17 Years Under the Care of a Naturopath Doctor for Fibromyalgia
My purpose in sharing my experiences with a Naturopath doctor is to inform and empower all sufferers of FM & ME/CFS in not ever giving up hope. As we wait for the cure, my experience is that I’ve found many treatments available that have greatly improved my quality of life.
Edith shares what’s helped her in her long journey with fibromyalgia
Before I begin, you should know that most people will have to pay out of pocket for most tests and treatments prescribed by a Naturopath Doctor unless your health insurer specifically covers them. My insurance covered about $500 a year. There may be a way to get around this problem however. There are M.D.’s that have become Integrative Practitioners (combining both regular and natural medicine) so you may be covered.
Beginnings
My fibromyalgia started 20 years ago on Valentine’s day after a spinal injury. Within a few months I felt tingling across the bottom of my face, my arms and then my legs. That tingling soon changed to excruciating pain and I was waking up in the morning absolutely exhausted. About a year later I contracted an enterovirus and pretty well lost the rest of my health at that point. Besides the fatigue and pain I had irritable bowel problems, my memory was shot and I was on Gravol (Dimenhydrinate) medication (used for car sickness) because of severe nausea. I was in bed much of the time.
My SED rate was high (a sign of inflammation) and the multiple tender points in my upper back lead medical doctor to suspect polymyalgia or fibromyalgia. After two specialists agreed I had fibromyalgia, I had a diagnosis within 2 years.
When it became obvious that my MD did not know how to treat this strange illness (although he did have me on pain medication -thank goodness!) I started to research.
Dr. Teitelbaum’s Fatigued to Fantastic book started Edith on her road to find a naturopathic doctor
Becoming a member of a FM support group with a fairly good library (for that time) was the beginning of a long education on FM & ME/CFS that continues to this day. (When I told my MD about the library, he asked me to see if I could find anything on medicines to treat FM. He then added sleep medications and an anti-inflammatory, which made my life a lot more bearable.)
Whenever I had a half decent day, I was in book stores buying any books I could find on FM & CFS and they were rare back then. The most interesting one was “From Fatigued to Fantastic” by Dr. Jacob Teitelbaum. I noticed that he was using some natural treatments along with regular meds. His book was the spark that eventually led me to seek out a naturopathic doctor. (Dr. Teitelbaum’s new book is “The Fatigue and Fibromyalgia Solution”. This amazing book has information and treatments gained from his years of practice treating FM & ME/CFS patients. I bought one for my M.D. as well. )
I had put myself on a multivitamin plus extra vitamin C and B and I felt somewhat better, but I needed more direction. I came across a lady I knew at the grocery store one day and remarked to her how great she looked, so she told me about a Naturopath doctor she had been seeing for stomach problem. I took his name down. I’m a big believer in “there’s no such things as coincidences”, and before too long I phoned for an appointment to see this ND. Long before I arrived for my first visit, I had developed 2 sores on the corners of my mouth, for which my MD had tried 2 different creams on, to no avail.
VISIT NO 1
Digestive Enzymes
I filled out the usual first visit health questionnaire, and we shook hands as I entered his office. The first thing he said to me was “the sores that you have on your mouth tells me that you have vitamin B deficiencies”. I reply “but I’ve been on B vitamins for quite a while already”. He said “then you are not digesting your food properly and will need to take digestive enzymes”. He then hands me a bottle of Panplex 2 Phase by Integrative Therapeutics and tells me to use one or two per meal depending on the size, and make sure I chew my food well.
(I can buy them from him or anywhere else I choose, so I bought the first bottle of 90 from him and later I found one that has 180 on a website. They are not available in health food stores. I just checked Integrative therapeutics in Canada; their website says that their products are only available from professionals, meaning like my naturopathic doctor. Sangsters in Canada has a good one also called Mega Digestive Enzymes, and there may be other good ones out there that I have not tried.
Back to my ND’s office. He draws blood samples from me and tells me that the results will be back in time for my next visit. He also tells me not to have any kind of scent on me like whenever I come to his office. I understand immediately that he must have patients that have chemical sensitivities.
Visit #2
I’m back at my ND’s office for my second visit and my first lab tests are back. I’ve been diagnosed with a bacteria called Klebsiella pneumoniae and at the end of the report it says that it is most likely caught in hospital. I had a bad flu a while back and my MD had hospitalized me because of low blood pressure. I felt like “death warmed over” and looked like it too.
