Share What Works For You

This question has been around for a while. Early humans were said to resort to ‘healing’ when sick, which includes the use of herbs, earth and other elements along with rituals. Then the Romans introduced ‘medicine’ as we know it, or today’s conventional pharmacology (also called traditional medicine). Modalities in the East like acupuncture, reflexology and other non-conventional medications and supplementations, brought complementary alternative medicine to our attention, especially to address illnesses that conventional medicine has so far no answers for, like rare and orphan diseases. Today’s buzz in the medical community is a patient-centric practice called integrative medicine where a team discusses with a patient not only healing and medication but also lifestyle changes, attitude and even spirituality that seem to work from the patient’s experience and point of view.

The last thing we want to hear from a caregiver is that there is no cure for our rare condition or that it will take a while for scientists to come up with solutions. I know there are a lot out there who are willing to try anything within reason to find effective relief, even treatment.

Some people put their faith in pharmaceuticals because they're better researched, while others are more comfortable sticking to natural treatments like supplements, even types of food like dark chocolate (for pain). Some take a combination of drugs and supplements (along with other treatments) to get significant relief.

How about you? What medications and supplements – even therapies – have worked for you? Which ones have you abandoned?

I am going to ignore the prescription medication that I am on because it is nothing special and doesn't work wonderfully.

One thing I was recommended to try is a supplement called D-ribose. It is a naturally occurring sugar. Here is what I found about a pilot study:

Abstract
OBJECTIVES:

Fibromyalgia (FMS) and chronic fatigue syndrome (CFS) are debilitating syndromes that are often associated with impaired cellular energy metabolism. As D-ribose has been shown to increase cellular energy synthesis in heart and skeletal muscle, this open-label uncontrolled pilot study was done to evaluate if D-ribose could improve symptoms in fibromyalgia and/or chronic fatigue syndrome patients.
DESIGN:

Forty-one (41) patients with a diagnosis of FMS and/or CFS were given D-ribose, a naturally occurring pentose carbohydrate, at a dose of 5 g t.i.d. for a total of 280 g. All patients completed questionnaires containing discrete visual analog scales and a global assessment pre- and post-D-ribose administration.
RESULTS:

D-ribose, which was well-tolerated, resulted in a significant improvement in all five visual analog scale (VAS) categories: energy; sleep; mental clarity; pain intensity; and well-being, as well as an improvement in patients' global assessment. Approximately 66% of patients experienced significant improvement while on D-ribose, with an average increase in energy on the VAS of 45% and an average improvement in overall well-being of 30% (p < 0.0001).
CONCLUSIONS:

D-ribose significantly reduced clinical symptoms in patients suffering from fibromyalgia and chronic fatigue syndrome.

Now I do not say it works brilliantly for me because it doesn't but it is a lot better than I have been without it. I would recommend it to anyone with fibro because at best it will make you feel a lot better at worst it will leave you the same (certainly no worse).

Mikex

Great post Mikejudd!

Hi Armando!

Great post! I may have to make installment contributions to you on all of this, but first, I am going to partake in my very best therapy of all, spending time with my grandson! We'll see if I can't just win a game of Monopoly, as he has already mastered it at the age of 9!

Be well, be happy,

SK

Hi mikejudd its suzyq what brand and dowager of d ribose do you use I’m the same as you Ive tried so many meds since Jan 2011 with no success and some bad side affects

Hi SK! We'll look forward to your posts. Thank you and enjoy your time with your grandson! Good luck on your monopoly (looks like you'll need it too!).

Hello Armando,

Here it goes...

I have gone to a Chiropractor for decades, long before I realized I had a genetic disease, it started with hard work and my first time of being rear-ended in a car accident. Fast forward at least 3 decades and 2 more times being rear-ended and the Chiropractor was who I was still wanting as I was loaded into the Ambulance. This took me to my GP and a myriad of tests, then neurologist, all said go to Pain Management, so I went through all the shots for disc and facet damage, no one seemed to notice stenosis or SI joint, perhaps they were not 'mentioned in the Dr requests? The entire aim was to perform a task, while awake to see which disc was causing pain, in order to burn out the nerves. Everything came to a screeching halt at this point as I felt very decieved. Five pain management Doctors later, I say no more, May have helped some before the injections wore off but in the end, was worse, it just furthered my downhill slide. Two of the top University hospitals and a local neurosurgeon just said I wasn't a candidate, that surgery would only make me worse. Even a massage therapist could barely touch me now. I had tried accupuncture at the beginning, but the 3 times a week you needed to go was too much car riding and too long there, and out of pocket, herbs were helpful from them, they were the only ones who could ever use tems on me and not hurt me! Was taking Actiq for pain, a fentnyl lolipop until a specialist at Hopkins went through the roof about this, so that ended that relief. It is by far the best thing I have used for pain, but was told it was only to be used by people who were never going to get better! Found the patches worthless. On to morphine, it helps to break pain cycles and to ride in the car, of course I cannot drive and take it. Tried Savella, seemed to help some minor pain, but brightened my mood, until I started to shake uncontrollably, so end of that. Gabapentin was first given for Sciatica, helped nerve pain, but made me 'reel', now onto Lyrica. Does the trick on the Sciatic pain, causes fluid retention, have to go off from time to time to alleviate that. After the second neurologist thoroughly examined me he determined that my only problem was that I was 'stiff', sent me to the pool, did well at first with Arthritis swim, then took swimming lessons, really helped until one day my body started to 'spaz out' Severe muscle attack, wrists pounding.

