I usually never write a letter of complaint after I have a(nother) bad experience with a health provider. I just want to move on. In some cases I am afraid commenting will affect my treatment. In others I just feel disillusioned that it will make any difference.
I am coming up on my four year anniversary since diagnosis and I feel a sense of responsibility, that after all my experiences I should raise awareness about the basics of safe, competent, patient centered care. So I am posting a letter I wrote to an acupuncture clinic I tried last week, which was an epic failure, in the hope that a health provider out there reads it and learns a thing or two!
I would like to cancel my appointment next week. Treating chronic pain patients requires specific skills and I would like to pass on a few suggestions for improving your clients’ experience:
– after the acupuncture needles are put in place, inform the client how they can call for assistance if they need to. I was in significant pain because of the lying position I was in and could not get help during the last 10 min of waiting.
– inform the patient about each procedure beforehand, what it will be like and what the possible consequences might be. Sarah (name changed) asked if I would like to try cupping and after I agreed she began the treatment before explaining what it entailed. Furthermore, instead of testing one or two times she did it all over my back. Since then, I have had chronic headache, a pain flare and deep bruising. The definition of my condition is increased pain sensitivity so an experienced practitioner should have trialed the treatment on the first visit. I have had to see my physiotherapist to undo the muscle spasms caused by this treatment.
– I was given a herbal remedy but the ingredients were not explained, nor were the benefits or possible side effects described. This is the equivalent of my doctor saying ‘here is a prescription’ without telling me what it is, why, or what it should do! I have a lot of sensitivities to drugs and supplements, and often need a lower dose than normal but was not given an opportunity to discuss this in private.
All of these examples are ultimately a failure of patient-centred care – making the client feel like a person rather than a diagnosis – and therefore, I will not be returning to your clinic.
At a recent appointment to my naturopath, to the wonderfully named Dr. Love, the topic of recurrent muscle pain flares came up. Anti-inflammatory interventions and nervous system calming remedies had not broken the cycle of muscle pain I experience. My pain predominantly occurs in my upper back/shoulder blades on either side and my glute muscles/SI joints. Even though I stretch and strengthen, which helps, I have not broken out of these painful cycles. My naturopath asked what my osteopath had to say about whether my muscles are particularly restricted and not very responsive to treatment. My osteopath said that my thoracic spine and pelvis area were particularly restricted.
If you have fibromyalgia, you may be tired of reading all about how exercise will improve your quality of life.
There are zillions of articles on the internet citing studies that demonstrate how moderate exercise reduces pain and improves other FM symptoms. I don’t know about you, but the last time I went to try a yoga class, I spent the next three days in bed from a major flare up. Or the last time I jogged to catch a bus, walked in the snow, or did anything else remotely aerobic – it didn’t turn out so well.
So how exactly are we supposed to get this exercise, in a way that improves our FM, instead of triggering it? Previously I wrote about a tai chi dvd for arthritis with Dr. Lam, which is very gentle, yet therapeutic. However, sometimes you need several options to entice you into a work-out! Recently, I came across an excellent resource for FM exercise DVDS at www.myalgia.com. They are produced by the Fibromyalgia Information Foundation, a non-profit run by doctors and researchers at the Oregon Health and Science University. This means that all the exercise routines are designed by reputable instructors and approved by FM medical specialists from the University.
There are 4 DVDs in total: Yoga and Pilates, Stretching and Relaxation, Strength and Balance, and Aerobic Exercises. Here is the best part – along with the instructor, each video includes three FM patients demonstrating the movements. Each patient follows a program at a different level of difficulty, with modifications for more severely affected patients, to ‘medium’, to ‘advanced’ movements. I have tried the Yoga and Pilates DVD and really enjoyed it. 1 can pick which ‘level’ to do based on how I feel. Over time, I can feel myself improving and following the more ‘advanced’ level program more often. I hope to move up to the strength DVD. I previewed it – it is older than the Yoga DVD and has awesomely cheesy music! If you are looking for an at-home exercise routine (maybe to fulfill your New Year’s Resolution for 2015), I highly recommend these DVDS. They are reasonably priced and thoughtfully produced for FM patients.
