July Fibromyalgia Newsletter 2

Volume 1, Issue 5

July, 2008

Fibro Friends Forever Butterflies are symbols of metamorphosis. Fibromyalgia gives us the opportunity to change, grow and become stronger.

A l t e r n a t i v e T h e r a p i e s f o r P a i n m a n a g e m e n t T h i s m o n t h : C h r a n i o s a c h r a l ( F r o m

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Last month we discussed Acupuncture & Acupressure therapy as an alternative therapy for pain management. Please let me know if you had any questions regarding that article. Craniosacral therapy, an offshoot of osteopathy, it is a relatively new treatment technique that many fibromyalgia sufferers have benefited from. Using gentle palpations, Craniosacral therapy helps reduce symptoms of pain, headache, and fatigue. What is Craniosacral Therapy? Craniosacral therapy is non-invasive and uses gentle palpations on your skin in order to restore health, reduce pain, and increase resistance to disease. Craniosacral therapy was created in the 1970s by Dr. John Upledger, based on theories developed in the 1930s by William G. Sutherland. It is now widely used in North America. Theory of Craniosacral Therapy Craniosacral therapy is based on the idea that the Craniosacral system is directly related to your overall health. The Craniosacral system includes your brain and spinal cord, as well as the cerebrospinal fluid that surrounds them. Craniosacral therapists believe that the cerebrospinal fluid emits a measurable pulse as it rises and falls (called the cranial rhythmic impulse), much like your heart and blood vessels do.) A healthy pulse should measure between 10 and 14 cycles per minute. However, if this pulse is somehow interfered with, it will cause a number of nasty health problems, including chronic pain disorders like fibromyalgia.

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Craniosacral Palpation In order to treat disease and improve the overall function of your central nervous system, Craniosacral therapists locate and measure your cranial rhythmic impulse. This can be measured by placing the fingertips over specific areas of the body. Once your therapist has located the blockage in your rhythmic impulse, he can begin to restore it. This is done through a series of extremely gentle palpations. Your therapist will palpate specific areas of your skull, focusing on the connections between your skull’s bones. By palpating these bones, he will be able to restore a healthy cranial rhythmic impulse, thus reducing symptoms. Benefits in Fibromyalgia Sufferers There has been no extensive research on Craniosacral therapy in treating fibromyalgia. Many studies suggest that Craniosacral therapy is helpful for the first few sessions, but after that, it offers no significant improvement in fibromyalgia sufferers. However, Craniosacral therapy is highly regarded by many fibromyalgia sufferers. A large percentage have tried Craniosacral therapy at least once, and have found it to be extremely effective at reducing their symptoms of fibromyalgia syndrome. Craniosacral therapy is said to: reduce widespread pain; reduce the number of chronic headaches; increase range of motion; decrease chronic fatigue; improve mood

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The Treatment Session Craniosacral treatment sessions generally last between 40 minutes and one hour, depending upon your specific needs. It is usually performed in a quiet office or clinic and should be done by a trained professional. You are fully clothed during the session. You will be asked to lie down on a treatment table. Your practitioner will place her fingers over specific points on your body to measure your cranial rhythmic impulse. She will then begin to palpate your body. She will gently touch the bones in your skull as well as your spine, neck, and head. During the treatment, you may experience a variety of different sensations. These include: extreme relaxation (you may even fall asleep); temperature changes throughout your body; increased energy; immediate pain relief. After the Treatment It really depends upon the individual, but people often report feeling immediate and continuous pain relief. This pain relief can build up for as long as two weeks after your session. Some patients also feel uplifted and energized in the weeks following treatment. I have had one treatment. The relief in leg pain was amazing. It lasted for a couple weeks. I hope to try it again. Take care...until next time...Jodie In the next Alternative Care Article: Massage Therapy

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D i a g n o s i s

“I am sick and tired of being sick and tired!!! What the heck is wrong with me?” I would bet money that we all have said this. With all the symptoms going on you are probably thinking “OMG, I have Lupus, or Rheumatoid Arthritis, no, wait, it’s a muscle or nerve disease. Wait, maybe I am just anemic or I have a hormone imbalance.” Regardless, it is time to see the Doc.

symptoms, the doc will more often than not consider FM.

