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.
Please pick your top three questions
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
(1) Sleep
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.
(2) Gut
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?
(3) Neurological
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.
ME/CFS Experts Question Poll
The poll numbers don’t relate to the questions properly …needs fixing before anyone can vote.
Sigh…I changed some at the last minute. Thanks for letting me know. I fixed it.
Ta 🙂
Ooops… I see you fixed it. Thanks! We all understand 🙂
Worked fine for me Rosie.
They were in the wrong order..that’s all… so the number of the Q didn’t relate to the poll number…
I thought they were good overall questions. It would be very difficult to pare it down to 10 things. Even then, it’s hard to pick 3 of 10! Thank you!
It was hard to choose the last three for me as well.
This is by far and above one of the best sites I have found and trust me, I have searched , in 30 years, many of them. I thought the 10 questions were broken down well into 10 areas of major concern for most Fibro patients. Thanks so much for the excellent job you do….keep up the great work, keeping us well informed of things on the cutting edge.
Thanks Donna. That’s very nice of you 🙂
I do have some help for numbers 1 and 2. Finally this year my sleep is improving. I doubt it’s only the timing, and the one thing I did was begin using blue blocker glasses to sleep. My son made them, I did not buy what is on the market, but they should be about the same. I have not been taking my natural sleep meds that I used to take – melatonin and 5-HTP combo – since.
As for the gut, I began using digestive enzymes about 5 years into having ME-CFS. Digestive dysfunction was my most major problem, it’s where my original attack came from, and I was in very severe pain; doctors never found out why nor realized how bad it really was. I kept the pain at bay and pretty much solved that problem by continuing on both digestive enzymes and Betaine HCl. Not that it fixed whatever the problem source is, but helped me manage it. İn case it could help anyone else… I share.
Those are all questions I wish could be answered. Could we maximize the use of the experts and randomly give each expert 1 question? With 10 experts on the same question, there will be quite a bit of overlap with the answers.
So if we voted before you fixed it, do we need to vote again?
If you picked by the numbers and you picked one of the last five choices then email me (cortrising@gmail.com) and tell me what you’d like your picks to be
Great questions Cort. By inviting suggestions I hope you mean any questions within these questions? If 1 (sleep) is chosen, I hope they’ll address the drug xyrem. Is it safe and more available and accepted by now? 2. Can yeast be seen with a colonoscopy? 4. Are there any safe stimulants other than costly provigil and should they all be avoided along with caffeine if have a heart arrhythmia?
We all have most of these to some degree. However The Gut/Neuro and Cognitive all overlap.
The Gut issues really shuts me down completely.
Cognitive has to be the most debilitating- However Dizziness would have to be a Biggie as you can’t do anything if you feel like you are passing out.
Hard to answer .
I too wish the experts would answer all of them and give separate Answers.
I had the same idea…
I have had all that was voted on and more for 35 yrs. I checked it all. Fibromyalgia,CFS,& feel like I am drunk all the time. I faint if it’s to hot or infection that has progressed. Lot’s of pain in the neck & shoulders,Migraines & headaches everyday. Sometimes, I stare at something. Like when I read does the letters move or jump a little? Could also be staring at the mini blinds & they move without air! Sometimes worse then others. Anyone else experiences this? Plus I have diebetic 2.
Hello Danielle,
I was diagnosed with ME/CFS almost 25 years ago, and also experience all of the option choices. I frequently feel “hung over”. Although I have never fainted, I sometimes feel close to collapse when standing upright. Neck and shoulder pain in this illness is common, particularly when doing activities that involve holding one’s arms in front of the body (which covers just about everything we are required to do in daily living).
I find your comment about jumping letters and moving mini-blinds especially interesting. I experience similar perceptional anomalies — especially in the car (while driving, or as a passenger). I’ve joked to my husband that I should go out with a paper bag over my head. Because, it seems cars in adjoining lanes are all veering towards us. At my worst, I can be driving though a parking lot, and parked cars all seem to be backing out towards me! Pre-ME/CFS, I was an accomplished pianist. I’ve pretty much given up playing due to the cognitive problems. Also, when particularly fatigued, the keyboard seems to have lost several octaves and looks completely unfamiliar, and the keys appear as if they are depressing themselves — sort of like having a player piano that makes no sound. So, you are not alone.
