I’m terrified! After horrible meeting with Doctor.

JamieMarc

Active member
Joined
Nov 17, 2021
Messages
93
Reason
DX FIBRO
Diagnosis
10/2021
Country
US
State
FL
You don't mention how long this has been going on and if you have had any blood work, Radiology, seen other specialists etc, so it is difficult to answer your question. Assuming you have had all of that done, that every symptom has been explored so to speak, I would not advise starting your conversation with the new doctor by saying I have fibromyalgia or I think I have fibromyalgia. I would also advise you not to have any preconceived opinion of the new doctor as you have never met presumably. I would simply sit down and tell him about your history and all of your symptoms, tell him your story. Write it all down if it's difficult for you to remember and bring that with you. After telling him your story, see where the conversation goes from there and then decide whether or not you think it is appropriate to bring up fibromyalgia. It took me 7 years to be diagnosed After experiencing all of the same frustrations that you have. After seeing every applicable specialist, extensive Radiology and physical therapy, it was a neurologist at a pain management practice that ultimately made the diagnosis for me. I'm sorry but that is the best I can do with the limited information you provided about your past treatment. I wish you luck and always remember that we are all in this together and we are here for one another.
 
Last edited:

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
662
Reason
DX FIBRO
Diagnosis
07/2022
Country
US
State
WI
well, my journey started when I swore I had low thyroid problems (still think there is something going on there, but that is not for here) - blood work always came back in "normal" ranges.. granted, at the high end of normal, but still considered normal... and that was when I told my doc that there had to be something that was causing all these symptoms (of the top 10-12 hypothyroid symptoms, I have all but goiter) and that I was sick and tired of feeling sick & tired all the time. And that is where my real journey to a fibro diagnoses began.
Funny thing about all those hypothyroid symptoms.. many can also be attributed to fibro.... there are a couple that cant be, however...

But anyway.. Medications...
Thyroid meds are necessary...
Depression meds... maybe, if they actually help.. but learn/know what the side effects are.
Pain meds, in general, are bad for the liver (including over the counter ones), and opioid meds are notorious for causing constipation - so if you are taking those, it is best to try wean off and not to take them if at all possible. Not to mention that pain meds generally do not really help with fibro pain. (and they rarely do much for nerve pain)
That said, i do use Tylenol Arthritis occasionally for arthritis flares, mostly in the hands.. but it is not an everyday kind of thing.. I only use it when I really need to...
My physical med doc has also started me on low dose N - have only been on it for a week at the starter dose (1.5mg), so I cant really say for sure if it is helping or not yet.. Will be several weeks yet before I get to the primary dosage level. He wanted me to try this because there have been good results reported for both fibro and peripheral neuropathy, which i also have (sensory neuropathy in my legs)... so, only time will tell if this is going to be helpful for me. We have tried pretty much all the usual meds for these problems and my results on them were not great.. they either did nothing and/or they had undesirable side effects.. so this is a last resort kind of thing for me.
 

Cbreeef66

Member
Joined
Jul 26, 2022
Messages
12
Hello, I am so sorry to hear yet another suffering person needlessly frustrated because of unprofessional doctors. I wont give you my multiple stories dealing with close minded incompetent physicians but what I can tell you is DONT GIVE UP. You know your body, a suggestion that helped me was to bring an advocate with me to the appointment, it does help. Another option is contacting the drug companies that make drugs used for fibro and ask for doctor recommendations. Specialists who know about this condition are more apt to pay attention. I wish you well. It will get better.❤️
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,152
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Another option is contacting the drug companies that make drugs used for fibro and ask for doctor recommendations.
Does that really work? It wouldn't here, they'd think I was making fun of them! 🧐
Using the doc lists here (which aren't up-to-date tho), doing a web search and phoning docs or asking people is what I'd try.
 

EzbG

Member
Joined
Sep 4, 2022
Messages
28
Reason
DX FIBRO
Diagnosis
08/1997
Country
US
State
CA
Having someone go with you to your appointment could also be helpful - a partner, family member or close friend - someone you trust and knows what you are going through that can act as an advocate for you.
YES - but not just as an advocate, but as an extra set of ears. In such an important first appointment with a new practice, it easy to forget to say something, or you miss something that was said. Write notes you and your second each have a copy of, and be sure you check off your points.
When I discovered I may have Fibro, I simply told the doctor what my primary symptoms, adding “I’m sick & tired of being sick & tired!” I didn’t list more than the 3 biggies (for me), because I didn’t want to seem like a hypercondriac. Then I let her talk.
 
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