How do you filter all this information?

Who do you believe?

Where do you go for your expert advice?

Fibromyalgia has slowly become current. And by that I mean with FDA approval of drugs to treat FM, and with the marketing that comes along with it – to us via media, and to health practitioners via free samples and kick backs – Fibromyalgia is visible. So of course every health expert and health blog must have something to say on it or they are not being current. This benefits us in a lot of ways, but it also creates a problem of authority.

Who do you trust?

Who do you believe?

I recently received an email asking me about a current book on Fibromyalgia. Is it authentic? Is it worth the read? Is the author simply looking to cash in on the newest hot topic?

Having not read the book myself I could easily have said “sorry I have not read it” and moved on, but by creating this blog I have positioned myself as a type of authority on Fibromyalgia (and I believe patient experts are the best experts), so I shared with her my general opinion on all Fibromyalgia related information out there:

Knowledge is power. If you are interested enough from researching the book, I say get it and read it. It may turn out that you disagree with the authors findings/opinions on FM, but it can often be just as helpful to read literature we disagree with, as it is to read a tried and true information source.

But be a savvy reader. Blind faith, blind trust in “authority” is just scary. Especially in this age of the web when anyone can write and publish an article, and call themselves an expert. A healthy amount of skepticism is good. Trust yourself first, and then take away from your research the things that serve you best. I have had several people tell me that yoga sucks! I disagree, but I leave it at that. It is not up to me to convince them otherwise. Because truly, the only thing I am an authority on is my daily battle with Fibromyalgia. Keep this in mind when reading all the “expert” advice out there; you are your own best authority.

And the sign said everybody welcome, come in, kneel down and pray
But when they passed around the plate at the end of it all,
I didn’t have a penny to pay, so I got me a pen and a paper and I made up my own little sign
I said thank you Lord for thinking about me, I’m alive and doing fine ~ Five Man Electrical Band

It is too soon to know what, if any, impact this will actually have. The FDA is not required to follow the committee’s recommendation, although historically they do. At the very least it is a good time to consider what options you have to prepare for the possible ban. Prescription painkillers will always be available in some form. With complaints of chronic pain on an epidemic rise, drug companies will see to it. But prescription painkillers need not be the only option for Fibromyalgia pain treatment.

So what can I do to ease my pain naturally?

I am glad you asked! In the midst of a severe Fibromyalgia flare-up, there may be nothing as quick to bring relief as good old - insert your painkiller of choice here, but for daily maintenance and preventative health care, natural is best.

Foods & Herbs

Your food should be your first medicine. In a previous post I listed the many toxic foods to avoid if you have Fibromyalgia. Now lets take a look at foods and herbs beneficial for pain management.

Essential fatty acids are a must. EFAs like Omega-3s are necessary fats that humans cannot synthesize, and must be obtained through diet. Omega-3s have a natural anti-inflammatory quality along with a whole complex of other health benefits. Research indicates that omega-3s may be better absorbed from food than supplements.

Wild salmon is a great source of Omega-3s, as are other fatty fish like albacore tuna, halibut, and sardines. Not a fan of fish? Flaxseed oil and Canola oil are good choices too. Or how about walnuts? Try a sprinkle of walnuts on spinach salad for a nutritious and delicious double dose of essential fatty acids. Summer squash, cauliflower, and broccolli are all very good sources as well.

Herbal remedies also aid in pain relief. Natural pain relief — like herbal medicine, is an increasingly popular way to manage pain.

• Turmeric is gaining great recognition as a natural painkiller. Why not try sprinkling some on that piece of salmon you are grilling up?
• Fresh ginger helps with inflammation.
• Capsaicin applied topically may be beneficial for relieving pain.
• Feverfew has been found useful for treating migraines.
• Ginseng is listed by the American Pain Foundation as beneficial for Fibromyalgia pain treatment.

If you are serious about trying herbal remedies for pain relief, I advise that you consult with your physician or a licensed herbalist who understands how powerful these herbs can be.

Soak on it

More and more research indicates that Fibromyalgia patients suffer from magnesium deficiency. Magnesium is extremely important to many functions in the body, and a deficiency can cause several of the symptoms associated with Fibromyalgia. There are great benefits in taking an Epsom salt bath, rich in hydrated magnesium sulfate, which is easily absorbed through the skin.

