Fibromyalgia: First steps after a diagnosis

from the Chronic Pain Health Center

The days and weeks after you’re first diagnosed with fibromyalgia can be a whirlwind of emotions. You may feel anxious about what’s to come, angry that you have a chronic illness, sad that your lifestyle might have to change—or even happy to finally have a diagnosis! Here are some things you can do to feel more prepared and supported.

Coordinate your health care team
Chances are you’ll have multiple health care providers (HCPs)—possibly working at separate facilities—treating your fibromyalgia. These can include a primary care doctor, rheumatologist/neurologist, pain care specialist (i.e., anesthesiologist, physical medicine specialist), psychologist and physical therapist, some of whom you may see more often than others. Coordinating with your health care team may help ensure you get the best treatment.

Make a contact list of all your HCPs to distribute to each of them, and request that they coordinate with each other on your care and share information as needed. Take the time to connect using email if possible, phone if necessary—whatever it takes to keep your team informed and united.

Consider a “whole patient” approach
Fibromyalgia will likely affect many areas of your life, and unfortunately there’s no “one thing” that will make you feel better. Many experts agree that a “whole patient” approach—one that encompasses mind, body and environment—is the best way to treat and manage the condition.

A “whole patient” approach usually encompasses many areas of influence and types of treatment. Your HCPs may work to help you develop an exercise routine; teach you meditation, visualization or other relaxation techniques; craft a healthy diet; find a balance of appropriate medications and/or supplements; use massage or physical therapy to help with your pain and mobility; and much more.

Adopt pain management strategies
There are many approaches to pain management. Your HCP will likely review several different options with you as you work together to find a combination that gives you support and relief. While many pain management strategies may start with medication, they may expand to include other approaches such as relaxation techniques. For example, relaxation training with biofeedback techniques can teach you to identify pain centers and neutralize them with techniques like deep breathing, visualization or meditation. Conventional treatments such as heating pads and cold packs, as well as warm baths, can help relax both your mind and your body while reducing pain.

Learn about medications
While complementary therapies may offer relief, there are also medications available to treat fibromyalgia. In recent years, the U.S. Food and Drug Administration (FDA) has approved three medications specifically for the management of fibromyalgia.

Your HCP may also suggest other medication options to help manage pain and address any additional issues you may experience.

If you’re juggling a variety of medications, you can use tools like daily/weekly pill organizers—or high-tech tools—to stay organized and ensure you’re taking medications correctly.
Ease into exercise
If you’re exhausted and hurting, it may be hard to get excited about exercising or any physical activity. You might be surprised to learn, however, that many HCPs recommend low-impact exercises like gentle swimming, walking, cycling, and tai chi to help ease pain and fatigue—and this can also help to raise your spirits. Stretching can help keep you limber. It’s important to remember that easing into exercise may have ups, downs and plateaus—so cut yourself some slack. And, be sure to discuss any exercise goals with your HCP before starting. 
Keep thorough medical records
Maintaining accurate, organized medical records can play a big role in minimizing the stress that can come with a chronic illness. Organized records will make it easier to speak with your insurance company or Medicare/Medicaid; help you remember what treatments you received, and when; and enable you to chart your long-term progress.

So dig out that shoebox of paperwork from under your bed and start organizing! You may choose to sort your records by service date, HCP or facility location; some people prefer paper, while others like to create accompanying digital records (like spreadsheets) to track expenses. Determine the system that best fits your personal style and stick with it.

Manage personal relationships
Fibromyalgia can have a significant impact on your personal relationships with family and friends. You need a good support system, a team to cheer you on when things are tough and to keep your attitude positive.

Just like other big life events, diagnosis with a chronic illness like fibromyalgia may bring out the best—and worst—in the people around you. As you share your experience with friends and family, take the time to strengthen bonds with those who show empathy and patience…and don’t be afraid to build healthy boundaries that protect you from those who don’t respect your experience and needs. Over time you’ll create a team that motivates and supports you, through good times and bad.

A chronic pain condition can be a struggle to manage. But, in so many ways, the outlook for people with fibromyalgia has never been better.  Today, experts understand better how to diagnose, treat, and manage fibromyalgia symptoms. Together, you and your health care team can develop a strategy that works best for you.

