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Fibryo, Anyone? How many of us have it?

#1 User is offline   Ro 

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Posted 08 November 2005 - 12:39 PM

I keep reading here and there that some of you guys have Fibro, too. I've had it ever since my 17 year old son was born. I've had times when it really wasn't bad at all (as long as I was sleeping, I felt good) and other times when the Fibro was running my life.

Right night, the Fibro is in control.

So I'd like to know - who has it and what kind of things does your doctor have you doing for it? Do you mind sharing?

#2 User is offline   Artsy22 

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Posted 08 November 2005 - 01:31 PM

I had some stress related tension in high school that was diagonsed as fibro. It was treated with massage therapy which was painful and wonderful all at the same time. However, I've sensed learned that it probably wasn't fibro at all.

I have recently started going to a chiropracter (something I've been against my whole life, but have recently had my mind changed about). Anyway, one of the secretaries that works for my doctor used to have severe fibro. She went through 9 differen medications at one point and nothing was helping. She started going to a chiropracter and now considers herself cured. Just knowing a bit about the pain that you have struggled with Ro, I can just imagine what joy it would bring you to be cured.

Perhaps it's worth looking in to if you haven't tried it already.
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#3 User is offline   Wxchic 

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Posted 08 November 2005 - 07:25 PM

Well, I had NO idea what it was until I just did some research on the internet (isn't technology the best??) Anyway, I feel for you, although I don't have the condition.

I was once diagnosed with Chronic Fatigue Syndrome, but since I have been out of work, most of my symptoms went along with it. I still have trouble getting a good nights sleep, and although meds were recommended, I REFUSE to take them. I hate medicines of ANY kind and have always believed that there must be something that can be done naturally. That doesn't mean I don't take meds...with a bad period, I do take Advil, but will try to fight headaches with aromatherapy.

It sounds dibilitating and depressing. I would think that a healthy lifestyle would help a condition like that as well as light exercise...nothing strenuous...I could be wrong, I'm not a doctor.

Support is certainly what you ladies with this condition need, and this would be a great forum to air that. A hobby like this would certainly help to make those bad days a bit better...

Theresa

"Now and then it is good to pause in our pursuit of happiness and just be happy."

#4 User is offline   gdsjoy 

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Posted 08 November 2005 - 07:44 PM

Have had it for about 3-4 years. My physician believes it is a result of the tramadic experience I went through 4 years ago.

I have been living a healthy lifestyle. Was exercising, walking etc. Quite a bit this spring, well, as much as I could. Am the worst I have been right now. But God has blessed me with wonderful parents that live close by, two wonderful boys that bring joy into my days, and a very supportive husband who does everything! He is fantastic.

Dr. Teitelbaum's book From Fatigued to Fantastic is one of my physician's favorites. She also has FMS and is very helpful. She has truly been a godsend.

As for the Chiropractor, I have been going since before I had a name for my symptoms. I do get worse quikly if I don't go regularly, but a lot of the time I don't feel much better after going.

A friend of mine goes to a massage therapist once a month. She moved out here for a year and her FMS got a lot worse. Since she has been back in NC she is seeing her massage therapist again. She says she helps her out a lot.
The joy of the Lord is my strength.

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michelle woods

#5 User is offline   gdsjoy 

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Posted 09 November 2005 - 07:31 AM

I do take pain meds, and magnesium with malic acid. Will start taking more suplements soon. My physician has had it for 12 years I think and does pretty well until something very stressful comes along. But she shows there is hope. She is really pretty active most of the time. Check out Teitelbaum's website.https://www.jacobteitelbaum.com/jthome.nsf
Hope it helps.
I know I won't get better any time soon, but hope within ten years I will be doing better. I really hope when my kids are teens that I am doing better!
The joy of the Lord is my strength.

