SnowBunny89
02-14-2009, 09:54 AM
I'm so mad I could spit. Has everyone seen thE article from saying Fibro is not real but it's all in our heads? Mental disorder?:dizzy::dizzy::dizzy::dizzy::di zzy::dizzy::dizzy::dizzy::dizzy:
It also says that Doctors don't like to diagnose people because they will just worry about it. I Have severe panic attacks I worry ALOT about everything diseases etc. So when I went and mentioned Fibro she blamed it on my weight when I went back this year I saw it was in the computer I'm saying why did she put Fibro in the computer? When I Went back I showed her a website with all the symptoms and told her I really think I have this she did a tender point test and I was diagnosed. So it was like She couldn't hide it from me. She knew I was reading sites anyways.
I totally disagree with this article FIBRO IS REAL IT'S NOT IN MY HEAD OR A MENTAL DISORDER. I have pain everyday in the pain is real.
Fibro fog this morning I wake up and Can't even remember going to sleep last night or if It was afternoon and took a nap. It took me a while to realize it was morning. I feel like I have alzheimer's. 16 thousand people voted that it's real.
It also says that Doctors don't like to diagnose people because they will just worry about it. I Have severe panic attacks I worry ALOT about everything diseases etc. So when I went and mentioned Fibro she blamed it on my weight when I went back this year I saw it was in the computer I'm saying why did she put Fibro in the computer? When I Went back I showed her a website with all the symptoms and told her I really think I have this she did a tender point test and I was diagnosed. So it was like She couldn't hide it from me. She knew I was reading sites anyways.
I totally disagree with this article FIBRO IS REAL IT'S NOT IN MY HEAD OR A MENTAL DISORDER. I have pain everyday in the pain is real.
Fibro fog this morning I wake up and Can't even remember going to sleep last night or if It was afternoon and took a nap. It took me a while to realize it was morning. I feel like I have alzheimer's. 16 thousand people voted that it's real.
Sponsor
bluelakelady
02-14-2009, 02:26 PM
hi bunny,
haven't seen it and am not the least bit surprised. take a chill pill girlfriend and perhaps fire your doctor and find another. back when i was diagnosed mental therapy was suggested. i knew it was a help aid to adapting not a cure. each to their own opinion, i say. i just fire the ones who don't have open minds.
we know it is real. we live it. science only thinks about it. they don't live it. science changes its mind like i change panties.
i refuse to let them anger me. lest we forget fibro loves to eat anger and what does it spit out? yea, pain. big pain. no ones opinion is worth that to me. i have a good team of doctors and their support staff. i hand picked them. well worth the initial stress of finding them.
so, to the writer i would say, you are entitled to your opinion so long as you and i realize it is only that, an opinion. and i am entitled to mine.
peace my friend,
peace,
blue
haven't seen it and am not the least bit surprised. take a chill pill girlfriend and perhaps fire your doctor and find another. back when i was diagnosed mental therapy was suggested. i knew it was a help aid to adapting not a cure. each to their own opinion, i say. i just fire the ones who don't have open minds.
we know it is real. we live it. science only thinks about it. they don't live it. science changes its mind like i change panties.
i refuse to let them anger me. lest we forget fibro loves to eat anger and what does it spit out? yea, pain. big pain. no ones opinion is worth that to me. i have a good team of doctors and their support staff. i hand picked them. well worth the initial stress of finding them.
so, to the writer i would say, you are entitled to your opinion so long as you and i realize it is only that, an opinion. and i am entitled to mine.
peace my friend,
peace,
blue
djl
02-14-2009, 05:20 PM
Yep...I saw it on line......and NO IT IS NOT IN OUR HEAD !! I hurt, my body hurts. My muscles twitch, sometimes its hard just to get up the stairs, IM TIRED !!
I am sure who ever had anything to do with this article obviously does not have Fibro, and if they dsid have Fibro there views would be MUCH DIFFERENT.
I am sure who ever had anything to do with this article obviously does not have Fibro, and if they dsid have Fibro there views would be MUCH DIFFERENT.
kirstee
02-14-2009, 06:55 PM
What a laughable article that was. People who write articles like that do no good to what is already a very difficult syndrome to live with.