References

Arthritis Foundation. Fibromyalgia Treatments. Accessed on September 8, 2009. http://www.arthritis.org/disease-center.php?disease_id=10&df=treatments.

National Fibromyalgia Association. Treatments. Accessed on September 8, 2009. http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_treated.

Mannerkorpi, K. Physical exercise in fibromyalgia and related syndromes. Best Practice & Research Clinical Rheumatology. 2003: 17(4). 629-647.

Henriksson KG. Fibromyalgia–from syndrome to disease. Overview of pathogenetic mechanisms. J Rehabil Med. 2003;89-94.

© 2009 HealthyWomen All rights reserved. Reprinted with permission from HealthyWomen. 1-877-986-9472 (tollfree). On the Web at: www.HealthyWomen.org.

EIGHT DROPS OF OIL TO A SANER LIFE

“With the increasing demand for holistic health care and the ‘green revolution’, the demand for aromatherapy will increase, and hopefully we will reach the point where medical doctors incorporate it into their repertoire. It will become routine for doctors to send culture samples to the pharmacist for testing, and identify the relevant aromatherapy for the patient. The stress-relieving properties associated with aromatherapy make it an indispensable part of health care.”

-Robert Tisserand, of London, England

Today, when I went to the chiropractor, she told me that there was a cancellation with the massage therapist who works with her and she has certification regarding aromatherapy oils.  I immediately took that appointment and met with her hoping I might learn how these oils can help with my chemical sensitivities.

And what I found most interesting was this woman’s caution never to use more than 25 ml of oil per day.  Any more than that can be toxic!  That information I need to pass on to a woman I know since she burns those oils often.  Anyways, this woman says she is careful not to use the oils very often at home since she is exposed to them at work!!  There are even some oils pregnant women shouldn’t use and of course if they are used for young children the amount used is  reduced.  Therefore, the first thing I learned today is that it is not like burning a scented candle.  These oils have “power” and that power must be used with caution and with knowledge.  Therefore I am glad I didn’t just decide to call a store that sells these oils and just try something!

This woman I spoke to today doesn’t sell oils but she gave me an idea of how much each one she recommends should cost so that I make sure I purchase a quality oil.   I thought it would just be easier to order the same oils she does and now I am in the process of getting information about the company New Directions.   She recommended 3 oils to combine and one of the small bottles costs $50.00!

I asked her if her patients with MCS have had much success with the use of oils and she said yes, but the people she has treated haven’t had as severe reactions as mine..  More commonly their eyes burn and they get headaches and their reaction doesn’t last very long.  However, I’m thinking that even a little improvement is good and so I have decided to try using these oils.

When I asked how to use these oils, she said I could burn 25 ml every day or just add it to some cream, or just purchase a spritzer and spray it on my clothes or on my wrist. Initially, I thought I was looking for an oil just to use when I entered an airplane or store or new building, but using it every day means that that sensitivity should always be lowered.  This is a great advantage I won’t have to remember to spray some oil on me just prior to entering a building.

Well, one thing my husband and children will attest to – I have certainly tried a lot of different treatments over the years on this quest for health!   And here goes one more interesting venture!!

today's a bad day...

Blue skies and windy outside and I am still laying down for the fourth day in a row. I think I have become a professional facebook gamer. It’s a good enough distraction from the pain, but it is starting be a constant reminder that I am doing nothing.

I stare outside the window and pretend I’m looking at the ocean. I wish I were scrapbooking or capable of reading a book. For all the hours I have sat and played facebook games, I could have completed many scrapbooks or read books that could enrich my life! It’s my life wasting away and it is THE MOST frustrating experience ever. I’m too anxious to read and I’m in too much pain to sit and scrapbook.

The last 3 days I have been in a deep depression. I feel like I am in a dark cave and I can’t see my way out. The fibro Twitter gang that I follow have been great! I feel like they can relate to what’s going on. My friends are worried and I feel incredibly sad about that, I just don’t know what to say or do. My husband is worried and I’d like to just snap my fingers and feel better. It just doesn’t work that way. I have to claw my way back to the light that is reality and make myself feel again. I feel broken.