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#6 User is offline   Crueltyfre/Lori 

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Posted 09 November 2005 - 08:32 AM

I have it Ro. It was diagnosed in the late 80's but had it a lot longer. Because I also have a bone disease (Fibrous Dysplasia), there were years when I was complaining of things that were actually it, but attributed to the Dysplasia simply because no one knew anything about either problem.
As to what my dr's do about it, well, basically, nothing. The Dysplasia takes a higher precedent and there's no treatment for that other than pain killers, muscle relaxants and a sedentary life off the bones....but those things work on the fibro as well. For many years I had an outdoor spa and as soon as I got up in the morning I'd go soak and then right before bed I'd do the same. Worked wonderful, but I went through three spas as the mechanics don't last long when exposed to Florida humidity day in and day out.
I'm in a catch-22 thing...they say exercise is great for the fibro, but my bones are too weak from the dysplasia to allow that....which is great as I hate exercising and now don't have to! woo-hoo, off the hook!!
I sorta eat healthy...I'm an ethical veg, which is really different from the health vegs.
I don't eat the weird "healthy" foods, but I don't eat meat or dairy either.
I feel for you having to work and take care of family with this. That's gotta be rough. I stopped working in the late 80's as working and trying to force my body to do what it couldn't on days that it shouldn't really made things worse. I have good days and bad days, and when I have bad days, I don't feel guilty spending a day in bed on pain pills as there's no job/family I feel like I "should" be doing for.
Lori

#7 User is offline   gdsjoy 

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Posted 09 November 2005 - 08:44 AM

Crueltyfre, on Nov 9 2005, 08:32 AM, said:

For many years I had an outdoor spa and as soon as I got up in the morning I'd go soak and then right before bed I'd do the same. Worked wonderful, but I went through three spas as the mechanics don't last long when exposed to Florida humidity day in and day out.
Lori
<{POST_SNAPBACK}>

My mother-in-law had been after me to check into a spa also. She thinks health insurance should cover it. Any idea?
The joy of the Lord is my strength.

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michelle woods

#8 User is offline   DreamsNJ 

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Posted 09 November 2005 - 10:48 AM

My grandmother has it and suffered with horrible pain in her shoulder for a very long time until they finally figured out the problem. I think the best things that have worked for her are water arobics on a regular basis and having her back massaged regularly.

Please take care of yourself and know you are in my thoughts and prayers!
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#9 User is offline   Crueltyfre/Lori 

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Posted 10 November 2005 - 07:20 AM

[/quote]
My mother-in-law had been after me to check into a spa also. She thinks health insurance should cover it. Any idea?
<{POST_SNAPBACK}>
[/quote]

My insurance didn't cover it but I did get to deduct it and the cost of repairs/upkeep from my taxes every year. Just make sure to have your doctor write out a "prescription" for it and save that...you have to be able to prove it was "prescribed."
Lori

#10 User is offline   Ro 

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Posted 12 November 2005 - 03:00 AM

Well, I'm up and down with it. My days when I'm not aching are GOOD days. I love that.

Today was a GOOD day.

So I think I'm going to start counting the good days instead of the bad ones. A shift of attitude it always a good thing. (Oooo... that sounded a little Martha Steward-ish... I have been watching her show this year. Can you tell?)

#11 User is offline   gdsjoy 

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Posted 12 November 2005 - 06:29 AM

A friend of mine recommends moving south where it is warmer.
The joy of the Lord is my strength.

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#12 User is offline   Marietjie 

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  Posted 13 November 2005 - 12:38 AM

I am also interested in the topic, because I also have Fibromyalgia.

In the Tabloid of the Gulf News (UAE) was an article about Fibromyalgia. It said: "Fibromyalgia, experts now believe, is a pain-processing disorder - arising in the brain and spinal cord - that disrupts the ways the body perceives and communicates pain."

And then Dr Robert Bennet, a fibromyalgia expert at Oregon Health & Science University in Portland said: "We now understand the pain in fibromyalgia is an abnormality in the central nervous system in which pain sensations are amplified."

"Fibromyalgia typically is defined as unremitting pain in multiple areas of the body - at least 11 of 18 specific tender points - accompanied by fatigue, difficulties with concentration and other vague physical discomforts. The illness is called a syndrome because the cluster of symptoms lacks the clear markers of disease, such as changes in the blood or organ function.

Because patients often look healthy, doctors have sometimes diagnosed fibromyalgia as a muscle problem or an autoimmune disorder. As a result, fibromyalgia patients feel intense pain when they should feel only mild fatigue or discomfort - such as after haulting bags of croceries. They sometimes feel pain even when there is no cause. The pain is not occuring because of some injury or inflammation of the muscles or joints. There is something wrong with the way the central nervous system is processing pain from the peripheral tissues. It's over-amplifying the pain."

