Merry Christmas Everyone! 12-21-2011
Our Fibromyalgia Support Group meeting for December was quite memorable. I just pray I can do justice in writing about it! One of the challenges of being the host of this wonderful group of people is that it is my job is to take notes so that I can write these Fibro Notes, so that you in turn, can have the vicarious experience of "being there." But when I get all caught up in the experience myself, my note-taking ability wanes. This is a shame really, because I heard from each of our attendees that this was an extra special meeting for them. Me too.
By the way, you may not know this, but these Fibro Notes are sent to 125+ folks in chronic pain with Fibromyalgia and a variety of assorted other conditions! Then, they are posted onto my blog at http://ManagingFibromyalgia.blogspot.com where anyone can read the back issues and postings from 2009 when I began this blog.
My plan for this evening, as stated in an earlier e-mail, was to discuss how we each manage the "unexpected" things that pop up while we are also experiencing Fibro and whatever else happens to be going on in your body - things like the not-so-common cold or flu or physical injury or shingles or what have you. But I've learned over time, to go with the flow of the evening, it usually works out a lot better. So we'll cover this topic at another time *:)
There were nine attendees, including myself and two surprise (and most welcome) guests, James Keating, Doctor of Chiropractic and Acupuncture from Preventive Medicine, PC, and his assistant, Crystal.
I asked everyone to go around the table introducing themselves, and to please share their "particular brand" of Fibromyalgia, a bit about their physician, how they are treating their symptoms, how long they've had it, what other condition they may be experincing with it, and so on. I have come to find out that this is a valuable learning tool and leads to many discussions, as it did this night as well. We all learn from each other.
FYI: the age range of our group this evening was 30 - 80+ years young!
December's Support Group meeting
1) I'll start with myself to get that out of the way, if you don't mind. My bout with shingles the past five weeks has slowed me down a bit, and I didn't get things done the way I wanted to. Due to a prescription med, I actually slept through /or was semi-unconscious the last few weeks of November and first few days of December. I did things I have no recollection of doing, and I didn't do things I thought I had done. I didn't get dressed or want to do anything but sleep. However, I will say that the Rx greatly helped the pain during this most severe time-period when Fibro, shingles and arthritis were waging war in my body! I began phasing off the meds around Dec 3rd and began daily use of only natural help during the day (L-lysine, white willow bark, tumeric, doubled up on the Alpha Lipoic Acid and antioxidants and immune boosters) and used topical help such as Capsaicin and Udderly Smooth Hand Cream. I am still using these. I was using one Rx med to get sleep at night so the pain wouldn't wake me every 15 minutes, and I have recently been able to stop that too. So things are on the mend. That is to say, I am at least functional once again! My Fibro has been under my control for about 13 years, and now my shingles "aftermath" is too. Thank you all for your prayers!
2) JH was next to share and told of being diagnosed about 2 1/2 years ago. She is seeing a Rheumatologist and is taking Tramadol, Gabapentin, Cymbalta, Thyroid medication (she has no thyroid gland), Ambien and others. With all this, she is still in daily pain. Fortunately she is not working. JH has seen how walking has helped her dear friend CP, but she told us that her foot is damaged and also in pain, so she cannot walk. She is also getting another Rx from her podiatrist. We then had several folks tell of other ways she could exercise - a hand pedalling machine, swimming, sitting Tai Chi and others. So she went home with ideas to try! Yeah!
3) CP has had Fibro for a number of years and has found that walking is a huge help for her. She's letting her endorphins do much of the pain-relieving. She did have to slow down some when she hurt her knee, which increased the Fibro pain too, but is back to walking 5 miles a day and feeling better now. (She did mention that she was a dedicated walker before Fibro.) She also finds Acupuncture exceptionally helpful, not only for regular treatment of pain, but for Fibro Fog too. It took a couple of months to find the exact right points for her, but now she is going only twice a month. CP is somewhat of a "snow bird" and spends two/three months of the wintertime in a warmer climate. One particularly nice thing about using acupuncture is that her local acupuncturist has written down the specific points/meridians that work for her and she has given this list of points to her other acupuncturist, so that she can have the same, continual care, twice a month without ever having to miss a treatment even when she's not here! And of course she keeps up with her walking in the nicer weather! Her Fibromyalgia is basically under her control through exercise, acupuncture and several supplements, vitamins and minerals. CP is not working part or full-time.
4) NT said that she starts off her day with 25 pills - a combination of prescriptions, supplements, vitamins and vitamins (Gabapentin, Cymbalta, Vicodin, magnesium for example). She takes 3 pills at lunch time and about 7 pills in the evening. She is still in daily pain, but also somehow manages to work full time! She has had 17 surgeries over the years adding to the residual pain and Fibro symptoms. We talked about swimming (and/or paddling around in the water) which helps her pain a lot, but is expensive at the places where she is comfortable using it. Some places the water is too cold, other places the water is too chlorinated. All agreed that both of these conditions were NOT desireable. For NT, Pro Health works fine, but it is $10 to come in to use the pool on a "drop-in" basis. And the fee for joining is quite a bit more! We spoke of soft drinks because she had one in front of her. She said she has cut back on them. Several of us agreed that deleting soft drinks had helped the rest of us tremendously, and we each found that adding lots of fresh fruits and veggies helped too. She is working on the latter, but just doesn't like the taste of them them. She did mention that she has a very supportive boyfriend which helps a lot, especially when the stress of other family relationships seem to amplify the pain. We discussed stress as a major aggravating factor to our pain. Weight is a factor for a few of us, and this always adds to the stress and depression issues. She told of going to one particular doctor, and the first and only thing he said was, "Loose weight and you'll be fine!" We all agreed that this doctor was not only rude, but ignorant about Fibromyalgia too. She left his office and didn't look back! We cheered for her! YEAH!