As listed on the Epsom Salt Industry Council website, here are some of the health benefits to be had from an epsom salt bath:

• Flushes toxins and heavy metals from the cells, easing muscle pain and helping the body to eliminate harmful substances.
• Relieves stress. Excess adrenaline and stress are believed to drain magnesium, a natural stress reliever, from the body. Magnesium is necessary for the body to bind adequate amounts of serotonin, a mood-elevating chemical within the brain that creates a feeling of well being and relaxation.
• Reduces inflammation to relieve pain and muscle cramps.
• Improves oxygen use.
• Improves absorption of nutrients.
• Improves formation of joint proteins, brain tissue and mucin proteins.
• Prevents or eases migraine headaches.

I don’t think we could ask much more from a simple bath! Epsom salt baths are so relaxing and therapeutic, I recommend you take two or three a week – more if your level of pain dictates. Before bed is a great time, as you will find yourself so relaxed by the natural serotonin boost, you will be able to gently drift off into a restorative sleep.

Just Breathe

Yoga, Qigong, meditation and many other mind-body practices teach the healing properties of purposeful breathing. Conscious breathing can actually change your body chemistry by increasing oxygen supply to your cells and prompting the production of endorphins, which are the body’s natural pain killers. Deep breathing relaxes the muscles and calms the mind.

In her book Yoga for Fibromyalgia, Shoosh Lettick Crotzer teaches The Healing Breath technique. To practice this, begin in a seated pose with your feet flat on the floor and your arms resting lightly on your thighs. Close your eyes, follow the directions below, and let your breath heal.

Inhale and exhale slowly, focusing on how the air feels as it passes through your nose, into your body, and back out. Think of your breath as the gift of life – prana: life force. Let it feel soothing as it flows inside. If you have general pain, visualize this healing breath filling your whole body. If your pain is more specific, on inhalations, bring the breath directly to your pain. Then, for either type of pain, let each new inhalation bring energy to expand and soften, cleanse and release, rejuvenate. With the exhalations, let the tensions and heaviness of your pain flow out with the breath. Breathe slowly, and continue until you feel quiet, heavy, and more relaxed. Come out of the pose when you are ready. Notice the difference you have made in yourself.

Mindful breathing will bring you more in-tune with your body. It is something we should all practice everyday, regardless of our level of pain.

Good Health Requires Mindfulness

Self care is critical in the management of Fibromyalgia. There is no magic pill that will reverse all of the symptoms we live with. There never will be. So instead of waiting for the magic bullet, we should focus on simple and manageable things we can do to help improve our health and wellbeing. It may take a great combination of holistic and natural remedies, combined with the care of our doctors, to really achieve optimal results. Be your own best health advocate and practice the Healing Breath technique, cook yourself some salmon for dinner, and then take a relaxing epsom salt bath. You are worth the effort.

From TheDailyPress.com

NEWPORT NEWS — A Virginia Beach doctor whose medical license was suspended last year after five patients in his care died is now teaching in Newport News. 

Rheumatologist Dr. Stephen Plotnick had his medical license suspended for 24 months in August 2008, and is teaching an anatomy and physiology course at Medical Careers Institute in Newport News, the School of Health Science at ECPI College of Technology.

Plotnick’s license was suspended after at least five of the patients he was treating for fibromyalgia died. The legal order between Plotnick and the Virginia Board of Medicine said Plotnick refilled prescriptions without examining patients and failed to insist, in some cases, on protections that are standard with the prescribed narcotics. 

The Virginia Board of Medicine’s findings also state that Plotnick let some patients “guide (their) own medication selection,” prescribing more than one drug and letting patients decide which to take and how much. In several cases, he kept prescribing the narcotics after patients, their families and other doctors complained that they were overmedicated or having problems with the medication, according to board documents.

If you want to read the full story click on the link above. Another bullet dodged. You’re welcome!

23/30

In their most recently newsletter, the main article was a feature on Fibromyalgia: Treating Fibromyalgia Naturally — So You Can Shine Again.  I found this to be the most realistic, in touch and accurate assessment of Fibromyalgia I have ever read. Several times throughout my reading of it I wanted to clap for Dr. Marcelle Pick, or stand up and bow. Here are just a few of the things she wrote that made me want to cheer her:

I see many women in my practice who feel discouraged and disheartened by the advice they’ve received about fibromyalgia. The sleeplessness, extreme fatigue, and widespread chronic pain that accompany fibromyalgia can be unbearable for some women, but the medical community has long been stumped by this confusing and controversial condition. It was ignored by conventional medicine for years, and in some circles fibromyalgia is still questioned as a “real” diagnosis. But fibromyalgia is real, and I know there are thousands of women out there who deserve compassionate and effective care. We don’t have all the answers yet, but pain specialists and functional practitioners are working to get to the root of fibromyalgia and similar pain syndromes, to give you the answers you want and deserve.

I think women with fibromyalgia deserve more than a prescription for their pain and suffering.

