I was diagnosed with Fibromyalgia 6 years ago, in September of 2012. They tested me for Lupus, and MS, and some other things I can no longer remember but which could possibly kill me, and I was glad to find out that Fibromyalgia wasn’t going to kill me. Unfortunately however, there is also no cure. Everyone’s experience with this debilitating condition is different, even while being the same. We all have pain (hugs hurt). We all have severe exhaustion (doctors call it fatigue, but it is so much more than that). We all have “fog” sometimes. Some of us have more pain than others. Some of us have more good days than others. Some of us have more fatigue than others. Some of us have sideline conditions that effect our mobility and pain levels as well, like arthritis, or asthma, or whatever. Six years later, and I’m still coming to terms with this. I want there to be a place I can go to make it better, something I can do to get my life back. People with Fibromyalgia often have some precursor symptoms early in life, such as they might not have as much energy as children, they may have days when they can’t think as clearly, and fluxuating energy levels, that become more and more fatigued and less and less energy as time goes on. Sometimes the onset of Fibromyalgia is triggered by a traumatic event, perhaps a car accident, physical abuse, or surgery. There is another condition called Post Tubal Ligation Syndrome (PTLS) that shares most of the same symptoms with Fibromyalgia, and I suspect this may be a large part of my symptoms, but insurance will not pay for the treatment so that I can get my life back. The treatment is a tubal reversal (resectioning the tubes back together), which costs $10,000-15,000. I have known about this for about 4-5 years now, but have not found any way to pay for it or to get insurance to pay for it. This is a very sore issue for me because the more I have researched it, the more I have tried to talk to doctors or insurance about it, the more I have learned that we live in a culture of death. They will pay to stop life, but they will not pay to restore life. They will pay to take fertility away from people, but they will not pay to restore it even if the purpose isn’t for reproduction but for restoration of productive health and functional abilty. They don’t care if a person is debilitated, partially non-functioniong, they only care about reducing life. It makes me angry, so I try not to think about it or talk about it too much. I have had to find my own way to improve my functionality as much as I can. The best way I have found is through vitamins and supplements. In the words of my current physician, “You can’t take a blessed thing for it.” I’ve developed an allergy to antibiotics, painkillers, and several foods, so I have to be careful about what I take. I can not take any opiates at all. I’ve also developed an allergy to cinnamon, which is anti-inflammatory, so I can’t take that in any form of supplement as well. I’ve found some vitamins that I can take over the years, much thanks to Ginger Selden of Newberg Natural Foods for her advice and friendship. I still consult with a licensed physician for medical advice, and would never suggest that someone should stop doing that. Sometimes we need doctors to help us. But these are the things that I have found that help me. I am posting this list by request of a friend who wants to know what so she can decide if some of these things might help her too. Perhaps this list will help someone else also. I’ve had a few people suggest I should try taking a multivitamin to see if that helps. I have trouble holding back the laughter. If only they knew!!! This is what I take (almost) every day. I take the energy vitamins in the day, and the sleepy vitamins at night.
I take B Complex 100 (MUST HAVE 100 mg B6 in it! Check the label. Some companies are skimping on the B6!) for energy and mood balancing. I notice within 3 days when I run out of this one vitamin. It’s my most important vitamin!
I take magnesium for muscle cramps and sleep. Have to take calcium with it for absorbtion. Don’t take Magnesium during the day or it can make you have nap attacks.
I take Inflammaless with Turmeric and Ginger for inflammation. It doesn’t help a ton but enough I notice it when I stop taking it. Sometimes I add in Aleve (an NSAID) for pain and inflammation as well.
I take Gingko for memory function.
I take Astaxanthin (10-12 mg) for eyesight. Someone told me it’s good for skin too, but that isn’t why I take it. It smells awful and tastes worse, but it does seem to help so I keep taking it.
I take E 1000 mg to prevent dry skin.
I take L-Lysine 1000mg – 2000mg a day to boost my immune system. If I feel like I’m coming down with something I bump this up to 5000 mg a day. If I actually get sick I might take 4000mg 3x a day.
I take Magnesium Asportates with Potassium for my heart and muscle cramps. This version does not have as strong of a laxative effect as other types of Magnesium.
I take Vitamin D for immune boost and allergy prevention.
I take Vitamin A for immune boost and eyesight.
Sometimes I take American Ginseng for energy, but it seems to bother my heart so I don’t take it very often. Perhaps Korean Red Panax Ginseng would work better for me, but I haven’t tested it yet.
I take Solaray Bone Tone for the proper type of calcium to help fight the effects of arthritis and strengthen my bones (I have genetic potential for osteoporosis so trying to prevent that).
I recently started taking Co-Q10 for heart and muscle maintenance, immune boost, and possible cancer prevention (some anecdotal evidence it may help with that, but this is not the main reason I’m taking it). It may also help with brain function although I notice a bigger difference when I take (or don’t take) B-Complex than when I take this.
I also recently added Selenium to my regimen. I know from talking to the vet about our goats that this area is critically deficient in selenium, so the food grown here is deficient as well. I’ve read online that selenium can reduce the incidence of breast cancer. I know it can help with skin, hair and scalp issues as well. I’m not sure what else selenium effects but I have a feeling that since our region is deficient that I am likely deficient also so I started taking it.
I take Solaray Energy multivitamin to fill in the gaps.
I do not take any prescription drugs for my Fibromyalgia. The reactions I’ve had to the two I’ve tried have made me not want to try any more. It was pretty bad.
Flexeril was the first thing my Dr. tried me on. The Flexeril though was awful. I had something resembling an allergic reaction to it, my throat and the back of my tongue swelled up, and it made me a little panicky. I only took it once and I refuse to take it again. It took 24 hours for the swelling in my throat to return to normal and 48 hours later my stomach was STILL upset. That is nasty stuff.
I do NOT take Gabapentin. I tried it for a while (few weeks?) and it felt like it was lobotomizing me. I could not think. I could not plan anything more than 2 minutes in advance. One day when my husband came home from work he joked “What’s for dinner?” and I responded, “Dinner! What a great idea!” Only, I was NOT joking. In that moment it really was a great idea that I had not thought of. That scared me so bad I quit taking it immediately. It took several months for that lobotomy effect to wear off. After two years my Mom commented that she thought I still was suffering some residual effects. Maybe I am. I don’t know how much is the Fibro and how much is the Gabapentin, but I will never take that again! I just do not respond well to drugs at all, so I’m trying to cope with natural treatments only.
I found a post I made on MDJunction 10/01/2011 that said I was just diagnosed with Fibro 2 weeks before that. So it’s been a little over 6 years since I have known what was wrong with me. Longer of course since I’ve had symptoms.