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Old 04-02-2012, 11:15 AM
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I usually avoid dry food when I cook. I totally prefer stews and things that have a lot of fluid.

SS is usually diagnosed measuring eye fluid and saliva (you basically spit in a cup), and it is common to have the labs to go with it (ANA+ RF+ SSA SSB high ESR and maybe even antibodies against thyroid).
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Old 04-02-2012, 11:31 AM
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Default fibro pain

fibro, provides 2 types of days bad and really bad the thought of another med makes me ill pain med induced sleep only relief. I know it could be worse but most days I really wonder.
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Old 04-02-2012, 02:24 PM
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fibro, provides 2 types of days bad and really bad the thought of another med makes me ill pain med induced sleep only relief. I know it could be worse but most days I really wonder.
sorry to hear, daggerdon some days I really wonder, too...
Old 04-02-2012, 02:27 PM
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My biggest problem is my knees. I got some magnetic wraps and they really do work.
I have no idea how they work, but my knees feel much better when I wear the magnets.
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Old 04-02-2012, 04:01 PM
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WOW lots of you out there!I also suffer from chronic pain,am still in diagnoses stage but its being going on 4 years now,was kinda stubborn about going to dr.am now taking lyrica 150 3 times and oxyneo 60 mg 3 times daily and it is not working at all am going to a different dr next week made appt today my regular dr just got 6 mmotnh suspension and truthfully he was kinda useless more or less just going to see him for refills,oh and i take zoplicone 7.5 mg to sleep but not very often cause they make me real dumb next day,kinda feel better seeing all these posts you kinda feel pretty alone when you are awake all night in pain.wat makes me mad is not being able to do what i enjoy doing, went out finding sheds with my brother on sat and could only walk for about an hour or so then had to back to the truck and wait for my brother to come back,was in too much pain to do anything but lay in tuck bed and wait thank god it was nice out but was very disappointed that i couldnt do more,am glad me and my brother split up and went different ways on the walk dont like other people knowing about it. am kinda stubborn,have always been able to do what i want to do and hate the fact that now i cannot anyways new dr next week see what happens cant wait to go through all test again what a pain in the ass...........ooops sorry trying to stay positive.so we'll see what happens next week
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Old 04-02-2012, 04:30 PM
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I am really surprised at the amount of Lyrica everyone is taking. DH only takes 75mg once a day. He says he can't handle anymore than that. Makes him dizzy. I don't know if that dosage is the original or not. The doctor he has is a family practice doc. DH actually saw him the first time when he filled in for our original doc. DH thought at first he had arthritis or something. He couldn't pick up a glass one way with his hand, had to turn his arm around and pick up the glass. The new doc did some research real quick while we were there, did some pressure point tests, ran some blood work, blah blah blah...process of elimination came up with the fibro diagnose. I do know the doc is very conscious of what and how much DH takes and runs blood work every six months.
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Old 04-02-2012, 07:56 PM
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Default fibro pain

Thank"s Siege571, I never knew so many had it Doc said it affects more women than men I was diagonised about 10 yrs ago I thought I was going crazy hurting all the time waking up feeling like fireworks going off all over my body. My best wishes to all affected by it:
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Old 04-02-2012, 08:14 PM
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Quote:
Originally Posted by brewmaster111 View Post
WOW lots of you out there!I also suffer from chronic pain,am still in diagnoses stage but its being going on 4 years now,was kinda stubborn about going to dr.am now taking lyrica 150 3 times and oxyneo 60 mg 3 times daily and it is not working at all am going to a different dr next week made appt today my regular dr just got 6 mmotnh suspension and truthfully he was kinda useless more or less just going to see him for refills,oh and i take zoplicone 7.5 mg to sleep but not very often cause they make me real dumb next day,kinda feel better seeing all these posts you kinda feel pretty alone when you are awake all night in pain.wat makes me mad is not being able to do what i enjoy doing, went out finding sheds with my brother on sat and could only walk for about an hour or so then had to back to the truck and wait for my brother to come back,was in too much pain to do anything but lay in tuck bed and wait thank god it was nice out but was very disappointed that i couldnt do more,am glad me and my brother split up and went different ways on the walk dont like other people knowing about it. am kinda stubborn,have always been able to do what i want to do and hate the fact that now i cannot anyways new dr next week see what happens cant wait to go through all test again what a pain in the ass...........ooops sorry trying to stay positive.so we'll see what happens next week
sorry to hear about that, brew. It took me a while to accept the fact that I couldn't do as much and learn to lower my standards for myself.

