For our June meeting of the Mishawaka Fibromyalgia Support Group, we didn't have a speaker, which turned out to be just what we needed. We had a new face (& spouse) come and share this evening. This is always so very encouraging on two fronts because 1) When the spouse is involved, the chances are so much better for positive outcomes, sharing and understanding and 2) it shows me that more and more folks are taking that big step to seek other options, without becoming stuck and giving over their body to another person who "doesn't live IN it - or WITH it."
Ultimately, I believe that it's our own body that does its own healing, through our actions and through those we give our power to - MD in whatever field, Osteopath, Naturopath, nutritionist, chiropractor, acupuncturist, self and learning/research, knowledgeable friends, and those who've been there. The idea is that we live in this body and it is our own responsibility to seek out what will help it the most. It is my belief that a combination - the right combination for YOU - is what works best for pain of any kind, or for illness of any kind. There is no one way, one pill, one treatment, that will work for any of us, much less all of us.
And so when CT came in this evening, he was searching for another option besides the doctor who now wants to do surgery on his spinal nerves. He states that so far, even with the prescriptions, the pain management doctor, and the spinal treatments, nothing has helped. Like the rest of us CT went to his family physician for help at first, then on to other "specialists" for back pain, sciatica, and other issues, and still found the pain to change very little, not to mention other maladies, like lack of sleep, stomach issues, etc. Coming to this meeting was his first reach to find out if there is something else "out there" that could help.
I am almost sorry for the sheer volume of information that was thrust upon him. Other members of the group chimed in with a number of things that helped them, too. I had plenty of handouts, business cards and information from prior speakers, etc as well. To describe everything we talked about, I almost need to have had a recorder to transcribe it all. But I will try to list some of the topics we covered.
When CT mentioned stomach issues, we talked of probiotics, gluten sensitivity & lactose intolerance. We talked of caffeine in coffee. Some mentioned that coffee affects them very negatively, but MG said that the dark french roast (freshly ground) does not have nearly as much caffeine in it. I told of drinking one or two cups of weak coffee per day, that is, 3/4 hot water and 1/4 coffee in the cup. I, and many others, don't do decaf coffee because it is processed with added chemicals, and many of us are chemical sensitive (which is one reason why prescriptions don't tend to act the way they're supposed to, or we have a reverse reaction to them).
We discussed lactose intolerance, and different options to dairy milk, such as almond milk, rice milk and soy milk. However if hormones are an issue, in male or female, soy may not be right for everyone because soy mimicks the action of estrogen! And this added extra can throw hormones OUT of balance instead of helping anything.
We talked of water and drinking enough of it!
We talked of aspartame, MSG, nitrates (found mostly in processed meats like hot dogs, lunch meats and other meats, and other products), etc. Then we talked about the alkaloids in nightshade vegetables that many of us are sensitive to. Tomatoes, potatoes, bell peppers, eggplant & others are in the nightshade plant family; they are a common aggravator for many of us. But, because they are full of vitamins and minerals and can be beneficial also, I've discovered that, for me, I can eat one of these vegetables per day at a meal, and another one on another day and so on, without any ill effects, so that I can still get the benefits of these nutrient and antioxidant rich foods.
I discovered this by doing an elimination test. I eliminated all of these nightshade vegetables for one week. It was hard because I truly love potatoes and tomatoes, but I figured it was worth it to see if they affected my pain. Then, after that week, I tried eating potatoes at my main meal. The next day I had tomatoes. The next day I had more potatoes. *:) (I was born in Idaho, what can I say?) And lo and behold I had much less pain! And for a wonder, I was masochistic enough to try another experiment. About a month later I had tomatoes and potatoes in one meal and yes, I was in pain all that evening. OK. So that was proof enough for me that the combination and larger amount of nightshades is a trigger for pain - for me. I still eat only one nightshade at a meal per day.
Then we discussed the possibility of CT doing an elimination test to see if gluten is an issue affecting his stomach. We described what gluten is, and nearly everyone in the room agreed that they have cut way back on gluten, and several have gone totally gluten-free, to help ease their pain.