So what came first, the chicken or the egg? Researching Klebsiella indicates that people with suppressed immune systems are at risk. My mother had been prone to all kinds of nasty things. She had TB around the age of 20 and polio when I was 13. She recovered completely, though. I can remember the doctor coming to our house and injecting us with the first polio vaccine.
An herbal preparation was used to fight a bacterial infection
We have no doubt that she had a compromised immune system and today four of us have serious illnesses. The sister before me also has FM, a younger brother has an autoimmune connective tissue disease and is only one drug away from needing a lung transplant and my youngest sister has a rare illness that involves a lot of arthralgia pain. Today, we are all doing well thanks to terrific MD’s, NDs and supplements and life-saving medications.
I’m not surprised to see the recent research on FM & ME/CFS pointing to immune system problems. In fact the last specialist I saw told me it was showing up.
To treat the enterovirus, my ND gives me a herbal preparation to take, and I’m soon feeling a bit better. He did not use an antibiotic! Another blood test has come back saying that I can’t tolerate dairy or sugar, so I’m told to eliminate them from my diet. Oh boy! That’s going to be hard.
My ND then hands me a stool test kit to do at home, and when done, mail it in a self-addressed envelope off to a lab whose accuracy he trusts.
The Special Diet
My stool test shows that I have a serious overgrowth of yeast. I’m not surprised as I had white spots in my mouth and I was sniffling all the time trying to breathe. My ND gives me a special herb preparation to help kill the “beasties” as I’ve heard them called before. Then comes the hard part “THE SPECIAL DIET”.
- No SUGAR,
- NO FRUIT,
- NO JUICE,
- NO YEAST BREAD,
- NO JAM, HONEY, SYRUPS.
Not too interesting for a sugar addict! I so desperately want to get better though and I surprise myself by not cheating even once in the 4 months I was on the diet. I’m made of stronger stuff, than I ever thought I was. (Thank GOD for the baking powder biscuits and shredded soya cheese.) I found that before long my cravings were gone and I lost a few pounds. Thumbs up!
It took me a few years, but I’ve learned to finally eat a good breakfast every day. I had spent many year not eating till lunch. When I’m headed for the city which is 45 minutes away, I eat a 4 egg omelet and I’m good for about 6 hours till I get home again. The eggs are jumbo. The minute I add even 12 grain bread, I will lose a lot of my energy. The eggs add lots of cholesterol I know, but I only eat that many eggs for that trip only, and it doesn’t happen very often. (I also will cancel my trip if I did not get a real good night’s sleep. If you have FM or ME/CFS you know what I mean.)
Probiotics
Back to my ND. He also gives me a bottle of probiotics to help replenish the good bacteria in my stomach. It has to be kept in the refrigerator and I find that I’m forgetting to take it a lot of days. On a trip to my health food store, I spotted a new display of a probiotics that did not have to be kept in the fridge, so I bought one. I noticed almost right away that my mouth was not sensitive anymore, so I told my ND about how well it worked and discontinued his. The name of this product is Flora Smart by Renew For Life. It comes in different strengths. I’m on a maintenance dose of 6 billion a day now.
Healing Edith’s gut was a prime focus.
I have also added a “green” food mixture because of my problems with digestion. Again it stays in the fridge and I often forget to take it. Lately, I discovered another Garden of Life super green formula called “Perfect Food”, and it says just to keep in a cool dry place. I use a lot of Garden of Life products because they include enzymes and probiotics for easy digestion. There may be other health food companies doing the same thing. (Health foods are not regulated so beware of what you’re buying. You can google www.multivitaminguide.org. You’ll be surprised to see the lowest rated.)
I almost forgot to tell you, MY NAUSEA IS GONE and I am feeling a lot better overall.
A few years ago, I read a book written by Jordan Rubin (Patient Health Thyself) about him almost dying of Crohn’s disease. He recovered with the help of homeostatic soil organisms. He developed his own probiotic called Primal Defense (by Garden of Life).
What this product does, in plain language, is it returns your stools back to normal. You can take up to 3 a day. I only need 1 a day. Start with just one and see how it goes for a few days. Once you’ve reached the right dose, don’t go any higher because you’ll get constipated.