Kirstee
Kirstee
SnowBunny89
02-14-2009, 07:44 PM
That was a little harsh bluelakelady! I'm a bit new to this entire Fibro thing and I'm in pain EVERYDAY and when I read something like that. i got a little upset. And my doctor dismissed it the first time I had mentioned it. But when i went back to see her Fibro was in the computer so IMO she learned something since the time I last saw her. She already diagnosed me.
SnowBunny89
02-14-2009, 07:49 PM
Yep...I saw it on line......and NO IT IS NOT IN OUR HEAD !! I hurt, my body hurts. My muscles twitch, sometimes its hard just to get up the stairs, IM TIRED !!
I am sure who ever had anything to do with this article obviously does not have Fibro, and if they dsid have Fibro there views would be MUCH DIFFERENT.
It's so frustrating to read an article like that. When you have chronic pain everyday. I was so sore today there was nothing else I could but go to bed. A mental condition? I think not. Whoever wrote that article I don't think knows anything about Fibro. I don't know why so many people don't believe or think it's all in our heads. Over 16 thousand people voted it was a real illness so that's a good thing.
I am sure who ever had anything to do with this article obviously does not have Fibro, and if they dsid have Fibro there views would be MUCH DIFFERENT.
It's so frustrating to read an article like that. When you have chronic pain everyday. I was so sore today there was nothing else I could but go to bed. A mental condition? I think not. Whoever wrote that article I don't think knows anything about Fibro. I don't know why so many people don't believe or think it's all in our heads. Over 16 thousand people voted it was a real illness so that's a good thing.
jann71
02-14-2009, 08:08 PM
They wouldn't be so quick to say it wasn't real if they were suffering from it.
Glojer
02-14-2009, 11:42 PM
I didn't see the article, but sounds like I didn't miss much. People who don't believe in fibro and try to say it is mental are so far behind the times, they aren't worth considering. When they get their head out of the sand and start some 21st century thinking then I will take them serious. There are many diseases that were once thought to be mental problems. No I can't waste my time on the narrow minded, don't let them upset you it will only make your very real fibro pain worse.
Glojer
Glojer
bluelakelady
02-15-2009, 12:17 PM
hi bunny,
i am glad for you that your doctor did some reading and is now helping you.
i have been at this for years. diagnosed back when no one thought it was a real physical problem and was all mental, must be depressed, etc. perhaps this is why i give no energy to anything that could upset my precious health, especially the opinions of others. keeping the balance so there is the least pain possible is my total focus. to protect me i cannot allow outside stuff to enter me in any way. when it tries i do deep breathing and remind myself that if i can do fibro i can do anything.
i am sorry if i upset you. that was not my intention.
peace,
blue
i am glad for you that your doctor did some reading and is now helping you.
i have been at this for years. diagnosed back when no one thought it was a real physical problem and was all mental, must be depressed, etc. perhaps this is why i give no energy to anything that could upset my precious health, especially the opinions of others. keeping the balance so there is the least pain possible is my total focus. to protect me i cannot allow outside stuff to enter me in any way. when it tries i do deep breathing and remind myself that if i can do fibro i can do anything.
i am sorry if i upset you. that was not my intention.
peace,
blue
SnowBunny89
02-15-2009, 02:52 PM
hi bunny,
i am glad for you that your doctor did some reading and is now helping you.
i have been at this for years. diagnosed back when no one thought it was a real physical problem and was all mental, must be depressed, etc. perhaps this is why i give no energy to anything that could upset my precious health, especially the opinions of others. keeping the balance so there is the least pain possible is my total focus. to protect me i cannot allow outside stuff to enter me in any way. when it tries i do deep breathing and remind myself that if i can do fibro i can do anything.
i am sorry if i upset you. that was not my intention.
peace,
blue
It's ok it just bothered me a bit when you told me to take a chill pill. I understand you have been at this for years I have only recently been diagnosed but I sorta had a good idea I had this for a few years. I knew people didn't not believe in Fibro but I have never read an article like that. it was so upsetting that they blame it on a mental disorder just because there is no real test for Fibro. We all know that we have Fibro we know the pain is real and that's all that should matter and ignore what people say. It's just upsetting.
