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 arwen52
Joined: 3/13/2008
Msg: 151
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FibromyalgiaPage 7 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
I am a massage therapist who has a fair amount of experience with clients with FM. I also used to teach MTs how to work with clients with FM. Touch Research Institute has shown that 1/2 hour *gentle* massage 2x/week can reduce the severity of symptoms. In Russian massage (in which I was trained - it's used in hospitals and clinics and based on research) we do 20-30 minutes of very gentle massage 2-3x / week.

There are FM support groups. Have them check it out. They need to make sure they get regular sleep and regular, gentle exercise, preferably every day. They need to do everything they can to support their health - get rid of tobacco, keep any alcohol and caffeine to a minimum, eat well, manage the stress levels in their lives.

Good luck to your friend.
 timetogo3223
Joined: 9/29/2011
Msg: 152
Fibromyalgia
Posted: 10/9/2011 9:18:08 PM
No real organic cause has been found for Fibromyalgia.

A lot of pain of all sorts is caused by on-going anxiety and stress.

If you have an open mind you might want to read the "Mind-Body Prescription", by John Sarno MD. He is a long-time physician practicing at the Rusk Institute in NYC, and has helped many people overcome this condition.

Caution: there is no advice for diet or exercise or pills or stretches or any other modalities of treatment. The treatment comes from knowledge of what your body is doing. His work is based on actual treatments and over 50 years of continuing treatment.

If you have tried everything else and are sick of just managing the pain you may want to give it a shot.

Been there.

Good luck!
 chemosaby
Joined: 1/1/2011
Msg: 153
Fibromyalgia
Posted: 12/26/2011 5:42:54 PM
Fibro is an autoimmune condition that is a reaction to vaccines that cripple your immune system. Running to doctors won't be much help. They don't understand it much given they refuse to blame vaccines, and since they are nothing but glorified pharmacist nowadays, you'll leave with a vioxx like prescription that could maim or kill.
 Northern^Lady
Joined: 4/19/2007
Msg: 154
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Fibromyalgia
Posted: 7/15/2012 7:05:43 PM
I normally don't get involved with these topics but I can not in good conscience stand by.
I have had fibro for many, many years. I will agree in so far as, cutting sugar and gluten out of your diet is not a bad idea, but come on cut out sugar and flour for two months and it will go away...which is basically what you are telling this person.
I suggest rest, a balanced diet, and exercise. {yoga, walking, swimming}
I also suggest going to specialists, naturopaths, and your doctor on a regular basis.
Try to keep stress down as much as possible.
Some medication may be required. That is up to the attending physician.
If you and your doctor don't see eye to eye ask for a second opinion from another doctor.
Look for support groups,{there are plenty on facebook}, don't over do an activity and learn to say no
if you don't feel up to it, even if you had promised.
Just some common sense from someone who is walking the walk.
 Northern^Lady
Joined: 4/19/2007
Msg: 155
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Fibromyalgia
Posted: 7/15/2012 7:09:09 PM
Very good advice. :-)
I will mention though and this seems to be so overlooked.
Fibromyalgia is so much more than pain.
I could list some of it off but look it up.
It is interesting and it justifies how you are feeling in different ways.
Fibro Fog is a good one to look up. No, you really aren't loosing your mind.
A good magazine is, "The Fibromyalgia Network". You can find it on the web.

Best of luck.
 Northern^Lady
Joined: 4/19/2007
Msg: 156
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Fibromyalgia
Posted: 7/15/2012 7:11:12 PM
What kind of doctors have you been dealing with?
 marita_b
Joined: 6/15/2005
Msg: 157
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Fibromyalgia
Posted: 7/24/2012 12:48:59 PM
Fibro is an autoimmune condition that is a reaction to vaccines that cripple your immune system.****

WOW!!!! you should inform the media chemosaby,..... because no definitive known cause has as yet been determined by the legions of medical proffessionals who are looking into this,....

