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Medical Forum / Diseases and Disorders / Arthritis / December 2005

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question for fms people

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Diane - 03 Dec 2005 05:22 GMT
my 31 year old stepdaughter has been on disability for 2-3 years now
with fms and a couple of other things. she's been seeing an fms
specialist who works out a cocktail of drugs tailored to each patient.
i've felt good about him until very recently. she was doing better but
is suddenly flaring to the point that the pain won't let her sleep. so
he's prescribed MORPHINE. have any of you ever heard of this being
prescribed for fibro? it seems way over the top and scary to me. she
takes it at night.

diane, worried
Jo Firey - 03 Dec 2005 08:02 GMT
> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 7 lines]
> diane, worried
>Im guessing she is taking hydromorphone,

So do I.  When there is nothing else I can take that will bring it down to a
level I can deal with.  If it lets her sleep I envy her a lot.  I have a
paradoxal reaction to it in that the last thing i'd do is sleep.
But it does stop the pain.  Drugs used to treat real pain seldom lead to
addiction.

Jo
chazepping@yahoo.com - 03 Dec 2005 10:42 GMT
Hi  Diane,
Has your stepdaughter tried D-ribose? I have fms and was getting worse
by the month...the pain and fatigue were getting close to unbearable.
Someone told me about D-ribose, and I figured anything was worth a try.
A couple of months later here I am, not "cured", but back to living my
life again. I was maybe a week or so into taking it when I realized the
horrible, unrelenting pain and crushing fatigue were getting much
better, and soon I was able to do things again, and reduce the
painkillers. I don't need them now, except maybe if I don't get enough
sleep for a few nights, and get a bit of a flare-up. Nothing, however,
is as bad as it was getting before. I wish there was a cure for fms,
but in the meantime, I'm staying on my D-ribose.
If you do a Google search, and type in "ribose + fibromyalgia" you
should be able to find some good information on it. If you can't, let
me know and I'll send you some links.
My email is chazepping@yahoo.com.
Please ask your stepdaughter to consider this...I hate for anyone to
have to suffer like that.
Best wishes,
Elizabeth

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
johnie - 03 Dec 2005 19:51 GMT
This is a SPAM SCAM... The only thing that D-ribose has been found
effective for is strengthening the heart after a cardiac event. There
is absolutely no data indicating that it helps FM in the slightest. It
is a sugar so a temporary boost in energy occurs when taken. There are
dozens of healthy and lots CHEAPER ways to temporarily boost your
energy.

Watch Your Wallet...

johnie

> Hi  Diane,
> Has your stepdaughter tried D-ribose? I have fms and was getting worse
[quoted text clipped - 27 lines]
> >
> > diane, worried
Nicole H - 04 Dec 2005 00:19 GMT
you're not completely correct.
there has been a study showing d-ribose can help with pain.  it can also
help with recovery after exercise.
and the post isn't spam as she's not selling anything to profit herself.
chazepping@yahoo.com - 04 Dec 2005 10:57 GMT
I understand that you´re trying to help people from being ripped off,
and those of us with fibromyalgia or other syndromes appreciate it, but
you should ask others who have tried D-ribose first. I have had fms for
at least 6 years, and this is the first supplement that has worked
consistently for me. I realize that every fms person may be different
and respond to different supplements/meds,  but to "diss" this one
would be to take away the relief that some of us may get from using it.
In your attempt to help others, you may be forsaking them the chance to
feel better.
You say "There is absolutely no data indicating that it helps FM in
the slightest".
Please see below.
(To the moderator: I apologize for the length of this post. If you´d
rather, I can post a link to the page.)

