Next steps for fibro

Hi everyone, I’m relatively new here and I just wanted to put some thoughts out there and get some feedback or ideas from all of you.
I was diagnosed with fibromyalgia in December 2025. I’m approximately 10 months into symptoms and about 15 weeks into doing my own little structured rehab at home. I Left my job shortly after being diagnosed and I’ve been spending most of my time trying to heal.

My daily routine consist of meditation, Desensitization( since I have Sensitivity to certain types of clothing I practice wearing it), Yoga, And a walking outside.

Since I’ve started the below symptoms have improved -
Sound sensitivity
Insomnia
Brain fog
Appetite
IBS symptoms
Fatigue

These are not totally gone, But there has been some improvement. Sometimes my brain tries to trick me that maybe it wasn’t that bad before. But thankfully, my family has witnessed some of my symptoms, like my huge lapses and memory, and have been able to tell me that it no longer occurs.

However, I haven’t seen a big improvement in pain. Sometimes I wonder if it’s getting worse.
I can never be sure. Due to the nature of fibromyalgia, the pain moves around, changes quality, does all types of weird things. It’s almost impossible to keep track of. Additionally, I’m trying not to keep track of it too much because it just causes more fear and attention.

My question is, If you were in my shoes, what would your next step be?

Would you think maybe my previous symptoms were anxiety, and maybe the pain is caused by something else. Would you go to the rheumatologist to redo bloodwork to make sure that nothing else has popped up ?
Would you add journaling to my routine?
The hard part about all of this TMS stuff is that no one can really heal us. We need to heal ourselves and I find it really hard to figure out what I should be doing next.

 

I think a structured TMS programmed like the structured educational program on this site isn’t a bad idea, there’s a good amount of journalling and emotional work involved.

I mean, you’re seeing progress, it’s pretty typical for the TMS brain to think I’m missing something or something is really wrong that the doctors are missing. I’d be wary about how much emphasis/time you’re dedicating to healing (you say most of your time is spent healing), how much actual joy are you finding. How much are the activities you’re doing to heal leaching into your everyday life, I love meditation and it has helped me a lot, but how much are you getting lost in the doom thoughts, the obsessing of the pain etc? We do need to actively push back against are nonsensical fear based thoughts throughout the day. Naturally the symptoms that bother us the most and the ones that we fixate on the most are the last to budge, it’s just the nature of TMS.

I think all your symptoms are caused by a dysfunctional nervous system, all of which are really typical for being stuck in fight or flight.

I would also detach from labels and diagnosis’s, fibromyalgia literally just means widespread muscle pain, it’s a description of symptoms. If you want to go to another doctor for a second opinion so be it, but odds are if baseline auto immune markers saw nothing in December they won’t now. But sometimes the reassurance is needed to help us accept the TMS diagnosis.

honor yourself! you’re making progress! it’s often a slow process, get rid of timelines and expectations!

 

Hi @alexia.cox

It really sounds like you’re on the right track. I was bedridden due to diagnosed fibromyalgia and chronic fatigue, and the most important thing I learned was to do everything in baby steps. When I started, I could only stand for a couple of minutes due to severe pain and exhaustion. I began with that tiny bit each day, then very gradually added to it. Now I can do 35–40 minutes of moderate standing exercise in front of the TV twice a day, walk a kilometre daily, and potter around the house doing chores—but it all came from those early few minutes. Don't expect progress to be linear though... you'll likely hit flares, plateaus, and good days along the way.

The improvements you’ve already seen in sensitivity, sleep, and other symptoms show your system is beginning to settle. Pain often shifts last and can feel unpredictable, but that’s your brain recalibrating and learning from your actions that there's no danger.

I'd suggest to keep your focus on small, doable bits of activity and daily life rather than closely tracking pain or other symptoms. Each moment of movement, calm, or connection tells your brain you’re safe, rewiring and calming your nervous system over time, so avoid pressuring yourself to get better as it's counter productive.

I wasn't aware of this publication during my recovery, but I essentially took the approach and suggestions as given in this imo excellent free UK NHS booklet by a medical professor who recovered from chronic fatigue himself: Body Programming Patient Guide. (My recovery now means just a few residual symptoms that are very gradually reducing.)

Some find journaling useful— @Rabscuttle's suggestion to try the SEP is a good one; the program has great journaling prompts and is free. What was huge for me was writing 'unsent letters' to express true feelings toward people from my past and the present.

If your previous bloodwork was normal, repeating it may not show anything new, but follow your instincts to reduce any doubt about the mind/body nature of your symptoms. (Forum rule: always get medically checked first.)

All I can say is that, just like pain, all of those symptoms you listed can be mind/body—and anxiety is par for the course too.

I hope something I've said helps!

 

Hi there,
These two @BloodMoon and @Rabscuttle are perfect examples of how to heal. They basically DID stuff. A little at a time. I, on the other hand, was like you until recently. All I did was work 24/7 on healing. Unfortunately, healing doesn’t work that way. What convinces your brain you are safe is living and doing things—even if it hurts. So try not to focus all your time on healing. Do some fun things. Do some little chores. Do some exercise. Read books other than TMS. Call friends. Pretend you’re fine. That will get you somewhere faster than trying to heal like it’s a school assignment. You can’t rush it by trying harder. The body and mind needs the time it needs. All you can do is try to relax and “enjoy”’the ride. If you think I’m crazy for using the word enjoy to describe what’s probably the worst thing you’ve been through in life—I’m not. At some point, you’ll realize that this great reset of your entire existence has been and is a gift. But, it takes some time to get to that point.

 

As Rabscuttle said, the first thing I'd be doing is addressing this idea. Assuming that you have been cleared of an autoimmune disorder, a hormonal disorder or peripheral nerve disease, then it's just TMS. It's "next steps for TMS" not "next steps for Fibro". Again, to reiterate what Rabscuttle said, Fibromyalgia is just a description of your symptoms, it's not a true diagnosis. Fibro means tissues/ligaments, myo means muscle and algia means pain. So someone is basically telling you that you have widespread muscle/joint/tissue pain but in Greek/Latin (you don't need to be told, you're the one experiencing it) - it's a "diagnosis" (not really because it doesn't tell you why the symptoms are occurring) of exclusion when doctors don't know about TMS.

As such, there is no nature of fibromyalgia (either it's something else, like an autoimmune disorder, or it's TMS) - it potentially makes sense to me as to why you've had success with other symptoms but not yet the pain - whilst the diagnosis may have provided comfort at the time (and legitimised your pain in a way), it's keeping you trapped here. Your symptoms are just as real and legitimate under the TMS banner as they are under the (false) fibromyalgia banner (but the fibro banner naturally carries with it inclinations that there's something wrong with your body/you structurally, whereas TMS crucially doesn't send that message, in fact it sends the opposite one), so the sooner you can drop this "diagnosis" and label the quicker you'll recover