I haven't added much to this thread for a couple of years now but this kind of blatant hubris needs to be responded to,....

In fact nothing new has been discovered in either the diagnostic or treatment area of this disorder,....
The only way a positive diagnosis can be made is to determine what other ailments, disorders or diseases can be defined by a person's presentation of signs and symptoms,....because there is such a huge laundry list of potential S&S that all fall under this disorder, fibromyalgia,.....you can line up 20 confirmed fibro patients, and no two will be the same both in the severity of their pain and in what body parts are affected.....

over the last 7 pages there are many good suggestions and a few like yours that are outright dangerous,.....and often there is also a huge success with placebos,..

to those of you that have been cured,...consider yourself lucky that you didn't have fibro,....because there is NO CURE YET,...
there is and only to those of you who are lucky,.... a way to lessen the severity,....
what is important to know is that what might help one person may have no effect or even harm another,....

So I who have been suffering for many many years now,....every single day, have tried it all,....and have found myself beating up on myself because what so obviously helped someone did nothing at all for me,....
haven't we all had an aunt or parent who seem to complain all the time about this that or the other ache or pain? I had,...my favorite aunt in fact,...
oh yes,....there is some thought that there may be a hereditary component to this thing,....(but even this is only a guess so far)

The biggest thing that all of us have in common is depression,.....and feeling a failure or an outright hypochondriac,....because after all for us to feel the way we do we must mean we are too sensitive to the day to day aches and pains we all have,....R I G H T ?,...... W R O N G!!

this is what we told ourselves before we even knew there was such a thing as fibro,...After all what disease can affect our hair texture and our digestive tract, your cognitive ability,...the way in which we sleep or rather don't sleep and body aches that seem to jump from joint to joint at will,....and the list goes on,....

well it turns out quite a few things,....and all of those have to be ruled out first,....some have an outright cure, (lime disease)....some don't,... some are even life threatening,...and some are yours for life,....

Fibromyalgia is a degenerative disorder that has,.... NO CURE,....YET!
If you have fibro,...then you will have it for life,.....so far,....no one wishes this were not the case more than I do,....

So on behalf of all who are are suffering and want more information,....I say thank you, to all of you who have offered suggestions as to what may help given certain symptoms,....or what doctor, web site, medicinal/non medicinal medication or procedure ,...etc, etc, etc,....

BUT,.....to all of you who KNOW so much more than the medical community or even us dumb patients,.....

I say keep your wisdom to yourself,.....because you hurt far more than you help,......
 QueenSaru
Joined: 9/4/2011
Msg: 158
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Fibromyalgia
Posted: 7/27/2012 5:11:50 AM
I was diagnosed last year after spending almost five years in constant pain, sometimes to the point where I couldn't walk or get out of bed. On the days where it got so bad, my mum would take me to the ER (this was while I kept seeing specialist after specialist as they tried to figure out what was wrong) and every ER doc their first question was always, "Well, are you sure you didn't pull a muscle?"

Seriously? When the first questions they usually ask you are:

1. How long have you been experiencing this pain?
2. Where is the pain located?

I don't know about you, but I've never pulled a muscle that made my entire body hurt and lasted for five years... ¬.¬

It was honestly very very frustrating.

Being diagnosed was a relief and a blessing. While it was nice to know I wasn't crazy, it was disappointing to find out that "symptom control" was about all I had being offered to me.

I do my best to always keep moving (walking, physiotherapy exercises, etc) even during bad pain days, because I find that if I give in to that pain, it actually becomes worse. The only compromise I've made is that I cannot work more than five consecutive days at work, and my HR has the paperwork to back that up from my doctor, because by the sixth or seventh day, I'm usually calling in sick, and I hate that.

