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Old 11-17-2007, 10:05 AM   #1
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Question Something I still don't understand...

Hi all,
I'm getting confused about a lot of the information that I've been reading here. The powers that be (Doctors, etc...) say that FM is not progressive, yet many post about it progressing, and give explicit details about how much it has progressed for them. I myself know for a fact that my symptoms have increased in severity over the years... the number of my symptoms has compounded almost monthly over the last 5 years, how can you NOT call that a progressive situation? Lately the posts have had references to becoming bedridden as the syndrome "progresses" on you. Some talk of recovering from being bedridden and wheelchair bound. Others talk about being to that point on a now permanent basis, that because they pushed themselves too hard, they became virtually completely disabled, unable to get around at all any more. They talk about the fact that their current level of disability came about when their bodies could no longer recover and were irreversibly damaged. Eeeeeek!!
I have been very guilty of pushing myself and flaring and resting, and stubbornly doing it to myself over and over. But what choice do you have... life has to be lived, and you have to do things that need to be done, with or without help and support from family and friends. I do my very best to take it easy on myself, and to rely on others (excruciatingly hard to do), but I still end up at the end of the day in agony and exhaustion. Just going to visit the family for the holiday season is nearly impossible at times due to constantly having to sit, instead of getting up to help prepare the meal (I love to cook... so it's nearly impossible for me to sit when there is something to be creative with in the kitchen) There's also the unyielding guilt to deal with about "just sitting there" while everyone else is bustling around laughing, and joking, and having such a wonderful pain free time. Don't get me wrong, my family is very loving and supporting (thank God) of my inability to move about a lot, but I still just can't "sit there" like a stump. Before this nasty syndrome took over my life, I was extremely active, worked like a man outdoors (groundskeepers at a golf course for 5 years is one of many accomplishments for me), hiked for miles just to see if something new was over that next ridge, and could lift and carry easily 3/4 of my own weight without so much as a grunt. Now I have a really hard time just lifting a 20# sack of flour.
So anyway... long winded and all here.... what is the final story? Am I doomed to being restrained to bed by a condition I sure as heck didn't ask for, or am I just being silly. No matter how gently I treat my body, it's still getting worse and worse... .. ..
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Old 11-17-2007, 11:24 AM   #2
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Re: Something I still don't understand...

In my book, "Fibromyalgia and Chronic Myofascial Pain, A Survival Manual", by Devin Starlanyl she states that FMS is a central nervous system disorder, that it is not a musculoskeletal disorder, is not progressive, that it is not the same as CMP, and that it is not an autoimmune condition.

I think in my case, when my cmp is untreated or if I need myofascial release from over-doing it, and I don't get it taken care of, that triggers a flare or even if i just do too much, i will trigger a flare. And add on change in weather and the time change, not sleeping well, and the flare worsened. Now I am in a hypersensitive state where light and sound hurt. (the sound of my lap top is driving me crazy so i have to hurry and get off of here) I don't think i should keep throwing myself in and out of flares if at all possible. And for me to start painting a room is sheer insanity and i am paying for it now, and didn't paint hardly any of it. I have been living my life throwing my self into flares, recovering, and overdoing and flaring again. It is time to stop that and admit to myself that i just cannot do the things i used to and the things that need to be done or i want to do. I'm not that person anymore.

Since fms is a cns disorder and i keep slamming my body with stress, that spells injury and re-injury. and this can lead to a flare like i had at the beginning in which i was bedridden and had every kind of flare symptom imaginable. But no I don't believe that FMS is progressive. I just think my cns can only take so much. and i realize that it is definitely time for me to back off and kick back and when it's time to get moving again, to go slow.

Ofcourse, I am going by my own experience and what I have read about in this book. I am not an authority on fibromyalgia by any means.

 
Old 11-17-2007, 11:29 AM   #3
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Re: Something I still don't understand...

