(Darden describes a long and costly but ultimately quite successful process of treating her ME/CFS/FM that ended up impacting four common factors in ME/CFS – the endocrine system (thyroid), the cardiovascular system, the autonomic nervous system and the gut .
“Today after years of struggling with debilitating fatigue and agitation I walk in a very calm, strong and stable place right down the middle of the “wired tired continuum”.
Living with Chronic Fatigue Syndrome for over 30 years I often alternated between periods of agitation and extreme fatigue – what I call the “wired tired” continuum. This precarious existence felt like I was driving a car that was slightly out of control. It required every scrap of patience, intelligence and perseverance to navigate and ultimately to discover the therapies that reversed this condition. My experience of recovery was a gradual moving together of these extreme states – a slow crawl out of hell that brought my body into balance.
Ultimately ME/CFS is about a state of physiological exhaustion
I think that Chronic Fatigue Syndrome is fundamentally a condition of exhaustion. Virtually all the enzymatic processes of the body are running in low gear. Typically persons with CFS have a low body temperature, a slow pulse and low blood pressure; and they have low levels of neurotransmitters, cortisol, amino acids, digestive enzymes and stomach acid. All of these were true for me.
Ironically when a person is this depleted they become easily agitated and lose the ability to rest and rejuvenate. Most people have experienced what this is like when they stay up for a couple of days without sleep. This may be due to a project deadline or personal crisis. They are exhausted but also feel “wired” at the same time and when there finally is time to rest they cannot sleep. People with CFS are in this state most of the time, not due to external stressors but because their bodies are always pushing up against exhaustion.
When I first became ill with chronic fatigue in 1973 I was extremely tired and had constant headaches and eyestrain, but I continued to sleep normally. Then after a couple of years I became increasingly agitated, my sleep became more fragile and I developed sensitivities to alcohol, caffeine, sugar and most drugs. My life became a balancing act of pursuing my work part time and taking care of myself.
I adopted some important relaxation skills that helped me dampen the wired state: EMG biofeedback on the muscles of my neck causing my headaches, surface temperature biofeedback to calm my cardiovascular system and alleviate night sweats, meditation, and gentle exercise including yoga and walking. I followed a strict diet devoid of stimulants, drugs and processed food. To a degree I was successful at maintaining a reasonable quality of life; however, the fatigue never abated.
Darden tried many things but all provided short term relief at best until….
Over time my situation became harder to manage and I became sensitive to more foods, including fruit. Then in 2001 my health collapsed further when I developed fibromyalgia, muscle pain, digestive issues and more disturbed sleep. I could no longer lead an active life physically and had to give up work, exercise and playing music. I only slept for 20 minutes at a stretch, I vacillated between feeling cold and hot and I rarely felt peaceful.
Throughout my illness I pursued a variety of treatments mostly in the alternative health realm since mainstream physicians had nothing to offer, believing my symptoms were “all in my head”. Among the many therapies I tried were a plethora of nutritional supplements and herbs, various forms of acupuncture, homeopathy, Ayurvedic medicine, bioidentical hormones, neurofeedback training, Nambudripad’s Allergy Elimination Technique, heavy metal detox, ozone therapy, neural therapy, pulsed electromagnetic field devices, phototherapy, Enhanced External Counterpulsation, Earthing, and Frequency Specific Microcurrent. Although I occasionally experienced some short-term improvements at the outset of these treatments, none were beneficial in the long term.
First Breakthrough: “Silent Thyroiditis”
When this occurred a certain kind of fatigue that I had struggled with for 30 years went away and never returned.
The first major breakthrough in my recovery began after an episode of “Silent Thyroiditis”, which is a period of hyperthyroidism that lasts several weeks followed by a period of hypothyroidism. Doctors do not know what causes silent thyroiditis and there is no treatment other than to ride out the roller coaster of symptoms after which one’s thyroid blood tests return to normal.
The experience led me to suspect that my thyroid function was not normal. Most of the time I had symptoms of hypothyroidism; I had a low body temperature around 97 degrees, a slow pulse of 50, and I was chronically constipated. I remember not being able to drink beverages with ice because I would get so cold I would shiver afterwards for hours. This alternated with short episodes of symptoms of hyperthyroidism when my resting pulse was around 80 and I felt hot.