I have however been told that acupuncture and Tai Chi can help control pain, but since these things aren't covered by insurance (as non "medicinal" therapies) I've yet to actually try either. Anyone who has and can say if they really do help control pain?
 1bellanella
Joined: 1/24/2010
Msg: 159
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Fibromyalgia
Posted: 7/27/2012 12:02:46 PM
QueenSaru,
You might want to look for free/cheap classes in your area. I googled it after looking at your profile and was able to come up with some. You might also want to look for groups on meetup.com. We have some in my area that are active and completely free.
 QueenSaru
Joined: 9/4/2011
Msg: 160
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Fibromyalgia
Posted: 7/27/2012 12:27:53 PM
@1bellanella

Thank you! I will definitely look into that! Free and cheap are the best kind of words. XD
 melodyof_k
Joined: 5/2/2012
Msg: 161
Fibromyalgia
Posted: 8/10/2012 12:46:30 AM
sometimes all of the above symtoms can be (I am not saying it all is) but can be actual Lyme disease.
Mention to your dr that you would like to be tested for lyme. and that you want the blood work sent to IGENIX lab.
that is what happened to me.
I had so many of the symptoms you describe above.
I found out I have lyme which is very serious....but there are ways to cure it.
 melodyof_k
Joined: 5/2/2012
Msg: 162
Fibromyalgia
Posted: 8/10/2012 12:51:50 AM
fibromyalgis, chronic fatique, insomnia, depression,
confussion, loosing words, muscle and joint pain....
it can take years to get a diagnosis. Tons of medications given.

I finally found a dr who taught me that food is medicine.
how we can heal ourselves with the proper foods.

and the proper diagnosis.
all the fatigue and pain and memory loss I suffered from was actually due to lyme disease which I
am now being treated for.

whatever you do have....look up the proper nutritional ways to help heal your symptoms
unless you are lucky enough to have a doctor who can tell you the proper way to eat for your specific condition.

lets get well.
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 163
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Fibromyalgia
Posted: 8/10/2012 4:43:48 AM

no definitive known cause has as yet been determined by the legions of medical proffessionals who are looking into this,....

^^^^^^^^^^^^^^^^^^^^^^^^^
Exactly and no one listens because the doc is giving most of them pain killers and other crap/general label for the condition.


fibromyalgis, chronic fatique, insomnia, depression,
confussion, loosing words, muscle and joint pain....
it can take years to get a diagnosis. Tons of medications given.

I finally found a dr who taught me that food is medicine.
how we can heal ourselves with the proper foods.

and the proper diagnosis.
all the fatigue and pain and memory loss I suffered from was actually due to lyme disease which I
am now being treated for.

^^^^^^^^^^^^^^^^Fabulous post

RULE out an infection/virus.
Massive doses of olive leaf extract, garlic and ginger will fight a virus, Even eliminate if used long enough.

Rule out neurological issues ( could be from a lack of minerals) Magnesium being one of the top minerals.
No, a wal mart magnesium pill isn't going to get enough in you. It does not absorb well enough.

Rule out even malaria/lyme..Who checks for that anymore?OK one did..upstairs

I would be my own advocate and try many things that are first starting with real foods and no pesticides used in the home and on the skin. Even lotions not organic and plant based.
Checking for heavy metals in the body that are not in the normal range.

GET OFF any artificial sweeteners.
No sugar No sugar No sugar
Little animal protein and only grass fed and antibiotic free.
No commercially prepared foods.

Get 3-10 doctors to check you.
Get a nutritionalist.
Get lymphatic massage and exercise.

Many have words of wisdom have been posted..Its up to us to fight for our health.



Check your inflammation score (C reative protien) and get on an anti inflammatory lifestyle.

FOOD is the answer to many things wrong with us.
 Synergywu
Joined: 2/19/2012
Msg: 164
Fibromyalgia
Posted: 8/13/2012 1:31:15 AM
This is all very good information in the posts - but I have not seen much discussion about dating, or the dramatic change in lifestyle this condition can cause. I live with muscle and joint pain, was very athletic, but now my activities are very limited - it is difficult to accept - but I keep moving and holding on to my career thru the pain - hoping to find a solution.