It's OK I know you didn't mean to upset me on purpose!
i am glad for you that your doctor did some reading and is now helping you.
i have been at this for years. diagnosed back when no one thought it was a real physical problem and was all mental, must be depressed, etc. perhaps this is why i give no energy to anything that could upset my precious health, especially the opinions of others. keeping the balance so there is the least pain possible is my total focus. to protect me i cannot allow outside stuff to enter me in any way. when it tries i do deep breathing and remind myself that if i can do fibro i can do anything.
i am sorry if i upset you. that was not my intention.
peace,
blue
It's ok it just bothered me a bit when you told me to take a chill pill. I understand you have been at this for years I have only recently been diagnosed but I sorta had a good idea I had this for a few years. I knew people didn't not believe in Fibro but I have never read an article like that. it was so upsetting that they blame it on a mental disorder just because there is no real test for Fibro. We all know that we have Fibro we know the pain is real and that's all that should matter and ignore what people say. It's just upsetting.
It's OK I know you didn't mean to upset me on purpose!
DeBeachSiren
02-16-2009, 05:59 AM
I haven't seen an article and obviously I won't now. It is a disease according to the government both federal and state. These kinds of things are mean, but then there are a lot of people that are mean. Think about all of the wonder cures that are on TV and in magazines. The commercials make me really mad.......they need to find someone that actually has it instead of them looking all rosey and perky. Look at those infomercials (which is another thing that ticks me off in general) the body cleanse, ointments, skin zappers (remember that one?), that blue stuff (which I paid for like an idiot cause I hurt so bad, glad they had to take it off the air and got sued). There was an article in our newspaper about a lady from around here that was cured of fibro a few years back. #1, if there was a cure we'd all feel better by now. A little fibro group I'm in read that and we fired off letters to the editor and called the guy that wrote the article. We were on that guy like ugly on an ape. Nicole Kidman's mother was cured of it a few years ago after joining that church Tom Cruise goes to. If I upset someone, sorry. If there were all these things there would be no more fibro or any other related disease. We do get preyed upon. Like I've said in older posts, if we feel bad enough we'd put a chicken around our necks and do whatever if we thought we'd get some relief. Don't take all these things to heart that you see or you'll be upset all of the time. You know what is the truth. Just remember that you're above all of that. Don't stoop to their level okay. Fire off letters to places if they make you angry. Make it public. Embarrass them...........it feels good to do that. I loved that newspaper guy going abeda, abeda, he didn't quite no what to do. Okay, I've done my ranting. Have a Lovely Day,
DeBeachSiren
DeBeachSiren
SnowBunny89
02-16-2009, 09:41 AM
I haven't seen an article and obviously I won't now. It is a disease according to the government both federal and state. These kinds of things are mean, but then there are a lot of people that are mean. Think about all of the wonder cures that are on TV and in magazines. The commercials make me really mad.......they need to find someone that actually has it instead of them looking all rosey and perky. Look at those infomercials (which is another thing that ticks me off in general) the body cleanse, ointments, skin zappers (remember that one?), that blue stuff (which I paid for like an idiot cause I hurt so bad, glad they had to take it off the air and got sued). There was an article in our newspaper about a lady from around here that was cured of fibro a few years back. #1, if there was a cure we'd all feel better by now. A little fibro group I'm in read that and we fired off letters to the editor and called the guy that wrote the article. We were on that guy like ugly on an ape. Nicole Kidman's mother was cured of it a few years ago after joining that church Tom Cruise goes to. If I upset someone, sorry. If there were all these things there would be no more fibro or any other related disease. We do get preyed upon. Like I've said in older posts, if we feel bad enough we'd put a chicken around our necks and do whatever if we thought we'd get some relief. Don't take all these things to heart that you see or you'll be upset all of the time. You know what is the truth. Just remember that you're above all of that. Don't stoop to their level okay. Fire off letters to places if they make you angry. Make it public. Embarrass them...........it feels good to do that. I loved that newspaper guy going abeda, abeda, he didn't quite no what to do. Okay, I've done my ranting. Have a Lovely Day,
DeBeachSiren
Nicole Kidman's mom had Fibro and was really cured? I don't know that I beleieve that. they said there is no cure for Fibro.
