"But my friend Annie is doing so well with her fibro!"

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myjoy
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Date Joined Feb 2009
Total Posts : 686
   Posted 6/23/2009 12:41 PM (GMT -7)   
My mother keeps saying this to me. She talks of people who she knows that are cured of fibro. Like I'm some kind of failure because mine is not "all better."
This past weekend my family was also talking to me about working out so my fibro "gets better." I think I am going to scream! Why don't people understand?
Does fibro really "get better" for some? What do I say to my family? I guess I'm just having a bad day. shakehead
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), buspar, abilify, trazodone, lorazapam, nexium, nabumetone, hydrocodone, c-pap machine, estrodial patch.


SarahBear9708
Regular Member


Date Joined Jun 2009
Total Posts : 286
   Posted 6/23/2009 1:01 PM (GMT -7)   
I understand that feeling completely. What people need to realize is that every case of fibro is different. No two people have it exactly the same. Some may have it more severe then others. I get alot of crap from my family too, so trust me, you're not the only one. I'm trying to college and its not working so well and my parents keep throwing a fit. They just don't understand how hard it is.

As for your questions I don't know if fibro really "gets better" for anyone. I know some people who have an easier time with it once they are put on the right medications and are just dealing with it better, but that doesn't mean it has actually gotten better. As for what to say to your family. I think you should tell your mom how all cases of fibro are different. That maybe Annie has a less severe case and that's why its easier for her. And for the rest of your family, if they don't understand, do some research and print out some readings for them to take a look at. Maybe they will understand a bit better then.

Good luck hun!
~*~Sarah~*~

"You were only given this life because you are strong enough to live it."

Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, RLS, Asthma.

Rx: Indomethacin, Buspar, Cymbalta, Lyrica, Requip, Advair, Compazine, Lunesta.


Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 6/23/2009 1:20 PM (GMT -7)   

Yes, I think you can get better, some, but not completely.  You will still have bad days and good days.  But if you learn to pace yourself and manage your pain, it does get easier.  If someone was cured of fibro, that seems really far fetched to me. 

I am sorry that these people are giving you such a hard time.  Sometimes you just gotta nod and say mm hm and ignore them.

Soft hugs,

Sue


lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 6/23/2009 1:49 PM (GMT -7)   
devil Gggrrr! Sounds like my family and friends who keep referring to the 1 and only other person they know with FM besides me..."But Becky is teaching YOGA classes now and she feels great! See?" (Then they sit there and look at me with this pathetic, desperate look on their face...I dont know if I should be angry or sad that they are so desperate for me to be healthy!) smhair
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibromyalgia, Endometriosis, Migraines, Asthma, Chronic Fatigue

Savella, Topamax, Morphine, Percocet, Wellbutrin, Abilify, Crestor, Resoril, Loestrin, Imitrex

B12, Magnesium, Melatonin, Omega3
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Knowing without doing is like plowing without sowing."


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 6/23/2009 2:23 PM (GMT -7)   
If someone is "cured" of fibromyalgia that means they never had it to begin with.  Ignorance is bliss!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 6/23/2009 3:29 PM (GMT -7)   
That's what I thought, Sherrine, but I am still pretty new to this. My sis told me to try Cayenne pepper. I was wondering if I was supposed to rub it on or eat it.

I think the hardest thing for me was to realize I had to build up my endurance again when I had endurance before this dumb fibro hit me. And . . . knowing it would not get back to what it was before. Bleh
Sue

crazyoldcatlady
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 6/23/2009 3:30 PM (GMT -7)   
I've heard several times from various members of my family that Aunt So-n-so "used to have" fibro. No one can tell me what made it "go away". Perhaps it was miraculous healing? Now, I'm not saying I don't believe in miracles, BUT... I'm more inclined to believe it was a misdiagnosis, and dear Aunt So-n-so didn't really have fibro in the first place. I have never seen any legitimate medical literature on fibro that said it is curable. There's just so much misunderstanding out there about this condition.
Donna


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 6/23/2009 3:43 PM (GMT -7)   
My family is well-meaning but they don't understand it. My one sibling who has had fibro for 15 years is kind of distant from the family, and I can understand why. It feels so isolating, and my family is anything but hands-off; they are demanding, in their caring. I have made an extra effort to help my family understand how I"m feeling, by putting in ways they can understand. For instance, I had to stay home today from work due to pain. I haven't had to do that in a few months. My boyfriend, bless him, is trying to understand what he can do for me, so I tried to explain it to him in terms he can understand. I used an example from science fiction- in the movie "Dune" when the Kyle MacLachlan character has to stick his hand into the box that causes pain, and he cries out when he can't take it any more, and then pulls his hand away, thinking it is going to be all mangled from whatever he thought was happening to it, only to see his hand whole and unchanged. I said, THAT's what FMS feels like! So I just try and use different ways to illustrate what I'm feeling. Good luck.

WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 6/23/2009 3:47 PM (GMT -7)   
Fibro cannot be "cured" or "gotten over" no way! I've said this all along and I will keep saying this until I am convinced otherwise.
It can be MANAGED.
There is a plethora of ways to manage fibro ... a lot of articles online about different things to do in fact. All of those articles do not promise to cure Fibro though .... just to help you manage the symptoms.
What people can't seem to understand is that Fibro affects each individual differently as well as each individual has a different reaction to all the myriad of Fibro management techniques availible.

myjoy
Veteran Member


Date Joined Feb 2009
Total Posts : 686
   Posted 6/23/2009 3:59 PM (GMT -7)   
Thanks everybody - all good stuff from you. You've helped me feel better that I'm not alone in this misunderstood disorder.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), buspar, abilify, trazodone, lorazapam, nexium, nabumetone, hydrocodone, c-pap machine, estrodial patch.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 6/24/2009 6:58 PM (GMT -7)   
I have a lot less pain than I did 12 years ago. At that time, I was thinking about filing for disability. Now, I can function and do most of what I want to do, including work. I've made a lot of changes in my life. I would never say I am cured, but I would say I am better.