Darden’s “silent thyroiditis” did not respond to a traditional approach, but a naturopath was able to resolve them
I had slightly elevated antibodies for both hypo and hyper thyroidism, but my TSH was normal. None of the endocrinologists I consulted could make a definitive diagnosis or recommendation. This was the lowest point of my health when there was no stability in my functioning. With my primary care doctor’s approval I made the decision to have a total thyroidectomy in 2003.
Following my surgery I was not able to tolerate thyroid replacement in the form of T4, which agitated my nervous system. I was able to tolerate Amour thyroid in low doses but as my thyroid blood levels approached normal my symptoms of hypothyroidism increased. I learned the reason for this after a friend found the Wilson’s Thyroid Syndrome website on the Internet.
Dr. Denis Wilson discovered that after periods of stress or trauma some individuals develop symptoms of hypothyroidism, which include low body temperature, constipation, and fatigue even though their thyroid blood levels remain normal. Basically these individuals are in a survival mode where their bodies are conserving energy.
The symptoms intensify with thyroid replacements in the form of T4 and are more severe with total thyroid replacement after a thyroid is removed. However, the condition can be reversed by taking for a period of time the active thyroid hormone T3. The T3 used is obtained from a compounding pharmacy that combines the hormone with a slow release agent and is taken twice a day at increasingly larger doses until the body temperature returns to normal or 98.6 degrees, then decreased gradually as the body “resets” its metabolism.
I was referred to a naturopathic physician in my area who had 10 years of experience in treating Wilson’s Syndrome. I weaned myself off of Amour and started taking T3, gradually increasing the amount I took to 100 mcg twice a day to achieve a body temperature of 98.6 degrees.
When this occurred a certain kind of fatigue that I had struggled with for 30 years went away and never returned. Over a period of a year and a half I needed to take less and less of T3 to maintain a healthy body temperature until I was taking 30 mcg twice a day.
I then I switched to taking T4 (75 mcg daily) as my primary source of thyroid replacement, which I tolerate beautifully in addition to a small dose of T3 (10 mcg a day). My body temperature is 98.2 degrees first thing every morning. Getting my thyroid function back to normal did not solve all my health problems but it gave me a level of stability and peace that I previously did not have.
The second breakthrough in my health recovery began in 2007 when I became a patient of Dr. Farrand Robson, a TMJ dentist in Tacoma, Washington that employs specially designed oral appliances or mouth orthotics to help patients breathe better and restore balance to the autonomic nervous system.
Second Breakthrough: Oral Systemic Balance
Previous to doing OSB I had no awareness that I had any breathing difficulties but the therapy dramatically improved the amount of air filling my abdomen and chest and I find when I am stressed or tired I breathe fuller and deeper.
The therapy, which is called Oral Systemic Balance (OSB), has established that restrictions in the air passage due to the anatomy of the tongue, mouth and throat can result in physical pain, stimulation of the sympathetic nervous system, and cardiovascular compensations. Robson uses a variety of diagnostic tools to assess a patient’s oral function including x-rays of the air passage, heart rate variability testing, oxygen saturation, and EKG that measures the electrical activity of the heart. Adjustments to the contours and position of oral appliances produce positive changes in all these measurements.
A large tongue in a small mouth was making it difficult for Darden to breath deeply and affecting her blood pressure and autonomic nervous system functioning
In my particular case, Robson told me I had a large tongue in a relatively small and narrow mouth that was restricting my air passage. He fitted me with a nighttime “balance” appliance that consists of acrylic upper and lower shelves that fit over the teeth and are connected by hardware made out of titanium with a hinge that brings my lower jaw forward. The contours to the upper and lower shelves of the appliance and the position of the hinge were adjusted over a period of several years and multiple adjustments as my body adapted to changes in anatomy.
The process was long and costly but resulted in huge improvements in the overall stability of my health. Previous to doing OSB I had no awareness that I had any breathing difficulties, but the therapy dramatically improved the amount of air filling my abdomen and chest and I find when I am stressed or tired I breathe fuller and deeper. This happens without any conscious effort on my part.