DeBeachSiren
Nicole Kidman's mom had Fibro and was really cured? I don't know that I beleieve that. they said there is no cure for Fibro.
bluelakelady
02-16-2009, 10:29 AM
hi bunny,
thanks girlfriend.
peace,
blue
thanks girlfriend.
peace,
blue
martinka
02-16-2009, 03:59 PM
I read the AP article this morning and it made me angry for a second, then I thought, what does he know?! If he or a friend/family member had fibro he wouldn't have been so quick to report that it is a "murky illness," or questioned that it is a real disease at all.
I was first diagnosed when I was 28 and here I am turning 49 this week and have seen vast improvement in how we are treated (for the most part) by the medical community and the general population as well. So many more people are aware of fibro now, understand it better, and we can't let poops (:D) like that reporter make us question what is an all too real illness. I'm sure he is getting an earful from fellow suffers and maybe it will cause him to pause and think and possibly educate himself a little more. Who knows?
We just need to take the best care of ourselves that we possibly can and not pay attention to the uneducated out there. I hope everyone has a good day!
Kelly
I was first diagnosed when I was 28 and here I am turning 49 this week and have seen vast improvement in how we are treated (for the most part) by the medical community and the general population as well. So many more people are aware of fibro now, understand it better, and we can't let poops (:D) like that reporter make us question what is an all too real illness. I'm sure he is getting an earful from fellow suffers and maybe it will cause him to pause and think and possibly educate himself a little more. Who knows?
We just need to take the best care of ourselves that we possibly can and not pay attention to the uneducated out there. I hope everyone has a good day!
Kelly
Glojer
02-16-2009, 04:25 PM
Well said DeBeach, you can write my rants anytime.....giggle!
DeBeachSiren
02-17-2009, 06:33 AM
Hi,
Nicole Kidmans' mother was cured by the teaching of Tom Cruise's church. Just another thing I wrote with all of the other supposed basket-fulls of cures that really aren't there. NO there is NO cure for fibro.
DeBeachSiren
Nicole Kidmans' mother was cured by the teaching of Tom Cruise's church. Just another thing I wrote with all of the other supposed basket-fulls of cures that really aren't there. NO there is NO cure for fibro.
DeBeachSiren
Glojer
02-17-2009, 02:07 PM
Ok so I had a few minutes last night and I looked up the article. What a total waste of my time. What a bunch of bull, to me it really didn't say much of anything. Just a lot of 'could be' and 'don't know' and 'possible'.
Did anyone read the NFA reply or any of the other blogs that had responses from other groups. I checked out a few and they really told it like it is. I can't waste my time with the naysayers, I have a life even with fibro. I won't let them take that much of my precious energy.
Everyone have a great day.
Glojer
Did anyone read the NFA reply or any of the other blogs that had responses from other groups. I checked out a few and they really told it like it is. I can't waste my time with the naysayers, I have a life even with fibro. I won't let them take that much of my precious energy.
Everyone have a great day.
Glojer
chilyrabit
02-17-2009, 05:25 PM
I haven't read the article yet but I will. I would like to stay informed all the way around. It will not upset me; I've never really let things like that or others personal opinions get to me.
I am interested though DeBeachSiren; would you point me in the direction of where you got the information about the government saying FM is a disease.
I'm new to this site and if you all already discussed it, I missed it. :mad: to pain.
thanks to all that contribute; it is very helpful
I am interested though DeBeachSiren; would you point me in the direction of where you got the information about the government saying FM is a disease.
I'm new to this site and if you all already discussed it, I missed it. :mad: to pain.
thanks to all that contribute; it is very helpful
DeBeachSiren
02-18-2009, 05:15 AM
I haven't read the article yet but I will. I would like to stay informed all the way around. It will not upset me; I've never really let things like that or others personal opinions get to me.
I am interested though DeBeachSiren; would you point me in the direction of where you got the information about the government saying FM is a disease.
I'm new to this site and if you all already discussed it, I missed it. :mad: to pain.
thanks to all that contribute; it is very helpful
Fibromyalgia became a disease (technically) the day the FDA approved and backed Pfizer's drug Lyrica as a specific treatment of fibromyalgia. It went from it's all in our heads to it's now a disease. Remember Cymbalta is backed by the FDA for fibromyalgia too.