I know I will have days that are good and days that are bad. I’m looking for my next good day to come soon…

Thanks for reading… stay cool!

REST IS A FOUR LETTER WORD

I am still trying to recuperate from my exposure to multiple chemicals and this morning I began the treatment protocol to pull out more mercury from my body that seems to affect my body adversely.   I am not struggling as much as I was on the weekend but enough to require lots of rest.  Greg came home for lunch and as he was getting ready to leave, I was just laying on the sofa.  He came in the family room to say goodbye and to remind me to just go to bed and get lots of rest this afternoon.  I smiled but said, “ The word rest has become another four-letter word to me. In fact, I am ready to use other four letter words than the word rest!”  He joked, “I wouldn’t blog about that!!”  My response was that I didn’t think I would blog today since I doubted I would have anything too positive to write!

And yet here I write!  I know from past experience, these are the days when I need to remind myself I have gone through setbacks lots of times and I have pulled through them.  I need to remind myself that I am resilient and that nothing is going to prevent my goal of getting healthy .  These are the days when I must assess my priorities.  Do I want to get well and do what is necessary or do I want to whine and rebel and do things that can jeopardize my progress? On these days when I am attacked by doubts and fear that I am setting myself up for disappointment, I must choose to rebuke those thoughts.

I am really not the kind of person who uses profane four letter words, but my comment was my way of expressing frustration and impatience.  However, perhaps I wasn’t so wrong when I made my retort to Greg.  I do need to replace the word REST and instead focus on other four letter words such as HOPE,  LOVE, and  PRAY!

PONDERING ON PASSIONATE PURSUITS

As Greg and I watched the one man play, Ben Franklin: Unplugged in Portland, I became fascinated about what helps clarify a person’s passionate pursuits. Ben Franklin, always a strong Loyalist, became passionate about breaking away from Britain after one devastating and humiliating circumstance. He waited several years to be able to speak to the Crown and to the Courts regarding the grievances of the Americans, but when he was finally called, he was treated with scorn, contempt and judgment.  He left in a complete outrage determined to use all of his resources to separate from Britain.

A less dramatic illustration of how a person can find his passion was revealed by the playwright   himself.    As he was standing in front of the mirror one morning, he noticed he actually looked a little bit like Ben Franklin!  This revelation lead him on a passionate journey researching this man, which of course lead to the current monologue Greg and I were watching. This playwright also soon realized that his passionate focus on Franklin’s relationship with his son was due to his own personal  needs as he was wrestling with his own relationship with his father.

A final illustration of how a person finds his passion was when this playwright met the renowned Ben Franklin scholar Claude-Anne Lopex.   He was surprised to learn that she wasn’t a traditional scholar who had accumulated many degrees, but had gained a respected credibility just by her own personal, avid research of this man. She told him it all started when as a bored professor’s wife, she wandered into the university’s Rare Books Section of the library. During a discussion with one of the professors, he learned that she could read and write French and he desperately needed someone to translate the letters of Benjamin Franklin during the years he was living in Paris, France.   She says, “I really just fell upon my passion.”

Most motivational books tell us to discover our passions by answering two questions:  What did you enjoy doing as a child and what activities would you gladly do without receiving any money?  After watching this play, I think several more questions could be asked.  What makes you angry or even outraged and do these emotions reveal something you are passionate about?  When the playwright Josh Kornbluth looked in the mirror and thought he looked like Ben Franklin, he began his passionate interest in this man.   If you looked in the mirror and believed you reflected the image of Jesus Christ, what would be your passion?  As this playwright also discovered, his passionate interest revealed some of his own personal needs.  Are you aware of any particular personal needs that could be clarified through a particular passionate pursuit? .

Probably what speaks to me loudest is Claude Anne Lopez’s success without the “required” degrees.  I too often put a “cap” on any of my interests since I often believe I am not qualified.  I also put a limit on my passions when I decide that I shouldn’t think about them while I am ill. Certainly how I pursue my passionate interests and to what extent must be determined by health issues, but the actual passionate interest doesn’t change.   I am hoping that these observations will help me finalize my mission statement as I am currently stuck in Chapter 2 of Jack Canfield’s book The Success Principles!

