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martini Posts: 6
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Ok I'm sure this has been disscused before but here's my story..Sorry if there is a little ranting..... I have a very close friend who seems to think she is right about everything.... She too apparently has Fibro and MS..(don't want to doubt but things don't add up) Anyway went to my PCM on wednesday for check up and to discuss my Rhumey appt. Feel very comfortable with how things are going.They are working together and we are all on the same page.. Here is my dilema...The drs (both PCM and Rhumey) said I will be on some kinda of meds for the rest of my life..I'm ok with that it is what it is.... But this friend of mine is telling me I have the wrong attitude and "look at me I'm off meds"! Well good for u but I'm not u When you go to med school then give me advice !! But once again she has me doubting my drs!She always has a strong opinion and after yrs of trying to find out what is wrong with me I need support not a lecture or negative attitude!I'm feeling the best I have in 2yrs. But here she comes ready to tell me how wrong my dr's are..UUUGGHH So my main question is this "CURABLE or just MANAGABLE"????? Is it possible she right... From what I read it is not curable(fibro) and especially MS.. Please Please Please give me opinions as this has my wheels spinning and we all know that is not good! Thank you for listening! Have a wonderful weekend all!!! PS Having a very big flare today(not happy about it) but is good as I see my Rhumey today....I can point out all my issues!! Post edited by: martini, at: 06/11/2010 07:14 AM |
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oregonnative Posts: 5133
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So far, manageable but not curable. Don't listen to "friends" who make you doubt yourself. You know how you feel and if she is "cured" then more power to her, and bless her heart. If she's cured it must be a miracle at work.  Listen to your docs and your body. OK? Hugs, Karen Shoot for the moon...if you miss it, reach out and grab a star.
Karen
I am not a medical professional. All comments are based on my own experience and/or from articles I have read. |
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broken Posts: 9265
Group Leader
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I know it is so important to have friends, but I have learned to not talk about my medical to them.. your pain is your own you are not lessor because of it..If she truly has ms and fm and is doing it with out meds( dont mean to doubt)well good for her..and no docs are not exsactly sure about everything with fm.but dont doubt your doc as long as you trust him or her people mean well they truly due but enless they are in your shoes they have no clue... so I due all my talking here its easier we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think |
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bittersweetlife
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Your "friend" sounds toxic. Not helping you or your condition at all. Sounds like you are happy with your docs, but not your "friend". IF she is CURED, makes me doubt what she had to begin with. There is no cure, but the illness can be managed. You have to take care of yourself, and try to be surrounded by positive, supportive people. Whether they are your health care team, family or "friends". I'd have less contact with this person, and tell her if you are going to continue to have a relationship, she needs to keep her comments about medical stuff to herself!! I'm glad you have accepted your illness, limitations and the fact that you will most likely need medications for the rest of your life. Acceptance is the most difficult hurdle of the process. By the way, so glad you found our group. We are your new friends, ready and waiting to support you while we all go through this journey with fibro. Keep posting!!! |
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RedGirl Posts: 1594
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Seems to me with friends like that, who needs enemies?? We all have those folks around us who just absolutely know the perfect way to "fix" us. Fibro isn't curable (yet anyway -- one can always hope) so anyone who is claiming they know how to fix you isn't being helpful and is not necessarily your friend. I expect lots of us have had to essentially cut off contact with some of our pre-fibro "friends" who have the know-it-all attitudes. I'm so sorry this is happening to you. We'll be here for your to talk to and we'll be your friends. Many hugs, Red I am not a doctor or a lawyer. Any comments, posts, or responses I might make are made solely from my life experiences and are not intended in any way to be medical or legal advice so please do not take it as such.
"Nothing but heaven itself is better than a friend who is really a friend."
Plautus
"The language of friendship is not words but meanings."
Henry David Thoreau
"Life is hard. After all, it kills you."