You go to your appointment and start to explain all your symptoms to your doctor and as you do, he starts writing out the orders for you to go have your lab work done. Tube after tube of blood is drawn. Then you have an x-ray or two. You are a nervous wreck because you know there is something terribly wrong. The pain, the fatigue, all the other crazy symptoms. It’s time for you to get your results. “Well doc, give it to me straight...what’s up?” Doc proceeds to tell you that there is nothing wrong and all the tests have come back normal. “What?!?” How is that possible? Unfortunately, this is how it has to go. There are no specific blood tests to prove that a person has FM. (yet) Having all these blood tests is still necessary though. It is a process of elimination the doc has to perform. Besides, it is possible to have FM along with any of the aforementioned diseases. When all the blood work comes out fine and you are still suffering from the

Anyway, FM diagnosis isn’t easy and it is frustrating as HECK. We tend to keep on searching for a more established diagnosis. Ya know, the whole “there’s gotta be something else” rouI also did some reading about a new blood test tine...it can’t just be FM. Wait, hold on there sweetie!….don’t say JUST! Just because there in regard to antipolyme antibodies. (http:// are still some Dr.’s out there that are narrow arthritis-research.com/content/9/5/R86) minded about FM, doesn't mean that they can down play FM. FM is a big deal and it causes Another form of testing is hair analysis. (http:// many people to be disabled. Oh, wait, I have to www.fibromyalgia-symptoms.org/tests/ get back on track….this is a whole other article hair_analysis.html) We will discuss more tests direction here….. next month.

Hopefully he will consider the FM before he considers you to be crazy. When he tells you that there is ‘nothing’ wrong with you ‘physically’, what is it he is trying to say? That ‘mentally’ you have something wrong? Make sure you are talking to a doc that is sympathetic and not make you feel less than you should. Your pain and suffering needs to be validated.

I personally feel that FM is a neurological condition. More and more studies show this as well. I am now going to a neurologist and I had my first visit last week. She confirmed my FM on the first visit. (see the email attachment

“My Neurologist's Diagnosis) Next I am set for a bunch of blood work, Some new blood tests that I have already had and some that I haven’t which includes a B12 level test. I am also scheduled for a nerve conductivity test on my arms and legs. I will keep you all informed. It is almost like starting over and I am not sure if it is good or bad….both I guess.

You have been diagnosed with Fibromyalgia… So have I. Know what? It sucks! Know what else? You and I together will deal with it. We won’t let ignorance get us down. Education is the Key to Our Health. Don’t forget I am here for you...FibroHugs-Jodie

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10 Ways to Incr ease Pain Yes, you read that right...10 Ways to INCREASE Pain... We are always looking at ways to decrease our pain. I thought it was funny when I came across an article that discussed the top 10 ways to increase our pain. Yeah, that is what we want to do, right?…LOL!!! So my FibroFriends here is another way to look at how to take care of ourselves. Looking at it in reverse. Some of us need to think backwards...LOL!!! 1. Over-do Activities-The more I can accomplish the better off I am. (Yeah right) 2. Do Not Rest or Relax A Fibromites activity should be balanced with rest and relaxation. Without periods of rest and relaxation, our bodies rebel and send pain signals. The level of intensity we try to maintain by not resting or relaxing is where we get that vicious cycle of fatigue pain - more fatigue - more pain. 3. Do Not Exercise-I hate exercise…..but even I do some light stretching and swimming.

4. Skip Medications-With Stephen around, this will never happen. We all react differently to different meds. The docs prescribe meds in a specific way that is supposed to benefit us best. 5. Get Inadequate Sleep-Sleep? Who needs sleep? In the May newsletter I had an article “Deep Sleep as a Pain Reliever”. Get Some Sleep!!! 6. Gain Weight-No problem, I can do that… Even some of the meds we take will cause us to gain weight. Managing weight isn’t easy, but even watching those 10-15 pounds I put on with the Prednisone the 23 weeks I had to take it last month makes a difference. 7. Don't Protect Your Joints-I need to protect my whole body…LOL!!! 8. Pile on More Stress- Yeah and tell everyone that you will help out with whatever it is that they need. Bake those 2 dozen cookies for the class party, as PTA President meet with the school board this week,

take over for the 2 co-workers out on vacation, coach the soccer team this week, babysit for you sister this weekend, etc, etc, etc. Stress and the immune system play hand in hand. Stress=weakening immune system=pain and fatigue=stress about not feeling well=added stress=well, you know the cycle 9. Pessimism Provokes Pain-This one I have to be serious about. There is no need to feel hopeless. Back to what I am always saying “You are NOT alone”. There is hope and life even with a chronic pain condition. 10. Focus on Unproven RemediesThere is NO known cure to FM. If you have other chronic pain disorders, then you have no doubt discussed them & the remedies with your doc. The facts remain. Don’t buy into those horrible people out there that are taking advantage of others pain. Doing so will just take more out of you than you have to give, both financially and physically. Ok, now that you know how to bring on more pain, GO FOR IT!!!.....Just kidding. Seriously though, when you look at it from this perspective, doesn’t it make you want to laugh a little? We fibromites can be so freak’n stubborn sometimes. Just ask Stephen…FibroHugs...Jodie