A Must Read For Health

For all you holistic types out there, and for anyone who wants to be healthy, wants to remain cancer free, wants to detox from environmental toxins, or who want to cure cancer, please read this:

Important Thing To Read

What corporations including big-pharma and big-medicine do not want you to know is that much if not all of what we need to remain healthy exists naturally in our environment.  We are creatures of the Earth, and she is there to take care of us if only we let her.

Too bad we don’t take care of her.

I Feel Like I'm Fried and Crispy

So today I went to yet another Doctor’s appointment, you know cause I just enjoy them sooo much right. This appt. was ordered by disability, because of corse disability doesn’t believe my doctors could be right when they say I can’t be under fluorescent  lighting.  It’s so frustrating having an illness that makes it hard for me to go out in the first place and then they have me sit in the doctors office under the lights for two hours as the pain gets worse and worse, feeling like my skin is burning hotter and hotter.  I don’t know if the office’s do this so that they can see my reaction or if their just being cruel but I’m god dammed  tired of it. After the Dr. brought me into the exam room and started examining me, my body flared so bad  I screamed. I didn’t mean to scream but I couldn’t help it, it just really hurt.  I don’t want to go through this process I just wish I could be better! I want my life back so badly!   Rich was really wonderful! He sat with me the entire time, and when I was really dizzy from the pain and he helped me off of the exam table and took care of getting me into the house when we got home. He is sooo wonderful always taking care of me. I wish the world would go to a different kind of light instead of compact fluorescent. LED lights are always a great option for everyone instead.

Walking on Water

(I wrote parts of this at the end of summer)

But when Peter saw the wind, he was afraid and beginning to sink he cried out, “Lord, save me.” Jesus immediately reached out His hand and took hold of him, saying to him, “O you of little faith, why did you doubt?” And when they got into the boat, the wind ceased.
Matthew 14:30-32
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We are playing boggle. I am winning against my dad and stepmom. But I am still trying to frantically find words, hoping that if I focus on the small board in front of me and the pen in my hand, I won’t think of the pain radiating from the base of my spine upwards. As I defend one of my words (roe, meaning fish eggs), I press my back up against the chair, my posture as straight as possible. We play for an hour before I admit that I am in pain. “I think I am going to pass out,” I tell my dad. “Or throw up.”

When I wake up, the pain is worse. In five days, I am supposed to go back to school. In a week, I am supposed to be in a wedding, to walk down the aisle, and dance. I can’t even sit up. I came home this summer to get well, to focus on my health. I cancelled my summer plans in order to see doctors and take care of myself. I told myself, and the Lord, that I would be well before the next school year. I gave myself and the Lord a time table. Twelve weeks. After eleven weeks of seeing some improvement, the twelfth week leaves me wrecked. I am worse than I was at the beginning of the summer.

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For my most of my life, I have been sinking under the weight of lies I believe. They are heavy iron shackles, bonds tied to my neck, my arms, my legs, trying to pull me under. The tide is strong and the undercurrent irresistible. But I swim hard. I swim until I am tired, until my arms and legs stop moving.

When I finally look up, I see Jesus walking on water. He is the most beautiful thing. My amazement, my love for Him, and awe at His sacrifice, give me new energy. I kick my legs; I move my arms. I swim and I swim hard towards Jesus but those old bonds are heavy. Though Jesus freed me on the cross, I choose to hold onto those lies with fisted hands. When I think, “I am worthless,” I know Jesus thinks differently but I let the lie weigh me down. When I see others walking on water with Him, I think, if I only swim faster, better, harder, I will get there too. Sometime I rise a little higher in the water and I can breathe more freely. But other times I grow so tired that I sink, until I struggle to draw in air, believing lies and wondering why I can swim so close to Jesus and not feel the miraculous weightlessness others feel.
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I should be freaking out. How will I move in to school? How can I even go to school? What about the wedding? I have spent the whole summer stressing about every little thing, knowing that stress makes my condition worse. But for the first time, I am calm. As I lay in my bed, unable to move, I consider the fact that I am twenty one years old and this is my life. But I am not angry or bitter or even upset. The fact is, since I became a Christian, I have claimed that God is the only thing I can depend on. I have claimed to walk by faith. But now, I cannot depend on my health. I cannot depend on my body. I can’t even walk.
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One day, my legs stop working. My arms forget how to paddle. As the storm rages, I sink. I can’t see Jesus over the rising water. I try to hold my breath or beg my body to work, but I can’t. My body, my strength is used up and I tossed by the waves and wind. Now I cry out to Jesus, “Lord, save me!” I can’t swim on my own. I am too tired, too broken.

