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Old 12-19-2009, 10:52 AM   #21 (permalink)  
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ok

Hey Lenia,

Sending you distant healing this moment through prayer.

You are valuable and your higher power adores you.

xx
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Old 12-27-2009, 12:26 PM   #22 (permalink)  
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im have this as well.... absolutely sucks
sore 100% of the time...no way to live. if any one has any concrete advice id love to hear from you.
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Old 12-27-2009, 07:36 PM   #23 (permalink)  
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im have this as well.... absolutely sucks
sore 100% of the time...no way to live. if any one has any concrete advice id love to hear from you.
Lifestyle modification

Healthy diet +
Good sleep +
Exercise =
Stress reduction

I learned a near scientific approach to these concepts and now take a fraction of the meds I used to take with my numbers in the bloodwork also a fraction of what they used to be. A win-win situation.

Let me know if you have any more specific questions.

andy
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Old 12-27-2009, 07:48 PM   #24 (permalink)  
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I like that.
Stress reduction.
ha!
If stress were people ... I'd be CHINA.

But this will pass.

The funny thing...
not funny ha ha, funny, 'wha?'

my knees are sore.
the knee caps.
Like ... I've been holding tenstion ...
in my kneecaps.

Thinking about that
made me laugh.

i'm not goose stepping,
my legs just feel like
I've beenkneeling down for a couple of hours.

now the abdominal pain
I completely understand.
Throwing up for three days
and the tension
I do feel like
I've done 100 situps.

So I'm trying the water cure.
Got my water sitting here beside me.
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Old 12-27-2009, 08:30 PM   #25 (permalink)  
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100 sit-ups sound good... although quite possibly a little excessive to start.

It's like contrary action - at least this is my truth. When I speak of "stress" I mean the Human Stress Response and not the social term such as "stressed out" however the two are not necessarily mutually exclusive.

Epinephrine, norepinephrine, and cortisol, in excess, are the enemy to those of us with any form of psychological/physiological disorders. Exercise burns this stuff, which occurs naturally in the body, off naturally from the body. Often such disorders influence us to live a more sedentary lifestyle however this is usually the worst behavior to adopt.

I find that the more I exercise my major muscle groups through a full range of motion, that the less my symptoms bothered me. I would sleep better at night, and would be able to function better throughout the day.

This together with a better diet and some nutritional supplements, I believe, have regressed the severity of my disease.

Hope this helps.

a
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Old 12-27-2009, 09:38 PM   #26 (permalink)  
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well, andy - might wanna go over to the Alcoholism forums and read the thread 'prayers for barb dwyer.'

I've kinda had this whole dickensian christmas thing happening.

but when I'm ABLE to eat again... I will try to eat smarter.
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Old 12-28-2009, 03:32 AM   #27 (permalink)  
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does any one else get or have the burning skin ,like boiling water has been spilled over you i just had a flare up of about a month not good never had it before i sure hope i dont get it again
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Old 12-28-2009, 06:50 AM   #28 (permalink)  
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does any one else get or have the burning skin ,like boiling water has been spilled over you i just had a flare up of about a month not good never had it before i sure hope i dont get it again
I have that constantly in my legs, Jim -- though I've always understood it to come from my RSD. I get a burning of the muscles under the skin -- like the muscles and skin were yanked in different directions, if you can imagine that.

Adding to the diet suggestions -- my flares don't seem to last as long since I gave up meat. I've found it's not a popular suggestion with most people, but seriously, I'm healthier in many ways. My cholesterol is in the normal range for the first time in my life, I seldom catch whatever is "going around," and I feel more mentally alert.

Peace & Love,
Sugah
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Old 12-29-2009, 03:03 PM   #29 (permalink)  
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Here's a copy of some info I got from WebMD regarding the fatigue with fibromyalgia I thought you all might find interesting:

Are Sleep Disturbances a Common Symptom of Fibromyalgia?

Sleep disturbances are common in the majority of people with fibromyalgia. While people with fibromyalgia may not have difficulty falling asleep, their sleep is light and easily disturbed. Many awaken in the morning feeling exhausted and unrefreshed. These sleep disturbances may help create a constant state of fatigue.

During sleep, individuals with fibromyalgia are constantly interrupted by bursts of brain activity similar to the activity that occurs in the brain when they are awake. Tests in sleep labs done on individuals with fibromyalgia have shown that people with fibromyalgia experience interruptions in deep sleep. These interruptions limit the amount of time they spend in deep sleep. As a result, their body is unable to rejuvenate itself.

Love,

Lenina
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Old 01-31-2010, 10:15 PM   #30 (permalink)  
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Does anyone else take Diclophenac for fibromyalgia?