FM, Chronic Pain & Relationships Among other known and unknown issues, I have fibromyalgia and chronic fatigue. I am always doing more than I am suppose to and I am not the type of person to continually complain about it. I do like to advocate it. But, not complaining has been part of the problem. I ignored my body for so long, pushing it to do my own plus usually 2 or 3 other people's responsibilities day in and day out. I didn't bother talking about how bad I felt most of the time until I found myself in the ER after passing out at work. Once I knew I wasn’t going to return to work immediately, my boss and I talked and he was concerned about my recent job performance due to some cognitive problems I was having. He wasn’t sure how to approach me about it. Hmmm, constant pain, fatigue, cognitive problems…..anyway, needless to say I had to step down from that job. Doing so affected my life tremendously. My relationships, my marriage, my family

and friends were all confused. My husband at that time came to resent me for “loosing” this job. This job had great financial rewards. I loved this job. I loved working. I am not one to NOT work Some people go on and on about their problems. We each have our own style of coping with this crappy condition. But what is it that I ALWAYS say? Remember that you are NOT alone! We are in this together. I am not the only one in my home that suffers from health issues. Stephen has his own issues, plus he takes care of me. This is a chore in itself. It is easy to forget about being compassionate for the other members of the household when we feel so exhausted and sick ourselves. Don’t forget about them. They need it more than we do most times. I was going through this illness for sometime before I knew it. Suffering and not understanding what was happening.

There was ‘cause and effect’, but I wasn’t realizing it. I lost a marriage, a house, a career, and other relationships to this illness without understanding what was happening to me. I now have a different life, a new life, amazingly enough, a strong happy life. I am still suffering, but with understanding and knowledge. I believe that education is key to our health and I am living proof. This illness is very difficult. I believe it makes us stronger. Anyone who can survive what this illness does as far as taking away is my hero. Next issue I will discuss some tips that will help in our relationships. Until then, Love one another unconditionally. Live with each other with understanding. Laugh with your loved ones uncontrollably. Thank you Stephen for giving me the opportunity to do all of these...

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W h a t ’ s A n d This past week I went to the Neurologist for my FM. I have felt for some time that FM is a Neurological issue and finally my doc gave me the referral I have been asking for. It amazes me what I know in comparison to my regular doc. Anyway, guess what test she is requesting??? She wants to test my B12 levels…..I couldn’t have been more thrilled!!! In April I had read an article regarding B12 and I was so excited about it that I contacted the editor of the online magazine to get permission to print it for you. Ms. Glaseen was very agreeable to allowing me to reproduce the article for you. Well my Fibro Friends, so you could get the full effect of this great article I decided to include it as an attachment in the email along with the newsletter. So click on the extra attachment so you can read the article: The Vitamin B12—ME/CFS/FM Connection: A Key to Improved Health for Many? This article is reproduced with permission from the April 2, 2008 issue of ProHealth’s FM HealthWatch e-newsletter. Thank you Janet! Next in the news: Did you get my email regarding Cymbalta? Well, was I not surprised?!? Just yesterday my “new” neurologist told me Cymbalta

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The more reading and research I do about FM and other pain conditions the more I read that exercise in some form is important. It strengthens our muscles and prevents further injuries. Eventually, the pain from the exercising is

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wasn’t yet approved for FM...LOL!!! And she almost had me convinced to change to another med….I said I would like to wait since I had just started it I wanted to give it a chance...plus my insurance just gave me the ok to have me get it through the pharmacy instead of just samples from the doc. She was just concerned because it wasn’t yet approved as an FM drug. Hmmm…..I will attach the announcement for that as well. Do you have CFS? There is some new information on the CDC.gov website regarding new treatment guidelines. I have never read the info on the CDC website regarding CFS or FM. I found it quite interesting to see how the government looks at these. Check it out. I think we have previously discussed natural sleep remedies. Maybe in emails and not in the newsletters, but I thought I would mention that recently, my kids, who have unfortunately inherited my inability to fall asleep at night, have tried two OTC natural sleep remedies. Sleep MD and Rapid Sleep. For some reason, the Sleep MD doesn’t work for them but the Rapid Sleep does. Why am I

suppose to decrease.