Research: Benefit of Ribose in a Patient With Fibromyalgia
ImmuneSupport.com

01-31-2005 Journal: Pharmacotherapy
Posted on MedScape 01/07/2005
Benjamin Gebhart, Pharm.D.; James A. Jorgenson, M.S., FASHP
Abstract and Introduction
Abstract
Ribose was added to the existing treatment regimen of a woman with
fibromyalgia, resulting in a decrease in symptoms. It has been
postulated that patients with fibromyalgia may have an alteration in
muscle adenine nucleotide metabolism, leading to depleted energy
reserves and an imbalance in cellular adenosine-triphosphate:adenosine
5'-diphosphate:adenosine 5'-monophosphate (ATP:ADP:AMP) ratios with an
abnormal energy charge. As a key component in adenine nucleotide
synthesis, ribose supplementation may be useful in such patients.
Introduction
Fibromyalgia is a syndrome that is manifested by generalized muscle
pain and additional systemic symptoms of fatigue, tenderness and
stiffness in multiple joints, sleep disturbance, and alterations in
bowel activity.
The specific etiology is unknown; however, changes in muscle histology,
energy metabolism, oxygen utilization, and the neuroendocrine
stress-response system have been postulated to play a role in the
development and persistence of this disorder.[1] Low levels of muscle
adenine nucleotides, reflected in depleted energy reserves and an
imbalance in cellular adenosine 5'-triphosphate:adenosine
5'-diphosphate:adenosine 5'-monophosphate (ATP:ADP:AMP) ratios with an
abnormal energy charge, have been reported.[2-4] The unknown cause and
varying presenting symptoms make fibromyalgia a therapeutic challenge
for practitioners.[5-7]
The management of patients with fibromyalgia requires the integration
of both pharmacologic and nonpharmacologic approaches. Pharmacologic
options have included tricyclic antidepressants, selective serotonin
receptor antagonists, analgesics, benzodiazepines, antiinflammatory
agents, and corticosteroids.[5, 6, 8]
Routine daily exercise programs, dietary modifications, alternative
therapies such as biofeedback and hypnotherapy, and nutraceuticals such
as S-adenosyl-L-methionine (SAMe) have also been explored.[9]
Unfortunately, less than 50% of patients achieve any meaningful relief
of their symptoms with use of those therapies.[5]
We describe the case of a patient with fibromyalgia who had symptomatic
relief when ribose was added to her existing treatment regimen. There
have been anecdotal reports on the benefits of ribose in patients with
fibromyalgia in whom conventional therapies have failed; however, to
our knowledge, this is the first published case of use of ribose for
this syndrome.
Case Report
A 37-year-old woman had daily episodes of intense musculoskeletal pain
and stiffness, mental "cloudiness," bouts of diarrhea, and sleep
disturbance. As she was a surgeon, these symptoms compromised the
skills necessary to perform her daily duties in the operating room. She
was diagnosed with fibromyalgia by exclusion of other diseases and
syndromes and in accordance with the American College of Rheumatology
criteria.[10]
The patient was treated with ibuprofen 800 mg twice/day, valdecoxib 10
mg once/day, diphenhydramine 50 mg-acetaminophen 1000 mg at bedtime,
and physical therapy once/day. She stated that this therapeutic regimen
had limited benefit and that the adverse effects from these drugs
further impaired her ability to perform her operative duties.
Approximately 7 months later, in addition to her regular drug therapy,
the patient began taking CORvalen (Bioenergy, Inc., Ham Lake, MN), a
ribose-based product. She took 5 g of CORvalen mixed in water
twice/day. She experienced no adverse effects, and after 14 days she
reported a decrease in her symptoms. Specifically, she noted an
improvement in sleep, mental alertness, a marked decrease in joint
pain, and normal stools. This trend continued, and after an additional
month of CORvalen therapy she reported near-normal functioning with a
major reduction in her symptoms.
After another month of taking CORvalen and feeling "normal," the
patient elected to discontinue the drug. Within 7 days, she regressed
to her initial fibromyalgia state, as reflected in joint pain, sleep
disturbance, morning stiffness, trigger-point flares, and diarrhea. She
resumed taking CORvalen, at the same dosage as before, and a major
reduction in her symptoms again occurred within 14 days. She noted
continual benefit for the next month while taking CORvalen. She stopped
taking the drug for a second time after this additional 30-day period,
and once again she experienced a reemergence of symptoms. When CORvalen
was restarted for a third time, the patient's symptoms again subsided.