End of this installment...

You're a walking med journal SK! We'll look forward to hearing from you more. But don't stress your self on it, okay? Have a great day, SK!

Armando, my dear, those are some 'spill your guts' kinds of questions, and lots of them, so hang on! I know it sounded frantic, but it is really not, just as brief an explaination as I can give, and I'm just getting warmed up! You must fully realize the years of hell we go through just to get diagnosed, then we are on the trial and error with meds, tests, proceedures, Specialists... LOL! More later!

He won again, hope he is as successful with everything in his life!

The honest answer is that the relationship with my dog has provided the most relief! He always senses when I’m in pain and sticks by my side no matter how I’m feeling.

I have taken all of the current fibromyalgia medications, tried supplements, acupuncture, physical therapy, pool therapy, chiropractic, massage, yoga, meditation, list goes on and on…

I’m tired so this is all I can type for now - I wonder how many other people find that their pets have amazing healing powers? :slight_smile:

Hi there. I think it is up to six 800mg tablets a day and the brand is Precision Engineered. Website if you are interested :). Mikex

Dogs are the best therapy of all. Without my Labradors (especially the eldest one who is sadly no longer alive) I would not be here. Their love and devotion got me through my darkest days. Mikex

Hi Sunflower,

Some people would think I am crazy but I love watching my fish swim around. No licks, nothing to cuddle but it's almost hypnotic. They go back and forth. And they swim over to look at me.

My son keeps me laughing and smiling. If I focus on him his laughter relieves the tension.

I tried massages, Tens unit, Darvon, Percocet, supplements and exercise. I would say the exercise has been the most beneficial. Doing the right amount is a challenge.

Gee, why did I have to be so indepth???????????????????????

SK,

I think this is a good respons to the question. I like the chronology of it all. And the fact you can remember all the details. It is very positive that inspite of your trials you keep on trying. One day I think you will succeed in finding what makes the pain more tolerable.

My car accident was in 1989 and I was in traction with 3 herniated discs and knife like excruciating pain day and night.I was on all sorts of pain meds and I know I tried numerous things that did nothing. My problem is that is was so painful my memory is fragmented.

Fortunately I do remember a lot of positive things in my life from that time period and I am glad about that. i want my life to be full of more happy memories. I have 30 minutes to journal before I go to sleep at night. I ask myself "What do I want to remember today?" I write the things I hope for, the things that me laugh, the things that were special and beautiful. I put in two sentences only two symptoms that really sucked that day. Because I know in my reality only two major symptoms stand out that day. I have 30 in a week but I have to choose only two that desrve to share the page with my list of happy memories. With that being said I hope people will understand why my first answer was brief ... besides the point my back was giving me grief. SK, I do enjoy your posts and you should feel comfortable in writing whatever fancies your mood that day because I do ...

Hi SK, You overachiever!

Hi Dozer!

I know exactly what you mean - I remember having a small fish tank and I loved watching the fish swim around. I don’t have kids, but was recently hanging around with a friend and her two grandsons. Even though I was tired and in pain, seeing the boys interact and playing with the 3 year old derailed the pain train. I also tried massages, Tens unit, pain meds, etc. I have not found the balance when it comes to exercise. I seem to overdo it and end up in more pain.

Hi Mike!

I know what you mean about dogs getting you through dark times. My dog is a constant source of joy. The pictures you posted are adorable.

I recently purchased the following - have you heard of it in powder form?

http://www.amazon.com/Douglas-Labs-Laboratories-Corvalen-340/dp/B004W3AKYC/ref=pd_sim_hpc_61

I’m hoping this product is legit-

Hi sunflower the product is legit I have a book called from fatiqued to fantastic written by Dr Jacob teitelbaum he developed it while he was in medical school and he recomends CORvalen form of d-ribose 5 grams 3times a day for the first 3 weeks. and then 2 times a day this version comes with a. 5 gram scoop its a 280gram container and will be enough to tell you if it works I haven't tried it but if it works for some of the others its worth a try hope that helps

Hey Girlfriend!

You are a 'very togehter lady'! We always have to strive for the positive, I so often ask myself what the purpose of this illness is, I feel that I have always been a genuinely compassionate person.

But here is what all of this did for me, rather than against

It gave me a short time with my dear baby Brother before he died of cardio myopathy brought on by the AIDS virus, He was diagnosed at 29, died at home with my Mom at 40.

It has given me time with my Mom, who now lives with us who just turned 80.

It has allowed me time to spend with my Grandkids and Great grandson...

So those are a few. you are so right, loved ones have to be loved, because once the time is over, it is forever over, they are only little once, they are only here for awhile. Tomorrow is promised to no one.

That's about all the 'spilling my guts I can do right now...

SK