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Exercising with a Chronic Pain Condition Just the thought of exercising makes my body hurt. I mean really, if I do too much of any physical activity, I wake up the next morning feeling like I have been hit like a Mack Truck. Just so you know, as much as I hate exercising, I have implemented a sort of stretching out to my daily routine as well as swimming a few times per week.

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mentioning this? Just as a reminder that what may work for one person may not work for another. Please remember this when I discuss medications and other therapies. Thanks.

Not New in the News…………

You are Never Alone!!!!!

All material in this newsletter is provided for information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this newsletter. Instead readers should consult their physician or other qualified health professionals on any matter relating to their health and well-being. Readers who fail to consult with appropriate health authorities assume the risk of any injuries. The publisher is not responsible for errors or omissions.

Body Care Corner

There are many different types of exercise. As I mentioned before, I Everyone is different. There are stretch and swim. There is also days that the thought of moving or Yoga, Strength Training, Low even actually moving is just too Impact Aerobics, Walking, Stationmuch and for some doing exercise ary Biking, etc. Whatever it is you could put them down for a week or try, keep it simple. It is hard two. Each person should discuss enough to stay motivated to exerexercising with their doctor. cise, much less to have a chronic pain condition and have to exerFor most, the benefits of exerciscise. Another tip to keep motiing include: vated is to set small goals and Increased muscle strength what I have found helpful is to Decrease in pain track my progress. Weighing, Prevention of further bodily measuring, and timing myself. injuries Using these to track my progress Better quality of sleep helps me keep motivated. I didn’t Increased energy say I stayed motivated for long Less stress periods of time, I just said that it Improved sense of well being helped me to “keep” motivated. Two more important things I can

think of to keep on track would be to exercise with a friend and last but not least, DO NOT be too hard on yourself. Start off with teeny tiny little exercises. Seriously!!!! Anyway, this is my take on exercise. This section of the newsletter is still up for grabs. LISA?!? Let me know when you are ready. Ok…lift your arms and stretch for 5, 4, 3, 2, 1 and we are done…… FibroHugs…Jodie

Fibro Friends Forever has been created for P A I N

M A N A G E M E N T S U P P O R T

Fibromyalgia and Pain Management Awareness. Its mission is to help those with FM & chronic pain disorders to change, grow and

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become stronger. Our goal is to make every-

Phone: 559-756-0894 E-mail: [email protected] myspace URL: myspace.com/fibrofriendsforever

fibromyalgia (chronic pain) on a daily basis.

one aware of the issues that face those with Education is the key to our health. Along with informational services, we provide email sup-

change, grow and become strong

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port group services.

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“ yo u ”

