Posts Tagged ‘Fibromyalgia

26
Apr
10

I’ll Just Take the Escalator

When I was diagnosed with fibromyalgia in the early 90’s I was also diagnosed with rheumatoid arthritis.  The rheumatologist was not too worried about it, said it might even be sort of intermittent.  He prescribed for both the fibromyalgia (FMS) and rheumatoid arthritis (RA) but mainly focused our discussions on the FMS.  When he retired a year later, my family doctor took over managing my fibromyalgia and arthritis, and did so for many years. 

I was recently reading a book on fibromyalgia and discovered I am on the very most antiquated treatment.  Two of the medications I am taking have weight gain as the primary side effect, which certainly applied in my case.  Plus I just felt bad all the time.  The book, From Fatigued to Fantastic, planted a seed of “Maybe I can feel better.” in me.  So I sought out a rheumatologist.

Enter Dr. S.  Two weeks ago she examined me for the first time and told me that I have sustained considerable damage to my feet and hands, because I haven’t been properly medicated for my rheumatoid arthritis.  She goes on to explain to me that RA is most likely the culprit in terms of my chronic exhaustion.  Debilitating exhaustion has been my PRIMARY complaint for years. Have I complained to my M.D.?  Yes.  Have I asked him what’s wrong with my feet?  Yes.  Does the funny little chart he carries around and flips open every time he sees me include RA in the diagnosis?  Yes.  Does he prescribe Plaquenil for my RA?  Yes.  Why hasn’t he taken some sort of action?

That I couldn’t answer.  How could I point the finger at my doctor when I haven’t pursued the matter myself.  Besides, I go to a teaching hospital and have never seen the same doctor twice, so I wouldn’t know who to be upset with.  To be honest, in my ignorance, I blamed it on the fibromyalgia.  I blame every twinge and bump on the fibromyalgia.  It creates such a wide array of symptoms that it’s easy to do that.  Ideally my doctor would not have taken that stance, but quite honestly I feel most health care professionals see fibromyalgia patients with a big fat “HYPOCHONDRIAC” stamp on their foreheads.

So now, I am on an additional drug for the RA.  It”s kicking my behind (nausea, fever, chills, and a funny metallic taste in my mouth-ugh!), but I like having use of my hands and feet, thank you very much.  So I believe I’ll stick it out.   It’s funny  how things creep up on you.  Have you ever started a diet and had someone tell you that you are losing weight in your face when you are wondering why you can’t get the same comment about your caboose?  After the first shot of this stuff, my husband tells me that I am “losing weight’ in my feet.  I had gotten used to my feet looking like balloons all the time, and had long ago made peace with not being able to wear girlie shoes.  Now the tootsies don’t seem to be swollen all the time.   I wake up in the morning and can wiggle my toes.  I have shed five pounds (a mere grain of sand off the beach, but a start).  I’m not always begging for a foot massage and amazingly I can ride the escalator at the mall.  I can’t really explain how I had rationalized to myself that I couldn’t step on and off of an escalator anymore.  I thought I had just gotten stiff and clumsy.

After going to the mall and riding up and down the escalator just for fun, I began to get very grateful.  I also began to abandon my natural propensity to engage in unwarranted bouts of self-pity.  Good thing I saw that book.  Good thing I took myself back to a rheumatologist.  She tells me that a few more months of treatment I will most likely be able to take walks again.  I can see the pounds melting away already.  My dog will be so happy.  Life is good.  But in the midst of goodness I feel a little grief.  I guess I never really dealt with the RA diagnosis.  I focused mostly on the fibromyalgia and blamed everything on that.  Between escalator rides, I’ve been kind of curled up in a ball moaning and groaning.  But I refuse to stay there.  I am catching up on my blog.  I am spring cleaning and making a path in my art studio.  I am flirting with my husband.  I am catching up on phone calls and emails.  I am listening to friends tell me what’s going on in their lives.  All of the little things that make me feel connected, that make me feel joy.  So I see myself well on the road toward acceptance.  The gratitude tells me that I am.  The coping mechanisms are coming back out of the toolbox and I’m remembering a few things.   Chief among them is that any loss must be grieved.  Then it must be embraced and accepted.  When I have done that in the past, it always opens my eyes to the enormity of what I have to be grateful for.  Gratitude breeds faith, and then I become just a little bit more whole.  I change and grow.  This has been my experience with the ironic nature of loss or hardship.  And every day, no matter what, there is always some bright shiny package waiting to be opened.

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27
Mar
10

The Heavens Have Parted

Happy days are here again, fellow fibromyalgia suffers.  I told you about a book I was reading called From Fatigued to Fantastic by Jacob Teitelbaum.  The book is geared towards patients with fibromyalgia  or chronic fatigue syndrome.  One of the things he addresses (no surprise here) is fatigue.  This has been the most difficult aspect of the disease for me to deal with.  The pain I can handle, the fatigue, not so much.