* Please note this is an independent review, and I have no affiliation with the organization.
Based on the clinically proven mindfulness meditation course developed by Jon Kabat Zinn – helps to reduce chronic pain and stress. I took this course in person at my pain clinic for a small fee and it was incredibly helpful to me. This one is conveniently online and free 🙂
The never ending search for a good night’s sleep…If you have fibromyalgia, you know what I’m talking about. I have blogged before about different supplements that can help you get the rest that you need. Dr. Teitelbaum’s recommendations have been my starting place for finding effective sleep supplements.
After a lot of trial and error, I found a concoction that seemed to work: 50 mg 5htp, 100 mg L-theanine, and 3 mg melatonin. This seems to help me fall asleep, stay asleep and get back to sleep if something wakes me up. Interestingly, I found an article that recommends this exact trio because of the synergistic effects between them.
L-theanine reduces stress chemical messengers (cortisol and epinephrine) to induce calm and help you stay asleep.
Melatonin is a hormone that tells your body that it’s time to go to sleep. It also provides pain relief to FM patients when taken at higher doses (a recent study demonstrated that 10mg per night is effective). Melatonin is also a potent antioxidant.
5htp is a precursor to melatonin and serotonin. One interesting thing I learned from this article is that night time serotonin helps repair the wear and tear that day time activity causes. 5htp helps provide the building blocks for both of these important chemical messengers.
http://www.betternutrition.com/supplements-for-sleep/ sleep supplements
Huzzah! I hope this helps someone else out there sleep well tonight!
So last week I wrote about my recent energy crash and brain fog (which seems to go along with digestive symptoms). I think it has to do with starting school courses again (two online classes). At any rate, the things I tried last week improved my coping, but not enough to ward off the zombie fatigue permanently. So I decided to add some more supplements to the mix. I rechecked my CFS bible ‘From fatigued to fantastic’ by Dr. Teitelbaum and realized I’ve been overlooking adrenal fatigue. He recommends Vit C (500-1000mg), Vit B5, also known as pantothenic acid (100-150 mg) and licorice (200-400 mg).
I got all three (but my pantothenic acid supplement was 250 mg). I didn’t sleep well but my energy was much better sustained during the day! The downside was the side effects (diarrhea), probably from taking more than Teitelbaum recommended… And my sensitive tummy! Obviously I need to take less and even try to work up to the recommended dosage. Hope that gives someone out there more tools to add to their arsenal!
Update: after two weeks my energy has been much better, so my adrenals must have been zapped!
I had an appointment with my naturopath last week. She was happy with my progress so far. My stomach issues have been much better. Last August, I did a food sensitivity test in combination with a food diary, and identified my trigger foods. After I eliminated these triggers, which included eggs, wheat/gluten, cruciferous veggies (broccoli, cauliflower, brussels sprouts) and beef, my gastrointestinal tract is been much happier. In addition, I also take a probiotic, an anti-yeast/anti-microbial supplement (Genestra Candicin) and intestinal support supplement (Metagenic Glutagenic with glutamine, aloe and licorice). This cocktail helps to keep things humming along nicely! If you’d like to know more, I wrote about it in a previous post: naturopathic protocol part 1. In the second phase of my protocol, my naturopathic prescribed D-ribose. I take 5 g daily, which is lower than the 10 to 15 g advised by some leading CFS/FMS researchers, but I found a higher doses gave me headaches. So far I have seen an increase in my energy levels – about 25%. At my most recent appointment, the naturopath wanted to address my pain issues more directly. She added a proteolytic enzyme called serrapeptase, which acts as an anti-inflammatory and pain killer. This enzyme, which was originally found in bacteria from the guts of silkworms, digests protein, and helps silkworms to break down their cocoons! In the human body, it reduces swelling by promoting drainage, inhibits pain-inducing amines called bradykinins, and breaks down dead tissue like plaques or adhesions.