In the past year I received further improvements in my health by taking advantage of new developments in the “science” of OSB and a redesign of my appliances and contour adjustments that correspond to improvements in cardiovascular function as measured by heart ultra sound equipment. Symptoms that went away included abnormally low blood pressure and a heavy, light headed feeling that I sometimes got when I walked up a hill or stairs.
Despite the improvements from stabilizing my thyroid function and improving my breathing, I still had room for improvement in my health and suffered from adrenal exhaustion and emotional agitation. I surmised that I might have some posttraumatic injury to my brain after living in a survival state for many years.
Third Breakthrough: Rebalancing the Central Nervous System Through Low Energy Neurofeedback (LENS)
Over time my tendency to become “wired” physically when I had an emotional stimulating conversation or experience went away.
I began exploring the field of neurofeedback, first trying Zengar neurofeedback training that was not helpful and then pursuing a remarkably effective therapy called LENS or Low Energy Neurofeedback. Developed by Dr. Len Ochs, a pioneer in the biofeedback field, LENS is a unique form of EEG feedback that operates entirely differently from traditional EEG or neurofeedback training.
Treatment involves very short feedback (a few seconds per session) of the dominant frequency of the brain at a slight offset or alteration at various sites. This results in breaking up dysfunctional patterns allowing the brain to heal. The therapy is particularly effective for healing brain trauma and injury.
I began LENS treatments at Ochslabs, the LENS center in Sebastopol, California in 2009 and then followed up with a practioner in my area with weekly appointments for several years. Due to my severe sensitivities I had to start slowly with a very small amount of feedback at a large offset. This was gradually increased over time as I became more stable. A diagnostic brain map that measures electrical activity at twenty sites showed that I had some sites with abnormally high amplitude and others with low or suppressed amplitude.
Low Energy Neurofeedback helped rebalance the brain and resolve cortisol issues
These two opposites are a manifestation of the wired tired continuum in the brain. Over a period of several years of treatments I observed a gradual calming of my nervous system. Chronic symptoms of dry mouth and loose stools went away at the beginning. An interesting phenomenon that occurred for a period of several months immediately after my LENS sessions was I that had a strong aromatic taste in my mouth followed by strong smelling urine. My intuition is that this was a manifestation of some kind of detoxification. Over time my tendency to become “wired” physically when I had an emotional stimulating conversation or experience went away.
Symptoms of adrenal exhaustion both experientially and as measured by cortisol levels also resolved with LENS. Dr. Jonathan Wright, a well-known leader in the field of alternative medicine, first diagnosed me with adrenal exhaustion in 1990. I took hydrocortisone and DHEA several times but this did not produce any lasting improvements in my health. My cortisol levels as measured by saliva tests remained low for the next 20 years, but after a year and a half of LENS treatments they rose to normal levels and have stayed there since.
Mainstream endocrinologists do not recognize adrenal exhaustion as measured by saliva tests because there is nothing fundamentally wrong with the adrenal gland. What is dysfunctional is the regulation of the hormones by the brain, which LENS was able to heal in my case. I believe that LENS also restores levels of important neurotransmitters that are low in persons with chronic illness.
A recent test that I did through Pharmasan Labs showed normal levels of gaba, glycine, gluamate, histamine, PEA, Dopamine, Norepinephrine, Epinephrine, Cortisol and Melatonin. Only one marker was low: serotonin, a neurotransmitter that is produced not in the brain but in the gastrointestinal tract leading me to my fourth area of recovery.
Fourth Breakthrough: Treating Small Intestinal Bacterial Overgrowth
By 2014 my recovery was on a sure footing with no signs of relapse or return of past symptoms. My digestion however remained compromised and I still had fibromyalgia muscle pain following physical exertion. I suspected that the two might be connected and finally after more years of sleuthing and consulting many health practitioners I was diagnosed with Small Intestine Bacterial Overgrowth or SIBO. SIBO is a chronic condition of bacterial overgrowth in the small intestine. It is diagnosed with a breath test that measures the hydrogen and methane gas produced by bacteria in the small intestine.