In the mean time, are you all finding someone compatible to spend your life with, to care about, and create a supportive relationship? I am finding this to be a challenge.
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 165
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Fibromyalgia
Posted: 8/13/2012 2:45:30 AM

but I have not seen much discussion about dating

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^If you have that much pain ect..get the pain under control first starting with the anti inflammatory diet and proper rest, minerals ect, things to help you before adding the STRESS of dating..


Would most date with a splitting headache? I would pass.


You can put off dating a while to work on your health.

I took a big looooong break working on my back issues.. Same people are single I new before.
 marita_b
Joined: 6/15/2005
Msg: 166
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Fibromyalgia
Posted: 8/14/2012 5:22:51 PM
telling someone they can put off something in order to get anything of theirs under control, before they should start anything is rather presumptuous in my opinion,...this may be good advice for one person (the advice giver say) but totally unfair to someone else,....

reason being some people (especially men people) can control their pain better when they have something else or someone else to focus on,....actually I am one of those people too,....and telling someone that a doctor who throws pain meds, at a problem, and referring to those meds as crap,...sounds like someone who has found something that helps them and perhaps even like someone for whom the diagnosis of fibromyalgia, is a wrong diagnosis,....

there are many degrees and levels to the pain true fibro patients have to endure,....to compare your pain to mine or even this man who asks a fair question,...

remember no two fibro patients are the same nor is their suffering,.....

I will suggest that far too many family practitioners will use the word fibro when they don't know for sure and often before any tests are performed to rule out the myriad of other disorders that have the same signs and symptoms,.....
If you have not been checked out for all those other possibilities then it is unwise to call yourself a fibro patient,....it takes on average 5 years or more to be tested and have all other alternatives ruled out,.....FIVE YEARS or longer,....and at that point many of us have already been suffering a decade or longer as was the case with me,......

and please don't belittle someone Else's pain,....I am in a wheelchair more and more these days because the pain I have is excruciating with every muscle I move,....I can walk,....but the pain is unbearable for me to do so,.....so I walk as much as I can bear and if I have to walk long distances like shopping etc,...I have to have the chair,.....and of all the medication and tools that I have undergone there are very7 few things that help me,....Pain meds happens to be one of the things that does help somewhat,......to me they are not only not crap,....I have fought very hard to have them scripted to me,....especially in the quantity I need to have even some relief,.....The medical community knows very little about pain medication except to not give them and that means those of us who actually need them have to prove we need them by having to swallow a million things that don't help,....they are learning though,....and to their surprise people who require these medications are the ones who have taught them,....

a few clues are when you take painkillers,....do you find yourself dopey,....drowsy,.... and dysfunctional,....
or do you feel energized,..... functional, able to perform the tasks you wish to?
Do you take medication every however many hours you are able to or do you forget to take anything until you are in extreme pain again?
Do you ever forget your medication when you leave the house?.......because if you do then there is a good chance you are not hooked no matter what someone might tell you,.....

chronic pain can not be measured on a tool, does not require a bandage or cast and sounds boring, to friend and foe alike....
we can't prove it to anyone friend or family member or even medical practitioner,....
it is easy to fake and like a cold or the flue everybody and his great aunt Ida has a cure,.....
****except they really don't,****..... give suggestions,....thoughts,...ideas as to what to try, sure,.... great,....

but the last thing we all need is to have any of you add more guilt as to what we have done wrong leading us to this horrible conclusion,....
we have had guilt by the bucket full and telling us to stay away from the thought of maybe reaching out to someone IE not dating until we have gotten this pain thing under control is unfair and frankly a death sentence, since so far as of today this still can not yet be cured,...I checked