Actually in 1/2005 Lyrica was approved by the FDA to use as treatment of neuropathic pain, specifically postherpetic neuralgia. This article stated that it would be at least 2 years before the FDA would approve it for the treatment of fibromyalgia.
This was used in my disability hearing by my legal advocate over 2 years ago that was present at my hearing, which would make this article right.
An article published by a 20 year fibro researcher (see, it's not new) in 2003 states why the factors below should be used to view fibro as a disease instead of a collection of things that make up a syndrome. These were group studies. After the acute pain from an injury or illness has outlived it's usefulness, the entire nervous system undergoes and evolving process called neuroplasticity. After a while, nerve fibers that transmit tactile sensations from the skin to the spinal cord turn into pain sensors. Some neurons don't even require a stimulous to tell the higher centers in the nervous system that there is pain everywhere anymore. Clear back this far it was indicated that people with this ended up with a loss of gray matter and the degree depends upon how long areas of the body have been hit with a barrage of pain, pain, pain. Tah-dah, what have we seen in articles in the past year or so? Loss of gray matter!!!!
Evidence that Fibromyalgia is a disease are:
Elavated spinal fluid levels of NGF (nerve growth factor) and substance P.
Several brain imaging studies confirm reduced blood flow.
Elevated pro-inflamatory cytokines in blood and skin.
Trauma and infections often initiate symptoms.
Autonomic nervous system is dysfunctional.
Involves both central and peripheral nervous systems.
The hypothalamus (under control of the thalamus) is dysfunctional
I could explain these things but it would take too long to write it all out. I had to look through all sorts of stuff digging around to find all of these things. I know there are a few more things, but I can't find them right now and don't even know where to look. I do not just put things on this website for poops and giggles. I am trying to help people on here by sharing research, studies, etc. that I read from a quarterly I have recieved for quite a number of years and other places.
DeBeachSiren
I am interested though DeBeachSiren; would you point me in the direction of where you got the information about the government saying FM is a disease.
I'm new to this site and if you all already discussed it, I missed it. :mad: to pain.
thanks to all that contribute; it is very helpful
Fibromyalgia became a disease (technically) the day the FDA approved and backed Pfizer's drug Lyrica as a specific treatment of fibromyalgia. It went from it's all in our heads to it's now a disease. Remember Cymbalta is backed by the FDA for fibromyalgia too.
Actually in 1/2005 Lyrica was approved by the FDA to use as treatment of neuropathic pain, specifically postherpetic neuralgia. This article stated that it would be at least 2 years before the FDA would approve it for the treatment of fibromyalgia.
This was used in my disability hearing by my legal advocate over 2 years ago that was present at my hearing, which would make this article right.
An article published by a 20 year fibro researcher (see, it's not new) in 2003 states why the factors below should be used to view fibro as a disease instead of a collection of things that make up a syndrome. These were group studies. After the acute pain from an injury or illness has outlived it's usefulness, the entire nervous system undergoes and evolving process called neuroplasticity. After a while, nerve fibers that transmit tactile sensations from the skin to the spinal cord turn into pain sensors. Some neurons don't even require a stimulous to tell the higher centers in the nervous system that there is pain everywhere anymore. Clear back this far it was indicated that people with this ended up with a loss of gray matter and the degree depends upon how long areas of the body have been hit with a barrage of pain, pain, pain. Tah-dah, what have we seen in articles in the past year or so? Loss of gray matter!!!!
Evidence that Fibromyalgia is a disease are:
Elavated spinal fluid levels of NGF (nerve growth factor) and substance P.
Several brain imaging studies confirm reduced blood flow.
Elevated pro-inflamatory cytokines in blood and skin.
Trauma and infections often initiate symptoms.
Autonomic nervous system is dysfunctional.
Involves both central and peripheral nervous systems.
The hypothalamus (under control of the thalamus) is dysfunctional
I could explain these things but it would take too long to write it all out. I had to look through all sorts of stuff digging around to find all of these things. I know there are a few more things, but I can't find them right now and don't even know where to look. I do not just put things on this website for poops and giggles. I am trying to help people on here by sharing research, studies, etc. that I read from a quarterly I have recieved for quite a number of years and other places.
