My rheumatologist confirmed my doctor's diagnosis. I have CFS. I don't know what to do right now. I'm so crushed. - ThreadSky

calliehall.bsky.social • 369 days ago

My rheumatologist confirmed my doctor's diagnosis.

I have CFS.

I don't know what to do right now. I'm so crushed.

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viralpersistence.bsky.social•369 days ago

(I ask about symptoms bc while me/cfs is a distinct disease, lots of doctors don't understand it and will label fatigue symptoms as "chronic fatigue syndrome" without asking about me/cfs-specific stuff or testing for other things)

calliehall.bsky.social•368 days ago

I saw the rheumatologist yesterday to rule out anything autoimmune. She agreed with my PCP. She offered to try other tests but said they'll likely be negative so I didn't try.

I have PEM, which as I understand it, it a clear marker for CFS.

viralpersistence.bsky.social•368 days ago

jesus I'm really sorry. it sounds like your doctors aren't totally checked out at least.

calliehall.bsky.social•367 days ago

They aren't. I have an appoint with a different rheum if I want it. Not sure if I'll go yet or not, but I have 2 months to figure it out.

Right now, I'm trying to work on my mindset. I'm a very anxious person, so anything I can do to help my nervous system will be a good thing.

calliehall.bsky.social•368 days ago

No problem at all (sorry for the late reply). My doctor ran a ton of tests include RA Factor, ANA, inflammatory markers, B12, Iron etc.

She knows I've been fighting this for years (ADHD and Autism as well). She said because RA Factor came back fine and RBV was up, I likely have CFS.

viralpersistence.bsky.social•369 days ago

there are others on this app that are way more knowledgeable and experienced about me/cfs and related conditions.

viralpersistence.bsky.social•369 days ago

hey, I saw your post on the me/cfs feed. I'm not sure what all you've accessed in terms of resources, but would you like some on me/cfs? and/or would you like to share what diagnostic criteria was used, your symptoms etc.? feel free to ignore! I'm only asking bc I have knowledge of me/cfs and

weibsbild.bsky.social•369 days ago

Unfortunately I`m unable to help, only can give you this: 🫂🍀🫶

calliehall.bsky.social•369 days ago

Thank you.

ingezv.bsky.social•368 days ago

https://www.iacfsme.org/

https://mecfslines.nl/mecfslines/

Sending you 2 websites that might be helpful for contact with other patients and/or information. I hope you can find some help with symptom relief. Big hugs, ME, or CFS, is terrible 🫂🫂🫂

calliehall.bsky.social•368 days ago

Thank you so much. You've been super helpful.

colleensteckel.bsky.social•368 days ago

There is nothing easy about any of this. It isn't your fault. I hope you find good support.

colleensteckel.bsky.social•368 days ago

There is nothing easy about getting a CFS diagnosis. Not all doctors understand the next step is to clarify where you fit under that broad umbrella label. Verifying by testing and looking into ME is recommended by experts. See info at these links. https://drive.google.com/file/d/1OLvCfM3HAZ4Yn_UELRWLXV8c3BTmwgnR/view?usp=drivesdk

calliehall.bsky.social•368 days ago

Thank you for this. I know we're on a spectrum but I didn't realize there was more to it.

beate.bsky.social•368 days ago

I hope you find a good patient community for solidarity and knowledge. It seems like you might have a good doctor already?

#mecfs

calliehall.bsky.social•368 days ago

I think I do. I also saw a very kind rheumatologist yesterday who confirmed the diagnosis.

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