ETA: I hope your visit goes well and that your doc(s) do their best to figure out what's going on...
Old 04-02-2012, 08:18 PM
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Originally Posted by Dlw2x2 View Post
I am really surprised at the amount of Lyrica everyone is taking. DH only takes 75mg once a day. He says he can't handle anymore than that. Makes him dizzy. I don't know if that dosage is the original or not. The doctor he has is a family practice doc. DH actually saw him the first time when he filled in for our original doc. DH thought at first he had arthritis or something. He couldn't pick up a glass one way with his hand, had to turn his arm around and pick up the glass. The new doc did some research real quick while we were there, did some pressure point tests, ran some blood work, blah blah blah...process of elimination came up with the fibro diagnose. I do know the doc is very conscious of what and how much DH takes and runs blood work every six months.
I've read that a lot of ppl with FM have difficulty taking meds (or at least the full strength) and can have some odd side effects. Also, low blood pressure is common with FM--perhaps the Lyrica drops his BP lower???
Old 04-02-2012, 08:20 PM
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Thank"s Siege571, I never knew so many had it Doc said it affects more women than men I was diagonised about 10 yrs ago I thought I was going crazy hurting all the time waking up feeling like fireworks going off all over my body. My best wishes to all affected by it:
Is it nerve pain for you? Do you take Lyrica for it?
Old 04-02-2012, 08:27 PM
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Here's something else that's kind of weird for folks with FM or CFS:

I thought this was all in my head. I was OK if I was walking around, but standing still really seemed to bother me. Like at church, especially after sitting for an hour, at the end they want everyone to stand up to sing. I would feel horrible--kind of dizzy and headachy. I thought, "How can I feel better walking around than just standing???"

It's called delayed orthostatic hypotension and is common with people with FM and CFS. I read about one woman who wore mast trousers (what paramedics will put on a person to raise their blood pressure--like inflatable pants) to keep her BP up just so she could stand up long enough to do the dishes!

It's not in your head
Old 04-02-2012, 08:35 PM
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He actually takes Lisinopril 20mg for high blood pressure.

Me, I wouldn't know what normal blood pressure is like. My average is 96/42. I almost look forward to hot flashes so I am not so damn cold all the time.
Old 04-02-2012, 08:41 PM
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Sooooo very sorry to hear of other's suffering

Fibro set up it's eveil little house in my body many years ago after a car wreck. And yeah, it feels exactly like somebody hitting a major bone with a wooden baseball bat as previously mentioned.

Doc first gave me arthritis type drug for it, commenced to immediately bleed (GI) Nope, none of that for you he says. Better hope you don't ever get arthritis or you are going to be in BIG trouble Missy, he says.

FastForward many years later... and after trying many drugs later... The ones that work on the psych level make me so depressed I want to take a long leap off a short cliff.
Can't forget my old friend GI bleeding for most of the others.
Pain pills leave me in a fog, unable to drive safely and feeling like I'm just almost right where I wish I was most of the time... dead...

Throw in chronic sleep disorder, hormonal issues after a total hysterectomy, fighting a natural inclination toward depression and negativity...

Well, I'm just a gol~durn Greek tragedy as Rockhound said in Armageddon.

Now that I've had to add the pain of a broken bone to my list, I truly don't care whether I live or die most days. The idea of having to survive in a bugout situation without my soft mattress toppers and other comforts that make it possible for me to exist in some level of comfort leaves me ready to squall like a baby.
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Old 04-02-2012, 09:21 PM
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I truly feel for each and everyone of you. Had about a 5 year run with a great deal of pain, but finally had a successful back surgery by a great doc in Richmond, and have never looked back. Good as new these days.