"Fibromyalgia patients have, for instance, elevated levels of substance P, a neurotransmitter found in the spinal cord that is involved in communication pain signals. They also appear to have lower levels of substances that diminish the pain sensation, such as the brain chemicals serotonin, norepinephrine and dopamine. Growth hormone, which helps promote bone and muscle repair, is also found in lower levels in fibromyalgia patients.

"Yoga is part of 28-year old Lauren Armistead's treatment plan for fibromyalgia." She is a volleyball player.

The right cure? I don't know. Sometimes it is better to take day-by-day. Hope the above helps a little bit understanding the fibromyalgia pain.

Have a nice day!
Marietjie

#13 User is offline   Stasiu'sMom 

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Posted 15 November 2005 - 12:11 AM

I was diagnsed with CFIDS and FM 10 years ago. The first year was REALLY debilitating. The others were very up and down;and the past 2 years really saw some improvement. In the worst stages of my CFIDS, even 10 minutes on the treadmill could wipe me out for 2 days. It took 10 years to be able to be strong enough to maintain an excerise program without the workouts causing setbacks. Very frustrating. But this year I've finally been able to succeed in that department, taking up running and now running 3 - 4 days a week. I'm running my first ever 5K on Thanksgiving Day.

I also needed meds to regulate the sleep but I DO take them. I dont like meds either, but they WORKED and made a huge improvement for me.

Anyhow....no magical answers from me....I also LOVED Teitelbaums book. It was a godsend when I was trying to get a diagnosis 10 years ago and saw every specialist from immunologists to infectious disease experts... It really helped me.

#14 User is offline   gdsjoy 

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Posted 16 November 2005 - 07:39 AM

Wow, what wonderful information! Thanks Ro for posting this. Have just last week also got a diagnosis of CFS and possibly Lymes.

I would love to print off this stuff. My sister doesn't understand. Her mother-in-law has FMS and is a very active person. I think my sister thinks I am a wimp.

I agree with you Ro about looking at daily blessings and joys! Even though I can't play with my boys like I want to, I can still enjoy their smiles, laughs, discovers, achievements. What a wonderful blessing to be a parent.

I think that I decorated for Christma so early to be able to enjoy the lights. It helps create a soft romantic, enjoyable atmosphere.
The joy of the Lord is my strength.

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#15 User is offline   Ro 

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Posted 16 November 2005 - 04:14 PM

I have TWO appointments next month with Fibro specialists - within 2 days of each other.

The first one is with the doctor I have seen before.

The second one is with a new doctor that my husband heard about. He is in a clinic that has chiropractic, herbal, traditional, nutritional therapy - it is a holistic approach. I was just reading over the materials they sent to me and it is pretty interesting stuff. They even have email discussions with the doctors. They specialize in these weird-o conditions like FMS that take a lot of management.

I'm looking forward to what they say because I'm getting tired of this. This is the longest bad run I've had since I was diagnosed 17 years ago. I'm sure it is the stress and the very long work hours (6 days a week - average 10 hours a day) for more than a year now that has done me in.

My husband was telling me that he has heard that you get cycling with FMS and the trick is to break the cycle - and then you can get back on track. Sounds about right, based on past experiences. I've just never had a cycle that lasted this long and kept going down and down...

I'm SURE that the nightly panic attacks I experience (they started after I was in the hospital) are not helping. It is getting so that I dread night time because of them. That's when the worrying starts up. (I worry about my teenagers, my adult kids, the business, you name it... If there is potential to worry about it - I have been doing it. I worry about people in Iraq, people on the Gulf Coast, people in Central America - and even about you! So there is no need for you to worry - because I'm doing it for you. LOL)

I love Scrap Girls. Don't get me wrong - and I'm very happy that I started the company. It's just that starting up a small business is a TON of work. Running a website and business like this is not for whimps! LOL

I am very grateful that if I have to be going through something like this that I can work from home. If I had a "traditional" job, I would have had to give it up because there is no way that I could have got myself there - showered and dressed and acting happy every day when I've been struggling with my health.