Normally the small intestine has low numbers of bacteria and the large intestine has high numbers of bacteria; however, in SIBO bacteria exist in large numbers in the small intestine that exceed the liver’s detoxifying capacity creating a state of toxemia and causing nutritional deficiencies.
Darden is using a low specific carbohydrate diet, antibiotics and prokinetics to tackle her SIBO issues.
The treatment protocol for SIBO, which was developed by Dr. Mark Pimentel, gastroenterologist at Cedars-Sinai Medical Center in Los Angeles, California includes following a diet low in specific carbohydrates and fiber, taking specific antibiotics that reduce the number of bacteria in the small intestine, and taking a prokentic drug that stimulates gut motility which is impaired by damage to the nerves that control the migrating motor complex.
SIBO patients often suffer from symptoms of both diarrhea which is produced from hydrogen gas, and constipation which is produced from methane gas. It is common to observe during SIBO treatments a lowering of the levels of one kind of bacteria followed by an increase in the levels of another kind. This is another manifestation of dysregulation of the “wired tired continuum”.
I have been in treatment for SIBO for the past six months and have experienced an improvement in my digestion, my fibromyalgia pain, and my energy. Healing from SIBO is a process that I expect may take many more months, but I remain confident that I am on track resolving this remaining issue.
It is my opinion that Chronic Fatigue Syndrome is a condition of dysregulation of many bodily systems that have been stressed physically. Fortunately I was able to find the therapies to restore that regulation, bring my body in balance, and heal.
None of the therapies that provided the catalyst for these changes were “quick fixes”, each requiring several years of treatment but today after years of struggling with debilitating fatigue and agitation I walk in a very calm, strong and stable place right down the middle of the “wired tired continuum”.
- Check out more about Darden and find her Health Rising blogs here. Check out her blogs on FibroFriends here.
One of the best blogs I’ve read on your site so far – the author isn’t claiming any miracle cures, but a slow and painstaking process of finding out what works for her.
Nice to hear….Yes, it was good to see that Darden’s pathway through many treatments paid off……
I wonder if other treatments hitting the same areas – thyroid, adrenals, ANS and brain might have similar effects?
This is a very interesting article. I do think that most ME/CFS is triggered by a virus or viruses; and probably the genetic link has to be there. I, too, have followed many pathways, at great cost and very little benefit. I think one has to be careful about trying too many treatments, especially at once. However, I understand the need to try! If you have adrenal fatigue [I did] this should be treated; if you have thyroid disease, this should be treated. If there is a link between autoimmune disease and ME/CFS, as I suspect there may be, the autoimmune diet would be extremely important. I am happy that you have so much success.
I too have ME/CFS and I feel so fortunate that you bring these stories to us! This blog in and of itself is therapeutic. I feel better whenever I read it.
Carrie
very interested in the thyroid treatment as I have low body temp et c, However the treatment is considered potentially dangerous. http://www.thyroid.org/american-thyroid-association-statement-on-wilsons-syndrome/ and has no scientific basis
The TMJ woulf fit in with recent suggestions that clips on the ear may help, both potentially affecting a nerve.
Lots of suggestions that the gut is important, gut health is something I think we all need to consider.
Not surprised the ATA doesn’t’ support that treatment or WS. I imagine that we’re in a gray area where the studies probably simply haven’t been done.
I don’t know but I imagine they don’t support other thyroid supplementation protocols or tests used by alternative MD doctors sometimes quite successfully and other times not.
Bateman has said hypothyroidism is very common in her practice – I think about 30% of patients- some of that could very well be due to inappropriate thyroid supplementation – or it simply could be a common feature of the disorder.
Its an important and really confusing area!
One of the Best Blogs on your site. Some of the areas really relate to me. Especially the Adrenal and Thyroid. I am on T3-low dose. If I take it when I am supposed to-it makes all the difference in the world.
Was interesting also was the low Carb diet, as Now they are suggesting for Pots the high carb starch diet. and vegetable. No meat. I do find the no meat seems to make me feel lighter.
I am wondering where her original Dr. that started on the road to success
practices.
I really feel that most people want a quick fix , that is why they go to a Conventional Physician. There is none. This patient chose to do it
herself.
I admire the way she picked and chose to finish each part of the
treatment and did it with patience.
