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06/11/2010 07:02 AM

Fibro, CURABLE or MANAGABLE???

martini
 
Posts: 6
New Member

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 uAngry When you go to med school then give me adviceBlink !!

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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06/11/2010 07:09 AM
oregonnative
oregonnative  
Posts: 5761
VIP Member

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. Smile Listen to your docs and your body. OK? Smile Hugs, Karen

06/11/2010 08:06 AM
broken
broken  
Posts: 11052
Group Leader

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


06/11/2010 10:14 AM
bittersweetlife

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!!!


06/11/2010 10:23 AM
RedGirl
 
Posts: 1594
Senior Member

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


06/11/2010 11:25 AM
becki1771
becki1771  
Posts: 26
Member

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...

06/11/2010 03:57 PM
naddya819
naddya819  
Posts: 4435
VIP Member
I'm an Advocate

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!


06/11/2010 06:14 PM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

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............


06/11/2010 06:15 PM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

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.

06/11/2010 06:42 PM
oregonnative
oregonnative  
Posts: 5761
VIP Member

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

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