But good or bad - sick or not - having Scrap Girls gets me out of bed - gets me going - gives me something to think about besides feeling sick and as Martha says, that is a GOOD THING!

#16 User is offline   Stasiu'sMom 

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Posted 16 November 2005 - 04:59 PM

Things should improve with these doctors, Ro. The thing about cycles is true, in my experience. Fainnly getting on some meds and breaking the cycle made improvements possible. I wish you all the best!

#17 User is offline   Keri S 

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  Posted 17 November 2005 - 01:48 PM

Ro,

I don't know if I have fibromayalgia but I definitely have wondered. I have anxiety disorder and
when I don't take zoloft, I worry just like you were describing to the point where I just don't sleep or anything. I used to have panic attacks too but I have worked through those to the point of being able to somewhat control them. When I don't sleep (like last night), my muscles hurt really bad
and it seems that nothing I do (take advil, etc...) will help until I get some sleep. It may not
be fibro, but I know something's not quite right and it seems like the kind of thing that doctor's have a tough time identifying too.

Anyway, I just wanted to tell you that I can completely relate to you regarding the worries. It seems like my life would be easier if I wouldn't put so much on my plate but on the flip side, if I don't, I just have too much time to worry. Kind of a catch 22 almost.

I hope that you can find some treatment that will help. It just can't be very easy.
That goes for everyone dealing with it, I hope somebody comes up with a cure or a really great treatment.

Keri

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Posted 30 December 2005 - 08:27 PM

Wow! I didn't know you had fibro, Ro! I was just diagnosed in November. It was somewhat of a relief after the neurologist was testing me for M.S. However, when M.S. was ruled out, I was sent to a rheumatologist who said, "You have Fibromyalgia but it's no big thing. I wouldn't think about it too much!" That's it! I don't suppose he would "think about it too much." HE doesn't have it! He did prescribe Flexaril for the muscle spasms. Now I'm on a quest for a different doctor but will have to go at least an hour away to find one. It just helps to "know" someone else who has it. As someone said, "We look fine. How can we possibly hurt?" Mine comes after many, many years of migraine headache - which I now find is one of the symptoms of Fibro. Don't have any words of wisdom. Just wanted to say to all the "Fibro Sisters" out there - hang in there!

#19 User is offline   Ro 

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Posted 30 December 2005 - 09:15 PM

NO big thing?

He ought to be whipped with a limp celery stick for that one.

Yes, Fibro can be a big thing. It can change your life. But it can be managed with help. My experience with it (I've had it for 17 years now) is that it is up and down. Physical trauma - such as my long year of illness capped off with a hospitalization for pancreatitis sent me into one of the worst bouts yet.

I, too, was nearly diagnosed with MS because I was having problems walking and falling at night.

Thank heavens it wasn't that!

Here's the scoop on the new med mix. I might add that I am being treated by a SPECIALIST IN FIBROMYALGIA. He actually works part time up at the University of Utah and lectures around on the topic. He's great. He keeps up on all of the new stuff that is happening in the field and, as you heard, approaches it as a life matter, which is very helpful.

Cathy is his nurse practictioner whiz bang person. You see her twice a month until you have settled her back down. She goes over your meds, helps you come up with life-style things that work for you, and has the most amazing calm way about her. (Compliments you on your strengths and how hard you are trying, which seriously helps me. I'm very self-critical.)

My new great medication is Lamictal. According to Dr. Smith, they have a theory (which makes sense) that Fibromyalgia is the brain mistaking everything as a pain signal. This is why usual pain meds like aspirin and tylenol are worthless to you. And this is why it hurts to be touched, or rubbed or sometimes, even a warm bath kills you off. Your brain thinks that all of these things are causing you pain.

They also think that the tendency to have it runs in families. It just manifests in different ways... things that affect the nervous system. Like alcoholism, depression, obsessive compulsive disorder, etc.

My family background on my dad's side is riddled with people like me that like working alone because we are easily overwhelmed by what is going on around us. My mom told me a few weeks ago (this is new information to me) that my grandma and all of her sisters were just like that. Of course, I already knew that about my dad.