I see this as a condition that strikes at the very core of a woman’s being.

But you can feel good again, if you’re willing to roll up your sleeves, do some digging, and learn some new ways of being.

At this point in the article Dr. Skin goes into a very thorough discussion of Fibromyalgia and its underlying issues. She uses the word SHINE as an acronym for what she believes to be the main issues of FM – Sleep, Hormone Imbalance, Immune Health, Nutrition and Emotions. (Some of you may recognize this as a protocol of Dr. Teitelbaum, author of From Fatigued to Fantastic. I am very familiar with his name, but have yet to read his book. After reading this article I certainly plan to.) Dr. Skin also addresses Stress, Detox, Exercise and Mind-body Work. She shares a lot of valuable information in her article and is clearly invested in helping women with Fibromyalgia shine again.

Dr. Skin ends her article with encouragement and hope:

Find hope in your own light

We all glow in our own unique ways, and when we are feeling good, the world can feel our warmth and positive energy. I know fibromyalgia can dim this light, making us too tired, too discouraged, and too achy to find hope in anything, let alone feeling better. Especially if you’ve been told by your practitioner, or by several practitioners that there is nothing they can do — or worse, that your symptoms aren’t real — it can seem like you just have to live with this. But please know that you don’t have to live in pain, and you don’t have to be on a prescription medication for the rest of your life, either.

Fibromyalgia is a syndrome caused and influenced by many, many factors, and if you start to work on even one or two of these factors, you will find that light within starting to shine again. With this new hope, you can regain the energy to work on more aspects of your life that may be affecting your health — and in time, you’ll be enjoying each brand new day.

 

I encourage you to take the time to read the article for yourself. It is refreshing to read a perspective from a doctor who actually understands the many levels of Fibromyalgia, and hopefully you will decide on one or two factors of FM that you will want to work on. Articles like this go a long way in encouraging us to take steps towards better health and wellbeing. Thank you Dr. Skin.

15/30

I HATE DRUG COMPANIES! I hate that their sole purpose is to profit off the needs and health concerns of the public. I hate that they view every illness as an opportunity to line their pockets. I hate that they perpetuate a culture of sickness by treating symptoms and not caring to find a cure. Why would they ever want to find a cure. A cure would be disastrous to their bottom line. I hate that they find a way to create need through their marketing and sales techniques. I hate that they look specifically for disease and illnesses that are marketable. I hate that they have now zoned in on Fibromyalgia and that FM is now the newest, trendy marketable disease. Don’t believe me? Well then let me share with you what the company analyst for Savella had to say.

Savella is the newest FDA approved drug for the treatment of Fibromyalgia. Cypress Bioscience and Forest Laboratories are partners in the creation of Savella. Here is what their analyst had to say:

“With the approval of Savella, we expect Cypress Bioscience to become one of the few profitable biotech companies starting in 2009,” Citi analyst Dr. Lucy Lu said in a note to investors. “Moreover, we view fibromyalgia as a real and significant market opportunity, which is large enough to support multiple successful drugs given the heterogeneous nature of the disease.”

I have bolded and italicized the part of the statement which infuriates me. They are letting their investors know that they have hit the disease jackpot – a real and significant market opportunity. Fibromyalgia is a complicated and multi-symptom disease, heterogeneous if you will,  and no two patients experience it the same way. What a wonderful opportunity these complexities present to drug companies. Savella is just the beginning, but if Savella only treats the pain symptoms of FM, then they will have to create a drug to treat the fatigue. And once they have succeeded in masking the pain and fatigue of FM, well then they can work on another PROFITABLE drug for the brain fog and cognition issues. With a disease like Fibromyalgia the opportunities are endless, and that is exactly what Dr Lucy Lu was expressing to their investors in the above statement. She is promising them multiple successful drugs for the treatment of Fibromyalgia.

I feel physically ill right now, but I am sure they are working on a drug for that too!

Well this is one Fibromyalgia patient who refuses to line their pockets. Call me silly, or stupid, or stubborn, but I will not be a passenger on their drug highway. This is the main reason I have made the decision to battle my FM without the use of prescription drugs. In no way am I critical of those of you who are taking prescription medication to treat Fibromyalgia. I know personally of many people who feel they could not function without them. I am not saying that there is not a need for drugs and drug companies, but I am angry and disgusted with the monopoly they have over healthcare. I believe the more profitable Fibromyalgia becomes, the more pressure drug companies will put on researchers and doctors to NOT find a cure. My abstinence will not give them any less power, but for now it is the only stance against them that I can take.

But as a side note, if you are looking to diversify your portfolio, stocks of Cypress Bioscience Inc. surged 33 percent after receiving FDA approval for Savella.

