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RE: Anybody out there with fibromyalgia? - 9/6/2009 11:41:17 AM
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cherish405
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From: The Land Down Under
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Fibromyalgia is awful to get at any age, but I think being so young, it would just be all the more difficult. Not being able to do all the things your friends are doing, interfering with school etc.
I know stress really triggers me off.
I knew I was sick. Doctors could pick up little things, because I told them they were there, but nobody put the whole picture together to come up with the diagnosis of fibromyalgia until I started seeing a rehabilitation physiologist. I think people thought I was a hypochondriac. Sometimes I thought I was a hypochondriac!
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From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/6/2009 3:01:00 PM
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IwillseekHim
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Has anyone ever done any research on fibro, such as when did the doctors first start diagnosing patients with this? I'd be curious to know if it was used as a diagnosis in the seventies. In 1979, I was thirteen and became very sick physically and emotionally. I suffered from much, including anorexia, which the doctors didnt want to label me as such. But, I developed overall pain, in fact, when I lost weight down to 50-60 pounds, I also lost all muscle tone and was wheelchair bound for almost a year. It makes me wonder if part of my problem was also fibromyalgia at that young age,13.....hmmm, gives me something to think about. Perhaps, I too, had it back then but the doctors did not diagnosis me as having such.
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RE: Anybody out there with fibromyalgia? - 9/6/2009 9:20:00 PM
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Adrenalinejunkie
Posts: 761
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From: Tennessee -- America at it's best
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quote:
ORIGINAL: cherish405
Fibromyalgia is awful to get at any age, but I think being so young, it would just be all the more difficult. Not being able to do all the things your friends are doing, interfering with school etc.
YESSS. School is REALLY hard for me. I recently started back and I've found that reading makes my fatigue worse. Also I have memory and concentration difficulties, because of the fibromyalgia. It definitely helps that I'm home schooled, but it's still hard. Thankfully, my parents now realize how much I'm struggling and are trying to find ways of working with me.
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RE: Anybody out there with fibromyalgia? - 9/7/2009 9:22:22 AM
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IwillseekHim
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AJ, so glad to see you are still here with us. I think about you and pray for you alot. As I have already stated, up until meeting you I did not know fibromyalgia would affect children. Now we also have March7(Hey M7) who also was plaqued early in life with this dreaded affliction. It is a blessing that you are able to be homeschooled. The mornings seem to be the worse for me. I am only able to work part time and have done this now for 9 years. It is an effort some mornings to move, so I am happy for you that you are homeschooled and able to adhere to your own schedule.
Where ya at, Cherish?? Hope all is well with you. Perhaps soon your weather will permit you to being outdoors more, soaking in all that vitamin D God gives us through the sunshine! I think it was you that mentioned about only having the disability pension to live on. May I ask if the diagnosis of fibromyalgia helped determine your case and allowed for you to be eligible? Just wondering. Fibromyalgia is so misunderstood. We are lucky to have found healthcare providers that take it seriously.
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RE: Anybody out there with fibromyalgia? - 9/7/2009 12:03:29 PM
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March7
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quote:
Sometimes I thought I was a hypochondriac!
Yes, I'd had times like that, too. Blessings to you today!
quote:
YESSS. School is REALLY hard for me.
(((AJ))) I remember feeling so unwell at times as a teen...school, chores (lived on a farm), extracurricular activities (very busy family). I'm so glad you have understanding and helpful parents and can be homeschooled. Being given by others around us the chance to take the time to figure out how to deal with, live with, treat, and trust God with our chronic pain and fatigue is a real blessing. I'm so glad you have a family that's trying to understand. (((AJ)))
My worst time as a young person was in college...when I also had anorexia, like someone else here as I read. Thankfully, Jesus came and saved me during that time (March 7, 1984), resolving quickly the anorexia (had it only one or two years). Though, like the rest of us here, He's allowed me to keep learning to trust Him through the fibromyalgia. I missed a lot of class in college (though still with not knowing why I felt so yucky). God got me through it somehow, though. And, He still does! 
quote:
Has anyone ever done any research on fibro, such as when did the doctors first start diagnosing patients with this?
