Winter is a REAL BITCH!!!

I haven't posted anything in this blog for awhile so I'm due...

I've had some real trouble the last few weeks with pain.
I know its due to the cold, but I'm afraid it also as to do with the medications I'm on. I've been able to somewhat pull myself out of the rut I was in, by exercising at least once a week, but it's not enough.

It's amazing that to maintain some normality with my life and with this disorder, I have to cause myself pain in order to reduce my pain.
I mean... you got to be really strong willed to do that shit!
It hurts so bad to exercise, but I have no choice if I want my overall pain to be less.
No, it never goes away completely. The exercise just reduces it a bit, but I put myself through torture just for that bit.

I went to the doctor the other day to talk to her about the pain and the medication I'm on. I wanted to get off of the Gabapentin, because it never really did much to begin with except give me headaches. I just felt like that was a chemical in my body I didn't need. Plus I wanted to talk about increasing my Savella, which unlike the Gabapentin, has been helping me greatly.
From the moment I told my doctor what was going on and how I felt, she practically read my mind and finished my sentences for me. Turns out I wasn't on the full dose of Savella to begin with and she agreed that it would be best to get off the Gabapentin.
She is truly an Amazing doctor!
Not only did she listen to me but she heard me, and she knew what I was gonna say before I did.
It's not everyday you get a doctor that actually pays attention to you, and gives a crap.

So she told me what to do. I'm reducing my Gabapentin and increasing my Savella slowly over the next two months. When the 2 months are up, I go to see her again, and she checks to make sure I'm handling the change well. If things go well, then we take the next step.

I'm a little worried what the increase in Savella is gonna do to my already heightened personalty.
As it was, when I first started taking it, it was like I was on speed.

I was hyper, I had verbal volume issues, and to top it of that I had mind to mouth filter issues (lol). In other words I was talking real loud or even yelling without realizing I was doing it, and I would say exactly what I was on my mind. It wasn't till I watched a video of myself on Christmas Day not long after starting the medication, where I was yelling profanity's at my cousins cause they hit me in the head with balled up wrapping paper, that I realized I was out of control.
Over time I gained some control over myself again as my body got used to the medication, but I'm still talkative and outgoing. Kinda funny that a side affect to the drug for me would be being loud and outgoing while I've spent my life being quite and shy....lol

So now that the doc is increasing the dose, I'm waiting for shit to get weird again. I do feel a bit hyper, but I have to be really aware of how loud I am and what I say when I speak, cause I don't want another foul mouthed Christmas...lol

(Amazing photo above by sarahmae09, Photobucket and is directly linked)

Stupid Fibro Flareups.... :-(

So for the last 2 weeks I've felt physically drained and achy.
Can't sleep at night, and when I do it's never restful. I feel physically, mentally, emotionally, tired, and have been dealing with a constant headache for days.

Sounds familiar, but it took someone else to help point out why....

They are all symptoms of Fibromyalgia. Symptoms I haven't had in Months, but less severe. In other words I've had my first Fibromyalgia Flareup.

Granted, these symptoms are nowhere near what I was dealing with pre-Savella, but everything I feel from the fatigue, to the pain and headaches are like echoes, painful reminders that this syndrome is a life sentence.

So...after finally realizing What I was dealing with, I was determined to find the Why, and if this could be prevented in the future.

Low and behold the moment I started looking back, the pieces started coming together.

Last month was a very active month for me. In fact the most active month I've had in 2 years.
Between the snow storms, going to the opera, starting my exercise program, fully dating someone, getting the flu, my fathers emotional visit, breaking up, and running around trying to find a bridesmaids dress, not only was I very physically active, I was also going through a lot of emotional ups and downs. Half of that is enough to send anybody into a crash let alone someone who's suffering from Fibromyalgia...lol

So...The lesson here is, not to forget what I'm recovering from and not to run before I walk.
Somethings we have control over, but most things we don't. This can very easily happen again if I don't pay attention to how much I'm doing physically, or to the way emotional events affect my body...
In a nut shell, I need to pay more attention to how I'm living my life...

This flareup was a wake up call...
Hopefully I wont need another one...

I Know Why there aren't any Good Fibromyalgia Blogs out there...

...written firsthand by people who suffer from it.
We're all too tired to try and sit in front of a computer explaining why we're too tired...lol
Well at least it hasn't been 4 months since my last post...oops wait....it's been way More!...lol...:)

A lot has happened in the almost 6 months since I last sat and stared at my blogging page trying to figure out what to write. So here it goes...