You have stumbled on a very complicated issue. There is not enough known about Fibro to know if it is progressive or just that flareups happen and never go away or is it just that you genetics are already programmed to have other issues that are being lumped into the Fibro diagnosis because all tests are negative. This is a fairly new diagnosis and the entire medical establishment are NOT behind it and probably half of all docs don't even believe there is such a thing yet even they are hard pressed to explain the pain when all blood work and other tests showed nothing....what do you call it and how do you prescribe pain medications without a diagnosis...so they say it is Fibro. Gosh who knows...have you seen the list of symptoms that 'could' be part of Fibro...hole cow it includes every symptom every known and the kitchen sink! I feel you must live your life to the fullest...not just sit and watch the world go by because the body is going to age no matter what you do and if you are meant to progress to a bed/w/c then that is what will happen ...it will happen regardless of what you do now so I myself would not just sit and not participate...only a few progress in that direction. I too am very physical... building and repairing and changing tires and whatever needs to be done...it hurts but it hurts anyway and now I have additional symptoms that come with aging so you treat the symptoms and get on with living. Glad you asked the difficult questions. Just live and enjoy.

 
Old 11-17-2007, 11:53 AM   #4
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Re: Something I still don't understand...

The bottom line is no one can honestly tell you what your final destination will be. Listen to YOUR body and follow your intuitive judgment on what YOUR body is telling you IT needs.

Each individual has only their own personal experience to go by, and can share only what they have experienced. That does not mean their experience is the final destination for everyone. For me I had several intermittent bedridden/wheelchair experiences that I recovered from before it became medically determined *fixed and permanent*, a condition I have had lasting for 2 years. Though doctors have determined it is fixed and permanent, I have still not accepted that, and I am fighting back against it with the Guaifenisin Protocol treatment.

As for doctors saying it is not progressive. They have said that for years, but they are now learning different. Yes, you will find it still written and stated in accordance with *old school* thought (Note the dates on the books and articles). Two of the Kevorkian cases were FM patients in their early 40s. I don't think people make decisions like that because they weren't experiencing progression. All they have to do is read these message boards and the actual experience of those of us who have had severe symptoms for 15-20 years or more.

Dr. St. Amand, as an Endocrinologist, states it IS progressive. And, he firmly believes that science will eventually prove that FM is in fact a precursor to many other diseases. The biology of it is complex and can't be explained in message board post, at least not with my FF.

FM is an energy (ATP) deficiency disorder. It causes dysfunction in other body functioning areas, like the Central Nervous System. It is the cause of all these strange symptoms we experience. Events and activities that deplete your body’s already limited ATP reserves causes and worsens your pain, flares and fibrofog.

Unquestionably there are many differing opinions and theories about the cause of FM; however, NO ONE disagrees that stress/trauma/injury makes it worse. That is written everywhere----think about that. It takes huge amounts of ATP to cope and recover from stress/trauma/injury. Therefore, it is really critical for us to not overextend and overexpend our limited ATP.

As to why there are differences among us? Part of it is that someone diagnosed only 5 years ago is going to respond differently than someone who was diagnosed 15+years ago. And, even among the same year range folks, bodies are different. Our bodies have differences in ATP levels, and ATP is what determines how we handle pain and recover from flare episodes. Secondly, differences are determined by how we respond AFTER the flare. Some, like Bluelake lady, were smart enough to learn early and she started managing her life different and now seems to live a full great life. Unlike me, the workaholic perfectionist who just kept stupidly pushing myself beyond my body's limits. THAT is a KEY difference. You can be like Blue or end up like me, but it means making different choices in how you manage your life.

The only way to manage your FM is get in touch with your own body's ATP recoverability and modulate your activities accordingly. I didn't do that. And, now I am *fixed and permanent* disabled.

If your activities are putting you into flare you are exceeding your ATP capacity and putting yourself at possible risk. If your bad days are now outnumbering your good days or you no longer have good days, listen up----you ARE headed for serious trouble and MUST make change NOW or risk the possibility ending up disabled like me.