He reaches out right away. He sees me through the wind and the water. He pulls me up. He holds me in His arms. He asks me why I doubted Him and I have no answer, because standing on the waves, walking with Jesus, this is so much better. I watch my bonds sink to the ocean floor, safe in my savior’s arms, knowing if not for Him, the chains would have taken me with them. When the winds calm, I do not go back in the water. There is nothing for me there and besides, my body can no longer handle the current. I rest in Christ’s arms–rescued, saved, grateful for my failure.
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At this point, I consider my health problems to be a blessing. Though I have been a Christian for several years, I didn’t understand what it meant to walk by faith. I thought I did. I read my Bible everyday and I grew spiritually. I told people about Jesus, that He is the only thing I can depend on. I believed in Him and I loved Him. But I didn’t see, I didn’t understand that I continued to carry burdens I had no business carrying. I stressed over my family and school. I was the classic overachiever. And though I prayed about these things, though I thought I was giving them to the Lord, I wasn’t. Somewhere deep inside I still thought that I had to do the work, that I had to be better, stronger, that I had to fight the current and keep my head above water.

The problem was, for a long time, I was good at it. If I worked hard, I excelled. If I put my mind to it, I could do it–whatever it was. But after years of this, my body finally said, “No more.” Very literally, I could no longer survive, let alone thrive, on my own strength. In the twelfth week, in the midst of the worst flair up of pain I’d ever had, someone told me that this was an opportunity to my full weight on Christ–not just one foot or two–but everything I had. That day, in my bed, I read 2 Corinthians 12. Paul asks for the thorn to be removed from his flesh three times and God says no. The Lord tells him, “My grace is sufficient for you. My power is made perfect in your weakness” (12:9).

The reason I consider my health problems to be a blessing is because they have literally forced me to rely on the sufficiency of God’s grace. Literally, I cannot depend on my body. But whether I am riding my bike or unable to move, God’s grace is always sufficient for me. I can walk by faith, even when I can’t walk. I continue to pray for healing but more than anything, I want His will to be done. Right now, today–this is where I am supposed to be. This is God’s best. It is the best. And I don’t have to worry or perform or achieve. In fact, His power is made perfect in my weakness. And so, by faith, I am walking on water.

Life is gonna change. A lot. Again.

It’s been a rough few weeks. Not so good health & pain-wise. Cycle of over-doing, paying for it, repeat. Spent a whole week recovering from the jaw spasms I got after spending 2 hours trying to get some information from an insurance company for a patient. Brain doesn’t work so well when I’m exhausted & in pain.

So, I’ve decided to put my medical license on inactive the end of this month. Besides the physical toll my practice has taken, my medications & brain insults from chemo, meds, concussion etc add up to my brain not being as sharp as before. Scares me. When I’m really tired, I lose words. I’m not going to be responsible for making a mistake on someone’s prescription or anything else that could have adverse consequences.

I’m glad I’ve already gotten rid of most of the work. there were days I was completely wiped out. The migraine I got after the Blue Cross/Blue Shield day of the complete run-around was a real day-killer. Luckily I could spend the day resting. Wouldn’t have been able to do this before.

Another advantage of my lowered stress levels – the return of some artistic creativity. Something besides finding funny gifs for my blog, I mean! I made some great mixed media bookmarks, cards & boxes for our  temple’s annual bazaar. OK, I’m tooting my own horn, but they really are lovely.  When I get a little more energy I’ll put up photos.

