What did you do after you were diagnosed?

Status
Not open for further replies.

ireadhealthinfo

New member
Joined
Mar 9, 2013
Messages
5
Diagnosis
00/0000
Country
CA
State
ON
Hearing news from doctors is good and/or bad for individuals. Some people are relief when they find out the cause of their medical conditions. Others are anxious when they hear bad news. What did you do after you were diagnosed? Where did you go to find more information about your diagnosis? Thank you all for sharing.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
Pennsylvania
I was relieved until the doctor who diagnosised the condition said he did not really believe in it, and that most other doctors did not either. Then I was upset and mad and angry all at the same time. I went to the library and read all their books. I went online and read everything I could find. I checked out the book stores and bought a few books. And in the end, I realized I better come up with some coping skills and get some mental health therapy to help me deal with the negative doctors and friends and family members, who thought it was a big joke.

I had no support in the early days of diagnosis. My own husband thought it was all in my head. I just held on and gritted my teeth, getting through the worse days by myself with faith that someday I would find someone who believed me. I hope I answered your question. :)
 

suadela

Active member
Joined
Mar 12, 2013
Messages
31
Diagnosis
02/2013
Country
US
State
KY
I would say the diagnosis did nothing for me. I was neither relieved or anxious. I knew the pain was still there, and the same, whether it had a name or not. I just wanted to get it to lighten up. We are still on the path to finding the correct medicine "cocktail", so, until then I will continue to be bitter and grit my teeth through the pain.

I did go off and do some research after the diagnosis (how I found this site, lol) but really didnt find any answers as to how to solve my pain, bc in all honesty, everyone here knows, there isnt a way to "solve" our pain. There are various ways to cope and feel slightly better... but, no solution...I am a black and white person, so, to me there is either a fix or no fix.. not a middle ground... hopefully one day I can feel like I am doing better... that will finally bring relief to me...
 

Libragirl67

Active member
Joined
Mar 14, 2013
Messages
82
Diagnosis
00/0000
Country
us
State
michigan
It is always a relief to me to be able to find the core of an issue or problem. Fybromyalgia is no exception to that rule. To put a name to something so baffling, is a relief for me. At least I can move forward from here. I feel like it is puting a piece of the stairs together. It it one step but it is building upward. And it helpd sme go on. I just try to go online and find information I look for every book I can find. I try to process whatever I hear.
 

mudrock

Active member
Joined
Mar 20, 2013
Messages
36
Diagnosis
00/0000
Country
US
State
south carolina
I swore that I had something wrong with my back that was causing all of my issues. I had all sorts of lab work completed, and I had really great number and was overall very healthy according to the lab work. It was a relief but at the same time I felt like I was right.
 

KimberlyJ

Member
Joined
Feb 21, 2013
Messages
10
Diagnosis
02/2013
Country
US
State
IN
For me, it was a total relief. I spent too much time being scared. My doctor said it was a reaction to an immunization that just wasn't clearing up and wanted to put me on another round of Prednisone, but for a much longer time. I hated the way I felt on the Pred and just seemed to know that the symptoms would come back again when it was over so it was frustrating to say the least.

Knowing what was wrong with me led to two things: Medicine that really helps and knowing WHY I was constantly sore and stiff. Just knowing makes it easier for me to handle the things that are happening to my body. I now have a name for the strange disorder that hit me out of the blue, and not a fear of what was wrong with me.
 

Sbuss

New member
Joined
Apr 18, 2013
Messages
6
Diagnosis
04/2013
Country
Us
State
Wisconsin
I would have to say I found some relief in my diagnosis. As the rhuemetologist had pointed out that I have been dealing with pain issues since I have been in high school with no "found" reason until 5 years ago when they found a small herniated disc in my lower back. He feels this gave them something to blame my pain on but doesn't feel this was the only factor. I have struggled with urinary frequency, dysmenorhea, sciatica, degenerative disc disease, headaches, hormone fluctuations, anxiety, night sweats, hyperparathyroidsim. All of these things which never had a definate diagnosis and never could really find a reason. After the rheumotoligst telling me that many of the symptoms from these conditions are all symptoms of people with Fibromyalgia. I new the last 10 years that something was not right but no tests would confirm there was...so that is where the relief came in. I was not at the least excited as doing more research I found there is nothing really that can be done about these terrible symptoms. I have to meet with my primary doctor within the next week or two to discuss behavior modifications that may help. I feel that I can probably learn more from people on here than from them at this point. We will see....
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
USA
State
PA
I've seen it happen both ways with friends who have Fibro. One of them basically decided that she wasn't going to try to do anything to help it and more or less determined that nothing *could* be done.