I've done a little casual study on it. I've read that "unexplained illness" involving pain and fatigue, with the patient otherwise seeming well, can actually be traced back centuries in medical logs. It's gone by many names, and it's gone in and out of being trusted as an actual ailment. In some time periods, it was considered a physical condition. In some eras, it was considered a mental disorder. And weaved in and out of those time periods, it was thought to be hypochondria. At FibroCenter.com, I read, "The tender points that are common with fibromyalgia were first described by a doctor in Scotland in the early 1820s. Eighty years later, the term "fibrositis" was first used to describe the chronic and crippling pain of fibromyalgia. The ending "itis" was used as a part of its name because swelling was thought to be a cause of the pain. It took until 1976 for the name of the condition to be changed to "fibromyalgia." It was changed because swelling in the body was no longer thought to be the cause of pain. The term fibromyalgia is taken from three Latin and Greek words: fibra, which means fibrous tissue and has to do with painful tendons and ligaments; myos, which means muscles; and algos, which means pain. In 1981, the first study confirmed that symptoms and tender points could actually be found in the body. Nine years later, in 1990, the American College of Rheumatology wrote the first set of guidelines to help diagnose the condition. In 1997, the first national organization for fibromyalgia, the National Fibromyalgia Association (NFA), was formed. In 2005 the first guidelines for treating fibromyalgia pain were published by the American Pain Society." At FibroFactPage.com, I read, "Fibromyalgia has been known by many other names, including chronic rheumatism, myalgia, muscular rheumatism, fibrositis, myofibrositis, and spinal irritation. Some of the terms once used to describe fibromyalgia, such as “morbid affectation” and “Charcot’s hysteria,” reflect an unfortunate tendency of the medical community to dismiss FMS as a form of hypochondria or mental illness. Before the development of sensitive, technologically advanced tests, fibromyalgia sufferers seemed to present no obvious measurable physiological changes." I just Googled "history of fibromyalgia" and then "names of fibromyalgia" to do a simple study on this. I'd been wondering it, too, SeekHim, as I hadn't looked this stuff up for a few years, so your question really interested me, too.
A Question
Do any of you find your fibromyalgia ebbs and flows or in other ways changes over the years? Like I said, I've had mine 30 years now (though I saw that last year in this thread I said 25 years which means, I guess, I didn't remember how old I was...HA). Over that time, it's ranged from barely noticeable to quite debilitating (and all points in between). I have a set handful of symptoms that stay the same over the decades (ranging in intensity, as I noted), and then I have other symptoms that visit me for a few weeks to a couple of years and then fade off into the sunset. For example, my steady and daily set of symptoms include widespread (head to toe) pain with all the tender points, flu-like aches and pains, sore throat, achy eyes (like you have with the flu), stiffness, headache, fibrofog, chest/rib/sternum pain, never quite feeling like I got out of bed, muscle twitching, and the like. These ebb and flow in intensity over a year (and improve greatly when my MD and I have hit our stride in treating it, which - for me - we do nutritionally and naturopathically). (Some of these can also be caused by my moderate chronic kidney disease, caused by an entirely unrelated issue, though I had them before the kidney disease.) The symptoms I've had over the years that have visited for a few weeks to a couple years (and may visit again) have included IBS, sleep disorders, dizziness, depression, chemical/light/sound sensitivities, severe touch sensitivities (the swimming pool water felt like shards of icy glass, a person's pat on the shoulder felt like a bruise, etc), memory issues, and the like. (Another symptom or whatever that I have, which my cardiologist confirmed while I had normal pre-surgical tests recently, is an extremely-no-big-deal and mild mitral valve prolapse. My cardiologist said this is related to my fibromyalgia, though in no way does everyone with fibro develop it.) So, anyway, do you find your symptoms ebb and flow or in other ways change over the years? Thanks. 
"The eternal God is your refuge, and underneath are the Everlasting Arms" (Deuteronomy 33:27a).
< Message edited by March7 -- 9/7/2009 12:46:43 PM >
_____________________________
"Now to Him who is able to keep you from stumbling and to present you blameless before the presence of His glory with great joy...before all time and now and forever. Amen" (Jude 1:24, ESV).
