#and I'm still questioning whether or not it's actually fibromyalgia

[genderfluidgothwitch]

For those who are unsure of whether or not they really have the "sensitivity to cold" symptom of fibromyalgia, because you think that it's just you not being able to handle colder temperatures like other people, that's one way of putting it. The other way is, when it's winter and the temperatures start dropping, do you feel your pain more intensely? Do you feel like you have more problems with your joints? Is your partner always commenting how cold your fingers and toes are, but it somehow gets more frequent in winter? Those are other ways to consider being sensitive to the cold.

[thebibliosphere]

Hey Bibliomom. So I've had CFS/ME for the past 13 years or so, and I've only just been diagnosed. My feelings on being confirmed to have an incurable disorder rather than something that is in my head(and a personal deficit that I am therefore theoretically capable of overcoming) are... Complicated. Can you recommend any support groups/groups for people trying out and reporting on the effects of various treatments? I have been taking LDN for a few months, and I've recently started on bi-weekly b12 shots. I know it's to be expected but I always feel so gutted when a new treatment doesn't just... Fix Me. I'm looking into mestonin, stellate ganglion blocks, and getting my microbiome mapped and altering my diet based on that. It's all so much money and spoons for a complete crap shoot every time. Have any particular treatments worked well for you?

Unfortunately, there is no Fix Me cure for Me/CFS, there’s just things that help and maybe increase your baseline of wellness. Chief among them, resting while in an active flare to avoid PEM (Post Exertion Malaise.). You can do all the fanciest most expensive treatments, but if you’re not resting enough to avoid PEM, you’re just throwing money away.

The jury is still out between my doctors on whether I have ME/CFS. Some say no because I got substantially better after pernicious anemia treatment and that fatigue is a symptom of Ehlers Danlos Syndrome, and what I have is chronic fatigue, not chronic fatigue syndrome.

Some of my other doctors say that’s just splitting hairs. Especially when we now know I have multiple genetic disorders that were made infinitely worse following viral infections and other physical injuries.

Either way they all agree that avoiding PEM is vital at all costs. This means tailoring my physical rehab to very specifically to not push beyond my limits. If I wake up more tired than usual, I cancel physical therapy that day because going through with it can set me back days, sometimes even weeks.

We’ve also found that stabilizing my neck through physical therapy has been beneficial, as cervical instability and things like tethered cord syndrome have also been linked to ME/CFS (Jennifer Brea is a famous example.)

I’m also being assessed this week by a neuro-eye specialist to see if there’s something wrong with my eyes that a regular eye doctor might miss, just on the off chance that a misalignment is the cause of my chronic migraines, and potentially a lot of fatigue as well.

Other than that I take a crap ton of methylated micronutrients under doctor’s orders because my body struggles with the methylation process, and also I just don’t absorb food properly thanks to the EDS and MCAS, so I’m pretty much always deficient in something. Also making sure I’m properly hydrated at all times helps. It’s amazing how crummy low electrolytes can make you feel, even when you think you are adequately hydrated.

As for groups, I find the r/cfs subreddit helpful. The r/CFSplusADHD has also been helpful, though less active. Other than that I recommend following along with the ME Action Network. They post a lot of research and can be a good way to find other people in similar situations.

And to answer your other question about mast cell stabilizers: I rotate between Cetirizine and Levocetirizine at the moment (both h1 blockers), and also Famotidine (h2) when needed. I don’t find Famotidine as effect as Ranitidine, but unfortunately, Ranitidine is still off the market due to a recall concerning product instability.

I’ve also found Ketotifen (h1 blocker) helps to reduce my fibromyalgia type pain, but unfortunately I don’t tolerate it very well and it makes my migraines worse. Same with Cromolyn Sodium. That one actually brought me out in hives when I tried the oral route, but I suspect the dosage was too high. I tolerate the eye drops though.

I also take a high dose of Vitamin D3 every day under doctor’s orders. That has really helped my mast cell symptoms over the last year. It’s amazing what being low on Vit D can cause to fuck up in your body.

Other than that it’s avoid triggers, avoid stress and get plenty of rest.

I hope that helps.

[afniel]

So, feel free to ignore this if it's too personal. I'm doing a little research for a story, and I think I remember you living with fibromyalgia. The question (if I've remembered correctly) has going on T helped with that at all?

I do and it has...kinda? I totally don’t mind talking about it. Mostly it’s helped take the edge off the fatigue. I used to have it much more extremely, to the point that if I didn’t get a midmorning nap I would be uselessly exhausted and in pain by around 10pm. I’m actually pretty functional most of the day at this point (though ADHD meds help with that too...you’d be surprised how much something like Vyvanse can manage pain). Still not enough to hold a job, but I can get household stuff done, which is great. I also feel like maybe I have less vague all-over muscle pain? I’m not sure whether to attribute that to T or Vyvanse, but I think both of them have kind of helped. Acute pain like my shitty back, that’s still what it’s been, but the diffuse full-body ache is a lot less.

Everyone’s mileage may vary, though, especially with stuff like HRT and fibromyalgia, both of which could really stand to have a lot more research done on them. @_@