But another friend took it as a challenge and started reading everything she could find on it. She remembered to be careful with online searches, though, because there is so much conflicting information. She ended up sticking more with the medical community web sites for solid information and using the user-driven sites for ideas to research further in the medical venues.
 

Taloge

New member
Joined
May 19, 2013
Messages
1
Diagnosis
05/2013
Country
US
State
Wisconsin
Being a diabetic seemed to delay the diagnoses. After about 5 years they finely said it was fibromyalgia. The day I got the diagnoses I called my sister and said when your right you are right. Now here I am, don't know what to say or do. At least I'm not crazy, the pain is real, it's not from my diabetes, it not in my head. I'm not alone. That's all I have to say for now.
 

becwright67

Member
Joined
May 8, 2013
Messages
12
Diagnosis
3/2013
Country
Uni
State
Ohio
I was unsure when I first got diagnosed. I have a sister in law that just graduated nursing school and she told me that doctors only diagnose fibromyalgia when they can't find anything else. That really upset me because I knew what I was going through was real and I was in pain. I was afraid to tell anyone because I didn't want them to judge me. It's amazing how one person can put a thought in your head and it can cause so much doubt. I told my doctor what she said and needless to say, he was very upset. He sat down with my husband and I and explained that Fibromyalgia is real and exactly what it is. I felt much better after that. I also have degenerative disc disease and at first I thought that it was that acting up but he explained about the tender points and the difference between the two. Thank God that I have such a wonderful doctor or I would still be feeling doubt and trying to hide my diagnosis. I wonder how many people this has happened to. We really need some awareness about this condition.
 
Joined
May 27, 2013
Messages
20
Diagnosis
05/2013
Country
US
State
Pennsylvania
I was relieved by the negative results of other tests - I don't have MS or Lyme or cancer or Lupus. That was a major relief.

The fibromyalgia diagnosis itself is a bit frustrating.... every single diagnosis I have, psychological or physical (and yes I know that this one is physical!), is from my horrendous childhood of abuse and perpetual stress and fear. I feel like I didn't try hard enough to handle the generalized anxiety disorder, depression, ptsd, and eating disorder. Like if I had tried harder maybe I wouldn't have gotten fibromyalgia. And unlike the others, I can never make this go away. It's just there. I'm frustrated.

I was told to do aquatic physical therapy and to exercise on my own, though, which I am hopeful about and looking forward to. We'll see what happens. I'm just grateful my rheumatologist really listened to me and didn't jump to drugs.
 
Joined
May 27, 2013
Messages
20
Diagnosis
05/2013
Country
US
State
Pennsylvania
Being a diabetic seemed to delay the diagnoses. After about 5 years they finely said it was fibromyalgia. The day I got the diagnoses I called my sister and said when your right you are right. Now here I am, don't know what to say or do. At least I'm not crazy, the pain is real, it's not from my diabetes, it not in my head. I'm not alone. That's all I have to say for now.

I keep seeing drug commercials on tv (which drives me insane.... why are they advertising drugs to the PATIENTS rather than the DOCTORS? anyway....) about something called Diabetic Nerve Pain. Do you know if the two are different, or if that's just what they call it when someone who is diabetic has fibromyalgia?
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
USA
State
PA
I keep seeing drug commercials on tv (which drives me insane.... why are they advertising drugs to the PATIENTS rather than the DOCTORS? anyway....) about something called Diabetic Nerve Pain. Do you know if the two are different, or if that's just what they call it when someone who is diabetic has fibromyalgia?

I hope someone will correct me if I'm wrong here, but I've always understood "diabetic nerve pain" as neuropathy. Numbness, nerve damage etc. and it's extremely painful.

There is also a form of neuropathy (peripheral neuropathy) that people who are *not* diabetic get but it's not the same thing as fibro, no. The peripheral neuropathy is one of the problems that my friend with chronic pain is dealing with.
 
Joined
May 27, 2013
Messages
20
Diagnosis
05/2013
Country
US
State
Pennsylvania
Ok! I was just curious because I've only recently heard of it on Lyrica commercials. Thanks for the information!
 

jenfitzy

New member
Joined
Jun 29, 2013
Messages
6
Diagnosis
01/2013
Country
UK
State
Bedfordshire
I have been diagnosed after over 10 years of problems, I have been given painkillers which were not suitable for fibro, and now have broderline kidney damage. Although doctors say there is no treatment plan, the fact that it has a name and is not a figment of my imagination, is helpful.
 
Status
Not open for further replies.
Top