At the time of this writing, the patient was continuing to take
CORvalen and was satisfied that her symptoms had abated.
Discussion
Ribose is a simple carbohydrate that plays a role in high-energy
phosphate and nucleic acid synthesis. After ischemia or hypoxia,
myocytes have decreased levels of ATP and total adenine nucleotides.
Several days are required for their recovery once normoxia has been
reestablished.[11-13] In patients with chronic hypoxic conditions, the
cellular energy charge may never be fully regained.[14]
These cells have the capacity to regenerate ATP; however, the pentose
phosphate pathway of glucose metabolism utilized in the formation of
the ribose that is needed to drive the regenerative process is slow in
both heart and skeletal muscle cells due to poor expression of specific
rate-limiting enzymes. Supplemental ribose has been shown to enhance
the synthesis of adenine nucleotides, rebuilding depressed energy pools
in both the heart and skeletal muscle after an ischemic or hypoxic
insult.[11, 12] Ribose bypasses the rate-limiting enzymatic steps of
the pentose phosphate pathway and accelerates the formation of ATP and
subsequent tissue recovery.[15]
Supplemental ribose is initially converted to ribose-5-phosphate,
subsequently forming 5-phosphoribosyl-1-pyrophosphate, a molecule key
to the synthesis of ATP through the de novo purine nucleotide pathway.
The safety of ribose has been investigated in standard laboratory and
animal toxicology models and in human studies both subjectively and
objectively. Investigators have concluded that ribose is well tolerated
at dosages of up to 60 g/day, with no significant adverse effects.[16]
Ribose has been shown to improve the energy recovery time in skeletal
muscle and to relieve fatigue, soreness, and stiffness after intense
exercise.[12, 13, 17] It also has been reported to have a beneficial
effect after high-intensity exercise in sports medicine.
One study concluded that ribose accelerated the replenishment of ATP
after intense muscle contractions,[18] and bodybuilders and sprinters
have reported subjective and objective benefits during exercise after
the administration of ribose.[18-20] However, other reports have shown
inconsistent results for ribose in relation to improving short-term
anaerobic exercise performance, muscle strength, endurance, or body
composition during cycling or resistance training.[20, 21]
Ribose has also been investigated for its potential medical efficacy in
both animal studies and human clinical trials. To date, the most
promising data have been reported in connection with the application of
ribose in cardiovascular disease. Both short-term and long-term animal
studies found that the use of ribose after myocardial ischemia resulted
in enhanced recovery of ATP along with improved diastolic functional
parameters.[22, 23]
Clinical benefits have also been observed. Patients with coronary
artery disease or heart failure have decreased myocardial ATP levels.
Daily supplemental ribose has been shown to improve cardiac function,
increase exercise tolerance, and enhance quality of life in this
population.[24]
Patients with fibromyalgia may experience an alteration in physiologic
muscle metabolism. It has been found that they reach the anaerobic
threshold in their muscles earlier, thereby using less of the available
energy-rich phosphate metabolites at maximal work capacity.[25] In
another study, patients with fibromyalgia were reported to have a
potential abnormality in high-energy phosphate metabolism, as evidenced
by significantly lower levels of ATP and ADP in affected muscles as
compared with patients without the disease.[2]
Theoretically, the effect of ribose on increasing the muscle energy
pool could reduce the metabolic strain in affected muscles and allow
patients to assume a more active lifestyle. Considering the known
musculoskeletal symptomatology in this syndrome and the reported
benefits of ribose in skeletal muscle metabolism and physiology,
supplemental ribose appears to have aided our patient in improving her
quality of life.
Conclusion
Fibromyalgia presents a continuing therapeutic challenge. Ribose is a
naturally occurring carbohydrate with documented medical benefits in
patients with cardiovascular disease. To our knowledge, this is the
first report to suggest its potential benefit in a patient with
fibromyalgia, who had had suboptimal results with conventional
therapies. We are designing a trial using objective outcome measures to
further evaluate the effectiveness of this product in patients with
fibromyalgia
Pharmacotherapy 24(11):1646-1648, 2004. © 2004 Pharmacotherapy
Publications