Katharine Hepburn |
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becki1771 Posts: 26
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i think everyone has said it beautifully, your "friend" needs to mind her own business about YOUR pain, meds, and doctors. that's great if she is feeling better, but not everything works the same for everyone. i think you need to mention that while you still want to be her friend, she needs to not butt in where she doesn't belong....does SHE have a medical degree?!? i think not. your doctors know what they are talking about and if she can't handle that then maybe it's time to say goodbye... Becki :)
AS
Diabetes Type 2
Fibromyalgia
Chronic Fatigue Syndrome
Anxiety
Depression
Tachycardia
Fatty Liver Disease
Bursitis
Tendonitis
Asthma
Panic Attacks |
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naddya819 Posts: 4356
VIP Member
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I think the others are absolutely correct. You need to have less contact with her. Fibro is not curable at this point (unless the military is holding out on us LOL) but it is certainly managable with the correct medication and lifestyle changes. Take me, for example, about 3 years ago, it was all I could do to go to work and come home. I would collapse in exhaustion when I got home. I had bouts of pain constantly with no apparent cause. I couldn't sleep well. Then I didn't sleep but a couple times in 6 weeks! That's when I sought help. Today, I have more energy, less pain, and I sleep better. I can go to work, then still come home to do the things that need to be done. I can even return to training horses. The morale of the story: there is a silver lining to this storm cloud! Love,
Naddya, CPhT(R)
Gabapentin 1,200mg/day
Tramadol 400mg/day
Tizanidine 4mg/bedtime
Amitriptyline 10mg/bedtime
Meloxicam 7.5mg/day
Fioricet as needed for migraine
~~Please remember that I am not a doctor. I am a pharmacy technician, however that doesn't mean I know it all! This site should never substitute medical advice from a qualified medical professional. Check with your doctor before adding any over the counter products or herbal supplements!~~
!!My friends, this, too, shall pass!! |
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Natalia5150 Posts: 3632
VIP Member
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My Rheumy would disagree Karen, and you know who that is, he believes that fibro is totally curable. and I kind of have to agree with him. It isn't easy but he believes that IF we learn to control our stress....he says it takes and average of 5 years and starts by learning to control all of life's stressors; If it isn't going to hurt or kill you, let go of it... if it is the job, get a different job or line of work if it isn't going to hurt or kill the ones you love, let go of it the theory is this: from birth on we are taught all the wrong ways to react to stress, and because we experience so much stress in the classic westernized life. When we are cold hungry or wet as infants we wail....when our parents get fed up jumping every time we whimper it trains us to wail louder. when we grow up a little we have to learn to adapt our wails to hits and wails when our slightly larger brother takes something away from us.all through our life we are trained in the wrong ways to resolve stress....and depending on our psychological makeup we learn to be fairly responsible people in society BUT we internalize our stress and this reaction to stress is what hurts us...by internalizing. Then one day, we internalize one time too many....setting off the stress reaction adrenals dump adrenalin thereby using up the scant resources of Serotonin we start not sleeping well....the more we start not sleeping the more we can't sleep thereby using up the last of our Dopamine, and of course no dopamine no sleep without assistance This can go on forever, or we can spiral down into fibro. we can control FIBRO for years through things like Lyrica, benzo's pain meds, but that's really only a stop gap method. But by retraining our mind we can learn not to react the same high stress ways we have in the past, and the more we do this the better we get. love, Natty, who is still in re-training and probably will be for a long time....It took my doctor 5 years to "be healed" sigh............ gentle hugs and a peck on the cheek,
Natty
I am an RN with a current license since 1984....sheesh that's a long time....but that doesn't mean I am a DOCTOR
I dispense advice freely but you should take it with a grain of salt and do your homework and check with your doctor.
He gets paid more so he must know more. Right?
I am truly sorry your are reading my post, because it means you are here at MD Junction instead of out skydiving or deep sea treasure hunting or climbing Mount Kilimanjaro.......
Empyema-
Fibeomyalgia
Hashimoto's
IBS=if you have to ask you don't want to know
severe osteo arthritis, spine/neck
DJD hips r knee some fingers
hypoglycemia, which is every bit annoying as hyper
otherwise not so serious if you pay attention
too many meds to count but for our purposes here:
Lyrica is back Yay!
Cymbalta
pain meds |
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Natalia5150 Posts: 3632
VIP Member
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Part of being healed, and I can attest to this, is that if there are toxic people in your life you simply must learn to walk away. gentle hugs and a peck on the cheek,
Natty
I am an RN with a current license since 1984....sheesh that's a long time....but that doesn't mean I am a DOCTOR
I dispense advice freely but you should take it with a grain of salt and do your homework and check with your doctor.
He gets paid more so he must know more. Right?
I am truly sorry your are reading my post, because it means you are here at MD Junction instead of out skydiving or deep sea treasure hunting or climbing Mount Kilimanjaro.......
Empyema-
Fibeomyalgia
Hashimoto's
IBS=if you have to ask you don't want to know
severe osteo arthritis, spine/neck
DJD hips r knee some fingers
hypoglycemia, which is every bit annoying as hyper
otherwise not so serious if you pay attention
too many meds to count but for our purposes here:
Lyrica is back Yay!
Cymbalta
pain meds |
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oregonnative Posts: 5133
VIP Member
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All you say make a lot of sense. If we reverse all the things that brought it on in the first place, stands to reason the fibro could reverse. Yet, wonder in my mind if it is just in a sort of remission, lurking, waiting to attack. I have gotten rid of most of the stressers in my life, including toxic friends and family. Still, some you just have, such as my son who is so ill. However, I am not a hand wrtinger and don't let my worries run my life. I am positive that all the trauma in my childhood, plus the insomnia I have had since I was 5, caused this. I get more sleep now that ever, and have waaay less stress, yet here it is. Hope I have the same result he has had some day. Also hope you are making progress in that direction, as I want my Natty to be well. Thanks for the reminder that there is hope and that it may be largely up to me and all of us. If it's so, then there truly is hope for a cure. Love and warm hugs, Karen Shoot for the moon...if you miss it, reach out and grab a star.
Karen
I am not a medical professional. All comments are based on my own experience and/or from articles I have read. |
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