What The Hell????

Did I miss Something??

Did I totally misunderstand??

Am I losing my hearing??

I guess I should start at the beginning.

Sunday night was one of thee most painful nights I have ever had. By time I went to bed, I was in tears, tossing and turning. Nothing was working to ease the burning, stabbing, spasms that were consuming my body. This pain decided it wasn't going to limit itself to just my hips and lower back. NOPE. It was going to slowly, rhythmically, contract all the way up between my shoulder blades into my neck. Oh, and it wasn't stopping there. Both my legs were getting involved in this little dance of pain as well. My thighs were on fire, and my both my calves felt like they had just ran the Boston marathon...and won.

Vicodin, Aspirin, and Ativin are all I am allowed to take for this pain. Since I have trashed my kidneys with years of abusing them with overdoses of Advil, Al eve and such, I am not longer able to use any type of antiinflammatory medication. Being a Diabetic, this is one rule that I do stick to.
The Vicodin that I take has a full days worth of Tylenol in it, so I cannot take any extra for break though pain..unless I want to trade in my liver for a new one.

My Heated Mattress pad on high, 4 pillows, rearranged every hour, I think I fell alseep around 4 a.m.

Charles convinced me, that even though I had an appointment at the pain clinic the following day, to call and request an emergency appointment to explain all the pain that I was in, to get some kind of relief, any relief. The receptionist was so very sweet, didn't ask any questions, put me on hold, asked if I could be there in 2 hours. I am on my way!!!

First Question: What did you do??

Answer: Nothing! This just happens some times, and I can't get out of that cycle.

Second Question: Do you think physical therapy did this?

Answer: No, my last session was 4 days ago. I do have reactions to it, but not this long.

MY Question: What do I have?

Answer: FIBROMYALGIA!!!

MY QUESTION: WHAT THE HELL?????

So, I guess now the whole story has changed, again. Lets start at the beginning.

I went to a rheumatologist. He agreed I had fibro, but thought I had something else because my lower back was so painful to the touch and I could hardly walk. I had an MRI and x-rays. The MRI showed that I had FUSED SI joints. Sent me to have SI injections. The Dr that did the SI injection said that he felt I had Ankylosing Spondylitis, though my Rheumatologist Diagnosed me with sacroiliitis and Fibromyalgia. At my check up, I asked my "rhuemy" about the Ankylosing Spondylitis and he sais "NO" because I did not have a bamboo spine. (ok) Went back for my follow up with the doctor who did my injections, told him I didn't have Ankylosing Spondylitis because lack of bamboo spine. He got defensive stating that the bamboo spine is what we want to avoid!! It is a progressive disease and fused SI joints is the beginning of this disease. SO..fast forward to this new pain clinic. As I am getting the new injections, she tells me that my SI joints are so fused that she cannot get the needle into them to inject the steroids. I tell her that the last Dr. felt I had "AS". She said Yes, that SI fusion is the diagnostic tool, and my fatigue etc would be understandable. Now, 4 weeks later, AFTER she talks with my original "rheumy", she tells me I have fibromyalgia, not Ankylosing Spondylitis because my blood work doesn't show AS!
I ask her if Fibro fuses bone, and she tells me yes!!!!

I am so confused!! Frustrated!! I am not sure I am getting the correct information.

I am starting Savella today for Fibromyalgia, and I am supposed to wean myself down from the vicodin. If this doesn't calm down the pain when I go back to see her in 4 weeks, I will go off the savella, vicodin and go on long acting narcotic and muscle relaxer.

I don't think Doctors understand that part of our pain and anxiety comes from the not knowing. Just putting a label on something gives us a name to what we have. Something to hold on to. It takes some of that fear away, and gives us some power over it. They have gone to school years and years and know what this disease is, what is can do, what is cannot do, what it's limits are...we do not. When we are told different stories from different doctors, we start to mistrust them, and wonder what it is that we don't know. The fear comes back. The anxiety comes back..and then the pain. It is a vicious circle. Maybe they don't understand because they have not experienced it yet?? That is why you get those hateful comments like...it's "JUST" Fibro............