I find it makes my pain manageable, like knocks it down to about 50% especially during the day when i can can stretch move about etc.

without this drug i am crippled!

couple questions;

1: Im concerned the high dose i need to to take to get any decent relief is damaging me, anyone know anything about this?

2: Is there a withdrawal period when you come of the drug. Ive taken 200mg a day for about 2 1/2 years.

thanks!
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Old 02-01-2010, 08:33 PM   #31 (permalink)  
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Hello there noubledegative, and pleased to meet you.

I _love_ your name

As far as your questions, nobody here is a physician so we can't give you any medical advice. We can only tell you our personal experience with a med. However, every med is different, and how they affect each individual is also different, so you really have to ask your personal physician how a specific med is going to affect _your_ body.

I am not taking any NSAID meds, so I can't even give you personal experience. I am taking steroids and neural stabilizers, which doesn't adress your question at all.

So I'll just welcome you to our little corner of recovery and thank you for deciding to join us

Mike
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Old 02-02-2010, 07:54 AM   #32 (permalink)  
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1: Im concerned the high dose i need to to take to get any decent relief is damaging me, anyone know anything about this?

2: Is there a withdrawal period when you come of the drug. Ive taken 200mg a day for about 2 1/2 years.
An NSAID, or Non-Steroidal Anti-Inflammatory Drug are drugs with analgesic, antipyretic (fever-reducing) and, in higher doses, with anti-inflammatory effects. The term "non-steroidal" is used to distinguish these drugs from steroids, which also have a similar anti-inflammatory action. As analgesics, NSAIDs are non-narcotic therefore unlikely to create a physical dependence and/or withdrawal.

The two main adverse drug reactions associated with NSAIDs relate to gastrointestinal and renal (gut and butt) effects. These effects are usually dose-dependent, and in many cases severe enough to limit the use of NSAID therapy.

So, in a nutshell, no there is little chance of problematic withdrawal and yes there is a risk of damage due to long-term excessive consumption. However besides doing research on your own it is also important to run any of your bright ideas by an informed medical professional before implementing them.

Personally, I've got RA and identify with the pain issue. There was a stretch when I took a handful of meds twice a day (and I have big hands), including but not limited to a high dose of a strong NSAID. Since then I have independently researched and implemented a variety of lifestyle modifications that have significantly improved my quality of living, reduced my symptoms, and subsequently decreased my dependence on such high doses of medication to control the symptoms of my disease.

a
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Old 04-12-2010, 01:02 AM   #33 (permalink)  
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I have been looking for a place I can talk to other alcoholics with fibromyalgia. I thought we were a rarity. I didn't know there were so many. I also have CFS and arthritis. I have a question for you all. When I get home from work I can barely move. How do you manage to get to AA meetings? How do you keep up with your 12 step work?

PS--Have you heard of the XMRV retro virus? It is passed much the same way as HIV. They have found it in 95% of CFS patients and think it may be the cause. I have had 13 HIV tests in my lifetime. Alcohol equaled no inhibition. I am leaning towards this as the reason I am sick. It just makes sense to me.
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Old 04-12-2010, 10:41 PM   #34 (permalink)  
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I have been looking for a place I can talk to other alcoholics with fibromyalgia. I thought we were a rarity. I didn't know there were so many. I also have CFS and arthritis. I have a question for you all. When I get home from work I can barely move. How do you manage to get to AA meetings? How do you keep up with your 12 step work?
Hi, tiggerkenwood. You don't say if you're trying to get sober or if you're already sober and trying to stay that way. If you're not yet sober, I'll offer you something to think about: my chronic conditions, though numbed by the alcohol, didn't get better (or, rather, my ability to deal with them didn't get better) until I got sober. Before that, I hurt constantly until I could get enough alcohol and/or other substances to deal.

How do I get to meetings? In the beginning, I was so desperate, I was afraid of what would happen if I didn't. I got a sponsor, met with her once a week for step work, and did the work she gave me to do so that I could take my steps. Desperation drove me to it.

I can't speak to the CFS. I do have FMS, RSD & rheumatoid arthritis (among other things), all of which have a fatigue component.

Peace & Love,
Sugah

Last edited by DesertEyes; 04-13-2010 at 06:13 PM. Reason: fixed broken quote
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Old 04-13-2010, 01:38 PM   #35 (permalink)  
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Quote:
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I have been looking for a place I can talk to other alcoholics with fibromyalgia. I thought we were a rarity. I didn't know there were so many. I also have CFS and arthritis. I have a question for you all. When I get home from work I can barely move. How do you manage to get to AA meetings? How do you keep up with your 12 step work?
Hi, tiggerkenwood. You don't say if you're trying to get sober or if you're already sober and trying to stay that way. If you're not yet sober, I'll offer you something to think about: my chronic conditions, though numbed by the alcohol, didn't get better (or, rather, my ability to deal with them didn't get better) until I got sober. Before that, I hurt constantly until I could get enough alcohol and/or other substances to deal.

