What do they do for fibromyalgia?

Posted by ohiogirl42986 @ohiogirl42986, Jul 12 8:07pm

I was diagnosed with fibromyalgia two years ago and I lost my pain. Doctor and my rheumatologist doesn’t know what to do with me so what do they actually do to help with fibromyalgia because I know it’s treatable not curable

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

minnesota10 | @minnesota10 | Jul 13 8:58am

Take care of yourself
Listen to your body
When it telling you to stop and rest. STOP and rest.
Sleep is important
Eat a healthy diet
Exercise get on a good program that you could use for life.
I wish you the best

Colleen Young, Connect Director | @colleenyoung | Jul 13 9:59am

Hi @ohiogirl42986, you're right that fibromyalgia, while not curable, can be managed. Here's some information from Mayo Clinic about treatments and things you can do for self care.

- Fibromyalgia: Diagnosis and Treatment https://www.mayoclinic.org/diseases-conditions/fibromyalgia/diagnosis-treatment/drc-20354785

Self care and knowing your body and your triggers is really important. I like the wise advice that @minnesota10 shared to listen to your body. Only you know you.

You might also appreciate the tips in other discussions, like this one:
- Fibromyalgia: What helps you get through your day? https://connect.mayoclinic.org/discussion/fibromyalgia-11/

@ohiogirl42986, you mention "I lost my pain." Can you explain a bit more? Is your pain well managed? What symptoms are you and the rheumatologist finding hard to manage?

hoosierlarry | @hoosierlarry | Jul 14 5:06pm

What seems clear to me regarding these conditions ( I have GCA diagnosed May 2025), no two people react the same to treatment, and all the information is subjective, not quantitative. That leaves it to each of us to do what Colleen recommends above.
For me, I have decided to attack this, and I am doing 45 minutes of weight training and an hour on a spin bike five days a week. I am not letting my muscles and body waste away from Prednisone. So far its working. Ive lost about five pounds as well from my gut.
Listen to your body is absolutely the best advice. I was a Big Ten scholarship athlete and trained vigorously my entire life so I do not recommend what I am doing for everyone. But I would suggest you do as much as you can and fight like hell. None of us asked for this mess but it can be managed if you are determined enough.

hoosierlarry | @hoosierlarry | 6 days ago

Just had first Actemra infusion this morning. So far no issues, just a little tired but it might be because I did elliptical machine for an hour before I went to get infusion.
They told me no restrictions on exercise and recommended I get flu shot and RSV midway between infusion appointments.