I am glad to see that no "experts" have dropped a note to say fib , etc is just something conceived in the mind. Two things I know is that it does exist and one should never presume they know what kind of pain another is experiencing. God bless and hope each find long range relief.
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Old 04-03-2012, 02:07 AM
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Originally Posted by SurvivorGirlAL View Post
Sooooo very sorry to hear of other's suffering

Fibro set up it's eveil little house in my body many years ago after a car wreck. And yeah, it feels exactly like somebody hitting a major bone with a wooden baseball bat as previously mentioned.

Doc first gave me arthritis type drug for it, commenced to immediately bleed (GI) Nope, none of that for you he says. Better hope you don't ever get arthritis or you are going to be in BIG trouble Missy, he says.

FastForward many years later... and after trying many drugs later... The ones that work on the psych level make me so depressed I want to take a long leap off a short cliff.
Can't forget my old friend GI bleeding for most of the others.
Pain pills leave me in a fog, unable to drive safely and feeling like I'm just almost right where I wish I was most of the time... dead...

Throw in chronic sleep disorder, hormonal issues after a total hysterectomy, fighting a natural inclination toward depression and negativity...

Well, I'm just a gol~durn Greek tragedy as Rockhound said in Armageddon.
I like it. I'm gonna remember this. Humor helps me

Quote:
Originally Posted by SurvivorGirlAL View Post
Now that I've had to add the pain of a broken bone to my list, I truly don't care whether I live or die most days.
Aww...I sorry. I have some of those days, too. Fortunately for me, they are few and far between. But if I had more pain like you, I'd be right there, too.

Quote:
Originally Posted by SurvivorGirlAL View Post
The idea of having to survive in a bugout situation without my soft mattress toppers and other comforts that make it possible for me to exist in some level of comfort leaves me ready to squall like a baby.
No kidding. I absolutely love my tempurpedic--it has made such a huge difference.
Old 04-03-2012, 02:12 AM
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I truly feel for each and everyone of you. Had about a 5 year run with a great deal of pain, but finally had a successful back surgery by a great doc in Richmond, and have never looked back. Good as new these days.

I am glad to see that no "experts" have dropped a note to say fib , etc is just something conceived in the mind. Two things I know is that it does exist and one should never presume they know what kind of pain another is experiencing. God bless and hope each find long range relief.
Thanks. Glad you're doing better

I had a doctor who did that once: "Well, tell me--where do you want to be in 5 years?" Yeah--that's my problem--I just need to get motivated and figure out where I want to be in 5 years.
Old 04-03-2012, 02:44 AM
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To Sjogren sufferers - ever heard of Blephasteam goggles? (my own eyes & body became fried from extensive EMFs of computer environments. I never got blephasteam, rather read of it. They may just be in the UK)

To FM sufferers - i've had FM since childhood, which eventually acted as a decoy re: the worst trigger for me:

NOT my mercury amalgams (which i replaced 17 of them years ago)

RATHER - it's been the EMFs of constant [high ghz] computer-phosphorescent environments & bright-light environments. Also: Too much RAW citric-acid, onions & sodium, sodium-citrate & sodium-nitrites hidden inside store-bought foods.

To those of you who wake up feeling like trucks ran over you:
Becker of Body Electric states that the head becomes positively charged during sleep. When you wake up & walk around, the polarity reverses. Also the body contracts at night, which can explain pain.

EMFs, acids, citrates, salts & alcohol all can cook you.

Whereas thickeners (such as corn, starch), and coagulants (such as black cherry, eggs, organic-honey), and astringents (such as coffee or black-cherry-berry), can have a calming/patching effect. Ditto re: yellow oils, yams & probiotic yogurt.

To help avoid the pain-trigger of EMFs:

It may help to minimize cellphone, avoid digital stuff, and use a very low-power Netbook with Intel Atom processor, such as Asus EEEPC, or Acer Aspire, or HP Mini.
In conjunction with projected light of projector such as HS201 by LG Electronics.
Alternatively: the Fit-PC2, albeit only if used with projector (rather than LCD or LED monitor).


