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...:-)

4 Months and here it is "My Journey as a Medical Ping Pong Patient"

Wednesday, February 27th 2008 the pain started and has yet to stop.....

It was my second day back home after being away for the weekend and I woke up with this severe pain in the back of my head and neck. Having had back problems all my life I just thought it was a pinched nerve, but as the days followed the pain grew worse and seemed to spread. Before I knew it my whole body was in agony.

Every muscle in my body felt like I had overdone it at the gym, my joints were stiff and painful, I had a constant headache, and I couldn't lean my body on any hard surface without it feeling like I was pressing on a bruise.
Sitting still became almost impossible as lack of movement made the stiffness in my joints worse (which also meant no sleep) and to top it all off, I felt like somebody had drained all my energy from me.

I made an appointment to see my general doctor on March 18th which was the earliest appointment I could get. When she finally entered after a 45min wait I told her everything I could. After my physical examination where everything seemed to be fine except for the pain, she came to the conclusion that it might be a re-occurrence of Lyme or even late onset Parvovirus because of the joint stiffness. Though they didn't cover all of my symptoms, especially the full body pressure pain, it was a start, and I believed her when she said it could be more then one issue at work. So they took blood and told me to come back for a followup appointment on the 26th. By then they should have the blood work and we could take it from there.

I arrived at her office on the 26th, now a month into the pain, with new symptoms of light, sound, smell sensitivity as well as Hot/Cold flashes and night sweats. Enough to drive anyone crazy...but I kept my composure as well as the set of notes I had made to keep track of my symptoms.
After another long wait in the examining room she arrived with blood results in hand. I was negative for both Lyme, Parvovirus, but my platelet count was 604 and that was what she was concerned about. She had looked back at my other blood tests, and noticed that my platelet count had been slowly rising since 2005. I also had some other abnormal readings but nothing deemed important since they were just a couple of points above or below the norm. She wanted to take more blood to see if my platelet count had changed and if it was still high she wanted me to go see a Hematologist.
I asked about the joint, pressure pain (which had become worse) and constant headaches (at this point they were everyday) she told me that she would check for markers of inflammation encase it was early onset arthritis but that I should go see a Rheumatologist and a Neurologist.

Yep...Second doctors appointment and now I have to look up a Hematologist, a Rheumatologist, and a Neurologist. If my symptoms hadn't been so severe, I would have said "Fuck That!!", taken some aspirin and gone home....but unfortunately(or fortunately depending on how u look at it) my pain made my decision for me.

When I told her about my other symptoms(handing her my notes), she told me they were probably related to the headaches and left it as that. I was examined again and once again cleared though my reaction to her examination was noticeably more painful.

They took more blood, told me to call in a week, and sent me on my way.

A week later I called for my test results.
When I finally got the doctor on the phone she didn't seem to know who I was. When I reminded her I was calling about the blood work she found it and told me my platelet count had gone down to 580 so she didn't think there was anything to be worried about but she still thought I should go to a Hematologist just to be on the safe side. When I reminded her about my pain and asked her what I should do it, she asked me what kind of pain. I again refreshed her memory but she sort of dismissed it saying that my markers for inflammation were normal so she didn't know why I was having the pain and she couldn't do anything for me. When I asked if I should still see the Rheumatologist and Neurologist, she told me "only if I wanted to"...
It was after that phone call I realized that though she's a nice person and had been a good doctor up till this point, she was just too busy to help me with this, especially if she couldn't even remember who I was and why I came to see her in the first place.
I needed someone more proactive, someone who really hears and sees how much pain I'm in and looks outside the box. I haven't been back to see her since....

That was the beginning of the ping pong game with Me as the ball....

From April 2008 until now I've been bounced from Hematologist to, to Neurologist, to Rheumatologist, to Gynecologist (encase it was hormonal), back to the Neurologist, to a Gastroentronologist(due to other symptoms), to a completely new Hematologist(who was a complete ass hole/moron who asked me 3 times if I ever had an abortion, prescribed depression medication he had no business prescribing and told me to take a vacation...right) and soon will be seeing a Endocrinologist. Each one has only focused on one tiny piece of the puzzle instead of trying to see the whole picture. Once they've ruled out there one tiny piece, all they can do is pass me on to another doctor.

My platelet count has now come down to into the 400's so the only thing that had caused any real interest in my case is gone.
I still have odd blood readings but nothing again that would perk up any interest.
The Neurologist did discover that I was extremely vitamin D deficient which could cause "aches and pains" but the prescription vitamins he put me on did nothing to relieve any of my pain. Plus I definitely wouldn't call what I have as "aches and pains" and though I said that repeatedly to the Neurologist, while he kept repeating "aches and pains" like some mantra.

It wasn't until November 2008, 8 months after my first doctors visit, that my pain was ever fully addressed and I was prescribed the seizure medication Gastroentronologist and muscle relaxers to help manage the pain.
I still believe it would have been an even longer wait if it wasn't that the Neurologist saw how difficult it had become for me to simply rise out of the waiting room chair and walk into his office.
My first non-blood related tests were scheduled soon after that day with an EMG in November and an MRI in December both of which came back normal. The only side notes being my noticeably heightened pain sensitivity to the EMG and slightly enlarged lymph nodes in my neck that showed up on my MRI but were ruled out after I came down with a cold soon after the test was taken.

This past May of 2009 my Gastroentronologist discovered that my thyroid was slightly enlarged and due to my recent weight gain, sent me for a sonogram to determine how large it was. The sonogram came back that my thyroid was indeed enlarged but within the normal limits at it's highest rating which is a 5. Again readings that cause some interest and questions especially since I've never had a thyroid problem before so we'll see what happens when I finally see the Endocrinologist.

The Gabapentin which had started off taking a slight edge off my pain, unfortunately no longer seems to be working, so on June 15th I returned the Neurologist. He told me he has done everything he can to help me and that I need to go back to the Rheumatologist. When I asked him wither he thought this might be Fibromyalgia, he told me that he doesn't know enough about the disorder and that it was predominantly diagnosed by Rheumatologist's. When I told him about the pills not seeming to work anymore and he upped the dosage.

I've asked myself the questions "Am I going Crazy??", "Am I just Depressed??", "Can this all be In My Head??".
I really thought about each one and I can honestly say No!!.
My perception on reality hasn't changed, if anything I'm more positive and focused then ever before because I don't have a choice. When your in constant pain and your world has been turned upside down you can either allow it to destroy you and those around you, or you can re-evaluate whats important, see this as another lesson to make you stronger, see it as another path to be taken, then you put it on your back and keep walking. I chose the second path because the first choice is the choice to give up and I Refuse to give up, so I choose to see the glass half full.
When I do get depressed or frustrated its usually cause I'm tired and the pain is bad, but I shake myself off and pull myself out of it. The depression always comes after the pain, NOT before.
I have lost friends because I can't do the same things I used to and though at the beginning it hurt, I again focused on what was important.
And what is truly important is taking each day as it comes.... with a smile.... and a laugh...

I will write about my visit with the Endocrinologist as soon as I can....Hopefully not in another 4 Months...;-)