People who are always looking for a bathroom wherever they go or don’t take the chance to even go out anywhere, will love this product! While we’re on the subject of supplements, I don’t have a stake in any products I talk about (I wish). I am on the Primal Defense Ultra now.
Visit #4
I have now been cleared of the enterovirus and the overgrowth of yeast. The digestive enzymes are working super well, as I no longer have stomach cramps and the sores on the corners of my mouth have disappeared. I remain off all added sugars and dairy products, and my colon spasms are gone!!!
I just can’t thank my new naturopathic doctor enough for the excellent care so far.
Thyroid
I’m still feeling tired, though, and I report to him that I’m always cold, I’m losing some hair, my nails are cracking and my eyes look washed out. He had observed most of those symptoms before I even mentioned them and had suspected thyroid problems. He had already planned the next course of action even before I came through his door.
With my lab test results showing a low normal reading of TSH my MD had not seen a reason for thyroid medication. My Naturopath however gives me the following instructions: Take a mercury thermometer and place it under your arm pit every morning before you get up. Then take your temperature three more times three hours apart (for example at 6, 9, 12 and 3pm. Keep a chart every day of all readings. Add the last three temps, and divide by three to get your average and record that also. Do that for 14 days and bring the chart to your doctor. When I did that, he could see that my temperature was running too low.
He used T3 to bring up my body temperature and I had to cycle up and down on it several times until my temperature stayed normal. T4 circulates in the body ready to change into T3, the active form. My problem was that my body could not convert T4 into T3, even though my TSH was normal. That is the reason that I was hypothyroid. When I was able to keep my temperature at normal, my ND. took me off T3. My energy soared, I quit losing hair, my nails got strong and the spark returned to my eyes. I felt alive again!
Her thyroid looked fine to her MD but her ND diagnosed thyroid dysfunction and Edith improved
I remember another woman writing to Cort with the same problem, and had been diagnosed with ME/CFS. After 6 years like this, she completely recovered with this same T3 method. HOW MANY PEOPLE ARE OUT THERE LINGERING MOSTLY IN BED WITH THE SAME UNTREATED THYROID PROBLEM! It makes me so sad to even think about it.
This thyroid condition is called Wilson’s Syndrome. DR. Teitelbaum writes about it and other thyroid problems in his book The Fibromyalgia and Fatigue Solution. (As you know I think this is a must have book for everyone who has FM & ME/CFS.)
I spent many good years without thyroid problems, but two years ago they showed up again. This time my Naturopath Doctor could not get the T3, so he put me on BMR, which DR. Teitelbaum also talks about in his book on page 282, and on page 91, he writes “The main blood test, called TSH is grossly unreliable in the presence of hypothalamic dysfunction” which many people with FM and ME/CFS have.
My ND. also gave me some information from a newsletter by Dr. David Brownstein MD., a practitioner of Holistic medicine, with more interesting things to say about thyroid problems. (The hormone T4 is called thyroxine and T3 is triiodothyronine.)
- Next up – Edith discovers her most helpful treatment
A very interesting account and I’m glad Edith found relief. My SED rate is near 0, though, and exhaustive blood work ups a few years ago show …nothing, classic fibro. Another data point for me suggesting multiple subtypes of FM. Dr. Teitelbaum…sorry, bologna IMO. I can’t rule out the gut guy entirely but we tried wtf everything for my son’s Crohn’s 20 years ago and nothing worked but the phase 3 clinical trial of Remicade. Big Pharma, not beloved by any of us, occasionally saves lives. As Cort wrote a while back, gut microbes are big now, who knows? My pretty comprehensive daily probiotic may be doing things but helping fibro isn’t one of them, unfortunately.
Hi Steve, Dr. Jacob Teitelbaum MD. is a premier expert in the knowledge and treatment of FM & ME/CFS in the USA and is well known and respected here in Canada. He developed ME/CFS while still in medical school and then devoted his whole medical career to us that suffer from these illnesses. For anyone who wants to learn more about him, go to http://www.endfatigue.com.
I too have FMS plus ulcerative colitis among other auto-immune diseases. Was wondering if you tried low dose naltrexone for your son with Crohn’s… it has put my UC in remission and I’ve never felt better. It’s not talked about much for IBD but it WORKS!
Thanks for your suggestion. My son was on Remicade for 15 years, now Humira for five, both tough meds for him but nothing worked but prednisone for two years. Knock wood, Humira every week is working so he won’t try anything else unless it fails. I have mentioned LDN, at this point he guides his own treatment.