So buddy if you can find someone to hang onto,.....good on you,....but to look for someone is still free,....and necessary,...harder under these dismal circumstances but don't stop looking because while you are still looking you are still clinging to life,...and that's a good thing,....love to you
 r00tzzzz
Joined: 7/14/2012
Msg: 167
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Fibromyalgia
Posted: 8/15/2012 1:25:23 PM
Juice fasting will take care of the pain. I have done it with great results.
 marita_b
Joined: 6/15/2005
Msg: 168
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Fibromyalgia
Posted: 8/21/2012 2:49:58 PM
good for you "LeanGains" and that's one more thing that doesn't do it for me,....tried it,....

so glad to hear that's all it takes to make you pain free,....but are you certain you actually have fibromyalgia?
I for one would be interested in how people get their diagnosis,...and how many hoops and test they had to be put through to come to that conclusion,....

NO ONE CAN FEEL ANOTHER PERSON'S PAIN,... and each of us have to travel a long road to get to a place of having the pain bearable,....because it will never ever actually go away,....as I said before this disease/disorder is progressive and incurable at this time,....

ultimately I personally would do**** anything ****up to and including ** considering brain surgery** to make it all stop!!!

it is something that is not yet available but being studied,....
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 169
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Fibromyalgia
Posted: 8/22/2012 10:03:56 AM

telling someone they can put off something in order to get anything of theirs under control, before they should start anything is rather presumptuous in my opinion,...this may be good advice for one person (the advice giver say) but totally unfair to someone else,...


The forums are for advise and experiences from different people/perspectives.

Lets just all agree then only one post is needed.



NO ONE CAN FEEL ANOTHER PERSON'S PAIN

^^^^^^^Agree , and no one diagnosis or one persons advise should be taken if reasonable results are not seen in a reasonable amount of time..



I am very sorry you are in pain, but "Fibromyalgia" is the topic and most people diagnosed with "it" can be helped tremendously if they take some matters in their own hands by getting KNOWLEDGE from all the sources they can..


Yes. My choice not to date when I have been in severe pain. I am not myself, I never know what degree the pain will be for certain activities and booooooy what a joy I must be personality wise, because I am one who will NOT take a narcotic.

I want whats" broken" fixed and will not rely one ONE persons advise unless what that advise/treatment works or i see an improvement within a reasonable amount of time .I will do my part no matter how hard it is and thats the point of my post.



chronic pain can not be measured on a tool

^^^^^^Actually it can.
Talk with your doctor and if he hasn't heard of it, maybe you should get a new one.

Does he ever read JAMA or has he heard of Harvard medical School?
 1bellanella
Joined: 1/24/2010
Msg: 170
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Fibromyalgia
Posted: 8/22/2012 12:39:41 PM

so glad to hear that's all it takes to make you pain free,....but are you certain you actually have fibromyalgia?
I for one would be interested in how people get their diagnosis,...and how many hoops and test they had to be put through to come to that conclusion,....


Frankly, it is not your place to question anyone elses' diagnosis. Just as you do not want YOUR diagnosis or pain level called into question, you should consider offering others the same courtesy.
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 171
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Fibromyalgia
Posted: 8/22/2012 12:59:29 PM

Frankly, it is not your place to question anyone elses' diagnosis. Just as you do not want YOUR diagnosis or pain level called into question, you should consider offering others the same courtesy.

^^^^^^^

Some doctors say its viral/bacterial possibly a parasite
Some say neurological
Some say a dietary issue
Some say stress/anxiety/past trauma
Some say it has many factors that need to be checked on a list and you score this many and that must be it.
Some admit they don't know what it is or if it is an actual medical condition.

If the patient does not know they have the right or the guts to ask questions and find others have and it changed their life,
then thats a good thing.

We aren't talking about a known disease like rubella or a broken leg that you can say for sure THIS is it and this will do that for you if you treat it this way .

