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Topic started on 18-7-2004 @ 05:24 PM by Amuk
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I have been recently been diagnosed with severe rumetoid arthritis in a very advanced stage. The pain is unbelievable and I am starting to lose
control over my left hand from nerve damage in my spine. The doctor tells me there is nothing that can be done to help at this late in the game but I
am a fighter.
Anyone with any info on this or any ways to fight it I would like to hear from them.
Thanks
Amuk
(Frank)
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reply posted on 18-7-2004 @ 06:02 PM by asala
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Sorry to here that amuk i know a few people who suffer the same problem.
As the doc says there is not much they can do how about trying alternative treatments,
like Acu puncher (sp) where they put needles on the service of the skin,
keep swimming thats good aswell,
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reply posted on 18-7-2004 @ 08:27 PM by NetStorm
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reply posted on 18-7-2004 @ 08:37 PM by Spectre
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Amuk, I'm sorry to hear about your health problems. If you are interested in experimental treatments I'll link you into some clinical trial
information. I do hope you get some relief of some kind soon.
Clinical Trials
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reply posted on 18-7-2004 @ 09:11 PM by worldwatcher
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Amuk,
glad to see you back but extremely sorry to hear that your absence was due to bad health. i would highly recommend routine massages to aid with
circulation and ease the pain, also wear a support glove on that left hand. if you need massage tips, let me know.
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reply posted on 18-7-2004 @ 09:28 PM by Majic
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Rheumatoid Arthritis(RA) is an autoimmune disorder. Your immune system is attacking the synovial tissue in your joints, and may very well be attacking
tissues in other parts of your body as well.
RA is associated with genetics -- it tends to run in the family. This does not mean it cannot be effectively treated, but it is worth remembering this
hereditary factor. It runs in my family, but mainly seems to afflict females. I have very old male relatives with no arthritis.
There are a bazillion ways to try to treat RA, but beware, most are either hoaxes or offer less than stellar results.
I am not an expert on this disease. However, the best results I have seen in my relatives were holistic methods that addressed the immune system and
overall health. While some treatments seek to "fight" the immune system, a wiser approach may be to seek to strengthen it, since it may very
well be a malfunction in the immune system that is leading it to attack "friendly" tissues. Attempting to disable the immune system has potentially
severe consequences unrelated to arthritis, and, from what I have seen, is not even very effective at treating RA to begin with.
None of my relatives has seen any long-term benefit from the use of prescription drugs. Your mileage may vary, but remember that the business of
medicine is, first and foremost, a business. Caveat emptor.
I recommend doing a lot of research on Rheumatoid Arthritis via the Internet, being skeptical about "miracle cures" (and skeptical in general),
consulting more than one doctor about this, and remembering that extreme "remedies" usually cause more problems than they solve. There are
supplements that may help (a product called "Syn-Flex" may provide some relief, but your mileage may vary), but I still think a total
health approach is the best way to go, in the end.
Be sure not to neglect your overall health, especially be sure to vary your diet. There is a possibility that some kinds of foods may aggravate RA.
Not to go new age on you, but if you experience a lot of emotional stress and/or live in a heavily polluted area, this may be a factor aggravating
your condition. Resolving causes of stress and supplementation with anti-oxidants may help with this.
Don't stop exercising, but don't "force" joints too much. Bear in mind that the joints are deteriorating, you can hurt yourself if you overload
them. On the other hand, try not to let them stiffen up to much, and flex them without loads frequently and lightly, without inducing excessive
pain.
Maintaining joint flexibility, even in advanced cases of RA, seems to be important. Once they "freeze up", things tend to get worse more rapidly.
Rheumatoid Arthritis sucks, but I refuse to believe it can't be successfully combatted, or at least adapted to in healthy ways.
Beware. If anyone promises you anything regarding Rheumatoid Arthritis, they are lying.
Good luck, study, study, study, don't believe everything you read, or hear, or see, and never lose heart.