For the record, I don´t spam and I´m not a scammer...just a
fibromyalgia sufferer who hopes the information might help another.
Elizabeth

> This is a SPAM SCAM... The only thing that D-ribose has been found
> effective for is strengthening the heart after a cardiac event. There
[quoted text clipped - 38 lines]
> > >
> > > diane, worried
Cindy - 03 Dec 2005 14:57 GMT
Diane, I am now taking Lortab 10s, but also have a script of Percocet 10s. I
do not believe I am addicted to them, because I can run out and not go
through withdrawals...I do think that I am dependant on them.I realize what
kind of life they give me...As the pain gets really bad...FM is very hard to
treat as what works for one doesn't work for another...And sometimes you
feel almost normal and you get to thinking that you are not really
sick...And then outta the blue from nowhere and for no good reason...The
truck strikes again...and what worked before, doesn't always work
again...And when you get to feeling better, you think...I really should be
working...this is crazy...I just went through this stage AGAIN..I say that,
because it becomes a circle of your life...Acceptance, Denial, Grief,
feeling of depression...You feel better and then Bam and you go through the
circle again.

Sorry to get into this like this...I am very fortunate to have a really
caring doctor that believes in FM and in me...Trust me enough to take the
pain relievers he gives responsibly...He believes in getting the pain under
control. And working on getting the sleep you need..Then you can start to
live your life again...Not the same one as before, but you learn what your
new life will be...And then you get to moving again which leads to some kind
of excercise thus making you feel better...But learning what works for
you...what you are capable of is the hard part...And the fact that Fibro is
the great pretender...You never know him exactly....You never know what is
going to make him drive the Mack Truck through your life...

Wow this is long...Sorry...
Hugs Cindy

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
Diane - 03 Dec 2005 18:47 GMT
don't apologize, cindy. that was really helpful and fits my
s'daughter's illness to a t.

diane
Butterfly - 03 Dec 2005 16:22 GMT
That's where I'm at. Take it 2 hours before I get up--then I can get up, and
again 12 hours later at 1/2 the dosage. I am carefully monitored by the Pain
Management Dr as I have a lot of drug allergies on top of everything else. I
get trigger injections on top of this and right now am in PT for nonstop
muscle spasms in both shoulders to neck besides taking muscle relaxants.
No, I do not drive ever since I started this Pain Killer as it has really
slowed my reaction time. At least I was able to cook and do laundry until
this flare that started early Nov. My guys do the vacuuming for me and right
now are helping with everything else.
If she needs it then she should take it, especially if it helps her sleep.
Dr did say that I should not stop this medicine 'cold turkey', just like you
can't stop Prednisone that way either.

Butterfly

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
johnie - 03 Dec 2005 19:41 GMT
diane, for me the important question is: Does it control the pain well
enough for her to sleep?
>From my perspective she is very fortunate to have a doc that is willing
to help her get the pain under control. Morphine is the gold standard
and most widely used pain medicine in the world because it is both safe
and effective.
Let us know how she does. With improved sleep her quality of life
should also improve.

your desert bud,
johnie

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
Gwen Love - 03 Dec 2005 19:58 GMT
HEY JOHNIE!  Nice to see you on here.  How you doing?
Gwen

> diane, for me the important question is: Does it control the pain well
> enough for her to sleep?
[quoted text clipped - 18 lines]
>>
>> diane, worried
Diane - 03 Dec 2005 20:00 GMT
hi johnie!!!!!!!!!!!!!!!! how are you?

diane
johnie - 03 Dec 2005 21:21 GMT
> hi johnie!!!!!!!!!!!!!!!! how are you?

I be okey dokey today. Had a huge turkey day as 12 family members
decided to come here for a few days. It had been 7 years since that
many of us were together so it was very special. Was a little worn out
but recovered faster than I expected. My RD gave me a nice big
'cortisone' shot a week before so I had the energy to really enjoy
everyone.
We are running around now trying to get a large installation set-up at
the Scottsdale museum for a 6 month show and pluggin away at getting
the house started while getting ready for a nice month long visit from
my sweet Acacia Malako. He will show up the day before Christmas and I
can't wait to see him. I know the cortisone will continue to wear off.
I don't get as much mileage from them as I used to so Im cramming as
much into the next few weeks as I can.

Gotta ride those waves when you catch one.>g<

big desert hugs for everyone,
johnie
Diane - 03 Dec 2005 21:27 GMT
great to hear that your life is so full hand happy, johnie. i know
you're going to love having time with your grandson. thanks for
stopping by!

diane
Gwen Love - 03 Dec 2005 21:31 GMT
Johnie, you sound very busy.  Be careful and don't do TOO much!  Your
Thanksgiving get together sounds very good.  I always enjoy seeing those
that you don't see very often.  I know Christmas will be good with Acacia
there.  Don't spoil him too bad, okay!  Take care of yourself but have fun.
Gwen

>> hi johnie!!!!!!!!!!!!!!!! how are you?
>>
[quoted text clipped - 16 lines]
> big desert hugs for everyone,
> johnie
Kelly - 03 Dec 2005 22:52 GMT
Johnie,
I am jealous - how wonderful to have Christmas with your little guy (or I
guess not so little now.)  I have to keep away from my nephew Kyle until
probably after Christmas thanks to the solu-medrol drip and the pain from
the right side.  He is 3 1/2 and figures Aunty Kelly is his playtoy but the
threat of childhood pre-school germs is too real right now.  January all
bets are off.

Have a great holiday and just expect to rest after.  it will be worth it!

Kelly
>> hi johnie!!!!!!!!!!!!!!!! how are you?
>>
[quoted text clipped - 16 lines]
> big desert hugs for everyone,
> johnie
Nann Bell - 04 Dec 2005 01:18 GMT
ah, johnie, it's so good to hear you've been having such happy times!  
Remember, please, to ease off on whatcha do as that cortisone wears off, ok?  
Have a wonderful, wonderful, sweetness-filled visit with Acacia.  Oh, and we
need some updated photos!