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RE: Anybody out there with fibromyalgia? - 9/8/2009 11:02:43 AM
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cherish405
Posts: 21682
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From: The Land Down Under
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quote:
ORIGINAL: IwillseekHim
Where ya at, Cherish?? Hope all is well with you. Perhaps soon your weather will permit you to being outdoors more, soaking in all that vitamin D God gives us through the sunshine! I think it was you that mentioned about only having the disability pension to live on. May I ask if the diagnosis of fibromyalgia helped determine your case and allowed for you to be eligible? Just wondering. Fibromyalgia is so misunderstood. We are lucky to have found healthcare providers that take it seriously.
I'm here. I go to see the rheumatologist next week to find out if I have rheumatoid arthritis in my hands. I've been spending a bit of time outside lately. Spending time with my dog, looking after my miniature garden that I've just started up. There's not much sunshine around though. All we've had is lots and lots of rain.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/10/2009 5:16:13 PM
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IwillseekHim
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Hey everyone! Hope all is well with each of you. AJ, I am sorry for all that you are going through. I didnt realize that fibromyalgia effected memory/concentration, but I believe you are right. Might be why I cant seem to keep up with anything in my house!
Cherish, I am glad you are getting out even if it is minus the sunshine. Just making yourself get out is probally tough some days. Keep us posted on your rheumatoid doctor's appt. I am anxious to know if this is the reason you have trouble with swelling so much.
March7, my overall aches and pains vary from day to day. Rain and cool weather play a factor I believe. The winter is difficult and we really dont have a winter compared to most. I live in southeast Georgia. I dont know how people in the North deal with it. They have winter! Hope you are well too. Keep us posted on your brother, too, please.
Thinking of all of you today and praying for others who live with fibromyalgia. God bless to all. Melissa(IwillseekHim)
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RE: Anybody out there with fibromyalgia? - 9/10/2009 11:55:25 PM
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cherish405
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Oh yes, fibromyalgia definitely affects concentration and memory. It's referred to as 'fibro fog'. I used to LOVE doing cross stitch and some other crafts. I found it really easy to do. I haven't been able to do it for years. I thought originally that it was due to depression. I'm sure there's a component of that in there, but thinking about it, I'd say fibro fog has a huge part to play in that too. I just can't concentrate on it enough to do it. It's a shame because I really miss it. Oh well, I'm hoping that will change some time soon. For years I couldn't read because my concentration span was so bad. Yes, there are times when I feel like I'm reading ancient Cantonese instead of English, but at least most of the time I can concentrate enough to get the gist of things.
Less than a week to go until I go and see the rheumatologist. I'm really glad to be going to see her. I've discovered a huge lump on the inside of my right elbow and it feels like bone. Something else to ask her about. I don't have a corresponding bone or lump on the left elbow.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/11/2009 11:31:41 AM
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March7
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The deepest of blessings to you, Melissa, and may the Lord be your joy and strength in the midst of aches and pains.
God greatly bless your rheumatology appointment next week, Cherish, and may it lead to a whole new path of understanding as you navigate this fibro. 
God's goodness to AJ, too!!
This morning, my son (who's a senior in HS) watched me walk down the hallway after I just woke up and joked to me, "Mom, every morning when you first wake up you look like you're on drugs." I said, "I feel like it," which is true...talk about fibrofog. Then I asked him (genuinely...'cause I don't know what's normal), "Do you hurt all over when you get up in the morning?" "No," he answered, "Not at all. Do you?" "Yes, all over." "Every morning?" he asked. "Yes." "For how long?" "Years." Of course, my kids have always known me to have fibro (and a couple other things), and they've grown up with an ill mom, and they are very sweet to me...while I try to work hard to be the helpful mom and wife I want to be (not sure I always do very well at it). But, I like when they ask to know a little more. 
"Blessed be the God and Father of our Lord Jesus Christ, who has blessed us with every spiritual blessing in the heavenly places in Christ" (Ephesians 1: 3).
_____________________________
"Now to Him who is able to keep you from stumbling and to present you blameless before the presence of His glory with great joy...before all time and now and forever. Amen" (Jude 1:24, ESV).
