoms of some disease or syndrome if more pop up to take their place. The end goal of all this is to restore sleep and rest — to be a normal person again. I’ve still got a long way to go.
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