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reply posted on 18-7-2004 @ 09:35 PM by MaskedAvatar
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A fly-by parting shot to complement a very useful post by Majic.
BTW: red wine - yes or no? I know it's meant to be good for the heart, but isn't it a polar opposite for arthritis?
* I meant compliment but complement might do niceley too *
[Edited on 18-7-2004 by MaskedAvatar]
* nicely even *
[Edited on 18-7-2004 by MaskedAvatar]
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reply posted on 18-7-2004 @ 09:58 PM by Majic
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Thanks MaskedAvatar, "complement" humbly accepted.
As for red wine and RA, as with everything else, opinions vary. I have seen a some studies that suggest alcohol may actually help protect
against Rheumatoid Arthritis, although that seems counterintuitive. Google on "rheumatoid arthritis alcohol" and you'll see what I mean.
The truth is, nobody really knows. From what I have seen, while there may be some substances that can help or hurt, it's hard to go wrong with a
balanced and widely varied diet.
As for red wine, if you like to drink it, you are probably just as well to keep doing so. Undesired restrictions can cause stress, which can itself
cause health problems. Not to say hedonism is the apex of healthiness, but moderation in all things, including moderation, is the wisest course.
On the other hand, if you don't tend to drink alcoholic beverages, the onset of Rheumatoid Arthritis is probably not the best reason to start. Eating
whole grapes now and then for saponins is probably better for you, but to each their own. Alcohol has a whole range of health consequences of its own.
It is not "evil", but it is not a health tonic, either.
Complicating all this is the fact that each of us is different. What works great for one person may actually harm another.
Thus study, a skeptical mind and a good attitude are your best tools for tackling a disease like this.
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reply posted on 18-7-2004 @ 10:42 PM by oddtodd
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Amuk ,
My dad got this when he was my age 38 , and now has eight (yes 8) artificial joints . Knees , shoulders , elbos , hips . He was bound for a
wheelchair until he found Enbrel , made by Amgen up in the Seattle area .
It basically saved his life : the two drawbacks that he has suffered are : 2 injections a week into his tummy flubber by himself (doesn't hurt
him , he just has a queezy feeling around needles ) , and his tear ducts dried up of all the crazy things .
Ask your doctor , many new drugs are out there that stop your body from treating your bones as an infection , and the side effects can be dealt
with in respects to keeping your quality of life ....
Good Luck !!
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reply posted on 19-7-2004 @ 08:53 AM by DontTreadOnMe
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I have nothing to add to the posts made by folks far more knowledgeable than I. I do hope some of their suggestions ease your pain and reverse at
least some of the damage.
Good thoughts coming your way across the cosmos.
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reply posted on 20-7-2004 @ 03:34 PM by Amuk
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Thanks for the responses
Thanks for the links
Thanks for the support
I am doing katas to try to stay flexible as I can and the doc gave me lorecets for the pain. Its not looking very good but I will fight this kicking
and screaming every inch of the way. Even back in the day I was more scared of being crippled than killed, I survived then and I will survive this.
Thanks
Frank (Amuk)
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reply posted on 20-7-2004 @ 04:22 PM by JediMaster
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Sorry to hear that. My great aunt whose 76, has RA for over 20 years I think. Its hard on her, her joints get stiff and its a very painful disease.
She has artifcial knees, since it was so bad for her. I don't have much advice, but using heating pads on the sore joints help, as well as Epsom salt
baths.
Once again sorry to hear it. My family has a bad history of hearts from my dad's side ( I was born with a whole in my heart, which closed up a few
weeks after Ii was born), so I'm prone to heart attacks later in life. Then on my mom's side its arthiritis and bad bones. I just hope I never get
it.
I hope it gets better for you Amuk.
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reply posted on 20-7-2004 @ 10:51 PM by Majic
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Amuk: I urge you to be careful if you are using painkillers while working out. Remember that your joints are being weakened, and that pain is
the signal that there is trouble.
Flexing them with light or no loading is good, but watch out for anything "high impact". You don 't want bone scraping against bone in there.