1. I think I have that too.

2. My sister-in-law has fibromyalgia and she’s still working. She says it helps to take her mind off the pain.

3. But you look okay.

4. Is that a real disease.

5. Maybe you just need some B vitamins.

6. Do you have any percocet? I could sure use one right now.

7. Well, we all start to ache when we get older.

8. Can you hold this box for me? I can’t find my keys.

9. Does this mean you won’t live as long.

10. Well, just try to look on the bright side.

Linda Meilink goes on to qualify each thing on her list, and these clearly come from her own personal experience. But it got me to thinking. What has been said to me over the years that has just made me cringe? So here is my list.

1. Did you see that commercial for the new drug that cures Fibromyalgia? – Now this drives me nuts because, A) It does not CURE Fibromyalgia. It is an anti-seizure medicine which has proven to reduce pain in FM patients. B) Pain is just one of the symptoms of FM and it does nothing to address the others – fatigue, fibrofog, dizziness, sleep disorders, etc. C) It has its own list of side affects that some of us would rather not expose ourselves to, and D) I chose not to take prescription drugs to treat my FM.

2. Fibromyalgia is what they diagnose you with when they are not sure what is wrong with you. - ARGH!!! I heard this most recently from someone who was quoting his friend – AND HIS FRIEND IS A DOCTOR! FM is still under-researched and misunderstood, but it is real, and recent testing is going a long way to prove that. Now if everyone in the medical field would just open their mind to the possibility, great progress could be made.

3. If you would just exercise you would feel better. - It is not that simple. Yes, gentle exercise can be beneficial for fibromyalgia, but it can and does cause flare-ups. It is a matter of slowly building up your tolerance, but forgive us if we do not go out of our way to deliberately cause ourselves more pain. It really is a vicious circle. If you knew something you ate would make you healthier, but that you were going to throw up violently each time you ate it, could you?

4. You can’t be here by 10AM, how about 11:30AM? - Uh, no. When I am down, I am down. I will not magically get better in an hour and a half. But thanks for being flexible!

5. Well it is really common. - Okay, so does that mean it should be easier to deal with? Are you equating it to acne or ingrown toenails? I just don’t understand this comment. Pain may be common, but it is still painful. Common does not equal easy to live with. And part of what makes it seem so common is that it is currently being over-diagnosed, but that is for another post.

6. A lot of people are much worse off than you are. - First off, this is absolutely true. I have a lot of fortune in my life – friends, family, etc. But everything is contextual. This is my life, and this is what I struggle to live with everyday. Somedays I manage well, but others I am a total and complete mess. Does that mean that I am being insensitive to my neighbor who has terminal cancer? No, I don’t think so. It simply means I am struggling and could use a little empathy. So reminding me that it could be worse does not make me feel better, it simply makes me feel guilty for indulging in a little self pity.

7. How is your back? - I got this one a lot after I was first diagnosed 11 years ago. The original injury which brought on my FM was to my neck. I had never had issues with my back, and yet numerous people asked me this. Often the same person more than once. Pretty ungrateful of me to not appreciate their interest in my health, but it always confused and frustrated me. This is a much more appropriate question since the accident two years ago. My back is killing me right now!

8. Have you tried acupuncture? - I would love to try acupuncture, but who can afford it? It is not something you can do one time and reap the benefits of it. It is something you need to do repeatedly, and it is costly. I have not always had insurance, and when I have acupuncture/massage is not covered. It is too bad that holistic medicine is for the most part not covered and that it is so expensive.

9. Maybe you are just depressed. - For a lot of patients Fibromyalgia and depression do go hand in hand, and until recently many doctors believed that FM came out of depression, but that is not the case. Many women with FM have never suffered from depression. I have had some pretty low days, but I can honestly say that I have never been clinically depressed. FM has changed my life so dramatically I have had a lot of trouble adjusting and adapting. I have been mad, sad, angry, unreasonable, and a few times I felt close to losing my mind – but tell me, could you be physically tortured and never respond dramatically to it?

10. Silence. - No response is sometimes the worst response. I have had new doctors sit and smile condescendingly at me while I explained to them I have Fibromyalgia. They never say it, but I know they are thinking that it is not real, that what I am experiencing can be explained away, that I am weak, and a hypochondriac. They say a lot by sitting there saying nothing at all and I hate them for it. I hate their close-mindedness and their pre-judgement of me. I can never get past their silence.

So that is my list. What is on your list?

NOTE: My husband thought this was a little edgy and he could tell I was clearly not feeling well when I wrote it. The very nature of the subject tends toward negativity. I hope this is not too abrupt to read but I am choosing not to edit myself.