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Fibromyalgia is a made-uo disease!
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An_257824 posted:
After 6 years of varied symptoms, I finally have a diagnosis of Fibromyalgia. It's a relief to finally know that everything I feel and experience is real....and recognized.
In a phone conversation with a friend, who is a Massage Therapist, I was told that this is a made-up disease. When doctors don't know what to tell a patient, they just say it's fibromyalgia.
To say I was hurt is putting it mildly. How do others handle these kind of comments by uninformed people?
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booch007 responded:
Ahh the key word in the paragraph was uninformed. We cant teach the world all at once but one by one, and those who are important to us.

You will begin to have a smaller groups around you (1. if you share this whole mess, 2. because we tend to not be able to do things and friends drift 3. To keep explaining or hear things like this is just not worth it, to be exposed to.)

It took a long time to get a physician champion( the right one and fit) then to get my husband as a champion...things fell into a better place after that. My DH was a defender, explainer and helped the rest of the family and friends understand.

I wish you luck. IT IS REAL, we are never painfree and something happened to us, something is wrong. They* whoever they is, will get this right, will figure it out and help is in the tunnel....we just need to find the end. Maybe 5 years away...these last years specifically 2008 I think was a great year. They learned so much more.

I am always hopeful that a fix is coming. .
Good luck, NancyB
 
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painismine replied to booch007's response:
Thank you so much for your kind reply! I know it's real; I live it every day. This page is a God-send to everyone on here. I'm certain I will encounter more doubters as I go on. Just coming on here last night has been a blessing.
I guess I've always been a people pleaser.....and her words really cut, and cut deeply! I told her to re-educate herself for her benefit, as well as the clients she deals with on a daily basis. I think that's all I needed to say. What she chooses to do about it is up to her.
Thanks again.
 
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missist replied to painismine's response:
Painismine--I think your response to the therapist is perfect.
mary
 
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katmandulou responded:
Hello An_ and welcome!

I think it's safe for me to say that we've all been there at some time. I have a friend whose wife, a doctor, said, "I don't believe in FM." Like it's the tooth fairy!

Your "friend" does need to be informed. Tell her that your doc - who treats people with FM - has run tests to eliminate some stuff, like MS or lupus. Unfortunately, FM is an illness of elimination - they have to check for what it's not before they decide what it is. Take a look at http://www.butyoudontlooksick.com/ . It has good tips for us, and you have to read The Spoon Theory - it will help you explain to people what it's like to be in your body.


This isn't a party, and I'm sure your friend means well, but this is the life you MUST lead. I've eliminated toxic people from my life because of the way they treat me and my illness. we have to make choices like that each day.


I wish you the best day you can possibly have,
Lou
 
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painismine replied to katmandulou's response:
katmandulou..Thank you for your kind answer. My Fibromyalgia Community has been a big help!
I appreciate the reading suggestions. I've been absorbing a lot of information since my diagnosis. I believe in informing oneself as much as possible.
In all aspects of life, I find that too many people do not avail themselves to all the information out there on many subjects. I am of the mind that you never stop learning!
Thanks again!
 
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painshadow responded:
Mayo clinic online....myths and misconceptions about fibromyalgia. It was the first article I read AND I recommended it to my friends/family.
 
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elmgrovekat responded:
I have so much empathy for you in your dealings with this "friend." You shared something very personal, a medical diagnosis, with them. The appropriate response from a friend is to be supportive and understanding. They should be happy you finally have a diagnosis from a medical professional.

Discounting the diagnosis and telling you it is not "real" is inappropriate behavior for a friend.


Is this person someone who behaved inappropriately once, but is otherwise a good friend? If so, it may be worth the effort to educate her.

If this behavior is not unusual, you may not want to continue the relationship.
 
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katmandulou replied to painismine's response:
That's why we're here - to get help and to give help.
Lou
 
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painismine replied to elmgrovekat's response:
Thank you so much for your answer and suggestions. It really helps to have people to share conversation with. The positive reinforcement is the best.
Thanks!
 
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msmary15 responded:
It sure would hurt me too.If you haven't experienced pain you just don't know. I used to see elderly and really didn't give much thought to the pain many of them suffer. Now that I've been diagnosed with Fibromyalgia I view elderly with more compassion. I've been in pain since Jan but told it was from cholesterol pills. Since it didn't go away the Rheum said it's Fibromyalgia (yesterday) difficult to hear. I exercise as I feel I can usually overdoing it but do nap which I feel guilty for. I'm 70 yrs old but up until this pain started I was painting ceilings ,had a job and put down a floating floor. Hard to now sit still.Hope to hear back from you
 
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elmgrovekat replied to msmary15's response:
MsMary,
I admire your spirit. Painting ceilings and installing floors is more than most people take on. I know from personal experience, it's hard to learn to let others do for you what you were doing for yourself.
Please be careful about over-doing it on exercise, or anything else. Resting does help to recover, but with fibro, the recovery is decreased because we generate less growth hormone while we sleep. Overdoing on a regular basis can cause major, long-term flares. Again, something I learned from personal experience.
I wish you the best.
K.
 
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msmary15 replied to elmgrovekat's response:
Thank you for your advise and I agree. I crashed last Sat. when I tried to have a "regular day out " Went to bed at 3 pm for the day/nt. Rheumatologist says maximize exercise but I think it should be let your body be your guide, and I really like my 1or2 hour nap in the afternoon. Need it
 
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rudyandirmouse responded:
Hello and Welcome. Sorry that you've gotten the fibro DX, but very glad you've found your way to this site. We all have the fibro DX and some, like me, have the added nerve damage DX of Peripheral Neuropathy. Both inside illnesses that is not seen by others. Hard to explain to anyone who doesn't have fibro

And like you, and many of us here, we went years until a doctor could pinpoint the reason for our pain, Fibromyalgia.,
nerve damage. And like you we took a deep breath and said: whew finally, an answer to why we felt so bad.

As for your friend who says it's a made up disease, phooey on that. Doctors know now it's Nerve Damage that causes the pain we feel. We can't make it up, it's what it is! Fibromyalgia is on google. There is so much out there on it and PN, I suggest your friend take a moment to look and see for herself.

And If I had a two wishes I'd wish they'd find a way to help us deal with the daily pain and fatigue we have and second that there'd be no Fibromyalgia to deal with.

Keep posting, here you will find caring understanding people.
Gentle hugs, Linda R
 
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thirdeyebabe responded:
I know exactly how you feel! What I do is just say, "Well, people have their owns opinions and I respect their opinions, but, I go by what my Doctors say and I know you can't see the pain, but, it is real and that is how I feel. I am sorry you feel that way and I hope you never get what I have." If they can't understand, then they are not truly your best friend. Fibromyalgia is REAL!!! I have had 5 Doctors say the same thing and I can tell you it is a good name for it. Because I have pain from my head to my toes and it never stops. It comes from damaged nerve bundles and the pain is the worst, agonizing pain I have ever had in my life! So, my dear friend, YES, FIBROMYALGIA IS REAL!!!!! Hope I was able to help you a little! Karen


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