My hats off to Darden , please continue to let us know what is changing and going on.
Also makes me feel good about my Environmental Dr. here in Atlanta
that put me on Adrenal supplements and thyroid. Even though I was not really deficient.
Carole
The low fat, whole food, vegan diet is not specifically being suggested by all POTS doctors. But by my doctor and not just for POTS. But for addressing many autoimmune illness. Many virus, bacteria and Protozoa live in biofilm and fat feeds the protozoa. Fat also can be used for these pathogens to hide detection from the immune system. Those of us that are adhering to this diet along with addressing breaking down biofilms and supporting proper functioning of the immune system are getting better. This also improves circulation as biofilm adhere to vein walls and can affect vasodilation and constriction. It also can affect blood flow in that it can clog the veins.
There are different subsets of POTS some have high bps and others very low bps with standing. True that POTS people have tachycardia while not all with CFS have this issue. As pointed out in another comment – dysautonomia shows itself with different symptoms for many of us. That’s why what may work for me may be totally wrong for someone else. We know there are many subset types and different symptoms and we can’t all be treated the same way. It has surprised me that some of the docs that know “a little” about POTS think we all need compression hose, Florinef with beta blockers and tons of salt. None of which I do. And when I tried those things I got much worse.
My doc is working with a lot of different, hard to treat illnesses. One thing he has found to make a difference for all of us is DIET.
I have POTS and a very low body temp. Despite trying the protocol for Wilsons Disease with T3, I never could get my body to pull the temp up. I could not do the T3 for as long and as much as was suggested due to already having pretty severe tachycardia issues. This protocol has to be mointored closely as it can cause severe tachycardia. It’s thought the T3 doesn’t convert properly the Reverse T3. Sadly, this did not work for me. And it took me awhile to get my autonomic system to settle down after trying this.
Issie
Issie totally agree with you. Have found out from the DINET website how many different varieties and subsets there are.
Some treatments work for me FOR A WHILE-Then quit
for what ever reason. Then I have to reevaluate everything
AGAIN.
As you are, I hope everyone will be their own ADVOCATE.
ASK questions, read, every Dr. is not 100% right .
Carole
Hi Carole
I live in Atlanta and would love to have the name of your doctor. It’s so hard to find a doc that knows about CFS.
Check out this study about the efficacy of Wilson’s Syndrome
http://www.ncbi.nlm.nih.gov/pubmed?cmd=Retrieve&dopt=AbstractPlus&list_uids=16883675
”Typically persons with CFS have a low body temperature, a slow pulse and low blood pressure;” If this is true what do ME patiënts have with tachycardia or POTS is this a different group? I think it it is.
I’m not sure what you mean by “different group”. Autonomic Dysfunction includes -“-Lightheadedness or dizziness, often associated with orthostatic hypotension (abnormally low blood pressure on standing), sometimes resulting in syncope (fainting)
–Rapid heart rate or slow heart rate
–Blood pressure fluctuations”
Wikipedia, Dysautonomia
My sister and I have 100+ years combined experience in CFS. We’ve experienced fluctations in heart rate and blood pressure, rather than consistently having low, or high, bp and pulse.
All these symptoms can apply to a person with ME/CFS. I believe only the “CFS have a low body temperature, a slow pulse and low blood pressure” would apply to Darden’s set of symptoms and treatment.
Reading about Ebola has me wondering: Has anyone ever tried using a transfusion of blood plasma from someone who recovered from CFS as they do with Ebola? Maybe the antibodies would help.
Ebola is caused by a virus. It’s our opinion that CFS is not directly caused by a virus or bacteria. Rather, CFS is an autoimmune disease that often kicked into high gear when the person contracts an infection. CFS flares can also be caused by physical (exercise), emotional and/or mental stress. A recovered person, therefore, will not have any “CFS antibodies”.
My sister and I have 100+ years combined experience in CFS. It’s been our experience that CFS patients don’t recover, they go into remission.