The Endocrinologist was a waist of money, but at least she was genuine about trying to help, so it wasn't a waist of time.
More bloods were taken, my thyroid hormones were checked (a 1 hour long blood test where they took blood, injected hormones, made me wait for an hour, then took more blood) but everything came back as normal. I was also supposed to take a urine test where they give you a gallon jug, tell you to pee into it for 2 days strait, then bring it back to the lab....
Um...Yea Right!!...
Your gonna make me pee to into a Big Red jug every time I gotta go, for 2 days straight, then I gotta run and haul my urine on a train from Harlem to Union Square, just so I can drop it off at the lab?...
Is it at all a surprise that I didn't do this test...lol
and that heralded the end of my brief encounter with the Endocrinologist

A few months later I went back to my Neurologist who basically told me there was nothing else he could do for me and that I need to go back to the Rheumatologist.
Not mush of a surprise, but for a doctor who didn't know anything about Fibromyalgia, he did kinda try, so I couldn't be too mad, just disappointed.
And bang!...the human pin ball gets hit again...

So I made my appointment to see the Rheumatologist October 21st, not expecting much, but boy was I wrong.
This woman is what I call a Doctor. She listened again to my list of issues, examined me and right away noticed that I suffered from arthritis in my knees.

Ok...thats was a first!...

No one ever said anything about my knees, but they had been giving me pain for awhile. I just figured it was the weight I had gained from my medication.
She told me that I probably had the arthritis for awhile but the extra weight aggravated my condition (wasn't I thinking the same thing...lol).
Because of the arthritis and my family history of arthritis and osteoporosis, she thought my symptoms might be related to a rare form of arthritis that happens in the lower spine.
So off  I'm sent to get an X-ray of my lower back, I'm prescribed anti-inflammatory medication, then sent on my way with an appointment to come back in 2 weeks.

At this point I started feeling that very dangerous animal called Hope crawl out of my chest...

Well...2 weeks go by and just my luck, I get sick. So I reschedule for December 16th (the only day available because of the holidays) which is a long time to wait when you feel like things might be changing, but sometimes you got no other choice. What helped to keep my mind off the wait were some serious migraines with jaw and temple pressure pain that started getting the moment I started taking the anti-inflammatory medication. Mind you, I didn't feel any change to my overall body pain, just the new added head and jaw pain, so needless to say I had to stop taking them.
By the time December 16th arrived, thanks to my bad reaction with the meds, I was back in mental protective mode, expecting the worse (that she can't help me) but hoping for the best.
Turned out my X-ray was normal, and that was good cause I couldn't take the damn medication anyway.

So...deciding not to wait for someone else to bring it up, I took a big breath and I flat out asked her if I had Fibromyalgia.
To my surprise she very simply said yes. That I had all the classic symptoms and signs, but other causes had to be eliminated before any definitive diagnoses could be made.
Yep...after almost 2 years....I heard the words that I thought would never come. After regaining my mental and emotional control I asked her if there was anything else I could do(because by this point my condition had deteriorated to the point that I needed my mothers help walking a few blocks and going up and down stairs). She then told me about a new medication that was just cleared for use in the US called Savella.
Its a medication that was used in Europe for depression but that it's not considered an anti-depressant like Lyrica. It was cleared to treat Fibromyalgia patients who don't show any signs of depression.
Needless to say I was thrilled.
It was something, it was a chance, a hope, and even if all it did was relieve my pain just a little more then the Gabapentin, that was a step in the right direction.
She prescribed the medication with instructions to continue with the Gabapentin and to try to get in at least 4 hours of slow walking a day to help reduce my muscle deterioration.
I was supposed to come back for a follow up appointment in April (when my insurance renewed my allotted number of Doctors visits).

I kid you not... Within 1 week of taking Savella I was moving around better, I had energy, and was generally beginning to feel like my old self again. In fact though I noticed the change, I was still in denial, and it took my Aunt saying something to make me realize the truth of it.

After the second week, there was a noticeable decrease in my pain. I was able to go up stairs unaided (though slowly), I could walk a good distance more then normal, and I even tried to run (which might have worked out ok if my body hadn't been so weak).
It felt and feels even today like I'm waking up from a very long nightmare. The whole reason I can even write this blog entry is because I can think again.
Last night I discovered that my mind was clearing up. It was such a shock to have my inner voice back that I broke down in tears. One of the worse things about this was not the physical pain, but feeling like I was loosing my ability to think, and with that my ability to write. Analyzing and communicating has always been my gift, my way of dealing with the world, and to loose that ability was devastating..

So thanks to this wonderful drug, I sit here now writing in a blog that hasn't seen my formidable wording (lol) in a long time...
Only time can tell what the future holds, but it looks much brighter now that it seems like I'll have one...:-)