Thanks for sharing your story. I bet I’m not alone in saying there are several similarities in yours I can relate to.
One thing I never heard of, though, is the T3 substitute, BMR. What is that & where does one find it?
Thanks!
Does anyone know what is a too low body temperature?
Hi David, It has been so long since I was on T3 and I can’t remember the base temperature that warrants treatment, but I’ll phone my ND’s office and ask. If he’s not on holidays I should have the answer next week and will post it. Edith
Hi David, My ND. is reticent in providing one specific number, as there are many other signs and symptom accounts from the patient, as well as lab. tests etc. that need to be considered altogether, in order to come to a proper diagnosis of a particular thyroid disfunction, and the treatment course to take. He suggests to go to: http://www.wilsonsyndrome.com, for more information.
IMO, if any of this works you don’t have Fibro. Or you may have Fibro with co-morbids. Ease or resolve the co-morbid issues and you will take the load off of Fibro but you will still have Fibro.
I’m pretty sure Edith meet the criteria for fibro. She had widespread body pain, sleep issues, fibro-fog plus she had gut issues – common in FM: that’s basically the criteria for FM.
Some people do assert that you don’t have “X” if you get better using “Y” but I think that’s putting the cart before the horse. For instance if you got really, really sick but got better using “X” some people say you didn’t have ME! (As if we can define ME other than symptomatically at this point.)
If she met the criteria for fibro – I would say she had fibro. I would also say that she had a certain kind of fibro and other people have different kinds of fibro and it’s a heterogeneous disease.
Thank you for sharing this important and interesting journey. I began thinking about gut microbes and diet and realized that we can probably change the balance of the entire gut microflora with diet. Hmmm. Since the gut organisms play such an important role in the immune system, breakdown of complex carbohydrates, availability of vitamins, protection from pathogenic organisms, etc this becomes extremely important.
My history of spinal trauma is similar . The function of my GI tract never returned to normal. So thanks for making me think of gut bacteria/ balance. Anything that gives us some help is certainly worthwhile trying!!
Just for clarification – Klebsiella is a bacterium, not a virus 🙂
Hi Merida, I checked my records, and you’re right about klebsiella being a bacteria. I’ve asked Cort to print a correction in part 2 of my story coming up soon. Thanks for pointing that out.
Hi Serenebeth BMR is a thyroid glandular which supports normal thyroid function. The BMR that I’m on is from NaturPharm, but I can only buy it from my ND. Dr. Jacob Teitelbaum has a similar BMR on his website at a very reasonable price. http://www.endfatigue.com This product is made by Integrative Therapeutics which I believe to be a reputable co. as my ND. uses some of their products. Dr. Teitelbaum is a premier expert on FM ME/CFS in the USA. He got ME/CFS while in medical school and has devoted his whole life on the education and also treatment of hundreds of us who have these most difficult illnesses.
An elevated SED rate is not considered typical of fibromyalgia. Instead an elevated SED rate would tend to point toward a diagnosis other than fibromyalgia.
“The erythrocyte sedimentation rate (ESR) is often recommended as a routine laboratory test in fibromyalgia patients to rule out the presence of inflammatory disorders that may mimic symptoms. While the ESR is usually normal in patients with fibromyalgia, it is a nonspecific measure of inflammation and mild elevations may not be meaningful. The upper limit of normal for the ESR in women is half their age (eg, a level of 40 in an 80-year-old women is normal),and in men is half their age minus 10. The ESR can also be mildly elevated in obese patients. However, a high ESR may be indicative of an inflammatory disorder or occult malignancy that should be thoroughly evaluated.”
http://emedicine.medscape.com/article/329838-workup
Also I would like to mention that Wilson’s syndrome is not a proven medical diagnosis:
“Wilson’s (temperature) syndrome, also called Wilson’s thyroid syndrome or WTS, is an alternative medicine concept which is not recognized as a medical condition by evidence-based medicine.
Wilson’s temperature syndrome – Wikipedia, the free …
https://en.wikipedia.org/wiki/Wilson's_temperature_syndromeWikipedia”
(I do understand that those of us who do not find help within the mainstream medical community are often looking elsewhere, as with naturopaths, for answers, and that help may be found there, but I do believe it is important to keep facts very clear and to be aware of what is and is not proven.)