Additionally, CFS patients should not give blood donations. Here is an excerpt from ME/CFS: A Primer for Clinical Practitioners:
6:6 Blood and Tissue Donation
The American Red Cross requires that blood donors “be healthy”, i.e., feel well and be able to per- form normal activities.[119] Since people with ME/CFS are not healthy by this definition, they should not donate blood. Furthermore, given the possibility of infectious disease transmission in patients with ME/CFS, many countries have deferred or prohibited blood and tissue donation from patients who have ever suffered from ME/CFS.[119]
While I respect you and your sister’s experience and opinions, there are some researchers who think that CFS may be a virus in the nervous tissue, like shingles. I think the verdict is still out.
Wonderful read. Thank you for your story Darden. I am curious what you do when you encounter stress now…..i.e., does your body have a tendency to revert back to its old psychoneuroendocrine/autonomic habits? If so, how do you prevent it? Up your thyroid? More biofeedback? Probiotics?
Thanks,
Simone
My symptoms do not come back when I encounter stress now.
I’m delighted for Darden…her success story is important to me as I’ve suffered with ME/CFS for 40+ years. I admire her determination, and much as I do I could never organize that level of perseverance. Just reading her story made me tired!
If Darden has listed a complete set of her ME/CFS symptoms, then (it seems to me) her fatigue was misdiagnosed as CFS. ME/CFS diagnosis has been based on a checklist, which has changed slightly over the years. If Darden has listed a complete set of her ME/CFS symptoms, then she wouldn’t have qualified for ME/CFS on any of those checklists. There is an overlapping of recognized symptoms and Darden’s symptoms, particularly in the area of autonomic dysfunction. There is a long list of diagnoses that incorporate autonomic dysfunction, however, so having a few autonomic symptoms doesn’t mean a person has ME/CFS.
While Darden obviously benefited from these treatments, I think it’s possible that only a small number of ME/CFS patients would have her exact set of symptoms. An even smaller set will have access to medical practitioners who would actually be willing to adminster these tests and treatments.
I don’t want to dampen everyone’s enthusiasm, but I do see some problems with her diagnoses and treatments.
So not a “recovery story”. The email, like others, are clickbaiting. Many people assume “improvement” on anti-biotics. Not recovered. Unsubbed.
“My experience of recovery was a gradual moving together of these extreme states – a slow crawl out of hell that brought my body into balance.”
I am always interested in reading how some people are able to overcome CFS/ME. But I do see some problems with this article…not necessarily big problems, but in particular referencing “adrenal exhaustion”…this is believed by many professionals to not be a valid medical diagnosis, and since the list of symptoms supposedly indicative of adrenal fatigue or exhaustion are “nonspecific” symptoms, it is important that people who read the article know that adrenal exhaustion is a theory without any current objective findings to show that it exists.
http://www.mayoclinic.org/diseases-conditions/addisons-disease/expert-answers/adrenal-fatigue/faq-20057906
Telling us what worked for the writer is always interesting and possibly beneficial, but it is so important to couch underlying reasons why it worked in terms like “could be” or “might be” or “some people theorize that” — the more intelligent and well-educated nonmedical writers are, the more they may write in a way that makes it sound like certain ideas and theories they write about are definitely specific entities, while the truth may be that they are not at this time recognized as such by the majority of the mainstream medical establishment. Of course this doesn’t mean there is “nothing to” these ideas and theories, but we the readers need to be able to differentiate what is proven from what is only theory at this time. I also agree with another person who commented that people who have or appear to have CFS/ME may eventually turn out to have many different types of this disorder, with different etiologies and manifestations…important to keep in mind when writing about or reading about CFS and what treatments worked or did not work for various people. Despite these observations, I did agree with many aspects of what was written and was especially interested in what the writer learned about her own problem with disordered breathing (which can have many different causes and may be difficult to diagnose), which I believe may eventually turn out to be a more common problem than is currently known.
I have had CFS- or whatever for 30 years. Immune globulin in the beginning was the only thing that helped. I tested positive for Mono, EBV, CMV , low grade temp and swollen glands. Also
boils in my groin area and armpits. I was put on a short term antibiotic. Had almost complete remission for probably 15 years.
Then the Immune globulin I was taking was sold out to another co and became generic. Ever
since then it is one hurdle after another.
The starch based plant diet has really helped me. energy and stamina better in less than a week on it-soooooooo- for now I am sticking to it. My Gut issues with Probiotics 4 much better. also my Cpap machine. If I go off or cheat on the diet to see if it is working-I have started having symptoms again.
