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shirl

New member
Joined
Sep 25, 2013
Messages
9
Diagnosis
00/0000
Country
USA
State
GA
I honestly feel as if my doctor as well as others don't know how much pain I have and just how miserable I am. When I told my friend the diagnosed she said "well, isn't that just a name they give it when they don't know". Then another person said "how do you know for sure if there was no real test?"
my diagnosed was based on a visit to 3 different doctors, a complete physical exam and pressure points. I asked about some type of test and was told there IS a test but the cost is just under $1,000 and insurance will not pay on it.
It just seems to me that nobody takes this disease seriously. The rheumatologist made the diagnosed and sent all records to my regular doctor who suggested a drug that has so many side effects I didn't want to take it. If I had a mild pain medication, I could tolerate this most days but it's getting harder and harder to deal with. Mornings are terrible.
Would like to hear from some of you about reaction from others when you were diagnosed.
 

MizzDeeDee

Distinguished member
Joined
Sep 24, 2013
Messages
129
Diagnosis
01/2009
Country
us
State
Va
I had a similar reaction as you did initially. In fact, I was Pharmacy Technician, and a Pharmacist I worked with told me that he had been told that Fibro wasn't real and was a "wastebasket diagnosis". I told my rheumy about it, and boy did she get mad. She told me to go back and ask him if he thought the FDA made it a habit to approve drugs for disorders and diseases that don't exist. I did ask him, and he smirked and never said anything to me about it again.

People don't understand and they don't get it. As for your doctors, the best thing to do is be your own advocate. Be aggressive and push for help. You have to make sure you're taken care of, even if your doctors don't like it. If they don't like it, go to someone else.

This is a really great forum for help. Everyone is here for you if you need help, or even to just vent.
 

Trellum

Legendary member
Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
I honestly feel as if my doctor as well as others don't know how much pain I have and just how miserable I am. When I told my friend the diagnosed she said "well, isn't that just a name they give it when they don't know". Then another person said "how do you know for sure if there was no real test?"
my diagnosed was based on a visit to 3 different doctors, a complete physical exam and pressure points. I asked about some type of test and was told there IS a test but the cost is just under $1,000 and insurance will not pay on it.
It just seems to me that nobody takes this disease seriously. The rheumatologist made the diagnosed and sent all records to my regular doctor who suggested a drug that has so many side effects I didn't want to take it. If I had a mild pain medication, I could tolerate this most days but it's getting harder and harder to deal with. Mornings are terrible.
Would like to hear from some of you about reaction from others when you were diagnosed.
Sadly there still are a lot people out there who think fibro isn't even a real disease, and that most people who claim to have it are just making that up. I hope they don't get diagnosed with that one day as well, because the pain and fatigue caused by fibro is quite real. By the way, I hear you on that one... most medications have a lot side effects, that's why I'm going unmedicated at the moment. I'm still recovering from a really nasty medication.
 

cinderr

Senior member
Joined
Jul 31, 2013
Messages
215
Diagnosis
02/2008
Country
US
State
WI
Trellum, you are so right! Many people have said that it is a band aid put on something they don't understand! We all know what it is to suffer but until you have this or a similar disease, you cannot understand.
Even my husband who has recently suffered himself does not 'get it'. I think only three days after his back injection, he has forgotten what true and constant pain is! So---he snores his head off while I moan quietly on my own side of the bed. It sucks!
 

shirl

New member
Joined
Sep 25, 2013
Messages
9
Diagnosis
00/0000
Country
USA
State
GA
Every single drug I've ever been prescribed has had very negative effects on me except my Xanax which I've been given for anxiety attacks, and my thyroid medication. Three years ago I went to the Cooper Clinic, Dallas Texas for a total and complete examination. I was given Boniva for a back problem I've had for 20 years (after a fall) and shortly after I started taking it I became very ill. Aches and pains in muscles of my legs and actually all over my body. I thought I had the flu, didn't have enough energy to walk from sofa to bedroom. I'd forgotten about the new meds but when I remembered I called my doctor at Cooper Clinic and described what was going on. Her words were : "don't take ANYMORE Boniva". When I told her I'm not surprised it's the Boniva since I'm intolerant to almost every single thing prescribed for me, she explained that a person's tolerance of drugs, any drug, depends on the enzymes in the body. Anybody ever heard this?
 
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