I do not mean to be overly critical,though, and found this to be a very interesting account and am thinking of trying some of the ideas presented.
Good points Lorrie and thanks for pointing them out.
Wilson’s Disease is not an accepted diagnosis in most of the medical community. Edith’s is the second story on Health Rising in which a thyroid dysfunction was diagnosed and successfully treated using the Wilson Syndrome paradigm.
That makes Wilson’s Syndrome interesting in my book and something to think about – but as you note, not proven. 🙂 Of course that’s not that uncommon when you’re talking about alternative approaches to FM and ME/CFS.
I agree that an elevated SED rate is not commonly found in FM or ME/CFS. My SED rate for instance has always been on the low side. I imagine, though, that there is a subset of FM patients with mildly elevated SED rates.
Unfortunately, not much is proven for FMS, and there is a huge spectrum of symptoms – all on a continuum. The defining diagnostic criteria is 11 or 12 out of 18 tender points. Well, a rheumatologist found 15 tender points years ago, but now only 3 for me. Does that mean I no longer have the disorder , despite the fact that I have nearly every symptom on the FM and CFS ‘list?’
In “The Fibromyalgia Syndrome: A Clinical Case Definition for Practitioners” edited by I Jon Russell, MD, PhD, there is this comment, ” The increased association of FMS with other inflammatory disorders such as systemic lupus erythematous, rheumatoid arthritis, and Sjögren’s syndrome is well recognized.” This statement is made in the chapter by Jain et al (13 MDs) titled Fibromyalgia Syndrome: Canadian Clinical Working Case Definition, Diagnostic and Treatment Protocols- A Consensus Document.
I see an immunologist, and he keeps tab on this mess. Various inflammatory markers go up and down- tumor necrosis factor alpha, various interleukins, and so on. Yuk.
So interesting Merida – I didn’t know this:
The increased association of FMS with other inflammatory disorders such as systemic lupus erythematous, rheumatoid arthritis, and Sjögren’s syndrome is well recognized.
I knew it about RA but not lupus. I might have guessed Sjogren’s….This is a slippery disease with lots of connections…
The problem with the words “associated with”, of course, is that it is not clear what exactly this means. For example, many people who have the hereditary connective tissue disorder Ehlers danlos syndrome (EDS) are along the way misdiagnosed as having fibromyalgia or lupus, or other conditions…but then it may not be entirely clear whether these other diagnoses WERE misdiagnoses as opposed to comorbidities. Some specialists consider a fibromyalgia diagnosis in someone with EDS to be a misdiagnosis, while I know of one orthopedist who says “all people with EDS have fibromyalgia”.
I often wonder if fibromyalgia and CFS may both be symptom complexes with many different causative etiologies. So that my “brand” of CFS may look exactly like someone else’s in many respects, yet the cause(s) in each of us may be entirely different.
Not to get too far afield from the topic here, I do think that the treatments, whether mainstream or alternative, may help in many cases regardless of exact cause. Which is a good thing.
Hi Merida. Re: your 2 posts. Using quality digestive enzymes such as Panplex 2 Phase and staying away from the food that bothered me stopped the painful colon spasms. It wasn’t till I started on Primal Defense that my irritable bowel resolved. It’s from Garden of Life. I do not suffer any more from the cycle of diarrhea/constipation anymore. I must do all the above steps to maintain this complete colon wellness. The only time I have a problem is when I’ve picked up the flu. When the flu is over, I return to normal.
As to the tender points in FM, I recently read, somewhere, that they are not that necessary anymore to the diagnosis. They go more by other symptoms such as the sleep disorder, history of chronic pain, irritable bowel and brain fog, etc. Perhaps someone else has read this, and can tell us where to find the information.
I was very surprised to read, awhile ago, that FM was not inflammatory. I was diagnosed a third time with FM by a professor of rheumatology, ten years ago. After doing new tests. she said that autoimmune was showing up, but did not offer a new diagnosis. I have some Eczema on my finger joints and had psoriasis on my elbows which have resolved. I also think that I have too much inflammation going on. I will get my MD. to check my sediment rate again and if high, ask for a referral to another rheumatologist.