DeBeachSiren
Ace88
03-01-2009, 01:21 AM
I had one guy question me about how some doctors think it isn't a real disease. During the course of 10 years of appointments, I had one psychologist meet with me and another female doctor who thought I should see a counselor, but I guess that is par for the course...I also had a male doctor tell me my stomach noises and digestive problems, which were called functional dyspepsia, by a gastrologist, was all in my head.
Smashing
03-01-2009, 09:42 AM
After 3 years of searching for help, and being so unbearably sick, I had a doctor tell me quote
"You should go home and think long and hard about whats going wrong in your life to cause so many depression symptoms" then he got up and told me to go back to my last doctor!
I will never forget that as long as I live
"You should go home and think long and hard about whats going wrong in your life to cause so many depression symptoms" then he got up and told me to go back to my last doctor!
I will never forget that as long as I live
Jenn4508
03-01-2009, 11:30 AM
SnowBunny89 - I am not looking for a pity party but want to let you know a couple of things that may help you understand that not all people/doctors/everyone judge us for fibro. My first GP said I needed to lose weight, fired him found a new one and he knew I had fibro and found me a pain doc who treated fibro. I was first sent to a rheumy who diagnosed it again for my GP along with hypermobility. Now, let me tell you up front for over 25 years, I was diagnosed with severe depression and generalized anxiety disorder. In 2006 had a mental breakdown and found out I had been misdiagnosed all those years, I really had BiPolar 1 along with anxiety disorder. So, now they can't get my BP 1 under control because I was on antidepressants and that is not good for BP 1 you will understand shortly while I am even telling you this. I was assigned to a shrink in the hospital then and a therapist that I have been seeing ever since. Me and the shrink haven't seen eye to eye but I love my therapist.
About a year ago, I was having a lot of issues with my shoulder and went to my GP and he thought I was having bone lock and sent me to an Orthopedic doc that takes care of a major college basketball team here in town. Once he saw the x-rays and did an exam, he advised that my shoulder was in a major FIBRO flare-up. It was pain I had never had like that and it kept popping and sometimes I couldn't do anything with it once I raised it for several minutes. This had been going on for 4-5 months, that is why I finally went to my GP. I told the Orthopedic doc that I had never had anything like this with my Fibro and did he have any idea how much longer this would last? He said, I have no idea, it could go away tomorrow, or last another 5-6 months, that's just the way fibro is. He looked at the care I was getting from my pain doc and said he was doing a good job with my care and meds and turned around and said to me, Do you really expect your pain doc to "cure" your Fibro? I said no, I know there isn't a cure for it. He said, I am glad you have accepted that, many fibro patients don't because there is no cure for that. I told him I haven't accepted it and I don't think most patients do, but they learn to deal with it.
Then I started losing weight alot, I really don't eat alot, I know people say that but everyone gets on me because I really don't eat. In 2 1/2 years, I have lost 78 lbs. About a year ago, I was sent to a Gastro doc which diagnosed gastritis, IBS, divurticulosis and something else.
Then the skin problems started so the Dermatologist was added to the resume of docs.. More issues. More names of diseases.
Now the shrink, I finally had enough so I changed about 5 weeks ago and had my first meeting... After listening to Blue (Thanks Blue), I fired the first one and after my meeting with the new one, he asked about other health issues. I brought up the fibro waiting for the shoe to drop... His main concern in treating my BP 1, was getting in under control but also, he asked how was my pain level with fibro. I knew he couldn't blame BP 1 on fibro and vice versa. He asked how well my pain was controlled concerning my fibro, I told him it doesn't go below a 5 but goes up to a 10 alot.
He advised me that because my BP was not under control it does cause pain which was not allowing my fibro pain to get under control. His concern is though, he doesn't want to get my BP under control but screw up my fibro or vice versa. He told me he was not happy about the medical community telling patients that fibro was a mental disorder. He advised that patients were referred to him or therapist in his office because "fibro was a mental disorder". He said that there may be some patients that were depressed due to the fibro, but that he also referred them back to the doctor advising that fibro was a "real disease" and that until the disease was treated, there wasn't much his therapist could do because their job was more to help them understand how to deal with this disease.