When he would come home at night, he literally had to read the paper and watch some TV. He seemed so remote and checked out. Now, I realize that he was just trying to decompress - to cope with the stimulous that he had been under all day at the store. Dealing with all of those people was very hard on him. He told me once that if they had been there for five more years, it would have killed him.

It actually tickles my Dad now that we are so much alike. I'm grateful to know that I'm not a nut-job and that there is a reason I'm like I am.

And it is wonderful new to me that medications like Lamictal seem to help the brain correct itself. I have already noticed a change. I can stand to wear regular pants again. My legs don't ache constantly. My arms have stopped aching altogether.

And my mood has drastically improved. Seems, according to Dr. Smith, depression and Fibro are so closely linked because the brain again is misinterpreting what is being sent to it.

Interestingly enough, Lamictal is often used for Bipolar I (which I do not have) and is also used for brain seizures. The commonality there is that the brain is acting up.

(Side note: Why are we so sensitive on the subject of the brain? Nobody would think we were off our rockers if we were talking about our kidneys not working correctly. Nobody is crazy here. Our brains just thinks we are experiencing pain - physical and emotional pain - that we aren't experiencing at all. That's why my depression never made sense to me. I really knew that I didn't have a reason to feel depressed and that something was causing it that was beyond my ability to control completely. I am actually a pretty happy-go-lucky kind of gal!)


Along with my sleep meds (which I seriously have to take or I'm a mess - I have to have Ambien - regular old Ambien because Ambien CS doesn't work for me... I also take half a tablet of Trazedone, too. The Ambien gets me to sleep. The Trazedone keeps me asleep. I was having problems with early waking. I've had the whole sleep study thing and everything!), my hormone replacement because I am an "it" now (LOL), the vitamin b supplement and the fish oil that he is having me take twice a day now, I have snapped back out of it. Oh, I also take Zonegrann, too, but his goal is to take me off of it once the Lamictal is working completely. We are just making one switch at a time so that we are sure that we know what is actually working.

The Lamictal is working wonders - and is supposed to help me relax so that I can get over the over-working. I'm looking forward to that! LOL

I was on Flax Oil, too, but that started to cause problems with my stomach. I felt an almost instantaneous improvement in my depression once we doubled my Fish Oil to two of them, twice a day.

Did you know that Fish Oil can help depression guys? Yeppers.

#20 User is offline   suebee 

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  Posted 30 December 2005 - 10:39 PM

I have both MS and fibro, diagnosed 5 years ago, when my youngest son was two. The doctors are so focused on getting the MS under control that the only info that I have about fibro is what I find on my own. Because of Hurricane Katrina I lost my doctor and all my medical records (I consider myself lucky - considering what others have lost). Physical therapy seems to be helping me the most for both the MS and fibro. They are teaching me to learn my own limitations. When enough is enough. And to realize that I don't have to do everything myself. Sorry this is so long. My first posting.

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Posted 30 December 2005 - 11:32 PM

I also have Fibro. I was diagnosed a little over 2 years ago. Just before my oldests son's wedding. I take Ambien at night. I have to take it to sleep. I see a specialist who also has it. My reg gp doesn't understand it at all. I have good days and bad days. I try to stay off a lot of meds. I was on muscle relaxers and pain meds. When I was taking all that i couldn't hardly function. I do fairly well most days. After a day of Christmas shopping or a ladies day out i have to take a day to rest and d o nothing and i mean nothing. My husband is very understanding. My 20 year old son does not. He doesn't want to. My husband was with me at my initial diagnosis. I have 2 close friends with it. My sister had it. It was tragedy induced and she says she doesn't have it anymore and is non supportive. I have done physical thereapy. Therapy center would not follow drs orders and i found out that i was allergic to chemicals in the water for the pool work. I ended up in ER. The massage therapy really seemed to help. Winter is bad for me. I also get depressed. I surround myself with projects and keep busy. It seems to help. I also get out as much as possible. Any suggestions or tips would be welcome. I try to stay positive.