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RE: Anybody out there with fibromyalgia? - 9/13/2009 9:44:05 PM
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Adrenalinejunkie
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From: Tennessee -- America at it's best
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You know, in my opinion the worst thing about this disorder (besides the fatigue) is probably the hypersensitivity to the cold. It is seriously ANNOYING! I mean, it can be 78F in the house and I'll be FREEZING. It's like if there's even the slightest chill in the air, I'll feel it.
I used to be able to take the cold, in fact I used to say that it wasn't cold until it was in the single digits (which rarely happens here). Now, 60F is cold. And, of course, when it's cold enough it hurts.
This disorder is just plain freakin' ANNOYING!!
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RE: Anybody out there with fibromyalgia? - 9/13/2009 10:47:56 PM
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cherish405
Posts: 21682
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From: The Land Down Under
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quote:
ORIGINAL: Adrenalinejunkie
You know, in my opinion the worst thing about this disorder (besides the fatigue) is probably the hypersensitivity to the cold. It is seriously ANNOYING! I mean, it can be 78F in the house and I'll be FREEZING. It's like if there's even the slightest chill in the air, I'll feel it.
This disorder is just plain freakin' ANNOYING!!
I totally know where you're coming from. Even when I was in my teens, I had a problem with the cold. If I got cold, I would begin to itch. When I scratched the itch, I'd come up in welts. I'd be like that every autumn/fall/winter. In recent years, if I get too hot in the spring/summer, I get the same way. I itch, then scratch, the break out in welts. Extreme temperatures are fun, NOT!!!  
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/16/2009 12:10:37 AM
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cherish405
Posts: 21682
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Tomorrow I finally get to go and see the rheumatologist. I am and not looking forward to the diagnosis. If you can understand that.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/17/2009 3:59:44 AM
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IwillseekHim
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Cherish, I am praying for you this morning. I can understand how you are dreading a diagnosis. But, with the diagnosis of rheumatoid maybe then the doctors will be able to successfully treat you with the proper medications. Stay strong and keep us updated. Love, melissa
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RE: Anybody out there with fibromyalgia? - 9/17/2009 5:49:00 AM
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manda59
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Cherish
Is this your first time of seeing the rheumatologist over this? Have you had any blood tests or an MRI scan already?
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"What Manda said; well-stated and wise." deermousie, September 2010
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Anybody out there with fibromyalgia? - 9/17/2009 10:08:49 AM
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pink..
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From: Indiana
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quote:
ORIGINAL: cherish405
Tomorrow I finally get to go and see the rheumatologist. I am and not looking forward to the diagnosis. If you can understand that.
How did it go?
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RE: Anybody out there with fibromyalgia? - 9/17/2009 8:00:59 PM
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MissInnocent
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Hello folks. I have been lurking in this thread now and again but thought I'd finally jump in. I was diagnosed with FM 5 years ago. I have been sick my entire life though. I don't recall ever really being "healthy." Honestly I can deal with the pain pretty well. My problem is tummy issues. I have resigned myself to the fact they are FM related because we can't find any other cause. Also, numbness in my legs and one arm. I think my legs is brought on by the way I sit at the computer. But sometimes I get numbness at other times.
Anyone else have the tummy and numbness issues.
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RE: Anybody out there with fibromyalgia? - 9/17/2009 8:39:49 PM
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IwillseekHim
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Hey there, so glad you have jumped in! Sorry, that it is because of fibro, but I think we do a pretty good job here at being able to relate to others. Interesting that you have not felt well pretty much your whole life. Recently after reading posts here, its made me think that possibly I have had it, although undiagnosed, for much of my life also.
As far as the tummy ailments, I think mine are more related to the migraine headaches that I have recently been plaqued with.
I do have numbness in my right hip around that never goes away. This I contributed to a herniated disc I have.
I do have an occassionaly numbness from like my elbow down to my fingertips. Not sure what this is from. I didnt realize that it could perhaps be from the fm. I am anxious to see if others experience this and it is directly linked to fibro. So, thanks for your questions!
Hope you will hang out more often, there seems to be a few of us that post regularly. In fact, I am anxiously awaiting a post from cherish, she had her appointment today.... Oh Cherish, where are you???