Use and manage your ATP level like a bank account. Don't write checks that your body can't cash. A lot of people don't manage their cash very well, and it is quite likely they won't do any better with managing ATP levels. Its all free will and personal choice of responsibility. Dance today and don't worry about tomorrow. Sorry to seem so blunt, but everyone deserves a good full ride of quality of life so you can enjoy your life and your family.

All we can do is share our various stories and experiences. After that, each person has to make personal choices about how to use that information, if at all. Just know that not responsibly managing your risks now is like playing russian roulette with your future. I sure wish someone had told me all this years ago as I would like to think I would have made MUCH different choices along life's journey.

I am 57, and though I have had substantive symptoms since a child, I wasn't officially diagnosed until 15 years ago. By then I had already experienced temporary bedridden experiences lasting from a few days to a few weeks with each lasting a little longer than the last. Then it started happening more frequently and lasting longer periods of time. This last time it has lasted more than 2 years, making it determined to be *fixed and permanent*, but as I previously stated....I am not accepting that and I am fighting back. I am NOT letting this damned disease rob me of my life. Just because I stupidly did not protect myself from getting like this does not mean that I am not smart enough to figure out how to back myself out of it. Dr. St. Amand says it can be done, and I believe him. Unlike all other doctors I have seen, he rejects that I am *fixed and permanent*. I believe that with the Guaifensin I can get the excess calcium phophates out of my body. I already see it in my urine and already experience pain relief in certain areas, so something is very differently improving.

Apart from the above things, you can also do things that will help you build ATP. And, that will help you endure pain, flares, and reduce fibrofog. There are things that will increase your ATP; e.g., specific supplements, certain foods, all exercise, and deep breathing exercises. That is why Sam-E, Malic Acid, Magnesium, COQ10, all help. And, ole Popeye was right about spinach, lol, it increases ATP. Walking, Yoga, & Meditation....all will increase ATP.

Don't wait until you get like me to have to fight your way back. Develop your plan and do something now. Today truly is the 1st day of the rest of your life. Make better choices, starting today.

Ok, lol, stepping off my soap box now <wink>

Last edited by jam338; 11-17-2007 at 12:55 PM.

 
Old 11-17-2007, 12:49 PM   #5
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Re: Something I still don't understand...

Thanx Jam. This is what I didn't want to, but needed to hear. You have said exactly what I was looking for, and I thank you very much for that.

May I copy and e-mail your response to my friends and family? It would help me explain myself.
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Old 11-17-2007, 01:47 PM   #6
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Re: Something I still don't understand...

Wow, thank you jam for sharing your experience. Like ishla i needed to hear this also.

i have just been dx'd but i can see now where i have had symptoms over my lifetime. reading your post has made me realize how important it really is to get into the exercising and eating right. To seriously do all i can to help my body get better. This is something i will probably read over and over again.

thank you again, and i hope with all my heart that you win the battle by doing the Guaifenisin Protocol treatment. please keep us updated as i'm sure you have many, many cheerleaders on board.

stars

 
Old 11-17-2007, 08:43 PM   #7
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Re: Something I still don't understand...

Quote:
Originally Posted by Ishla View Post
May I copy and e-mail your response to my friends and family? It would help me explain myself.
Y'all are absolutely welcome, and I am so glad the information helps. And, you may copy and provide to whomever. Hopefully, it will make things easier for your family to understand so they can provide better support and understanding!

 
Old 11-19-2007, 11:44 AM   #8
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Re: Something I still don't understand...

I also second what Jam said. There's just not enough known yet about this disease to say whether it's progressive or not. And since no two people react to it the same way, you can't make a blanket judgment about it. Both my mom and I suffer from it. She went through a 7 year long stable period, but over this past summer she started getting worse. She's taking Lyrica now and it's helping quite a bit, but she'll never go back to where she was before the progression symptoms started. For many people it is progressive. For others it's not. FM is a very personal disease and will never present the same way twice. That's part of why it's so hard to get people to recognize that it's real.

