Posts Tagged ‘I hurt all over’

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!

My magic bell and fibromyalgia

with fibromyalgia injuries take longer to heal

intact, after the fall

My magic bell was the first thought I had after I hit the wet pavement.  Did it break I wondered?

As you can see from the picture here, it did not break!  Nor did my head which is good ’cause I didn’t have a helmet on.

“You know how it is with you.  Because of fibromyalgia when you get a localized injury it spreads to other areas,” my doctor said.

“Well, umm, how long do you think my back will hurt?”  I knew the question was one he couldn’t answer.  I don’t know why I asked. He just looked at me.  I don’t remember if he said anything.  I think he simply nodded his head to communicate that he didn’t have a clue.

It was my elbow that got cut open.  My shoulder hurt and my knee,  but after a few days the rest of my body began to hurt.  I was in a great deal of pain as I sat there with my family doctor.

I know you can’t see any bruises I told my doctor, but my body really does hurt.

With a tender tone that was much appreciated he said, “I believe you,” and I knew he did.  He believes me when I tell him I am in pain. This is a blessing when you have an illness that is not only misunderstood but also denied by some as being a true medical entity.

Fibromyalgia.  I think I am mad at this word!  This medical entity!  If I was superstitious or believed in demons possessing one’s body and soul, then I would sure be having an exorcism performed!  But I don’t believe in that, nor do I believe, at least in my rational mind, that I am being punished by God.

Having been brought up in the south with a strong Southern Baptist influence, I must admit that I do actually think and sometimes feel that I am being punished, which I believe is a direct result of what I learned about God and Jesus.

My grandmother told me that Jesus was watching me all the time and that he knew every single thing I did.  Well, that right there shaped and formed a large part of my world view.    I think this must get in a person’s brain forever, these things we learn as children.

When I am in severe pain or have been too fatigued to do anything for days on end, even think, sometimes I find myself lying in my bed, crying out to God and apologizing for all my sins.  I ask why and how am I supposed to do anything if I have this illness that at times renders me totally useless!

My rational mind tells me I’m not being punished and that I am a human being who is not immune to diseases or illnesses.   The pain I live with, the fatigue and the depression because of it all,  is part of the human condition.

I didn’t feel my elbow for the first minute or so.  I hadn’t felt it yet when my son said, “Mom, uhh, you did something to your elbow.”

I lifted my head attempting to get up.  “Mom just lie there.  Did you hit your head?”  I wasn’t seeing stars but walking back home with my son walking behind me with our bikes I couldn’t move my arm.

“I think there is a rock in there,” my son said and that’s when I felt dizzy.  A rock in my elbow.  The thought of it was nauseating to me.  I’m used to pain but not this kind of pain.

My doctor who is gentle and understanding was on vacation when I went to get my stitch out.  The doctor I saw was not like him at all!  I think she thought I wanted pain pills but I told her I had plenty.  I wanted to know if I had hurt my back because it was hurting.  I asked her to examine it, which she did.

“I think this is fibromyalgia.  It’s definitely tissue related.  You’re thin and when you have a traumatic fall like this, with fibromyalgia,  it can…”  I don’t remember how she worded the rest but I didn’t need to hear the words.   They are all the same.

If pain is due to fibromyalgia then basically this means it can behave any way it wants to.  It might be there a week or six months.  It might be localized or widespread.

Sometimes I guess I wish the doctors would say — oh this is something we can fix — and give me a time frame as to when I will be feeling better or recovered.

Update on July 11, 1010 The doctor says that a ligament in my left shoulder and a tendon somewhere around the bicep were strained and pulled.  It still hurts when I move it certain ways.  I fell on October 31st, 2009.