Edith,
I’m always both envious and cynical when I hear of FM cures. My first thought is always, cui bono, does someone requires scads of tests and make money from them? Does he sell supplements or charge zillions $ for appts? Thirty per cent of people will get better with a placebo for anything. My take on JT’s book, which I read, seemed to me that if you throw enough mud at enough different wall surfaces, some will stick somewhere. Lucky people. Cort has had enough theorists write here to make me cynical of an FM guru…gut problems, thyroid problems, immune problems, small fibre neuropathy, large fibre neuropathy, trace mineral deficiency, etc., etc. JT is not the go-to guy here in U.S., not sure there is one but I’m restarting my search and prioritizing for FM treatments as my condition worsens and I reluctantly take my recently prescribed 50 mg Tramadol, with bad side effects and erratic pain relief. I’m glad for anyone who gets relief from this life changing disorder.
Hi again Steve. I hear you. FM & ME/CFS are miserable illness to have! I have been on Tramadol 50mgs for years and it has not lost it’s effectiveness. It has this weird side effect, that for the first half hour, it accentuated my pain level. I read a few years ago that adding Tylenol extra strength to it solves that problem. I can tell you that it worked for me. I use acetaminophen rapid release instead of Tylenol which is very inexpensive. You can buy both at Costco and the end price is 9 cents, and you don’t need a membership to buy at their pharmacy. I cannot buy Tramadol 50mgs in Canada. The only one that comes close is Tamacet which contains 2/3 Tramadol an 2/3 Tylenol and I pay a whopping 70 cents a pill. Needles to say, I’m not happy about that. If you end up taking a lot of Tylenol or the no name brand, ask your MD. for a liver test, as too much can be toxic.
Before Tramadol, I was on Tylenol #3, but after awhile it lost it’s effectiveness. Then my MD. prescribed Oxycodone and the same thing happened, so thank goodness for Tramadol. Tramadol 100mgs all day release is available here, but I could not tolerate that high of a dose.
Good luck in your research and let us know if you find some gems that help.
Edith, we have to stop meeting like this Lol!
I’ve only taken Tramadol for about ten days, was not big on taking an opiate but no choice. Have heard acetaminophen enhances effect but yours is first personal anecdote to verify. Will give it a try though I have a few Tramadol side effects and also don’t want to get dependent. FM has taken over my life in a big way, though, after just being a painful nuisance for much of my life. GLTA.
I’m always behind the game reading Cort’s articles. Wow! This is SO interesting, Edith! I’m really happy for you that you and your health care providers have dealt with many of your underlying health issues with, if not 100% success, then often close to it. Sure, each of us have individually unique symptoms and solutions (or not!) even if we share the diagnosis of fibromyalgia. If only each of us were as fortunate as you’ve been to find a doctor(s) who are willing to take the time to work with us, are informed enough about the illness to test/diagnose/treat the individual symptoms as well as the overall illness and also experiment with innovative approaches. I’ll give Dr. Teitelbaum’s site a look. I tried some of his supplements years ago, but there were so many ingredients in them and invariably, some of the ingredients had unpleasant side-effects. I often don’t do well with multi-ingredient supplements. The BMR sounds worth a look.
I could get really carried away by talking about each of your symptoms and how you and your doctor(s) treated them, but I’ll stick to the Tramadol comments. I’ve taken Tramadol for a long time, but the one 50 mg. tablet twice a day doesn’t cover my pain, especially in the afternoon/evening when it’s the worst. I cannot take the extended release because it messes with my intestines causing the worst and most embarrassing gas EVER. But the tablets don’t do that. Strange, I know. I was so tired of the increased afternoon pain so I disobeyed my rheumatologist’s order and started taking 100 mg. (2 tabs) just in the afternoons. At first, I got really tired, but after several days, that stopped and I actually get a bit of a boost in energy. But the BEST news is that it covers my terribly nagging between-the-shoulder-blades, shoulders and neck pain! I was over the moon happy! I see my rheumatologist in a week’s time, and I’ll see what she says about my “going rogue” with the Tramadol dose. This is NY State, and the laws here are tough regarding pain meds.
There is a big problem though. All opiate type pain meds cause me to have intensely severe stomach/intestinal cramps: hydrocodone, codeine, oxycodone…all of them. Just awful! The two Tramadol tabs do the same thing. I’ve worked around that for the most part by making sure I take the two tabs on a full stomach and, anyone who reads this will think it’s crazy, but I also take THREE generic Peri-Colace laxatives at the same time. Doing that keeps my intestines moving and counters the cramping. I also eat plenty of fiber. Sometimes I still get the cramping, but drinking an entire can of soda quickly breaks up the cramping.