I still have fibrofog, fatigue, and pain. I don't take any meds for fibro. I do take tramadol for about 2 weeks/month for endometriosis pain. I've tried a lot of things over the years and some things helped a bit and some didn't help at all. I think malic acid and exercise were the two things that helped the most.

I really wish I could get my brain back.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 6/24/2009 8:06 PM (GMT -7)   
Some people have found ways to manage their fibro so that they do really well. But it never really goes away. There is no cure for fibro. My mom has recently taken to talking about all these people that she knows with fibro who work and do just fine. She has been trying to get me off lortabs. Any time she talks about these people, I always wonder to myself what medications these people are taking to make it through to be able to work. I am sure some of them are on tabs just like I am.
It drives me crazy when people talk about people they know with fibro who live perfectly normal lives. But, do they really see the pain they are in? Do they really see the toll it takes on them to work? Do they know all the meds they are taking to make the pain more tolerable? I mean, unless you live with that person, you can't really know everything they go through to deal with the pain. They don't know if they go home every night or morning or whenever after work and just collapse. And because they don't know, I really don't think that they should bring any of it up. But, that could just be me.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 6/25/2009 7:52 AM (GMT -7)   
I won't even get started on this subject or my BP will go sky high. I hear this all the time too, well so and so has fibro and she does this and she does that, well good for her. I do all I can do.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


evolving
Regular Member


Date Joined Jun 2009
Total Posts : 24
   Posted 6/25/2009 9:05 AM (GMT -7)   
is there any way to get these uninformed people to read articles on fibro or even the book called "fibro for dummies" [ havent read it myself but have heard it is really good] ? i have even shown my husband chat on this site so he could see that we are not all just crazy or lasy. before i was diagnosed my husband used to start the day with the question "well.......what hurts you today"?i actually felt guilty for feeling so bad and wondered if i was just a hypochondriac!!!!please get some satisfaction from knowing that we feel for you and understand completely. i am so grateful for this site.......i really appreciaate the people that started it. good luck to you.. you have alot of friends here...me included.

Hopegirl
Veteran Member


Date Joined May 2008
Total Posts : 704
   Posted 6/25/2009 11:57 AM (GMT -7)   
I sure am glad that my family doesn't know anyone else who has Fibro!! LOL
 
But I do get the well, you just need to exercise, its really all in how you create your mindset...
 
-And of course...your on too much medicine..Hello, do you think I want to be on all this junk???
 
Why can't they realize that we would love to go back to "before" fibro but in most cases, its not an option.
 
 
Monica
 
Lymes, Fibromyalgia, Anxiety, IBS, Reflux, Insomnia,Sleep Apnea
Taking it one day at a time.... 


boo32
Regular Member


Date Joined Jun 2009
Total Posts : 222
   Posted 6/25/2009 1:00 PM (GMT -7)   
hi,
I can go for months without a flare up but it's never ''cured''. Even when i'm not having a bad flare up it just seems manageable, the mishmosh of words never goes away and my friend of 20 years says that even in secondary school she always hung on the last word i'd say before my face goes blank as she know's the next thing i'ii say is ''what was i saying''.

I've also seen how little people listen to you in everyday encounters as the people that don't hold the conversation for me weren't listening in the first place. It happens a lot. Does that make sense?
BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most!
Fibro and spinal arthritis, trying to mange it with diet, exercise and accepting my limits, as i'm allergic to EVERYTHING!
TTC NO1 since Jan08


Lefty85
Regular Member


Date Joined Apr 2009
Total Posts : 87
   Posted 6/25/2009 5:48 PM (GMT -7)   
I'm sorry to hear that this is happening to you. It's so frustrating. My family isn't understanding either. Plus, where I work, there is a lady who is supposedly diagnosed with fibromyalgia, so whenever I was approved for FMLA so I don't lose my job, she went around telling everyone that she never misses work and all she does is take tylenol occasionally for a headache. Well, then it doesn't sound like she has fibro, right?? It's unfortunate that very few people seem to understand our illness. Thankfully everyone on here understands one another!! You'll eventually find a way to manage your fibro... it just takes time.

Take care!

SaraBeth
Fibromyalgia, Depression, Anxiety
***********
Amytriptiline, Flexeril (PRN), Percocet (PRN), Ambien (PRN at bedtime), B12
***********
Be not afraid of going s l o w l y, be afraid only of standing still.
 
 
 
 
 
                                                                                  


Bootknife
Regular Member


Date Joined Apr 2009
Total Posts : 44
   Posted 6/25/2009 8:32 PM (GMT -7)   
I had two Dr appt's today.
 
My PCP this morning who stated "Unfortunately we do not know how hard Fibro will hit any individual, or who will have seeming remissions".
 
Pain Mgmt Doc this afternoon saying "Fibro will disable some while some will be able to manage without an type of treatment".
 
While searching for alternative treatments or "cures" I came across a Treatment Facility and a testimony from a Husband who's wife had been successfully treated. She is almost sumptom free unless there is a weather change or a full moon. I wonder if we all have Lycanthropy, and the pain is our inner wolf attempting to escape!
  idea
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