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RE: Anybody out there with fibromyalgia? - 9/18/2009 12:01:01 PM
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cherish405
Posts: 21682
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From: The Land Down Under
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I'm here. Just trying to find a way to word things.
I went to the rheumatologist to talk about a few things.
1. Better pain management. My pain is not being managed as well as I would have liked. She's upped the dosage of my med, and has told me the next med will be a patch given to cancer patients. Can't have any other pain med at all whilst I'm on that one. I've heard some stories about it and am not too keen on things. We'll have to see how things go.
2. I have a huge lump on the inside of my elbow. She doesn't know if it's a ganglion or a cyst, so I have to get an ultrasound/sonogram to find out what it is.
3. I went in, expecting her to tell me that I have rheumatoid arthritis. She doesn't believe that it is, despite the fact that it looks very much like rheumatoid arthritis. I had a heap of blood tests done to rule out other things. It's a syndrome that she hasn't seen in a very long time. Honestly, I feel like a freak! When I go back to see her next time, hopefully I will know more about the condition and she's going to research the condition too.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/19/2009 12:12:15 PM
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cherish405
Posts: 21682
Joined: 4/11/2005
From: The Land Down Under
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So that I don't repeat myself, I've put more information about what happened at the rheumatologist's in my blog.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/19/2009 4:35:37 PM
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IwillseekHim
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Hi Cherish, I haven't read what you posted on your blog yet but I will. I really expected it to be RA also. Sorry, about your elbow, too. Hope whatever that is it is not giving you too much trouble.
I have been really in a bad way with migraines. Keep me in your prayers, please. When it makes me physically sick like it has then I am beyond miserable.
I wanted to give a shout out to AJ, I see it is her birthday today. Hope you having a wonderful birthday, dear. Have you made it to the big 2-0 yet?
Not sure if any of you are following p/p but March7 is not with us right now. She is taking a break. Keep her and her brother in your prayers, he is fighting the raging wildfires out in California.
Blessings to all of you, sincerely, melissa
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RE: Anybody out there with fibromyalgia? - 9/20/2009 12:00:56 AM
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cherish405
Posts: 21682
Joined: 4/11/2005
From: The Land Down Under
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Happy birthday, AJ. Hope you had a great day.
I didn't know that March7 was taking a break. Thanks for letting us know. I'd be wondering where she is otherwise.
Melissa, sorry to hear you're having migraines. I've had them as bad as you are having them. Not nice.
My elbow is causing no pain. Only when the rheumatologist got a hold of it. My hands are the major pain.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/20/2009 12:03:34 AM
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cherish405
Posts: 21682
Joined: 4/11/2005
From: The Land Down Under
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Happy birthday, AJ. Hope you had a great day.
I didn't know that March7 was taking a break. Thanks for letting us know. I'd be wondering where she is otherwise.
Melissa, sorry to hear you're having migraines. I've had them as bad as you are having them. Not nice.
My elbow is causing no pain. Only when the rheumatologist got a hold of it. My hands are the major pain.
_____________________________
From this time forth, with the powers vested in me, this post serves as public notice of the issuance of one unrevocable lisence to cherish405 to have special dispensation in the matter of drive-by huggings as she sees fit. ~rayofson~
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RE: Anybody out there with fibromyalgia? - 9/20/2009 9:21:37 AM
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IwillseekHim
Posts: 3532
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Sorry to hear that we have yet one more thing in common, Cherish. I had never dealt with migraines until May of this year. Today I feel as though I have been run over by a truck! For the next day or so I will experience muscle spasms in my neck. Seems to be a pattern. I try to stay encouraged but you know yourself that it is difficult when you're in constant pain. The nausua from the migraine is a bit of a bummer as well.
March7 says she is taking a break for a month or two. She is recovering nicely from surgery, though. Trying to remember her brother and all the firefighters. They have had a hard time controlling the fires. My husband was a firefighter for about eight years. Recently, he has thought about signing back up again. Not sure how I feel about this one.
Well, hope all will have a blessed day today. Take care, everybody. Love, your Sister in Christ, melissa
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