I'm still young, but I know mine is slowly progressing and nobody can tell me otherwise. It's MY body and I know it better than anyone else. My anti-depressant doseage had to be bumped up back in June, and today I called in sick to work because of a flare. This is the only second time in all 6 years I've had it that I've called in sick, and both times have been within the last 6 months. Today, my entire left side is on fire, 2 of my left fingers are numb and I have no grip strength in my left hand. And I know it's because I had to do too much last week.

My cousin that has it is only 3 years older than me. But we have vastly different symptoms. She's able to work full time without serious adverse effects to her fibro and I'm not. I'm struggling financially right now because I'm not working full-time, but I'd rather deal with that than not be able to get out of bed- because that's where I was headed by staying in a full-time position.

Any doctor who tries to make a blanket statement about FM needs to get their head out of their *****. Ann is completely right in her statement that many doctors still don't believe it's real. There are two rheumatologists here in my town. One believes that it's real and the other thinks it's all in your head. I don't see either one of them because I'm lucky enough to have a doctor for a dad who is more experienced with FM treatment than the rheumie is. I know what works, I know what doesn't work, and no doctor is going to make me change my attack plan. Because I know my body better than they do.

 
Old 11-19-2007, 12:12 PM   #9
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Re: Something I still don't understand...

Grape, you wise to follow know YOUR body, follow it, and your common sense. Right now most doctors know enough to just be dangerous. The reason why our symptoms differ is that we have muscle knots/lesions that far exceed the 18 points. The 18 points are ONLY the common patterned areas---there are others. We all have them, and depending on where they are determines which nerves are getting pinched and creating our various strange symptoms. Unfortunately, those differences is what causes the confusion among us and for the medical community. Most have not yet figured that part of it out. That I know only one doctor has, Dr. St. Amand. Though I think that Dr. Starlanyl may have talked about some of this in her book as well. For those who have not read the books of these 2 doctors, you need to in order to develop better understanding about what you have and how to help yourself.

 
Old 01-15-2008, 10:34 AM   #10
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Re: Something I still don't understand...

I agree with the previous posters.....don't write a check your body can't cash! I was diagnosed with fibro in 1994 & was in denial for several reasons. But one reason was that I was having few symptoms & few flares. I continued to push myself in my work & personal life....both of which were very stressful.
I was working in the mortgage industry which is very demanding. Ultimately something had to give. This last february after being flared up for almost 3 months, my doctor put me on a leave of abscence after my workplace was demanding that I either keep up with the production or go on medical leave. Since I hadn't been able to keep up with the production for the last few months, I first asked them for reassignment to a job that wasn't so physically demanding. I explained to them that I had fibro & even provided the branch manager & my supervisor with a printout of Fibromyalgia in the Workplace. I was refused reassignment & put on medical leave. Eventually, I lost my job due to my illness. It wasn't what I wanted to happen but I didn't have much choice. I found out the hard way that there is little protection anymore for people with disabilities....at least in my state. My workplace would not let me come back to work in any other position except for the one I had been working. Which since we all knew I wasn't capable of doing anymore was setting me up for failure. It was heartbreaking for me to be turned on like that by a company that I had been a loyal & hardworking employee for. The reason my doctor ended up putting me on leave was because I had initially gone to him to ask for an increase in my pain meds so I could continue to keep up with my work demands!!! I was running myself into the ground!!

Today, I am working part time at a convenience store for $7.50 an hour. Last year at this time I was making almost $17.00 an hour. This has been a hard pill for me to swallow but as you can see, I had no choice in the matter. I hit a wall! I pushed & pushed myself until I was no longer useful to my employers. So they cashed my check for me so to speak. I have no idea what my future holds for me now but I really don't wish whats happening to me on anyone. Looking back on it, I wish that i'd taken better care of myself sooner. Now I feel i'm at an all time low that has lasted a year & with no insurance & no money i'm lucky to be able to afford my least expensive meds.

I guess what i'm saying is be careful how hard you "push yourself" and for whom. My priorities are different now. I will push myself when it comes to family or friends but never again will I give up my health for an employer. Its just not worth it! In the end, they don't give a rats *** about you will be the only one suffering the long term effects from it.
Wish you the best
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