* It has been used in Asia and Europe for over 25 years and is backed by a significant body of research. Although it has not been studied specifically for use in treating fibromyalgia, it has been found to be effective for sprains and torn ligaments, carpal tunnel syndrome, post-op swelling, clots, arteriosclerosis and upper respiratory infections.* I think that this might be particularly effective for myofascial pain syndrome, which is characterized by trigger points in muscle groups, and frequently associated with fibromyalgia. Anti-inflammatories are more effective for myofascial pain syndrome than fibro, and I can imagine that in addition to its anti-inflammatory component, serrapeptase might help also help break down the adhesions and trigger points. My pain has been significantly reduced since I began taking it twice daily. The only tricky part is that you have to take it on an empty stomach so that the enzyme is absorbed into your bloodstream and not used up in the gut digesting protein in your food. My naturopath also prescribed an additional energy enhancing supplement which contains acetyl-L-carnitine and Coenzyme Q10. Both of these supplements have been found to improve fibromyalgia symptoms in recent studies. This past October, Spanish researchers published a study demonstrating clinical and molecular benefits from CoQ10 supplementation. This randomized, double-blind, placebo-controlled study included 20 participants diagnosed with fibromyalgia. Half of the subjects were given 300 mg of CoQ10 daily for 40 days. These subjects were found to have significantly reduced pain, fatigue and morning tiredness. Interestingly, these clinical results were corroborated by molecular findings. The researchers found recovery of inflammatory biomarkers, levels of antioxidant enzymes, mitochondrial function and expression of a gene called AMPK. This gene codes for an enzyme that plays an important role in cellular energy metabolism. The study concluded that CoQ10 may be beneficial for fibromyalgia sufferers. In 2007, researchers published a study that looked at the effects of acetyl l-carnitine supplementation in patients with fibromyalgia. Over 100 patients were enrolled in the study. The active group were given over 1000 mg of acetyl l-carnitine daily plus 1 intramuscular injection of 500 mg weekly for 10 weeks, and the control group was given a placebo. Researchers found significant benefits in the active group from supplementation, specifically in reduced tender point pain, overall musculoskeletal pain and depressive symptoms. They concluded that acetyl l-carnitine is a helpful supplement for pain and mental health in fibromyalgia patients. I am taking different amounts of these two supplements than were studied. My formula includes 80 mg of CoQ10 and 100 mg of acetyl l-carnitine daily. I have only been taking this supplement for a few days, so I will have to report back later on any effects I feel. If I don’t see any effects, then maybe I will have to consider taking a higher dose! Both of these supplements are involved in cellular energy metabolism, which is interesting because the primary theory at the moment is central sensitization of pain processing. Fibromyalgia must be some kind of crazy jigsaw puzzle – but obviously it has far-reaching effects in our bodies. Anyway, that’s enough research nerding for one day! Have a happy day! Rossini M, Di Munno O, Valentini G, Bianchi G, Biasi G, Cacace E, Malesci D, La Montagna G, Viapiana O, Adami S. ‘Double-blind, multicenter trial comparing acetyl l-carnitine with placebo in the treatment of fibromyalgia patients’. Clin Exp Rheumatol. 2007 Mar-Apr;25(2):182-8. . **Mario D. Cordero, Elísabet Alcocer-Gómez, Manuel de Miguel, Ognjen Culic, Angel M. Carrión, José Miguel Alvarez-Suarez, Pedro Bullón, Maurizio Battino, Ana Fernández-Rodríguez, and José Antonio Sánchez-Alcazar. Antioxidants & Redox Signaling. October 20, 2013, 19(12): 1356-1361. doi:10.1089/ars.2013.5260. *’All about supplements: Serrapeptase – the natural anti-inflammatory’. Life Extension Magazine, September 2003. Accessed November 14, 2013. http://www.lef.org/magazine/mag2003/sep2003_report_aas_01.htm ‘Studies show benefit of CoQ10 in fibromyalgia’. Natural news, April 26, 2013. Accessed November 18, 2013. http://www.nyrnaturalnews.com/pain-2/2013/04/studies-show-benefit-of-coq10-in-fibromyalgia/
- Did You Know? It’s Naturopathic Medicine Week (healthbistro.lifescript.com)