PREGUNTA SUGERIDA . ES FCS ME UNA ENFERMEDAD AUTOINFRAMATORIA.
GRACIAS. ATTE DR FCO VICTORIA PRESIDENTE DE FIBROAMIGOS MEXICO
How about a combination of all – which is what I feel like. I hardly ever see anything about idiopathic hypersomnia (on of my dagnoses on top of FM, CFS, migraines, cervical dystonia, etc.). The relentless excessive daytime sleepiness, unrestful sleep or naps, sleep drunkenness, digestive issues, cognitive problems, and so on, are all symptoms of IH. Are any of the experts familiar with IM and how it mirrors other syndromes? Thanks.
Cort,
Have you told us who the 10 ME/CFS specialists are? Curious.
You can find them here – http://www.cortjohnson.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/ask-mecfs-fibromyalgia-expert-panel/
I’d love to have more people – particularly from different fields. It’s like we have a mind/body expert coming on board and I’d love to have a naturopath/person skilled in eastern medicine on board as well. I want diversity!
thanks, Cort. I see the list was there all along!!
This lecture summary of Prof De Meirleir in 2007 is worth a read. http://tinyurl.com/6fnwcf7
Briefly addresses treatments which may be of help for the gut, thyroid and sleep. While GcMAF is found to be helpful for some overall now too.
danielle sometimes my eyes do that too.i thought it was just me 🙂
I voted for 5 because it’s not a problem I have (yet?) and one of 2 (the other was 9) where I have no suggestions to offer help. It was a hard choice but for many of the others I wasn’t convinced they had tried the readily available remedies that can help. When people say they have “tried everything” you often find they haven’t. Last person to say that to me has had small improvements following my suggestions – and they have very severe problems and had spent a fortune on ineffective treatments.
My sleep is now pretty reasonable after increasing vitamin D, pain is helped by magnesium sulphate (epsom salts) baths and since the skin is involved I’d also suggest the NAC treatment for liver problems and perhaps something to reduce cortisol (more suggestions here http://www.psychologytoday.com/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally), yellow stools suggest fatty liver and N-acetyl-cysteine may help with that. Gut issues can be helped with pre or probiotics, possibly a gluten free diet and perhaps a digestive enzyme like Peptyzide, numbness in fingers and toes suggest a need for B vitamins, cognitive probems may respond to a gluten free diet. Excessive daytime sleepiness may be sleep apnoea – vitamin d and raising the head of the bed may help but a Continous airway pressure (CAP) machine should be considered. Viral activation may be helped by things that help the digestive system. The doctor needs to look into alternatives that help many people with these problems.
Googling suggestions this for 9 https://sites.google.com/site/naturalimmunesystemboosters/cytokine-storm
Magnesium may also help (question nr 9)
Researchers discover mechanism by which magnesium reduces cytokine production
Published 2012
http://www.news-medical.net/news/20121010/Researchers-discover-mechanism-by-which-magnesium-reduces-cytokine-production.aspx
I wish there was more consideration isolating viruses as the primary causative factor, but I know that’s an impossibility. As it’s always easy to use one’a own experience to criticize or single out something, I have to believe these permanent staying viruses are remaking havoc. I recently had a very specific immunology work up done and it turns out that I have very little memory cells for viruses. The doctors assessment of this situation was that I was only recently infected with the viruses I now have: EBV, CMV, and HSV-1. With this being said, for 34 years of my life, I was able to live a life without health problems of any kind. No sharp pains, no weird pain of any kind, no Neurological sequale, no insomnia, no eye problems, no breathing problems, no feeling of constantly passing out – nothing! I was always “stressing” about things, yet never experienced any problems. Very active and x-training athlete. Smoked on occassion and drank too. Never experienced anything like the illness I have now, despite staying away from alcohol, cigs, unhealthy food, etc.
It’s the freaking viruses!!!!
If you were only recently infected that could be a big issue. The older we are when we’re infected with these viruses the harder they are to fight off.
