Connect
Anyone else feel like people don't think Fibromyalgia is real?
This is my first foray into a support group so please bare with me. I was diagnosed with Fibromyalgia in August 2024 at Mayo Clinic. I had several weird symptoms that mimicked Sarcoidosis (which I was diagnosed by Mayo in 2010 but had gone into remission). However, many of the symptoms are the same and I was run through the works at Mayo and it was determined that it was Fibromyalgia. I was relieved to finally have a diagnosis to explain the chronic fatigue, lack of desire to engage in activities that used to bring happiness, fairly consistent pain, trouble sleeping and waking up in pain in the middle of the night, restless leg, anxiety, depression, fibro fog, etc. When I got home, my primary care and the chiropracter I have seen forever said, "that is what they diagnose you with when they can't figure out what is wrong. It's a catch all". This instantly discredited the diagnosis and made me doubt it because these are two practitioners I trust. After a year, I am still having symptoms and still trying several therapies (apps, breathing, mental health resources) and even added back a medication or two from the Sarcoidosis days.
I know there are people who suffer from this way more severely than I do. I am able to do most things I want and manage to push through the painful sleeping to be at work and function as best as I can, but I know I'm not lazy and this is not normal. For all of the things I can do I am very grateful. What I am struggling with is understanding the disease and what is just old age (I'm 54) or too many miles on the body vs what is Fibromyalgia impacting.
If anyone else had a similar experience of having your diagnosis dismissed by others, please share what you have done or are doing to get better physically and emotionally, and how you wrapped your mind around reality, regardless of what your reality has become.
Thanks to anyone who has time to respond and I appreciate the opportunity to learn from others.
Like
Helpful
HugInterested in more discussions like this? Go to the Fibromyalgia Support Group.
Connect
@covidstinks2023 Tonmya is over $660/ month WITH INSURANCE! I wanted to try it but until there is a generic, I can’t afford it.
@fmcfs Call the drug manufacturer and see if they will help you. Also, (I know this is a rarity today) ask your doctor if the drug rep for Tonmya is leaving samples that he/she can share
with you.
I have not even checked into it as my doctor had never heard of it.
Blessings & Prayers for you......
@fmcfs You could try Cyclobenzaprine, a muscle relaxant, which is the same drug as Tonmya. The difference is that Tonmya is delivered under the tongue vs. as a pill. I tried it when I had a fibromyalgia flare and it helped, but what helped me most was LDN, low-dose naltrexone.
@daisy17 thanks for suggestions. I already take cyclobenzeprine occasionally, but not everyday. I wanted Tonmya because it bypasses the liver and I’m already on daily Tramadol opioid and Prozac. I’m trying to not damage or over strain liver. It doesn’t do all that much anyway. I tried LDN 10 years ago. Nothing. Now I’m investigating low dose ketamine. Forever the desperate guinea pig!
-
Like -
Helpful -
Hug
2 Reactions@covidstinks2023 My doc never heard of it either! I researched and asked for it. Lol. They don’t care. I bet you have to be on Medicaid to get it. I’m retired 69 yrs. on fixed income with Medicare but have retirement accounts— so that would probably disqualify me. They only pay attention if you’re destitute. I may try it— but I’m not holding my breath. So many times I get my hopes up and FAIL. Over and over.
@fmcfs Have you ever tried LDN, low-dose naltrexone? I've posted before about how it helped me.
@daisy17 tried and failed LDN
-
Like -
Helpful -
Hug
1 Reaction@fmcfs trust me, it's not just you , nobody gets attention anymore, it's the new world . We have to be our own advocate 😊
-
Like -
Helpful -
Hug
1 Reaction@covidstinks2023 I contacted them and I’m not eligible because I have Medicare. In other words— you have to be dirt poor on Medicaid.
@fmcfs I'm so sorry. Ask your Primary if the Drug Rep has left any samples you can try. They
don't offer samples like they use to and you have to ask.
Prayers......
-
Like -
Helpful -
Hug
2 Reactions