Don't get me wrong, RA is painful as hell, and I recommend doing what you can to ease the pain -- provided, of course, that the means used doesn't
itself lead to more pain.
I'm just advising you to go easy on those joints while under the influence of painkillers. With pain suppressed, the possibility of your seriously
injuring one or more of your joints goes way up.
I don't know what "katas" are, but if they involve flexing and stretching without putting heavy loads on your inflamed joints, then do lots of
those.
Even then, I strongly recommend being careful about combining workouts with painkillers. The pain sucks, but it is not lying to you.
Go well, and remember that overcoming RA is not just a physical endeavor. A strong, spiritual approach will serve you well here, as it does
everywhere.
Be sure to review your diet, too. You may be missing something you need, or, possibly, getting too much of something you don't need.
Know that my very best wishes are with you. Never lose heart.
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reply posted on 21-7-2004 @ 02:41 PM by Amuk
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Katas are stylized combat moves and forms used to train in karate, kinda like Ti Chi. I can no longer train students or fight or work out with the
tweenty year olds but I can still do the streches and katas as long as I take it easy. The lorecets (or something like them) are a must, without them
I can barely get out of bed or walk. I have to keep streching and flexing the joints because the doc told me once I stop I am pretty much screwed, and
katas are perfect for this.
Thanks for the tips and for the support
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reply posted on 21-7-2004 @ 11:30 PM by oddtodd
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Amuk ,
My dad (the guy with 8 titanium and plastic joints) takes Methotrexate search.yahoo.com... in addition to
Enbrel www.embrel.com... Methotrexate lowers the activity of the immune system and therefore its ability to attack your
joints . He is a teacher , and has to be VERY careful around flu season , but has had his quality of life restored (he can run if he needs to , as
well as pick up his grandchildren) . Of course there will be trade offs with modern medicine and side effects , but he could not get out of bed ,
dress himself , wash properly as well as most other normal daily functions by the time he was 42 . He is 57 now. How old are you ?
He found the combination of the above mentioned drugs worked for him , and adjusted his life to suit . He felt trapped in his own body (and literaly
was) and would be long gone without the support of my mom , and this lucky combination of medicine , and replacement surgury .
I have had success with holistic chiropractors who work on the "Meningi" (as in meningitis) . It is a light pressure technique that helps the
flow of spinal fluid and speeds up self healing , My doc swears my dad would not be a cyborg if he started treatments early .
It is called Network Chiropratic (the technique) , and although I always though holistic treatments were hokey , my doc fixed a recuring back
injury (that usually takes me out for 2 weeks) in only 3 days . Insurance covers it , and I would suggest looking into it even if you are not open to
holistic ideas.
I don't take painkillers because I would rather know what's up , and not further injure myself because I am numb , but in your case I can only
hope they help you to function as well as possible .
You may need to go the miracal of modern medicine route , but don't wait too long regardless of what you decide , there is also this newer drug
that you might want to investigate and speak to your doctor about :
www.fda.gov...
I'd be happy to talk to him about giving you some advice , and exchange e-mails or phone numbers if you would like .
He is well versed in what you are going through , and I'd be happy to introduce you as you see fit ... u2u me if you care too .
Peace ,
odd
[Edited on 21-7-2004 by oddtodd]
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reply posted on 16-8-2004 @ 12:19 PM by aWoman
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Dear Amuk,
I recommend you request that your name be placed on prayer group lists, there are many on the internet you can add yourself to and also local
churches.
I would avoid consuming animal proteins and drink lots of water.
Be sure go obtain a second opinion, preferably from a rheumatologist at a medical school hospital where you might have access to clinical trials of
new drugs and treatments.
The internet has numerous support groups I would encourage you to join for insight and emotional support, and perhaps your local hospitals and
community have support groups.
I would ask for a referral to a pain management specialist if the pain gets out of control.
I would also listen to relaxation tapes/subliminals with visualization exercises.
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