The ten practitioners from Health Rising’s ME/CFS and FM Experts Panel has agreed to answer one question a month from the Chronic Fatigue Syndrome/Fibromyalgia community. We got about 50 questions and I winnowed them down to nine. (It wasn’t easy)
- Find out more about Health Rising’s ME/CFS and FM Experts Panel.
I was looking for questions that might have application to a broad group of people and that provided a good amount of information.
Questions that were very basic (what is the right approach to treating ME/CFS or FM?), that were very specialized (why are my hands shaking?), that contained too many questions for the doctors to answer (please tell how to treat x,y and z) or that asked questions about research, how to find a doctor in a specific location and the like didn’t make the cut.
Please use the poll at the end of the list of questions to pick the top three questions you’d like to see answered. The nine ME/CFS practitioners will answer the question that gets the most votes.
Suggestions are welcome.
If you’ve been in a similar situation as one of the nine and have some ideas please offer them.
The Potential Questions for April – Please Pick Three of the Nine
I have had insomnia since age 17. I am now 62. I lived for decades as a zombie from lack of sleep and my health (immune system) deteriorated.
I developed fibromyalgia in 1982 and CFS in 1987. In 1993, a kind doctor prescribed Ambien 10 mg, and that was the beginning of my being able to sleep at night. Although I am thankful for meds that help me sleep (most nights), I do not get the kind of sleep a normal person does – or like I had before the sleep disorder began.
Is there any way that I can get my sleep function back? I have tried weaning from meds, but it has been disastrous. With life’s responsibilities, I can’t afford to be out of commission.
My CFS started with a bad GI infection. I was homebound and bedbound for 7 years, but started to get better when I did an extensive candida and nutritional protocol. Colonics have helped me tremendously over the years. I have improved, but continue to struggle with bad toxicity which I assume is gut related.
I tend to have yellow stools a lot, so I am wondering if I am dealing with some underlying gut infection. I am recently working with a nutritionist to use bentonite clay internally to absorb toxins, and have felt better. I really feel my lack of improvement is due to the toxicity I am constantly dealing with, which colemas at home, and the bentonite help.
I am at a loss as to what to do since the only thing that ever shows up on a stool test is yeast. I am at a loss how to heal my gut and not be so darn toxic. I also have lots of overall weakness, and some chemical sensitivities.
What tests do you recommend to assess gut problems and how do you recommend that someone with ME/CFS rebuild their gut? Do you think fecal transplants can help?
My disease in the past 10 years has increased to the point I can’t work, am in bed 80% of the time, my feet and toes are numb all the time with little needles stabbing 24/7, its getting harder to just walk even. There has been no relief.
My doctors tell me to deal with it and prescribe antidepressants. (I’m not depressed). Where do I go from here?I’ve been on pretty much every RX they could throw at me from antidepressants, anti anxiety, pain, anti-inflammatory, mood stabilizers, anti-nausea, and so on so on. Now I can’t even get proper pain relief because doctors assume I’ll become addicted.
What do I do now?
(4) Cognitive Problems and Sleepiness
I suffer from cognitive impairment (confusion, issues with recall, memory, attention span) and excessive daytime sleepiness (EDS). I’ve tried CNS stimulants and they haven’t helped at all. Do you have any suggestions?
(5) Sensory Overload
I have quite severe sensory overload that sometimes I think are more disabling than my fatigue. I wear earplugs all day long and my shades and blinds are drawn in the house constantly. I have to wear dark glasses outside and minimize my time outside
I tried Klonopin and ended up with suicidal ideation five hours after the first 0.25 mg dose. (So that’s not an option.) Being around people is extraordinarily difficult. I had two people here recently even being 30 feet away their conversation was intolerable.
Once I have a sensory overload situation ramp up it takes days or weeks to settle even with all the medication. Surprisingly, trazodone seems quite helpful. One thing recently I have found that helps is to steal a 10 mg crumb from my trazodone dose for the night coming up, and take it early. This at least takes the edge off things.
I realize the dose of trazodone I’m on is insane for a CFS person but the Remeron seems to minimize the orthostatic effects and I also have difficult to treat depression which the trazodone helps with.
I have tried slow graded exposure and had some small success but then had a big crash and lost everything. Overall I would say things are better than they were a year ago but it’s still incredibly disabling.
(6) Neuropathic Pain and Hormones
I have had ME for 44 years.
Other than a very very badly medicated crash-within-a-crash in 2004 (I have been mainly housebound since 1994) the worst aspect of this disease is hitting me now: very severe neuropathic pain of the skin (allodynia) which is body-wide. I see a neurologist and am only able to take the level of meds I’m presently on. No point in suggesting any supplements. I’ve tried them all and they make the situation worse.
Given this pain has coincided with menopause (which has also coincided with newly emerging and severe allergies to cat and wool) can I expect to have any natural amelioration of this symptom when menopause eventually settles down? Is neuropathic pain hormonally regulated?
How do you suggest I treat the allodynia? ( I have tried HRT twice before to a) no benefit and b) definite detriment.)
(7) A Family Practice Doctor Asks …
I was originally diagnosed with RA. I tracked a sequential worsening of my illness after vaccines (I’m a family practice doc). I self diagnosed myself with ME last year and had a horrendous set back last year after a febrile viral illness.
What can I do to further refine my diagnosis and treatment options? (Her RA panel, viral panel, c-reactive protein, thyroid panel and everything else is normal except for chronically low WBC, low testosterone, DHEA, IGF-1. SED rate – 0, ) How do you keep from losing your mind when formerly a fit, hyperactive, go getter kind of person and you can’t even work a few hours a week without serious consequences?
(8) Viral Activation
The fatigue, pain and muscle spasms are unrelenting! I was diagnosed May 2011 and have EBV and CMV reactivation. I seem to be getting worse instead of better. I am easily stressed by the smallest situation. I know EBV is a stress activated virus, I was never easily stressed before my diagnosis. It has gotten worse in the past year.
My Naturopath takes my pulses prior to an acupuncture treatment and sometimes my immune system is barely functioning and other times it is hyperactive fighting the viruses. My rheumatologist just seems to want to keep me on the Acyclovir saying it could take years to work. I am very discouraged. And I have gained so much weight due to being inactive and unable to exercise.
What do you suggest?
(9) Sky-High Immune Activation
I’ve had CFS for 30 years. According to my doctor, my cytokine levels are “astronomically high”. For over 2 years I’ve been having severe neurological problems, and sometimes go into a semi-coma for several hours. Does any physician know how to lower my cytokine levels.
I went, on referral, to UCSF to consult with a neurologist. He ordered an MRI, MRA and a DAT scan. Everything came out normal. I’m getting quite desperate (but not suicidal) to solve this severe problem, as I’m becoming more and more non-functional.
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.