We went back to discussing tea when CT mentioned his lack of sleep. He is currently using a CPAP unit to help some, but still has a hard time sleeping. I spoke of L-Theanine, which is an amino acid found in tea, green tea having the largest amount, then white tea, then black tea. This compound actually helps negate the jittery effects of the caffeine found in tea (which is about one third that of coffee, anyway). L-Theanine is actually put into many OTC sleep medications, not so much because it is a "put-you-to-sleep" compound, but more of a relaxing and calming compound, while at the same time provides gentle access to the alpha wave state, where focus and clear-thought processing can take place. Thus it's used by millions in England at "Tea Time" for an afternoon pick-me-up. This website explains it's action to help raise serotonin and dopamine, help sleep, stress and much more.
Regarding sleep, I spoke of how much I really like the Breath Right Nose Strips, especially when my sinuses are acting up. We also discussed Benedryl to help sleep. I've been using 25 mg (of the Wal-Mart brand) for more than 13 yrs with no side-effects, where it helps me get all 4 stages of sleep, and I wake allert and ready to go for the day with no grogginess. Another member said she can't use it because she wakes up groggy. I did mention that 50 mg (double the dose) keeps me awake and wired, so I stay at the low dose. But again, we all made a note that here is another case, like everything else, that not everything works for everyone, and so the best we can do is see what works for each of us on an individual basis.
JP (who gets groggy using Benedryl) said she uses another RX that she has been using for many years that has helped her fibromyalgia symptoms AND her sleep. It is a prescription that I had not heard of before. She said she has been using it very long time and has had no side-effects whatsoever. I have since met a friend who said that her daughter has been using it for 18 years with no side effects. Not only has it helped her sleep but it has helpedput her Lupus in remission for all these years! Impressive! I did some research on this prescription med called Paquenil. It has been around for a very long time as it was used in WWII for malaria. It has been used successfully to help the pain and detereioration of Rheumatoid Arthritis, and other conditions as well! Here's the WebMD site where you can read of it's uses, side-effects, and precautions. Ask your doctor about it too!
MG recommended that CT get a spiral notebook and keep a journal of the foods, medications, supplements he's taking, and write down how he feels each day. This way he can refer back to see what my have caused today's aches and pains. This is especially helpful when doing the elimination tests for gluten, lactose, and nightshades. But also for new medications, activities, treatments, etc.
I had had a member of our group ask me if cortisone is a common drug for tender point injections. A number of us said that something like Lidocaine would be preferable as cortisone is not one of our more helpful type of drugs for Fibro. Then JP mentioned that she gets Lidocaine injections in her neck & shoulder tender points once or twice a year from her doctor. Fortunately, he is on our list of Fibro-friendly doctors: Dr. Nicholas Staniero, 707 N. Michigan St, South Bend, 574-647-4500.
I had looked up Integrative Medical Physician online and came up with only one name in our area: Patricia Kelly-Holmes, MD, 1251 N. Eddy St., Suite 200, South Bend, 574-208-9181. She is listed as practicing Integrative Holistic Medicine. Integrative medicine involves a Medical Physician who is also open to natural help, including things like acupuncture, chiropractic, vitamins and supplements etc as well as practicing allopathic medicine, which means that yes, she can and does also write prescriptions if that's what's needed.
I know there are several others in our area, including those at Physicians HolisticHealth Alliance (PHA) who, as it happens, was having a free "Introduction to Acupuncture" Seminar the next week! CT said he didn't know anything about acupuncture, and so I passed him (and everyone else) the flyer for the seminar. (How's THAT for a Coincidence?) Someone mentioned Dr. Janice Smith on Mishawaka Ave as practicing integrative medicine, but I have no further information - it was third party informtion. It is wise to ask around the medical community, health food stores, chiropractors etc, because not all of them are listed on the internet under "Integrative Medicine Practitioners.".
We mentioned Coconut oil for skin, infections and for healing.
Lyrica was mentioned. It works for one or two here and there, but clearly not for everyone! Me included. Gabapentin (brand name Neurontin) for nerve pain was mentioned. And again, it works for some, but not everyone. The other downside to most Rx is that they are not meant for life-long treatment, due to addiction and or when your body gets used to them, they just plain don't work any more. So when you attempt to get off them, there is the huge withdrawal syndrome thing goin' on. In the meantime they have re-adapted your body so that other things don't work as well.
We actually covered a lot of territory this night, but there's a LOT more "out there." I hope we didn't scare CT away with so much information! We could have gone on all evening!
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