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Posted 31 December 2005 - 04:22 AM

Dearest Ro,
Your descriptions of yourself fit the stereotypical fibro patient - type A, perfectionist, driven, educated, wanting to do all you can for others... pushing, pushing when your body says SLOW DOWN!
Yep, I have fibro too, diagnosed 12 years ago. Accepted it about 5 years ago. Better and worse throughout the years. The absolute best medicine is education. The internet has been a godsend to me, I've spent many, many hours educating myself, and in the process also finding a bond with so many others - mostly women - who share the burden. It helps to know when your wierd symptoms or brain tweaks are shared by others with the disease. A bit of commiserating and a lot of support is out there. A lot of resources are available on the support group boards that you may not find when searching on your own. I've got a whole library too of excellent books to further my fibro education. No doubt you already know that no one else will make you better, it's really up to you. You need to gather the best information then pick and choose what will work best for you. Like exercise - yeah it will help, but it's just not me. I walk a couple miles at work and do some yoga in the shower but I won't step foot inside a gym - no way, no how.
Everyone is different and everyone responds to various therapies differently. I'm glad you are seeing a holistic group. The whole body/whole person approach will probably give you some relief - fibro effects your whole being. As to those who say "I won't take drugs/medications" - I wouldn't have a life at all without them. Fortunately I'm down from a dozen a day to a more simple 3 or 4. I take lots of supplements too (I can't be without my SAM-E). It's taken a lot of expensive trial and error for both Rx and supplements to find what's best for me. Then it goes and changes with time! Trial and error goes for bodywork too. Many fibromites can't tolerate physical therapy and can even be made worse by the wrong chiropractor, PT or massage therapist. Myofascial Therapy - a specialized form of physical therapy has been another godsend to me.
And then the hardest lesson for me to follow is to "live within my energy envelope". A concept of recognizing your limitations and living within them to avoid the crash and burn cycle. For a brief description see: http://www.immunesupport.com/library/showa...e/1/T/CFIDS_FM/ I'm the queen of crash and burn! I've been a single mother to two boys for the last 8 years. I HAVE to work, I need the income and the health insurance. I love my profession (Clinical Laboratory Scientist) - but it's a stressful one. I've been fortunate to have been able to stay employed with my many burn-outs (and surgeries - 11 in 20 years) and right now they're letting me work approximately every other day. Day of work, day of rest. Ro, I feel certain the way you've been pushing yourself the last year has contributed to the fibro flair you're going through now. Been there, done that. Please, please, listen to your body. It will keep up, louder and more obnoxious until you do!
Long winded, sorry. It amazes me how many of us struggle with invisible diseases or travails and wear our mask to prevent others from knowing. I appreciate that you can let your mask down and show your genuine soul. I am touched by your trust. I hope your path to better health is short and sweet. Listen to your body!!!!
Kind regards, Melissa

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#23 User is offline   raynedrop 

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  Posted 31 December 2005 - 05:05 AM

Well I have always just visited here but never really joined as a member but your recent newsletter made me do so Ro! I enjoy the newsletter and really did enjoy the Head story this evening lol but saw your mention of FM so nosey me came and decided to join so here I am. :2468who-do-we-appreciate:

I have FM, CFS, Lupus, RA, OA, RLS and a host of other lovely visitors in my bod that I cannot seem to kick out :dunno:
..they have been visiting way too long lol. Was finally DX'd back in 2002 and was lucky that I found a wonderful Rhumey doctor who is amazing and have several other specialists but it TOOK TIME to find ones who listened to me! I am so glad to read you are on an upswing! The bad days sure do wreck havoc with our lives don't they! Unfortunately I have more bad than good but they keep playing with meds and treatments when one doesn't work they don't just poo poo me at least! I got so sick of the first couple of dr's making me think I was nuts! I held a full time well paid job and traveled all over the country--working 14-18 hour days was normal for me! That was until a blasted virus literally knocked me on my butt back in Sept 2001! I am lucky I was able to get disability so now at least financially I am ok..it pays the rent lol. My digital scrapping is my ONE sanity that makes me feel like I can still do things. I have a poem around here someplace You may have seen but its good for FM patients to show their families as FM is not something they can see so they sometimes forget just how ill it can make you and just how debilitating it is. At any rate forgive the rambling ..I just wanted to say thanks for mentioning it in your letter and PLEASE let us know how you make out with your docs! If you want that poem please holler and will hunt it out for anyone that wishes it..Come to think of it I should probably scrap it lol.
Hugs and Blessings
Raynedrop

#24 User is offline   cowlady 

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Posted 03 January 2006 - 02:17 AM

I also have Fibro. Lost my job last Jan. am now trying to get disability. I have been having a lot of bad days. Would like any information that anyone has that might help. Doctors don't seem to have any answer's for me. I love scrapbooking and would like to start digital scraping. Hoping that will be easier for me. I picture my grand children to death. Good thing they are hams for the camera! I would also like to learn more about this message board and how to use it.