The sleep question right now is in the top 3. I have serious sleep problems, but did not vote for that question because it seems to mix that person’s history before getting M.E. (had insomnia since age 17 but not diagnosed with M.E. until 1987 (perhaps age 35), and is there really a problem (1993 … was the beginning of my being able to sleep at night)?
When did that person’s sleep problems begin? With M.E. or at age 17 or with Ambien? I do not know how the doctors will handle any of the questions, but that one is not cleanly a question about sleep problems associated with M.E. It seems to be a question of sleep problems from ate 17, not sleep problems due to M.E. If that question is the winner, can it be cleaned up a bit? Tell the panel of doctors when the sleep problems at issue now began? Is Ambien still being taken, and still putting the person to sleep? If a person is sleeping at night with Ambien, is that a problem?
I guess you want a question from a real patient, but I think the question should be clear enough that the doctors can reply, beyond, sorry for your lousy sleep. Maybe the question is, does sleep at night, using Ambien for 21 years, from 1993 to 2014 mean I will have other problems soon? Or perhaps I missed the real intent of the question.
Just an FYI for all who take the most highly prescribed sleep meds (Ambien, Lunesta, etc., evidence is supporting a direct correlation between consumption of these medications and incidences of cancer. Just got to scholar.google.com and use keywords – hypnotics and cancer. It takes a bit of weeding through, but there are a number of studies all pointing to that conclusion.
For me, only Ambien ER helped at all and even then I didn’t get the right cycles of sleep. As soon as I found out it was carcinogenic, I dropped it and raised my dose of melatonin to 10 mg and added two capsules of Valerian at bedtime. I also take ashwaganda (an Ayurvedic herb for better sleep and relaxation) around 6:00 pm .
This was much better than Ambien ever was but I was still waking up in the middle of the night. I was then put on trazadone 100 mg after dinner. It, added to all the rest put me into a full night’s restful sleep. I don’t say that the CFS is gone, but it was much improved. All of this together has given me much better quantity and quality of sleep than any hypnotic drug (and I tried them all) ever did.
The strength of asking 10 ‘specialists’ is that there may be a wide variety of responses. As we with ME/CFS also have a wide variety of symptoms and responses to any treatment or strategy, I would like to see all of the responders answer each question. Please.
It seems we have enough questions to be going on with for a year, and I find many of the comments on this page helpful too. We need an efficient way of sharing the benefit of our own experiences as well as those of professionals. Not sure how to do that as it could get messy.
My year of grace in 1993-4 was with Magnesium Sulphate injections, 2 ml IM about once a week. Turned on the energy like a light switch, which turned off the same way a year later. At least I know from that experience that ME/CFS is purely physical.
I really liked all of the questions. The sleep question for me would be the most interesting one to get answered and it would be great to have the different perspectives from the doctors. My issues are primarily FM related. I have a diagnoses of CFS also, but not experiencing the severe gut issues. I have tried every prescription and natural supplement that the doctors have suggested and that I have read about and they never work… They actually result in worse sleep, nightmares, the ambien was the worst, it actually made me feel disassociated from my body. I use a cpap but this does not help me sleep, just helps me breathe!
Thanks so much for all the work you do to bring us this great research. I would not know about any of this if it weren’t for this blog. Great idea about the panel of experts!
ME is terrible and all-encompassing, but can we have something other than ‘how to get good sleep’ answered please? How about severe hyperacusis and dreadfully loud tinnitus, not to mention MCS and allergies to practically everything. Let’s not waste questions to a panel of ME experts on things we can Google!
🙂 It’s up to the community to decide what they’re most interested in. However. if the sleep question is the one that gets the most votes that means sleep is off the table for the next round of questions.
I was able to get tremendous relief from this illness using a drug called Nexavir. The old name was Kutapressin. I went to one of the three discovery doctors of this drug Dr. Steinbach (now retired) you can get info on YouTube. Available at one pharmacy in Houston. By RX only. Village Compounding Pharmacy. PhRmacist Phil Phylant. Pure 200 percent pig liver extract. Very little preservatives. Very safe. Approved by FDA under a different name Kutapressin in 1939.