Share What Works For You

This question has been around for a while. Early humans were said to resort to ‘healing’ when sick, which includes the use of herbs, earth and other elements along with rituals. Then the Romans introduced ‘medicine’ as we know it, or today’s conventional pharmacology (also called traditional medicine). Modalities in the East like acupuncture, reflexology and other non-conventional medications and supplementations, brought complementary alternative medicine to our attention, especially to address illnesses that conventional medicine has so far no answers for, like rare and orphan diseases. Today’s buzz in the medical community is a patient-centric practice called integrative medicine where a team discusses with a patient not only healing and medication but also lifestyle changes, attitude and even spirituality that seem to work from the patient’s experience and point of view.

The last thing we want to hear from a caregiver is that there is no cure for our rare condition or that it will take a while for scientists to come up with solutions. I know there are a lot out there who are willing to try anything within reason to find effective relief, even treatment.

Some people put their faith in pharmaceuticals because they're better researched, while others are more comfortable sticking to natural treatments like supplements, even types of food like dark chocolate (for pain). Some take a combination of drugs and supplements (along with other treatments) to get significant relief.

How about you? What medications and supplements – even therapies – have worked for you? Which ones have you abandoned?

I'm too new to this to post anything earth-shatteringly helpful. However, some of the things that seem to work are:

Rest when my body tells me to

Swimming

Diet: Eliminate gluten, limit sugars, limit red meat, eliminate caffeine, plenty of fresh raw fruits and veggies

keep moving (when the fatigue is not overwhelming)

Sounds just as great as everyone else DMarmaJade! That's the beauty of this community - we strive to share and learn from each other. That's what support is all about.

DMaraJade said:

I'm too new to this to post anything earth-shatteringly helpful. However, some of the things that seem to work are:

Rest when my body tells me to

Swimming

Diet: Eliminate gluten, limit sugars, limit red meat, eliminate caffeine, plenty of fresh raw fruits and veggies

keep moving (when the fatigue is not overwhelming)