When I see my rheumatologist I think I’ll suggest that I should see a pain mgmt. specialist who could possibly prescribe something for pain that can be administered with a patch, thereby avoiding the cramping problems.
Thank you so much for sharing your journey with us, Edith! 😀 I’m quite eager to see the next installment! And, as always, thank you, Cort, for bringing us such wide-ranging information. Health Rising is such a blessing! Cheers! Judith
Thanks Judith. Good luck with your doctor’s appointment!
Hi Judith, Don’t get me wrong, I still have Fibromyalgia. I’m only well managed by an extremely skillful Naturopath Doctor. Glad you’re getting some relief from Tramadol, and I support your thoughts of seeking the expertise of a pain specialist. I also get more energy using that pain med. and you’re the first one that confirms that. Thank you! Health Rising has had interesting information on Low dose Naltrexone, and it’s something that I’m very keen on discussing with my MD. at my next appointment. I understand that you have to be off any kind of Opiates before, as they bind to the same receptors. Hope my MD. can help with the possible with drawl symptoms. Effexor, an anti depressant works well for some with our type of pain and I’d dearly like to try it, but it has this bad side effect of weight gain. So, low dose Naltrexone is probably the one I’ll try, if I ever decide on something different. For the binding stomach problems, I use magnesium citrate 150mgs and I can add more if necessary. I also eat 12 grain bread or bagels and that is also helpful. I’d be very careful with too many laxatives, as I read somewhere that it may cause your body to depend entirely on them and omit doing any of it’s own natural work. Be sure to check with your Doctor. Thanks for your comments and good luck with proper pain management.
Not to overstay my welcome here but my understanding is that FM is seen as neuro inflammatory, that is, on fMRI, you seen inflammation of brain areas that indicate central sensitization. That’s different from the kind of factors that show up in blood tests for “standard” inflammatory diseases like RA and Crohn’s. FM is at beginning stages of biological evidence of this process, probably a brain trauma similar to PTSD. If we live long enough they’ll get a better handle on it. BTW, my subset of FM includes widespread pain and tender points, insomnia, fatigue, and tinnitus, all sensorineural problems. No ibs, thyroid, etc, though I suspect subtle neurohormonal problems beyond our ability to identify.
Hi All
My name is Lyndsay Roux and I am from South Africa. I just thought I have to tell you FM sufferers of my awesome experience the past 2 weeks. I have been suffering with Fibromyalgia for the past 5 years, however, I was only formally diagnosed a year or so ago. All scans, xrays, acupuncture, botox implants, muscle relaxants, anti-depressants, pain stillers, etc have remained fruitless and I continued suffering with chronic upper back pain 24/7. The absolute exhaustion caused by the chronic pain was extremely debilitating and I was on the verge of suicide. From sheer desperation, and on advice from another sufferer on the Fibromyalgia Facebook page, I tried 100% canabis oil (NOT Hemp oil). The first week of taking the meds had its challenges, however I was warned beforehand. It made me feel light-headed and a little nauseous, but wow, what can I say!!! Two weeks down the line, I am feeling like a million dollars, and since, been pain-free. This is the miracle I have been waiting for to happen for the past 5 years. It happens to be an extremely contraversial topic in SA, since cannabis and all related products is illegal, even if used for medicinal purposes, but I am living proof that it works. I really just hope and pray that it lasts, but the past two weeks of my life has been absolute bliss – to be pain free and full of energy like a 38 year old should be (and not feel like 88) is absolutely incredible. I feel like I could stand on the highest mountain peak and scream it out to the whole world and the thousands of Fibro sufferers out there. Pain free without any negative side effects – what a blessing, and what more could anyone wish for?
Feel free to contact me should you have any questions.
Congratulations Lyndsay! and thanks for sharing. I really encourage you to post a review here – http://www.cortjohnson.org/forums/reviews/treatments/pain/medical-marijuana.221/ – so people can easily find your experience. (if you haven’t registered for the forums you need to register).
That is great news, Lindsay, and I, also would appreciate any details you can post where Cort suggested. I’ve tried a few THC and CBD items and they seem to hold promise for me but I need to fine tune the amount and type of oil. I also have a ragweed allergy that seems to extend to cannabis products but would swap sore throat and congestion for pain relief.
