ME/CFS
Outcome unclear
ME/CFS with post-exertional malaise and headaches; hot baths and Occipivot ease symptoms
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
I have had EDS flares or PEM that were triggered by intense deep tissue massage
In context ↗
Read from 9 of their posts and comments; links to the 6 this page draws on
Summary
Living with ME/CFS, they describe post-exertional malaise after intense deep tissue massage, frequent occipital and cervicogenic headaches, neck strain, and painful flares where diclofenac gel helps most. An Occipivot device relieved the occipital headaches, long hot baths were the only thing that helped much, and melatonin 3 mg worked better for sleep than diphenhydramine or Valium.
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What they tried
Also tried
Their words about each treatment
- deep tissue massage · Worse
I have had EDS flares or PEM that were triggered by intense deep tissue massage
In context ↗ - hot baths · Helped
Long, hot baths were the only thing that helped much for me
In context ↗ - Occipivot · Helped
helps SO MUCH with my occipital ridge headaches (where the spine and skull meet)
In context ↗ - benadryl (diphenhydramine) · Helped
I also have used benadryl (diphenhydramine) and Valium in the past, and have found that melatonin works better than either
In context ↗ - melatonin · Helped
have found that melatonin works better than either. However, it's a weird drug where if the dose is too high, it can be ineffective
In context ↗ - cool blast under the faucet · Helped
ending my hot bath with a cool blast under the faucet to rinse out my hair works pretty well to give me more energy too
In context ↗ - Voltaren or diclofenac gel · Helped
My best advice is Voltaren or diclofenac gel, it's a true lifesaver when I'm in a flare
In context ↗
Adverse events
- Massage“I have had EDS flares or PEM that were triggered by intense deep tissue massage” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have had EDS flares or PEM that were triggered by intense deep tissue massage
In context ↗ - Headaches & migraine
more whenever I have an occipital or cervicogenic headache
In context ↗ - Pain & fibromyalgia
it's a true lifesaver when I'm in a flare
In context ↗ - Sleep problems
I also have used benadryl (diphenhydramine) and Valium in the past, and have found that melatonin works better than either.
In context ↗