Monday, November 26, 2012

The 6 week wait is over...

Appointment went "okay" today.  I was a nervous wreck beforehand and actually sat in my car wanting to just turn around and leave before I even went in.  I had waited so long for this appointment, but here I was, barely functioning due to anxiety and not even wanting to continue on.  I was freaking out.

How do you tell somebody who you've never met exactly what you're feeling and how do you sum up a long history of chronic pain and symptoms into one appointment?  I wanted to make it obvious to him that what I am feeling is no longer acceptable to me and make sure he understood that some days, the severity of my pain makes me want to just curl up into a sensory deprivation hole to escape it all.  Yet, I didn't want to seem over dramatic or "seeking".  Being in the health care industry myself, I know that a lot of chronic pain sufferers get labeled with that before they are even given a second glance.

He did seem receptive to me, but failed to actually give me a diagnosis.  Although he did say that he feels I present with what is likely fibromyalgia.  He wants to check, guessed it...more lab work.  Fibromyalgia is a diagnosis of exclusion, since there is no definitive test for it.  Plus, it would also be considered irresponsible to not test for those other things, when there could be something else going on that would require a completely different treatment plan.  

He was also fairly concerned that the area of my most severe pain (the place where the pain is constant, unrelenting and most intense) is my neck/shoulders/upper back.  He had me do some x-rays to ensure that there isn't also degenerative disc disease.
So, I should hear back in a few days about my lab work.  If it all comes back unremarkable, then I suspect I should get the formal diagnosis.  
In the mean time, he wants me to increase my Lyrica dosage.  I've been tolerating it without side effect, but relief has been just out of reach.  

Unless there is a problem, I'll be seeing him again in 2 months.  

Tuesday, November 6, 2012

No hoop jumping today!

4 weeks ago when I went to my primary care provider to address my pain and the fact that I thought I have fibromyalgia...I was expecting multiple hoops to have to jump through before I'd be able to find myself on the right track.
Luckily, my PCP knows my sister and knows her fibro struggle. So, she was quick to agree with me on my self diagnosis. She promptly gave me a referral to a rheumatologist to get more personalized/specialized treatment.
She discussed with me starting a medication prior to my rheumatology appointment as they typically can't get you in for a while (she was that point it was a 6 week wait). She knew that I wouldn't get insurance to cover Lyrica (the med most likely to give me relief) right away without trying something else first. So we started me on gabapentin (generic neurontin). She then wanted to see me after 4 weeks. Well, it hasn't gone well. I have had absolutely NO relief while dealing with multiple unpleasant side effects.
So, I had an appointment with my PCP today. I was expecting to have to beg or jump through hoops...but luckily I did my research AND my PCP is awesome. I was able to look up Lyrica with my insurance company and found that they will cover it if you have taken gabapentin within the prior 12 months. I informed my PCP of this and she immediately was on board. She basically said, why mess around with something else when this is what will likely help, especially since my sister has had good relief with it.
She she prescribed it and I was happy that my research was right and when I arrived at my pharmacy to pick it up...I only had to pay the co-pay!!!

I am actually finding myself feeling truly optimistic. It is good timing because by the time I see the rheumatologist I will be armed with the knowledge if this med is working or not...but it gives us a head start.
So keep your fingers and toes crossed that after years of suffering in silence and now 4 weeks of suffering out loud, I'll finally have some relief.
I know my husband will appreciate it too...nights like last night are hard. When I am in so much pain that I'm crying and untouchable, he has a hard time dealing with not being able to do anything to help me. Hopefully he won't have to see me like this for much longer.