Last month a question was asked regarding Ribose. Susan is one of your fellow Fibro Friends. I would like to thank Susan C. (New Jersey) for writing back and contributing to this months newsletter. With her permission, I give you the following: “I’m sending you a big hugggggggg. Hopefully you hired movers or moved from a minimalist apartment to a house? I read the newsletter, and you are right on the money. I tried D-Ribose (beet sugar) and I ended up diabetic too, soon after that. I think, looking at FM from a trained background in the physical body, that it is a metabolic disorder to fats and proteins as well as carbs that happens from the breakdown of ATP (adenosine triphosphate) for the use of energy in cells. I think this is part of the weight gain that goes with it too…lowered activity due to pain, combined with exhaustion, combined with trash in every cell filling it up. Something goes wrong with the P, and it piles up in cells, causing cellular toxicity (thus the random pains anywhere anytime). It would seem that the mitochondria of the cell is not working right to give the “power” chemically from the ATP, and then the endoplasmic reticulum of the cell is not taking the trash out. Think about it like a bounced check…the bank redeposit's it over and over again…maybe 50 times in a day. Each cell goes through this energy phase many many times, and the phosphates fall off and pile up like trash inside the cells. I STRONGLY urge you, if you have a lot of pain, to try guaifenesin. I have a friend in pharmacology who told me it is the only thing known to all of medicine that helps the body excrete the phosphates buildup. It works to get rid of the pain, by ridding the body of the phosphates, but you are supposed to be able to metabolize them for some use in your body, thus this is why you are still stiff, and tired, even if you combat the pain. It is a disease of a metabolic type of origin. Another reason I think it is metabolic…scientists have for many years known that putting a person from a cold climate into a warm climate and not changing exercise or diet factors, the person will lose 10-20 pounds of body fat. All the baseball training camps are in Spring in Florida for the same reason. It gets them in shape a lot faster. Me, being a diabetic and a FM sufferer…put me in the warm climate and I have no sugar issues at all, and I have no fibro issues at all. It is like being 19 again, if you can believe that. I’m pretty active, and on a two week vacation, I have taken off as much as 12 pounds just being there. It would seem to be, that given this factor of heat added to the equation, and heat speeds up reaction time, that some chemical reaction is not functioning at proper speed. Either there is a lowered amount of some hormone/acid/protein…something on that basis, or it has something to do with the hypothalamus and your body temperature. My body temp is a constant 97.4. I also notice that all my pain goes away if I eat something salty, perhaps because heat is raised? Although, I do try to limit salt intake for diabetic reasons. I also have not met a single person who wasn’t a very active person before this occurred. I know a gymnast with it, I know a pro ice skater with it, I know a marathon runner with it, and I am an avid distance swimmer with it. We are all women. I think it might have to do with how we have moved women into physical activity and sports today. In our grandmother’s day, exercise for women was rather passive, and maybe we thought it was because of Victorian fickleness, but maybe it has a “factual” basis. FM has been on the books as a disease since the 1880’s. I strongly believe that my father’s mother (died in a mental asylum) had a bad case of fibromyalgia. My dad told me a story about how there were two sofas in the living room, and he and his dad slept there. His mother slept upstairs. It was so they had enough time to hear her banter and run away from her as she wielded shoes and things in agony. I suspect she didn’t sleep well, and she probably felt and perhaps thought somebody did something to her in her sleep when she woke up in that FM pain. I suppose if I was living in the 1930-1950 time era, I might think the same thing. Silverware was kept in a metal tackle box with a padlock on it until dinner time. Apparently, she didn’t suffer too much at dinner time… oooh, isn’t that just like FM??? It is an AM disaster plan, I think. I also wonder when you see these women in the Olympics fail for drugs after the fact…(and the men for that fact too), is it because of Oxycontin for pain??? Third thought on FM...in regards to nutrition in the USA . In our grandparent’s time here, a handful of peanuts had a daily supply of magnesium in it (from the soil it is grown in). Today, it would take 1.5 tons of peanuts to get the same levels of magnesium from the nuts. Our soil in the US is VERY depleted. Overfarmed. No field burning to develop magnesium (ash) due to EPA clean air acts. We are and have been competing worldwide with countries that have three and four growing seasons to our two, and we have to push more use of the soil to get the commodity contracts. The two foods containing the most magnesium…peanuts and chocolate. Chocolate has been overfarmed around the globe also, and perhaps suffers the same issue. I have found that supplementing my diet with magnesium has helped get rid of joint pain associated with FM. Specifically joint pains. Perhaps women suffer from malnutrition more than men? Maybe too, if we didn’t need to look like Barbie Dolls and could look any way we wanted to look, we might get proper nutrition. The issue is nutrition in a sane amount of calories, given the soil conditions. I think this is a BIG issue. I also think the lack of magnesium in the peanut crop of today has given rise to the peanut allergy epidemic, because magnesium reduces allergic reactions. Can anyone answer why we could eat peanut butter sandwiches as kids and not have any peanut allergy issues, and now there are kids with a deadly allergy just to the smell of it? I’d be the first person to tell you that magnesium in your diet reduces allergies…I ALSO have einosinophilia…an extreme form of allergies.. I only started supplementing with magnesium as of 01/01/08 (part of my N Yr res and a good memorable “benchmark” to see if it was working because it was a date I could easily remember even in FM fog). I have noticed dramatically reduced allergies. Even foods I couldn’t have, I can have with no reaction (oh, and there are a TON of those!!).. Fourth thought…best medical advice that I have seen results from, comes from “Bottom Line Health” magazine subscription. I read lots of things, but that advice is so dead on, and the proof is in the blood work. I hope you enjoy your new home.”

Susan, I LOVE my new home!!!!! Thank you so much for your letter.