He also advised me that I have TWO major diseases that I am fighting to deal with and one doesn't have anything to do with the other. I started crying because I finally found a psychiatrist who understands that my last one was doing nothing to help me. He upped one med but didn't want to make any changes until he talked to a Pharm/Psy doc so that he doesn't mess with my fibro/migraine/gastro meds.
The one thing I did bring up to him was the tv ads about how they show commercials about fibro and these people look wonderful, take a pill and they look like they are getting ready to run a marathon. He agreed that those do not show a true picture of fibro. So you see, there are docs out there that understand what we do go through.
You have to understand that you are new to this and even though you do get upset over some things you read and see, this stresses you out, fibro feeds on stress. That was the reason for Blue to say take a chill pill. Please go back and read some of the old post... Blue use to be to happy/laid back for me when I was down/upset but there is a lot to learn from her.
Remember, we all are here for you no matter what.. Whether you are upset, need to vent, cry a shoulder to lean on...
We have all been where you are so come back often and if you have questions, please ask we will do the best we can. We will offer you support at any time you need it.
I usually don't give out this much info about myself, but I wanted you to understant about how some docs in different fields do believe. Jenn
About a year ago, I was having a lot of issues with my shoulder and went to my GP and he thought I was having bone lock and sent me to an Orthopedic doc that takes care of a major college basketball team here in town. Once he saw the x-rays and did an exam, he advised that my shoulder was in a major FIBRO flare-up. It was pain I had never had like that and it kept popping and sometimes I couldn't do anything with it once I raised it for several minutes. This had been going on for 4-5 months, that is why I finally went to my GP. I told the Orthopedic doc that I had never had anything like this with my Fibro and did he have any idea how much longer this would last? He said, I have no idea, it could go away tomorrow, or last another 5-6 months, that's just the way fibro is. He looked at the care I was getting from my pain doc and said he was doing a good job with my care and meds and turned around and said to me, Do you really expect your pain doc to "cure" your Fibro? I said no, I know there isn't a cure for it. He said, I am glad you have accepted that, many fibro patients don't because there is no cure for that. I told him I haven't accepted it and I don't think most patients do, but they learn to deal with it.
Then I started losing weight alot, I really don't eat alot, I know people say that but everyone gets on me because I really don't eat. In 2 1/2 years, I have lost 78 lbs. About a year ago, I was sent to a Gastro doc which diagnosed gastritis, IBS, divurticulosis and something else.
Then the skin problems started so the Dermatologist was added to the resume of docs.. More issues. More names of diseases.
Now the shrink, I finally had enough so I changed about 5 weeks ago and had my first meeting... After listening to Blue (Thanks Blue), I fired the first one and after my meeting with the new one, he asked about other health issues. I brought up the fibro waiting for the shoe to drop... His main concern in treating my BP 1, was getting in under control but also, he asked how was my pain level with fibro. I knew he couldn't blame BP 1 on fibro and vice versa. He asked how well my pain was controlled concerning my fibro, I told him it doesn't go below a 5 but goes up to a 10 alot.
He advised me that because my BP was not under control it does cause pain which was not allowing my fibro pain to get under control. His concern is though, he doesn't want to get my BP under control but screw up my fibro or vice versa. He told me he was not happy about the medical community telling patients that fibro was a mental disorder. He advised that patients were referred to him or therapist in his office because "fibro was a mental disorder". He said that there may be some patients that were depressed due to the fibro, but that he also referred them back to the doctor advising that fibro was a "real disease" and that until the disease was treated, there wasn't much his therapist could do because their job was more to help them understand how to deal with this disease.
He also advised me that I have TWO major diseases that I am fighting to deal with and one doesn't have anything to do with the other. I started crying because I finally found a psychiatrist who understands that my last one was doing nothing to help me. He upped one med but didn't want to make any changes until he talked to a Pharm/Psy doc so that he doesn't mess with my fibro/migraine/gastro meds.
The one thing I did bring up to him was the tv ads about how they show commercials about fibro and these people look wonderful, take a pill and they look like they are getting ready to run a marathon. He agreed that those do not show a true picture of fibro. So you see, there are docs out there that understand what we do go through.