Cowlady :dancingcow:

#25 User is offline   rigdonia 

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Posted 29 January 2006 - 03:25 AM

Wow what a thread! I am on the one hand, sorry that we all have to "deal" with these things, but also so blessed to see everyone piping up, opening up, and holding each other up. I don't have fibro, but I have had a lupus-like ailment for over six years now. It thus far isn't full blown lupus - I am only affected with swelling, aches and pains, and fatigue, as opposed to multi-organ involvement etc, although I do have antibodies to my thyroid. I do have some of the markers for Lupus, but not all of them. I take plaquenil which seems to help but after six years on it, I think I am developing an allergy or aversion to it because I have been having bad reactions. My dose was reduced which helped the reactions, but made the original symptoms worse! Out of the frying pan, into the fire! On bad days I get in the hot tub too - really helps. On the very bad days I stay in bed sorta. With the kids, I can't actually stay in bed, but I turn my flylady mode off lol. Mostly I seem to have not so bad days....I have to plan my life differently than most people, and I hate it that some people think I am remote or selfish, but I gotta do what I gotta do. Nuff said. Anyway I just wanted to chime in here and say thank you for this thread.

Hmmmm for those of you who don't know me lol I am Dianne of shabby elements and I also have three kids 13 8 3 that I homeschool. I am a element designer, singer, and general craftaholic. ;-)
---> Dianne Rigdon ;)

#26 User is offline   Ro 

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Posted 30 January 2006 - 03:54 PM

Hey Dianne! Small world. You have some cute things over there. I've noticed your things before.

Sorry to hear that you're struggling with the Lupus problem. My sister-in-law has it and so I know personally what a mountain that can be. You're extremely brave to be homeschooling, too. (I did that for four years myself!)

I'm impressed.

#27 User is offline   alamodedesigns 

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Posted 30 January 2006 - 10:47 PM

Ro, on Jan 30 2006, 01:54 PM, said:

Hey Dianne! Small world. You have some cute things over there. I've noticed your things before.

Sorry to hear that you're struggling with the Lupus problem. My sister-in-law has it and so I know personally what a mountain that can be. You're extremely brave to be homeschooling, too. (I did that for four years myself!)

I'm impressed.
<{POST_SNAPBACK}>



Hi Ro,
I have very dear friend who is struggling with fibro and has been trying to find a doctor. We live in WY and have not been able to locate some specializing in Fibro. Would you share your Doctor's name as my friend's son lives in SLC. Thanks if you could do that. My dear friend has helped me through so many things, I would like to help her find a doctor he would be able to help her. Thanks.

Barb

#28 User is offline   Ro 

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Posted 31 January 2006 - 12:37 AM

Absolutely. His name is Dr. N. lee Smith. Phone number 801-565-6700. It does take months to get in, but once you are in they take incredible care of you.

#29 User is offline   debbie1700 

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Posted 03 February 2006 - 11:59 PM

Ro,
Hopefully you will read this before February 9, 2006. I have an appointment with my doctor. Both my old primary care & my new one have agreed that I have Fibromyalgia. In your newsletter that just came out you said that the doctor put you on a medication. May I ask what med? (dbarilleaux@gmail.com)

I read all the posts & I didn't realize that it can be contributed by Post Traumatic Stress Disorder. That be me definitely. But nothing happened until my life settled down & I "escaped" from the situation.

Thank you for any help you can give.

Hugs,
Debbie

#30 User is offline   Ro 

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Posted 04 February 2006 - 12:39 AM

Hi Debbie - just read above. I've given pretty complete details about what I'm taking up there. It is the December 30ths post.

Hope that helps!

Big HUG

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