It's everyones place and duty to question anything..
 1bellanella
Joined: 1/24/2010
Msg: 172
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Fibromyalgia
Posted: 8/22/2012 2:24:58 PM
I'm guessing that there has been some miscommunication, P.Petunias. My comment was in response to the poster who questioned if "LeanGains" actually had fibro.

good for you "LeanGains" and that's one more thing that doesn't do it for me,....tried it,....
so glad to hear that's all it takes to make you pain free,....but are you certain you actually have fibromyalgia?
I for one would be interested in how people get their diagnosis,...and how many hoops and test they had to be put through to come to that conclusion,....

NO ONE CAN FEEL ANOTHER PERSON'S PAIN,... and each of us have to travel a long road to get to a place of having the pain bearable,....because it will never ever actually go away,....as I said before this disease/disorder is progressive and incurable at this time,....
ultimately I personally would do**** anything ****up to and including ** considering brain surgery** to make it all stop!!! it is something that is not yet available but being studied,....



I fully agree that each person should question their own diagnosis and be proactive with their treatments, but I do not believe that any of us has the right to question someone ELSE’S diagnosis simply because a treatment worked for them and did not for us.

If I come to the forum and read a treatment that I don't feel has worked for me in the past and I don't want to try it again... So be it. But, IMO, it crosses a line to question if the person who posted it had enough tests done to actually have the "fibro" diagnosis. Why try to discredit someone on the grounds that something didn't work for one person, especially when almost each and every case of the disease is different?
 Peppermint_Petunias
Joined: 3/30/2012
Msg: 173
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Fibromyalgia
Posted: 8/22/2012 4:07:55 PM

I fully agree that each person should question their own diagnosis and be proactive with their treatments, but I do not believe that any of us has the right to question someone ELSE’S diagnosis simply because a treatment worked for them and did not for us.

My mis understanding..on your meaning.
It just amazes me about people and the fear of questioning a doctor.
They are a doctor and therefore NOT to be questioned..Oh hell no.

You take a 15 grand car in for skipping/running "bad" /rough..

It could be plugs
plug wires
throttle body is dirty
gas his bad
gas is contaminated
oxygen sensor bad
module
air filter
numerous other things or a few things

Hell a layperson may say skipping when they mean stalling..
A patient may only have 15 minutes to explain various things to a busy doctor and leave out something small but very important.

Anyhoo
The Tech says you need 1 or 20 things.
How many blindly say have at it? Less than you think, esp these days.

People want it explained, see old parts taken off and they question EVERYTHING if they are smart, they get another opinion if they aren't guaranteed it will fix the problem/is expensive or they get a written statement it will correct the problem or be fixed at no charge/discount as in parts only.
They question the price.

A doctor is no different than a mechanic to diagnose and fix as far as what they should do ..but a mechanic isn't given permission to play around with trying this and that at your expense.

We pay insurance premiums and deductibles that are outrageous and getting worse.


Doctors are people with a job and they get paid big bucks.
Yes, it can take some trial and error with humans or cars when its a difficult issue to diagnose but people need to ask or find someone who makes them feel free to ask and takes time to listen.



I get on my horsey on that one.
Now don't get me on dentist any time soon..

Doctors take a crap with their pants down the same as the mechanic does and have a lot of the same issues/drama in their life and families.
They just do it on a yacht that we, our insurance and drug companies pay for.

I do not hate doctors, I know them intimately and have since birth.
I am aware there are many great and caring doctors that do want to fix the patient as a whole, but I have also known and been exposed to the average physician..

Even the best are not taught what they need to know to begin with unless they are interested in that particular field ( healing with food) and want an extra year or two in nutrition only..
 A_Gent
Joined: 8/18/2011
Msg: 174
Fibromyalgia
Posted: 8/22/2012 8:05:07 PM
My experience.

Unresolved grief/anger is highly prevalent with with FM patients.

Perhaps not THE cause.. yet a strongly aggravating factor.
 marita_b
Joined: 6/15/2005
Msg: 175
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History
Fibromyalgia
Posted: 8/23/2012 3:46:22 PM
according to whom?
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