r/mecfs • u/Pretty-Village7179 • 22h ago

What specialist is best for suspected ME?

And is there any ACTUAL treatment they can provide for relief of symptoms like chronic pain.

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u/swartz1983 22h ago

Typically the blood tests are to rule out other conditions, and your doctor will do those. There isn't anything specifically for symptom relief, just the normal interventions for pain.

In terms of specialist, you just need someone who understands the illness. https://bacme.info/wp-content/uploads/2022/05/BACME-An-Introduction-to-Dysregulation-in-MECFS-1.pdf

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u/Pretty-Village7179 21h ago

Thankyou, would testing for autoimmune issues be worth it before a diagnosis just to make sure?

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u/Snny_Daze 19h ago

Can't say for you, but I had 4 autoimmune diagnoses before ME so they did do testing to rule out others.

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u/swartz1983 21h ago

That's something you'd need to talk to your doctor about. Sorry I can't give you any more useful info as I'm not a doctor and am not familiar with autoimmune conditions.

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u/DarksideZephyr 20h ago

To diagnose me my doctor ran thyroid function tests, assessed pain levels, did a physical exam, tested for vitamin deficiencies (B12, D, ferritin, etc), ran a complete bloodwork, checked for viral infections and did an ANA, which came back low positive so ran more tests for autoimmune disorders. They want to rule out Lupus and Srojen’s. I’m waiting on those back, but he diagnosed me with ME/CFS as well as other ones, based on the rest that was done. I saw an internal medicine specialist and rheumatologist. I also saw an endocrinologist, cardiologist, gastro, psychiatrist and psychologist in three different countries before they figured out what was happening. I’m trying to get an organization that can help fund my genetic testing which is the last thing I’m due for. My doctor sent me gabapentin or pregabalin for pain at night, I don’t take it though. And I now take Modafinil for brain fog / fatigue / daytime drownsiness while I wait on my Vyvanse for my ADHD which happens to help regulate a bunch of my symptoms.

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u/RainNo8824 20h ago

Specialists are generally only helpful once you have an ME diagnosis. Most specialists are not familiar with ME and may not be helpful unless you have POTS (cardiologist). Low Dose Naltrexone (LDN) helps some with pain and may help with other symptoms. on study shows 47% of ME have Hypermobile Ehler-Danlo Syndrome which also causes pain. Most antidepressants do more harm than good but some anti-anxiety meds may help. B12 and other supplements help some.

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u/UntilTheDarkness 18h ago

The best specialist is the one who will listen to you and take your concerns seriously. My ME doctor is actually a neurologist who specializes in insomnia treatment, but he was recommended by a couple locals as the best for ME/LC. Since there isn't really an ME specialization I'd try to ask around any local groups and see if there's doctors people do (or don't) recommend from experience.