Appreciate all the reviews. One treatment does not fit all-as we don’t all have the same disease,
just the same symptoms!!!!
Carole
Forgot to mention- Not saying it does not work, but the Dental appliance may just mean you have TMJ Temporalmandibular dysfunction. That means your bite is out of alignment and you are not chewing your food properly. Can be miserable with muscle spasms. Most people wear them at night.
This is kind of what the CPAP machine does for you in the breathing.opens up the breathing
that close when you snore or sleep on your back.
Carole
Good for you Darden. And it only took 30 years 😉
Great article and great to hear everyone’s comments in relation to the information.
Quite rightly some respondents have pointed out that many sufferers are just ‘under the same syndrome umbrella’ but suffer different symptoms etc. Perhaps it would be interesting for writers to introduce their articles with a brief history of possible causes of onset, main symptoms etc so that there could perhaps be more capability of identifying with other sufferers who are at least in the same ‘ball park’.
On another note: my daughter had chronically low body temperature for a long time. Not happy with the GP’s head scratching over the matter we tried acupuncture. One treatment and her temperature came back to normal. Has stayed normal since then (two years), it did not however do anything to increase her pulse or blood pressure to any great degree.
Good luck to everyone out there.
Linda
First of all I’m happy to hear that someone has gotten better. I commend all this persistence. What strikes me is that a disabled people has all this money to spend on such expensive therapies. Even Ayurveda is rich people’s past time. For most people, all of this is out of reach… I will stick with Chinese medicine, which is well tested, comprehensive, accessible, and relatively affordable. It explains everything and treats everything.
I also wanted to say, that if you get a Chinese diagnosis, they can pin point the syndrome and easily figure out the treatment principles. This makes it a bit less important to consider what the actual name of your disease is (I also don’t think it sounds like this person has ME). Though it’s great that people are mapping the territory through Scientific research in the West, I think there are much simpler ways of understanding what’s going on and what needs addressing.
I would also like to say that it’s not possible to have a tongue that is too large for your mouth, as an enlarged tongue according to TCM is a sign of illness and you should treat whatever it is that is causing it to be that way. Of course, this is no easy matter but the Chinese approach is systematic. To me it seems like there’s too much hit and miss within the Western systems.
I explored Traditional Chinese medicine for many years and other modalities of acupuncture as well. I never received any long term benefits from these therapies.
I was so pleased to read this. My problems started with balance disorder then led onto numerous bizarre symptoms that hit all the fibromyalgia scores. Sometimes I wondered if I had MS, or CFS or numerous other neuro disorders. Anyway, my GP hung on to FMS without further ado or referral. All the other tests are on my wish list and I have had to go it alone mostly. I have lately discovered my ferritin and Vit D are in low normal range.
Anyway, after two years of increasing pain and indescribable lack of energy, and general winding down of my metabolism…some days I would literally grind to a halt – my legs would stop working without warning, but the burning and numbing that would often accompany post exertion fatigue, and muscles that would not release etc etc was even more frightening. Stomach, heart, lungs, bowels, coordination…my hands even started to curl inwards, were all affected along with a good dollop of brain fog. The list goes on but simply put, I was terrified and my GP offered me the usual drugs which I avoided. Two years of this and I eventually begged for another thyroid test after some additional signs appeared. I’d already started reading a lot of practitioners and writers who feel that FMS is undiagnosed thyroid problems so it was always at the back of my mind. Eventually, my TSH was out of range and I was started on low dose of levo. I quickly switched to NDT but too soon to give the Levo a real chance…the NDT works anyway but UK docs do not approve.
I still cannot believe that being hypothyroid…slightly could do all the things I went through. Nor that my doctors just could not join up the dots from my numerous visits and I honestly thought my lights were going out. I dare say I have hashimoto’s which can go on undetected for years. The thyroid replacement is by no means a magic bulletand I think these things are lifelong management but the difference is I can work again as apposed to being disabled by a host of symptoms most of the time. It is my hope that anyone with FMS/CFS presentation thoroughly investigates their thyroid status.
Many thanks