5) LM was diagnosed 8 years ago at Crossroads Healing Arts Center - the Goshen, Indiana location of The Born Preventive Health Care Clinic in Grand Rapids, Michigan. LM was one of the very first members of my Fibro Support Group when we began in March of 2008. She had had severe Gluten and Lactose issues as a very significant part of her Fibro, which is what led me to begin my inquiries in this direction and it's connection to Fibro. (Up to that point I had had no idea that either was a part of Fibro.) She was quite inspirational for a big part of my second book. Thank you, LM! She had been using nutrition - specifically omitting the gluten and lactose from her diet - and adding a number of vitamins and supplements recommended by those at Crossroads and has not used prescriptions for any part of her treatment. A year ago she went to Rose Quest Nutrition (on Lincoln Way East near this Library) and began a regimen under the tutelage of the nutritionist there. She did mention that it was a bit expensive, but the result is well worth her effort. She is now able to eat a minimal amount of gluten and lactose under specific conditions without any severe effects that she used to experience. She has a strictly regimented routine of specific food and supplements at certain times etc, but she has not felt this good in over 8 years. She is currently working full time and has Fibro under her control through nutrition, supplements, vitamins and minerals.
6) MG has had a very long road and numerous medical events that have complicated everything. Many years ago, a surgery that was performed on the WRONG part of her anatomy ended up in the severing of her laryngeal nerve, leaving her to talk in a whisper for the rest of her life! This was only one of several surgeries over the years for a number of issues, including the removal of her thyroid in 1996. But it was in the early 1990's when she was the Medical University in Ann Arbor, Michigan where she was diagnosed with Fibromyalgia. She takes meds for several other conditions, including her absent thyroid, but she also uses a combination of natural therapies such as deep breathing, meditation, good nutrition, and Juice Plus+ supplements, vitamins and minerals. She and her husband take advantage of the massage therapy, chiropractic, acupuncture and muscle stimulation therapy provided by Preventive Medicine, PC and Dr. James Keating. She is not working full-time.
7) BG is the spouse of MG, and although he does not have Fibromyalgia, he does have chronic back pain and is helped a great deal by the same natural therapies that MG uses, including Juice Plus+. He is currenty seeing Dr. Keating and finds him tremendously helpful for helping to ease his back pain. BG has come up with a delicious recipe for a healthy breakfast which he shared with us. MG tells that she uses Mountain High Fat Free Yogurt in this recipe because it is the least expensive when they buy it by the gallon for use in their breakfast smoothies!
BG's Breakfast Recipe:
1/4 chopped banana
1/2 cup yogurt
frozen peaches or blueberries to taste
Mix well and enjoy!
When NT reminded that she didn't like the taste of fruit or yogurt, MG said, "You can always add a little Congac to hide the taste!" Wahoo!
Dr. Keating was not a silent attendee! He really did participate in many side conversations about the muscle stimulation pads at Preventive Medicine,PC, exercise, massage, acupuncture and supplements, specifically Vitamin D. He stressed the importance of having your Vitamin D level checked. It is importanmt to help pain. Some folks in this area have had levels as low as 4 or 18 etc. When we have a chronic illness, our bodies use Vitamin D quickly each day to help fight the pain and other symptoms. Our level should be reading 50-70 ng/ml DAILY. Taking 4000 to 6000 IU per day is not unreasonable. (I take 6000 IU per day myself.) When you buy Vitamin D, be certain to get Vitamin D3 (not D2) because the D3 is the best absorbed buy our body. It is available in small caps, in liquid, and in sublingual liquid drops (under the tongue). Bringing you Vitamin D level up to a reasonalbe level can make a huge difference in how you feel!
Regarding massage therapy, it was mentioned that if your doctor writes a prescription for "needs clinical muscle work" this is interpreted as "massage therapy would be helpful for your condition" and it may be covered by insurance. Check with your insurance company and see if your doctor will do this for you! Chiropractic is often covered, acupuncture is sometimes covered depending on your health care, and massage may be covered in the above mentioned instances.
On a parting note, MG stated that having a supportive loving relationship is an immense help to Fibro pain and symptoms. NT and CP verified this loudly, and seconded the motion, while everyone else whole-heartedly agreed! *:)
Love is Great medicine!
* I am honored to be the guest on The Harvest Show on Channel 46, WHME, on January 3rd at 9:00 am EST, in South Bend, IN. Discussing Fibromyalgia in a brief 10 - 12 minutes interview is going to be a challenge, but I'll give it my best. Please feel free to check out the show or view past shows and interviews by visiting their website at www.harvest-tv.com