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Di - 04 Dec 2005 18:08 GMT
> .......................
>
> big desert hugs for everyone,
> johnie

Hugs right back at ya, mon!
Signature

Di
zinkadoodle at gmail dot com
www.pbase.com/di
www.dustydoggie.blogspot.com

Jo Firey - 03 Dec 2005 20:08 GMT
> diane, for me the important question is: Does it control the pain well
> enough for her to sleep?
[quoted text clipped - 7 lines]
> your desert bud,
> johnie

You have no idea how much I envy those that morphine helps to sleep as well
as providing pain relief.  I have a paradoxal reaction to it, where I get
wired rather than sleepy.  Thank God it still works for pain relief.

Jo
Nann Bell - 04 Dec 2005 01:16 GMT
> You have no idea how much I envy those that morphine helps to sleep as well
> as providing pain relief.  I have a paradoxal reaction to it, where I get
> wired rather than sleepy.  Thank God it still works for pain relief.
>
> Jo

that's a shame, Jo.  

Mike's never been on morphine, but we discovered he's that way on Benadryl.  
Tried some Tylenol pm one night and was up all night.  Never again.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Butterfly - 04 Dec 2005 17:07 GMT
It goes either way for me.sometimes it helps me sleep and other times I get
to be 'wide awake' for close to 24 hours straight, then a short nap, and
awake again. I do not use any kind of cutting utensils when I'm 'wired' as
my hands aren't reliable for holding onto things when I'm 'normal'. Pain
factor is usually quite high when I have the 'no sleep' reaction. Dr says it
is a combo of a higher degree of pain and the added pain killer that keeps
me awake.

Butterfly

>> diane, for me the important question is: Does it control the pain well
>> enough for her to sleep?
[quoted text clipped - 13 lines]
>
> Jo
Jo Firey - 04 Dec 2005 21:08 GMT
> It goes either way for me.sometimes it helps me sleep and other times I
> get to be 'wide awake' for close to 24 hours straight, then a short nap,
[quoted text clipped - 3 lines]
> reaction. Dr says it is a combo of a higher degree of pain and the added
> pain killer that keeps me awake.

Makes sense.  The way my doctor made the initial diagnosis of a really
painful kidney stone, was to give me a really strong pain injection.  (As he
sent me off to X-Ray.)  Said that since I was still conscious it was likely
a kidney stone.  Anything less and I'd have passed out.

Jo
Nann Bell - 04 Dec 2005 01:14 GMT
> diane, for me the important question is: Does it control the pain well
> enough for her to sleep?
[quoted text clipped - 7 lines]
> your desert bud,
> johnie

I agree wholeheartedly with johnie.  Having a doctor who properly medicates
her fibro pain so she can sleep and function more is a gift.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Nicole H - 04 Dec 2005 00:22 GMT
Diane
You shouldn't worry.  You should be happy that she has a doctor that wants
to keep her out of pain.
I have fms and lupus and take morphine daily.  It's made a huge improvement
in my daily functioning.

I take a 24hr release called Avinza.
Hydromorphone is Dilaudid.  Avinza is straight morphine.

I have many articles regarding pain, addiction and tolerance that I can send
you.  It'll help ease your mind.
Nicole in CA

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
Diane - 04 Dec 2005 02:51 GMT
thank you, nicole. i've been sharing all the responses with my
stepdaughter's mom and sisters and we're feeling much relieved.

diane
Squirrely - 05 Dec 2005 07:14 GMT
Diane, Johnie, and Kelly.

Diane,
I have friends that have fms and are using morphine for it. She does need to
be careful if she has bowel problems. It can cause bad constipation. But
most of the people that are using do get pain relief from it. So wishing
your stepdaughter the best with this too. Hopefully she will only have to
use it during the winter for the flaring and then maybe can get off of it
again after that.

Johnie, so you have your own little santa coming. that is great. good to
hear from you. If you are emailing me, I am not getting them again. You take
care and don't overdo it.

Kelly, I hope that solu medrol drip works for you. I am sorry you will not
be able to be around Kyle until after Christmas. That is sad. I can't be
around children either or sick people because of my immune system and I know
that is not fun. You take care.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> my 31 year old stepdaughter has been on disability for 2-3 years now
> with fms and a couple of other things. she's been seeing an fms
[quoted text clipped - 6 lines]
>
> diane, worried
 
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