You have to understand that you are new to this and even though you do get upset over some things you read and see, this stresses you out, fibro feeds on stress. That was the reason for Blue to say take a chill pill. Please go back and read some of the old post... Blue use to be to happy/laid back for me when I was down/upset but there is a lot to learn from her.
Remember, we all are here for you no matter what.. Whether you are upset, need to vent, cry a shoulder to lean on...
We have all been where you are so come back often and if you have questions, please ask we will do the best we can. We will offer you support at any time you need it.
I usually don't give out this much info about myself, but I wanted you to understant about how some docs in different fields do believe. Jenn
djl
03-01-2009, 01:25 PM
My father just called me to tell me of an article on Fibromyalgia in our local magazine. It was through a hospital and the Rhumy doctor that was discussing this condition was explaining how hard it can be diagnosed, that there isn't any blodd test for it, the symptoms, the treatments for it, such as different meds, exercises even though he said exercises is very important, but expect to deal with pain at times with it and that this is a REAL condition... there is no cure. My father said this sounds like the perfect doctor for you. He told me the name of the doctor..guess what.....it IS my doctor !!!
Thank god I have a doctor who seems to understand !!!!!!
I am hurting bad today....but I see him on March 17th...hopefuly some med changes will be in the works with some reliefe !!!
Thank god I have a doctor who seems to understand !!!!!!
I am hurting bad today....but I see him on March 17th...hopefuly some med changes will be in the works with some reliefe !!!
Jenn4508
03-02-2009, 08:15 AM
There are people/doctor's who do understand and believe it is a real disease. I am lucky enough to have my GP, pain doc, therapist, psychiatrist and Gastro doc that do believe that fibro is a real disease, not a syndrome, but a disease.
My Mom was a nurse for 30 years and told me that she never understood patients with "chronic pain". She just didn't get it even though she was a nurse. Its not something that was taught like meds, IV's and the such...
She now deals with chronic pain and understands it much better and has apologized to me even though it is not fibro she deals with. However, she can empathize due to the chronic pain. Fibro is hard to understand because it is not something you can see. I get upset sometimes to about the advertising because the actor's they use look like they could run a marathon. However, I kind of giggle at them now, they are not worth my time of stressing out because it only feeds my fibro.
I have always said if some of these naysayers could live my life for only 24 hours and then tell me how real fibro is, I don't think they would make it 24 hours.
Just a thought... Please try to have as much of a pain free day as possible. Jenn.
My Mom was a nurse for 30 years and told me that she never understood patients with "chronic pain". She just didn't get it even though she was a nurse. Its not something that was taught like meds, IV's and the such...
She now deals with chronic pain and understands it much better and has apologized to me even though it is not fibro she deals with. However, she can empathize due to the chronic pain. Fibro is hard to understand because it is not something you can see. I get upset sometimes to about the advertising because the actor's they use look like they could run a marathon. However, I kind of giggle at them now, they are not worth my time of stressing out because it only feeds my fibro.
I have always said if some of these naysayers could live my life for only 24 hours and then tell me how real fibro is, I don't think they would make it 24 hours.
Just a thought... Please try to have as much of a pain free day as possible. Jenn.
bluelakelady
03-03-2009, 12:26 PM
dear jenn,
i am so happy for you. at last ears that hear and they are all yours for 50 minutes. yipeeeee!!! how well i remember you when you were a newbie. my how you have grown. i am so proud of you. you get one of my special cartwheels for firing your shrink and starting over.
i thank you for your kind words about me. it is always an honor to be there for a friend.
always remember my dear friends that doctors work for you. you are the team leader, not them. all my doctors know this and they thank me for knowing who is really in charge. me. i make all final decisions after i listen to the options they offer. there are no gods on my medical team. only humans who care.
peace,
blue
i am so happy for you. at last ears that hear and they are all yours for 50 minutes. yipeeeee!!! how well i remember you when you were a newbie. my how you have grown. i am so proud of you. you get one of my special cartwheels for firing your shrink and starting over.
i thank you for your kind words about me. it is always an honor to be there for a friend.
always remember my dear friends that doctors work for you. you are the team leader, not them. all my doctors know this and they thank me for knowing who is really in charge. me. i make all final decisions after i listen to the options they offer. there are no gods on my medical team. only humans who care.
peace,
blue