EMFs are like Rapid Aging Syndrome (per Dr. Havas - check out youtube)

A cheap way to "hear" EMFs:
Portable AM radio tuned to white noise, then point the AM receiver toward CFL bulbs, or DECT phones, or digital stuff.
Old 04-03-2012, 10:06 AM
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Quote:
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I truly feel for each and everyone of you. Had about a 5 year run with a great deal of pain, but finally had a successful back surgery by a great doc in Richmond, and have never looked back. Good as new these days.

I am glad to see that no "experts" have dropped a note to say fib , etc is just something conceived in the mind. Two things I know is that it does exist and one should never presume they know what kind of pain another is experiencing. God bless and hope each find long range relief.
If I had a nickel for every time some "expert" has told me my headaches were caused by depression (I don't "do" depressed -- I "do" ****ed off! ), or even better, that they are psychosomatic, I'd be a wealthy woman!

I finally found a neurologist who has studied the changes that occur in nerves and their pathways over the course of time due to chonic pain and I tell you he is a dream come true! He's a straight shooter (kinda like me) and gets right to the point -- No beating around the bush with this guy! The JBT thinks he's a little harsh but I like that he doesn't sugar-coat things.

I still hurt, and that is never gonna go away -- but somehow having a doctor who believes you and is willing to work with you, as opposed to telling you that you must be drug-seeking (or a nut case), when you tell him how your body is responding to whatever treatment you are trying makes it better, even on the bad days.
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Old 04-03-2012, 12:00 PM
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Default fibro sucks....

due to stress, hard labor, chemical exposure, and a "depression" issue, i have had fibro pain for the last 7 years. To me, it feels like some giant hand has slammed down on my entire body. its gotten to the point that even just having my wife or kids scratch my back, my skin actually hurts.

I also have neuropathy in my feet and legs caused by, what the docs tell me, is trapped, inflamed nerves in my sacrum and spine area. Feet "hurt" all the time in shoes. but are numb to the touch. 3 years ago i went deer hunting and hiked all day. took my shoes off later that night and my sock was very bloody; i had worn a hole through the skin on my big toe clean through to the "meat". At times, it also feels like my foot is getting hit with a piece of rebar. the pain slowly circles out from the "hit" point like ripples in a pond. this will go on for hours. I have dropped heavy and sharpe things on my feet and toes and havent really felt much. I have to continually check for frostbite and blisters.

I currently take Nabumatone(a generic NSAID), Also on vicodin, Flexaril, and neurontin (800 mgs, 3X/day). They sort of keep me mobile and almost ok to live with. I find that hot baths with epsom salt in the winter help with the pain. I love cold weather, but it causes more pain during that time of the year.
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Old 04-03-2012, 03:36 PM
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due to stress, hard labor, chemical exposure, and a "depression" issue, i have had fibro pain for the last 7 years. To me, it feels like some giant hand has slammed down on my entire body. its gotten to the point that even just having my wife or kids scratch my back, my skin actually hurts.

I also have neuropathy in my feet and legs caused by, what the docs tell me, is trapped, inflamed nerves in my sacrum and spine area. Feet "hurt" all the time in shoes. but are numb to the touch. 3 years ago i went deer hunting and hiked all day. took my shoes off later that night and my sock was very bloody; i had worn a hole through the skin on my big toe clean through to the "meat". At times, it also feels like my foot is getting hit with a piece of rebar. the pain slowly circles out from the "hit" point like ripples in a pond. this will go on for hours. I have dropped heavy and sharpe things on my feet and toes and havent really felt much. I have to continually check for frostbite and blisters.

I currently take Nabumatone(a generic NSAID), Also on vicodin, Flexaril, and neurontin (800 mgs, 3X/day). They sort of keep me mobile and almost ok to live with. I find that hot baths with epsom salt in the winter help with the pain. I love cold weather, but it causes more pain during that time of the year.
Wow--so sorry to hear about that, BT. Is surgery an option for the trapped and inflamed nerves? I wonder if it's harder on guys to be like this since your traditional role is to be the "breadwinner." I would be way more stressed if I felt like my spouse and kids were depending on me to "bring home the bacon" so to speak.
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