That’s fantastic, Lyndsay! I’m so glad you have access to the cannabis oil. It’s so absolutely ridiculous that the issue of legalizing marijuana and its components is still so full of contention and debate. Alcohol is legal and has lead to far more harm, and death, than anything marijuana would create. I would try it for my pain, but medicinal marijuana is still not legal in NY State.
I wish you the best, Lyndsay, and hope that your pain relief continues. Stay safe, as well.
Judith
Hi Lyndsay, Sorry I’m so late in replying to your comment, but I thought I had lost you. I found you again when I checked back to part 1 of my articles. I personally know of another lady that was using marijuana for pain and it was working well. CNN, an American news station had their medical adviser Dr. Sange Gupta do a series on the benefits of certain kinds of marijuana for people suffering from seizures. One little girl was getting them every few minutes. I cannot even imagine what she and her parents were going through. This particular medical marijuana did miracles for her. I’m also so happy that the oil is giving you your life back. About 2 weeks ago, medical marijuana was legalized in Canada and our minister of health was outraged at the fact that this med. had not gone through the same trials as other drugs. She may have a point, but when there is nothing out there that can ease our suffering, who can blame us for trying any thing out of the ordinary that might just work. I was desperate just like you and went out there and found the help. Who can really judge us for that. I always counted my lucky stars, that my FM did not start when I was very young as has happened to so many like you. I may not be here to witness the cure, but I hope it comes soon, as I have 3 of my grandchildren who have 2 grandmothers that have Fm. I worry about the others as well. Thanks for sharing with all of us what worked for you and I wish you the very best always.
Not to be a nit-picker, but I’m wondering why you would call Klebsiella pneumoniae an “enterovirus”. It is a gram-negative bacterium. Perhaps the confusion arose because it is a member of the family Enterobacteriaceae? This bacteria typically causes pneumonia, but can cause other infections, inluding UTIs, GI, wound or blood infections. Typically a problem mainly for immunocompromised patients.
I only bring this up because of the discussion about enteroviruses as being a possible cause of ME/CFS. Enteroviruses are not in any way related to enterobacter bacteria like Klebsiella.
Thank you for sharing your interesting experiences. Sounds like you got a good naturopath.
Hi Vlynx, Sorry, my mistake. After checking, I sent an E-Mail to Cort asking him to post a correction in part 2 of my story, coming up soon.
Fixed!
I find it odd that the doctor diagnosed hypothyroidism by doing all of those body temp measurements, when you can just measure the free T4 and free T3 levels in the blood, instead of just the TSH, and find out with greater accuracy and a lot less effort (yes, but with some expense, though insurance would likely cover the test). Also, make note of the difference between ‘Wilson’s Disease’ and ‘Wilson Syndrome’. The former is a defect of copper metabolism with reduced ceruloplasmin, causing damage to the liver and brain.
Hi David, In my case, we are talking about Wilson’s syndrome. Lab. tests only show a moment in time and may not be showing the total picture. It’s my understanding that they have to consider a lot of other factors like the symptoms that their patients are presenting, etc. in order to make a proper diagnoses of a particular thyroid problem and what course of treatment to give.
Judith F,
I try to tough it out until about 3 PM to take my 50 mg Tramadol. I don’t really have a Relationship with my rheum and suspect he will waffle about renewing even the 50 mg tabs , given the opiate deaths in my area. I do think that adding a 325 mg acetaminophen (Tylenol) tab works to amplify the Tramadol pain response somewhat, though fibro neuro feet seem immune being helped. I try to eat cherries with my morning oatmeal and have another fruit during the day to forestall the constipation from opiates.
Edith,
Can you share the name of your Naturopath? I’m in Vancouver, BC.
Great story.
Thanks!
Hi, RosesNRacehorses. I am not in your province in Canada. Sorry I cannot reveal my ND’S name as he has an enormous waiting list of people in line to see him. I would suggest that you go to various health food stores in your area and ask staff members for names of recommended NDs. Not all Naturopath’s are doctors, so be sure they have an ND after their name. I’m sure there are great ones in BC because of your large Asian population who are more likely to seek natural medical help. Your provincial government’s health plan may cover more alternative care than mine would, so hope this helps.
My mom has the same things, and she hates it when it’s cold out, because it’s more pain to her, but heat really does help.