How do I get to meetings? In the beginning, I was so desperate, I was afraid of what would happen if I didn't. I got a sponsor, met with her once a week for step work, and did the work she gave me to do so that I could take my steps. Desperation drove me to it.

I can't speak to the CFS. I do have FMS, RSD & rheumatoid arthritis (among other things), all of which have a fatigue component.

Peace & Love,
Sugah
"I can't speak to the CFS. I do have FMS, RSD "

huh???
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Old 04-13-2010, 01:43 PM   #36 (permalink)  
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Sorry, andy. CFS=Chronic Fatigue Syndrome; FMS=fibromyalgia syndrome; RSD=Reflex Sympathetic Dystrophy. Guess I could have taken a shortcut and said RA instead of spelling it out

Peace & Love,
Sugah
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Old 04-13-2010, 02:50 PM   #37 (permalink)  
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Sorry, andy. CFS=Chronic Fatigue Syndrome; FMS=fibromyalgia syndrome; RSD=Reflex Sympathetic Dystrophy. Guess I could have taken a shortcut and said RA instead of spelling it out

Peace & Love,
Sugah
So how active are your syndromes/diseases? I mean, can you walk, are you on a morphine pump, what's up with you? I know when my RA first came on my idea, at 30 years old, my idea of a good deal to live out my years was an assisted living home or state hospital - I was a wreck.
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Old 04-13-2010, 03:09 PM   #38 (permalink)  
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Cont...

Nowadays I've improved markedly. Combining medical advice, formal education and independent study I've decreased my medications by about 50-75% and my blood work looks about normal. The only remaining severe symptom is some serious swelling and inflammation in my knees reducing my ability to stand and walk to about 2-3hrs/day.

I’ve significantly changed my diet from red meats, processed, and fast foods to a variety of whole foods, lightly/uncooked, and targeted portions. I’ve also been moving more and more towards a regular exercise regimen where, most recently, I have been focusing on my knees on an exercise bike as well as gaining cardiovascular health as a latent result.

I’ve dropped 40# last year (6’2” @ 195#) and kept it off so far this year. I’m getting toned up but not really bulked, maybe it’s that fatigue thing, I just don’t have the motivation to stay at the gym more than 30-40 minutes. I work a couple three different/opposing muscle groups every day or two and that’s about it – but hey! It’s working! Now to just try to stave off this depression… blahhhhhh…

a
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Old 04-13-2010, 03:17 PM   #39 (permalink)  
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I'm functional. My RA was 13 years in remission before reappearing. I'm not full-blown right now. I'll have a couple of bad weeks or a month with it, then it will ease off on me for six months or more.

The Fibromyalgia gives me hell on a pretty regular basis, though I've found that with a good diet, exercise, sleep and minimizing (as much as possible) stress, my flares aren't as bad or last as long as they used to. I might have a couple of days where I have no choice but to go to bed, then be able to work through the daily stuff for the next couple of months.

The RSD is complicated. Like right now, my right leg hurts like hell and is cold as ice -- even though it's probably close to 80 degrees in here. As soon as I finish this paper (oh... gee, I think I forgot about that... oops), I'll go soak in a hot tub and get some warmth in it. The pain will ease then.

andy, my RA came on when I was in my early 20s. The pain was crippling for a few years before I got pregnant with my daughter, then I had 13 years with nothing more than my usual back-and-hip issues. I'd suggest you get pregnant, but that might be a little tricky, huh?

Oh, and no pain meds except Tylenol, and that, I only take for a headache. I use meditation, hot baths, aroma therapy, exercise, diet (no meat), good-quality vitamins (calcium, B-complex, E) and lots and lots of prayer. And I have a couple of sponsees who are hard cases -- they make sure I don't think about myself too often or too long.

Peace & Love,
Sugah
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Old 04-13-2010, 06:01 PM   #40 (permalink)  
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andy, my RA came on when I was in my early 20s. The pain was crippling for a few years before I got pregnant with my daughter, then I had 13 years with nothing more than my usual back-and-hip issues. I'd suggest you get pregnant, but that might be a little tricky, huh?

Peace & Love,
Sugah
I've heard about stories like that. Even ones dealing with near death infections, comas, and even severe head trauma I believe. I believe if I could reduce my stress things would get a whole lot better as stress is one of the biggest aggravators of inflammation.

I'm with you on the diet, rest, exercise, minus the pain meds. About the most I do is a combo of one Tylenol, one big mama aspirin, and one Benadryl before bedtime. This cocktail offers me the opportunity for a more restful, less painful, recuperative sleep that, in turn, begins to unravel the myriad of unhealthy lifestyle issues surrounding my disease.

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