Fibromyalgia misunderstood.

my magic bike

“He said you are very sweet,” the physical therapist said during my assessment.  I missed some of her words, due to a language barrier, but I heard the last part of the sentence when she said, “but he said you have not shown much improvement.”

I felt insulted.  Waves of emotions swelled up inside of me.  I’m sure she did not intend to insult me but I felt it anyway.  I had improved! Wasn’t that in my records I wondered.

I’ve had treatment for fibromyalgia pain there twice.  The first time I went to the warm therapy pool for a couple of months and they are right, I did not “improve,” at least not in the way my insurance company wanted me too, which I guess meant that I was cured.  I did have a great couple of months but insurance companies do not count this as improvement.

The second time I went there for fibromyalgia pain was about six months ago. My therapist and I decided together to do dry-land therapy instead of aqua-therapy, even if it meant me tolerating a bit more pain for a while.

I began to see a pretty big difference in my level of pain around the fourth week of doing the exercises.  My therapist is great, especially because he is well read and current in his knowledge of fibromyalgia.  He does not believe in causing pain.  I like that.

As my pain level went down my mood went up.  I really liked that!  Suffering from depression all the time is depressing.  I began to feel hopeful, feeling like I had some control, like there was something I could do to make things better.

Deciding I was ready to do my exercises at home my therapist gave me pictures and the long rubber bands to take with me.  I did well for several weeks.  I did my exercises, got in time on my magic bicycle and of course walking my dogs.  I could see muscles forming on my somewhat stringy arms and legs.  I was getting stronger.

Then I had a setback in life.  A really hard setback.  One that caused me so much grief I stopped doing my exercises.  It didn’t take long before my pain level was rising and my muscles were disappearing on me once again.

But what about the months I did so much better I was thinking while I was in the physical therapy assessment the other day.  What about the fact that for a while, I did improve, which means that I can improve?

After talking with her a couple more minutes I realized she didn’t know why I was there, which was because I hurt my arm and shoulder when I fell off my magic bike on Halloween.  She thought I was there because of fibromyalgia, again.

I explained this to her but she asked me three times if the pain was from the bike fall and not fibromyalgia.  I wondered about that.  I thought me telling her one time, along with the fact that she had a referral from my family doctor as to why I was there ought to be enough.  Did she think I was making up the accident? I pulled up my sleeve so she could see the gash in my elbow, which apparently convinced her.

The other therapist had never sent me out of there in pain.  This woman did and I hurt for two straight days.  I felt like she did not believe I was in the amount of pain I was in.

Presently, I can only lift my arm halfway up from my side.  Doc says this is from the, “tendon adventure,” I went on.

Many things she asked me to do hurt.  My family doctor had examined me and discovered gently without causing me pain which tendon and ligament he believed to be the ones that went on the “adventure.”  Each time I said, “that hurts,” he stopped.  But the PT I saw would just look at me when I said that hurts as if she did not understand.

It was a frustrating experience.  I was upset when I got there because of the crazy guy I had a crazy relationship with.  She blamed my nervousness on fibromyalgia but I knew what was wrong with me.  It might make the fibromyalgia worse, in fact I’m sure being upset does, but it wasn’t fibromyalgia that had me so upset.

“You are nervous.  You can’t relax,” she kept saying as she held my arm in positions that were really hurting me.  Well, no shit!

Finally she said she would end the session with the machine that sends electrical stimulation to the nerves.  I’d had it on my neck and back before and never had been impressed but also never felt any pain so why not I thought.

That thing felt like knives stabbing in me!  I was surprised and so was she.  She also laughed just a little when my legs came up against my chest after she had turned it up a notch.  I however did not laugh!

I became more distressed.

I told her I wanted to have aqua-therapy again.  I knew my therapist would be in the pool.  I also asked her if she would consult with him.  I’d already decided I was not going to come back and have another session like that one.  She was nice and when she came back from talking to him she had papers for me to sign.  He had agreed with me on the no pain part and that the warm water exercises would be a better approach since I am in so much pain.

Thank God for the few good doctors.  Thank God for the few good medical professionals who study and keep up enough to know they cannot assume they fully understand fibromyalgia.  It is the doctors and other providers who realize this who are the best ones.

Medical professionals who think they understand and have all the answers regarding fibromyalgia, while the smartest scientists are still scratching their heads,  are the ones who I am leery of.

I didn’t like it when that physical therapist, even though she was nice, kept on blaming my upset that day and the pain in my arm on fibromyalgia.

“You have fibromyalgia,” she said, “so you cannot relax.”

I had a boyfriend who was a narcissist I thought to myself and that was why I couldn’t relax that day.   I had spoken to him only hours before!

She was also pulling my injured arms in ways that was causing pain, which was not causing me to feel relaxed.

I’ve had many things blamed on fibromyalgia that shouldn’t have been and had fibromyalgia used to explain other things that are not fibromyalgia.

It’s a crazy world sometimes!




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7 responses to this post.

  1. […] Fibromyalgia misunderstood. (tags: fibromyalgia) […]

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  2. Interesting affair, did not thought reading this was going to be so awesome when I looked at the title!!

    Liked by 1 person

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    • Well, I wish I was better at titles. I’m always complaining about not knowing a good title. Sure glad you read it anyway and much so that you enjoyed it! Thanks.

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  3. Posted by Michelle Jadaa on December 9, 2009 at 4:41 AM

    I arrived here through a friend of yours on twitter.Its always nice to find new blogs that referencefibro,it puts what im going through in perspective.
    I just stopped going to physio for ankle tendernitus that i get repeatedly.Im now convinced its caused by the muscle tightness caused by my fibro.The therapist was young and after the first visit seemed disinterested so i quit and now im waiting for my own TENS\EMS machine to arrive.it seems that self education is very important once diagnosed with fibro.
    the following two books i keep by my bed and consider my fibro bibles :)…michelle jadaa,Canada.

    The trigger point therapy workbook by claire davies
    (your self treatment guide for pain relief)

    Fibromyalgia and chronic myofascial pain by devin starlanyl
    (A survival manual)

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    • Hi Michelle J.– I just joined Twitter and already friends are here. How nice! Thanks for reading this and for the reading suggestions. maybe I’ll go book shopping for x-mas!

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  4. I can really understand this post! My sister in law has had CFS and fibro for years now and I always feel so bad for her. It must be difficult. Something that has helped her has been the Topricin pain cream. Just a thought! Hope this helps 🙂

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    • Hi smilinggreenmom, thanks for reading and commenting. I haven’t tried that cream. I think it is for neuralgia but am unsure. I will check it out. Thanks for the info and I hope your sis in law is doing okay. It is a difficult illness, especially the fatigue.

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