Thursday, October 1, 2009


I will start to keep up with my blog. It's been awhile and I haven't felt much like writing. I am not sharing this blog with family and friends because I want a place where I can write about how I honestly feel without being thought of as "dramatic" or "crazy". I really think most of my family, outside of my husband, does not believe I have fibromyalgia. Like many previous doctors, they think I am just stressed out because I work full-time and I have two small children.

But, this is not stress. Quite honestly, outside of being in pain so often, I have very little stress. My body feeling ages beyond my true years is the only stress I really have. I am happy in my marriage, thrilled and thankful for my children, and I really like my job. Of course, I wish we had more money and all that stuff, but it doesn't consume my thoughts.

So, I am seeing a chiroprator on Friday, at the recommendation of a friend. It's sort of a last resort and ditch effort to reclaim my body. I am so sick of being tired and sore. The fibro has gotten worse, not better. Well, for the most part. I have been on Effexor for quite awhile now and it doesn't really seem to do a whole lot. I am not depressed, so maybe it does help there. One very noticible thing though, I have no more jaw pain. When I was 1st diagnosed with fibro, I had an aching jaw almost all of the time. My dentist said I had classic TMJ and offered some things I could do. But, nothing worked except this Effexor. When I started that, the jaw pain went away completely. Wierd! But, hey, I'll take it.

I struggle with exercise. I love to exercise and go to the gym, etc. But, lately, I find that the days following even small workouts leave me in a great deal of pain. We had bought a wii fit and I thought those "light" workouts would be perfect. The yoga didn't cause much pain, but it isn't like being in a real yoga class. But, I bought the wii active and was doing some boxing moves and kicks. I really enjoyed it! But, the next day I could hardly walk. I know I was using some muscles that haven't been used in a long time, but the amount of soreness exceeded what would be considered normal. I wasn't just sore. I could barely walk. This was an awakening to the fact that fibro is interferring with my life.

A week or so later I wanted to do the wii active again, but didn't because I was leaving for a business trip the following day. I knew I couldn't handle walking thru the airport with such sore legs. I have read that managing fibro is all about choices. Well, that just SUCKS. So, I have to choose to slow down when I want to live my life to the fullest? I have to choose not to exercise so I can do basic activities the next day? That is not a solution for me. I don't want to choose not to do things that I enjoy.

While I was on the business trip, I realized just how much this affects my life. I was in bed early each night and exhausted at the end of the day (even though I was sitting in conferences most of the day). I was traveling with my boss who is about 20 years older than me and I couldn't keep up with her level of energy. This was extremely frustrating for me.

I also came down with strep throat again. This is when a friend asked me if I considered a chiropractor. I had considered it, but really never followed through. My husband and I have discussed massage therapy, but I am actually afraid a massage will hurt! Sometimes the slightest pressure on my shoulders is very painful. I will go to the chiropractor and see if she can help. At this point, I feel like I have nothing to lose. I want my body back.

I need to make a list of all my ailments (long list) and maybe she can connect them. It seems like when I fix one thing, another breaks. I wonder if this could help my ITP too?

ITP. This is an auto-immune disease that I was diagnosed with in about 2000 or 2001. My body seems to destroy my platelets and the doctors don't really know why. My counts do not typically get dangerously low. When I was first diagnosed, the count was about 110k. For a normal person, platelet counts are 250k - 450k. At 110k, I was not at risk for much of anything, but they just kept an eye on it because it wasn't normal. I wasn't treated for it, but just bruised easily. I didn't get concerned with this again until 2004 when I was pregnant with my 1st child. Sometimes women develop ITP when they are pregnant and then their counts are normal again after birth. Well, interestingly enough, my counts went up to about 125k.

If your counts are below 100k, doctors are hesitant to give you an epidural. That was really my biggest concern, making sure I could deliver without pain! I know some women want natural birth, but I was terrified and wanted as little pain as possible. I delivered a healthy baby girl via c-section on 5/20/2004. The labor was almost 3 days and was miserable...but my platelets stayed above the line.

Over the next few years, they decreased slowly. By the time I was pregnant again in 2006, they were about 90k - 100k as my "normal". Again, delivered c-section with no issues.

3 years later, my "normal" is 50-60k. I had my gallbladder removed in 2008 and was given WinRho via an IV and this boosted my counts to 300k! But, it only lasted a few weeks. Predisone was tested and actually decreased my counts, which baffled the doctors.

My ITP is actually odd too. Most people with ITP have antibodies in their blood that specifically attack their platelets. Doctors have tested me for these antibodies and they weren't there. My general PCP thinks this means I do not *officially* have ITP. But, my hematologist says that I don't need to have the antibodies present to have ITP. He is solid on his diagnosis. I also had "young" platelets in my blood. They say this means that the platelets are being destroyed before they mature.

Well, the gallbladder removal was quite interesting too. But, more on that later. In summary, I have several issues that I am hoping the chiropractor can help me with.

I will write more tomorrow after the visit!

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