Because I’ve been down a lot & working on the bazaar project (when I had energy) for the last 2 weeks AND Kat came home for a week of extended fall break, I haven’t been able to tend my on-line business.  I have SO many things I need to list before the Christmas buying season ends – really need them up in the next couple of weeks. My first priority is the group of stuffed toys I listed last year, have photos but when I pulled the listings didn’t think to copy the wording onto notepad… so now I’ve had to weigh and measure each one again! Here’s one of my favorite toys – a lovely custom-made white teddy bear with a gorgeous custom made lined white plush coat with great details:

That’s what I did this afternoon – after I slept for 2 hours in what was left of the morning/early afternoon when I got up at 11….We had the bazaar yesterday & it really wiped me out.

So – it’s toys, Christmas jewelry & collectibles and then my gorgeous vintage hats. Hats are a new venture for me – I’ve been doing my research; have some great ones, including a couple Mr John Classics. Here’s one of the gorgeous Mr Johns – the green wool felt & veil really complemented Kat’s red hair – I wish I had a photo of  her wearing it!

My listing hold-up has been finding a good hat head for photographing them. I have that plain styrofoam head & one of my wigs from chemo days. That will probably do if I can make it stand up! It wasn’t made for the weight of a hat, so I need to stabilize the bottom. Some of these hats weigh a couple of pounds – Yeah! Really! I can’t believe women actually wore some of these things…

Got some more vintage ties too. This time most of them are really pretty – including a batch of wool ties from Scotland, Ireland & England. Those should be great for the Northern winters. Nobody around here in NC would even think of wearing a wool tie!

Life goes on. Nik and i were able to make it back to 2 SCA meetings!! YAY!! I had Nik do some research on Aristophanes. I was inspired by Tony Blair mentioning “cloud cuckoo land” in a speech before Parlement. Nik found out about “The Birds” & the political climate in Athens at the time as well as the format of Greek “comedies”. All by himself except for a discussion at the end of the day when we discussed what he’d found. He’s such a great kid!

Yesterday he was explaining a moss bonsai to a lady at the bazaar. He mentioned he’d been studying moss recently and she wanted to know where he was doing that. She was probably thinking which school class. He simply explained he was home schooled & decided to see if he could grow moss under out back deck to prevent erosion – studying which grew best, what growing conditions were ideal, which propagated itself most freely etc. Think it scared the heck out of her to hear this coming from the mouth of a young teenager.

Unschooling or “child led education” is working extremely well with Nik. He’s interested in so many things that he’s providing himself a liberal arts education! Did I mention he is studying classical painting & has Thomas Constable as his current favorite? We’re working on his writing problem with his blog. Slowly, he’s increasing the amount he’s writing and decreasing the amount of whining. Eventually he will learn to write a research paper; I’m content with him finishing most of Algebra 2 and being ready to start on Trig. If he were in the 8th grade (as he would be), he’d never have even heard of a Greek play….

Life is changing. A lot. Again. Always something new to do, to learn & to discover. I guess I’ll roll with it

I feel like I am in my 30's again!

Don’t cats have a great life? I went in to take some pics and Aleka figured it was time for a belly rub

Too bad that’s not a good thing to feel like I’m back in my 30’s This is a lot like I felt when I first got diagnosed with lupus. Every evening I go through hours of chills and creepy skin…then my face gets red and I feel like I am burning up a few hours later.

My right leg is soooooooo swollen! Tonight the swelling has moved above the knee and is all the way up to my butt. I have on even roomier sweat pants than last night and the whole right leg is tight against the material It’s owie to bend my right leg and it won’t fold up at the right angle. I can bend my left knee just fine…and that’s my bad one!

I even found a lesion on my hip JUST like the one I had 23 years ago that the doc saw and then knew I had lupus. Hmmmmm…..what’s going on? I forgot to ask the doc to do a SED rate and CRP. I hope I can remember to call tomorrow and have it added to my blood tests I need to get done. From the pain all over my body, I’d say the tests will find plenty of inflammation. My 800 mg Motrins aren’t even touching this pain and soreness.

Beth and Luc are on a diet. That’s good for me The last 2 nights I got their restaurant leftovers. Tonight it was HoJo’s clam strips. Yesterday was two kinds of Chinese food. YES! After I cut up vegies for the freezer, I don’t feel like cooking. Today I did 10 quarts of salsa.

I should have put a quarter on the onions in the bowl in the last pic. That is a 2 gallon bowl and those are good sized onions. Sometimes it’s hard to tell size in pics.