Anyway, this guy is an M.D. but incorporates a lot of holistic treatments.  Which is fine with me, because who wants to be on more medication.  He recommends a nutritional supplement called D-Ribose.  He also recommends about a million vitamin/mineral supplements, along with a host of supplements that contain amino acids.  He has developed a drink that contains all of these (minus the ribose).  Lest we think he is trying to profit from our desperation to feel better, he says he donates all his profits from the sale of supplements to charity.  I don’t really care.  I just want to be able to peel myself off the couch once in a while.

I started with the D-Ribose and felt a drastic reduction in both pain and fatigue about four days in.  I later added the vitamin drink.  It comes in orange and raspberry.  You mix it with 8 oz. of  liquid and drink it in the morning.  I  mix the orange flavor with about 7 oz. of orange juice, one oz. of water and a scoop of the ribose.  I blend it in a blender till everything is mixed, then I add a few cubes of ice, whirl everything around again, and I’m ready to go.  And I’m not kidding, after drinking this stuff I am ready to go.  I ran out of the vitamin drink and it took me a few days to go replace it.  What an unbelievable difference.  Same with the ribose.  I have missed that too when I was out for a few days.  These items are hard to find.  I found the ribose at one out of about 3 health food stores I tried.  I stumbled on the vitamin drink at Sun Harvest.  If you can’t find them you can purchase on the doctor’s website (of course, right?) .  The website is www.endfatigue.com.  And no, I do not work for this guy.

I hope that if you try this stuff it helps you as much as it has helped me.  Now maybe I can start my spring cleaning.  Seriously.  I am going to do it.

19
Mar
10

What I’m Reading

What I’m Reading:

  • From Fatigued to Fantastic by Jacob Teitelbaum, M.D. *
  • The Story of Edgar Sawtelle by David Wroblewski
  • The Art of Bead Embroidery by Heidi Kummli and Sherry Serafini

 

* From Fatigued to Fantastic is about treatment for fibromyalgia.  The author proposes the use of  a natural supplement called D-Ribose to boost energy.  It is also supposed to reduce muscle pain and stiffness.  Fatigue has been one of the hardest things for me to manage, so I decided to give it a try.  This stuff is a powder that you mix in juice 2-3 times a day.  On about day 4 I made it through a full day of car shopping with my husband. (Translate lots of walking, standing,  and getting in and out of about 20,000 vehicles.)  This was unheard of before I tried the ribose.  At the end of the day we were able to stop and enjoy a nice dinner out without me feeling like I wanted to die.  That night, no pain flair ups.  I have seen a huge improvement in my energy level along with less pain and brain-fog.  I am working my way through the book and am hopeful about trying his other suggestions as well.

18
Mar
10

Accepting Fibromyalgia-What I’ve learned

I was thinking about my journey with fibromyalgia.  How hard it has been to accept.  Fifteen years after diagnosis I am still on that journey.  I used to think I was crazy, that it was all in my head, even though my doctor said it was all in my body.  I doubted myself.  I felt guilty.  I was ANGRY.  VERY ANGRY .  At the diagnosis, at myself for having it, at my body for betraying me, at my employer for thinking I was faking it.  Ugh!  I got so tired of explaining what was wrong with me, especially when no one seemed to understand.

After years of frustration I finally figured out I don’t really have to explain my illness to anyone.  A simple “I’m not feeling well” will do.  People don’t want the gory details.  Most people anyway.   My husband knows about them.  He lives with them, the gory details that is.  He still loves me, and so I have to work on loving myself.  I am broken, but I am still whole.

As a woman I tend to define myself by how others see me.  Fibromyalgia can be a lonely place.  It has forced me to look within for validation, for comfort, and for strength.   It has encouraged me to hone my creativity.  It has made me more flexible and more compassionate.  It has taught me the value of a sense of humor.   Fibromyalgia has been a spotlight helping me recognize those who truly love and support me, pretty much eliminating toxic people from my life.   It has helped me to overcome my controlling nature (kind of).  And perfectionism-forget it!  On those grace filled days when I can zero in on what my illness is teaching me, focus on what is really important, and see beyond the surface I am well on my way to acceptance.

The rest of the days, I just whine and complain.  I try to keep those to a minimum.

07
Mar
10

Hello world!

How do I live with fibromyalgia?   With pain, and fatigue, and a sense of humor.  Combine these with a loving family, an active creative life, an interest in the world around me and I do just fine.  I love to paint, play with beads and polymer clay, read great books, go to the movies, and (even though I’m slightly ashamed) watch a select group of reality TV shows.  When I am knee-deep in paint or clay or rooting for my favorite on “The Bachelor” (there, I’ve said it.  I watch all those dumb shows.) I just might forget that I’m exhausted or hurting. With these tools in my pocket life looks just fine.

Please let me know what you use to cope with fibromyalgia or any other chronic pain issues in your life?




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