Wednesday, January 27, 2010

I Want To Give Up Now

How do you go on when the quality of your life is no longer anywhere near what it used to be?

How do you go on when the pain is so bad, you cry several times a day?

How do you go on when you can't even enjoy time with the people you love the most because of the pain you are experiencing?

How do you go on when you are no longer the mother your kids deserve because you hurt so bad so much of the time?

How do you go on when you feel so alone because nobody understands what you are going through?

I don't know the answers to these questions, but I wish I did.  I'm not sure I can go on much longer like this.

Monday, January 25, 2010

MRI Time

I'm having an MRI of my knee done tomorrow at 7:30 am.  I'll have my ankle and foot done on Friday morning.  Not sure what can be seen or determined by this, but hopefully something.

Not too much pain today, but my low-grade fever was back and I was extremely tired.

I'm feeling down....and alone.  I could use a friend or two right now.

Sunday, January 24, 2010


That's what my kids say when they look at my hands.  Isn't that nice?  Here is what my hands look like after being out in the cold for a while.  This picture was taken after being inside (in a heated car) for 30 minutes.

Isn't that lovely?  That's an example of my Raynaud's.   My hands aren't typically as bad as my feet, but's not a very fun condition.  My pinky and forefinger were completely numb for an hour.  I've had Raynaud's for many years, but only rarely did it act up....Until lately.  Now it happens all the time.  Yuck.

Today I taught Sunday School.  By the time it was over, I was HURTING!  My legs and arms hurt like crazy and I was exhausted.  I hate this.  I really do.

I go back to the orthopedic surgeon tomorrow.  He's the one who prescribed the Lyrica.  I will tell him that I feel a *little* better pain-wise, but it's definitely not gone.  I also will talk to him about how my toe still hurts,  but now my ankle and knee are hurting as well.

I talked to another lacrosse mom at Jake's practice today.  She has been having similar medical problems.  Hers have been going on a bit longer and a big difference with hers is that her ANA test was very positive and I believe her RF was positive too.  Mine were both negative.  It was nice to talk to her.  She is a neat person and I hope she and I will get the chance to get together sometime soon.

Thank you to those of you who have commented.  It means a lot to me.  I'm learning a lot and it helps to have support from people who understand what I'm going through.

Friday, January 22, 2010

The Straw That Broke MY Back

Today the pain has been about a 6.   It hurts and I feel tired and nobody in my life understands.  (Poor Me, Right?)

I called my rheumy today because I am almost out of my pain meds.  I only take one a day and I save it for when I feel my worst and need to function.  If I don't need one, I don't take one.  I'm NOT abusing them.  Hell, I've lived for 7 months in constant pain and it's nice to finally get a few hours of relief in my day. 

When the nurse called me back, she said that my dr. doesn't want to give me a refill, but instead wants me to go to a pain management dr.  I'm so freakin' sick of her pushing me off to other doctors.  That's all she does.  It is so annoying.

And get this....she said: "The dr. wants you to go to a pain management specialist if you are having pain still, since all the tests show you don't have arthritis."   That did it.  I will be calling and asking for my files to be sent to the new rheumatologist I am going to see in a couple of weeks.  I wasn't sure I was doing the right thing, but now I KNOW I am.  In my mind, those words say, "I think this pain is in your head, chick, so leave me alone."

I just want to cry.

"I get aches and pains too"

I woke up with my foot numb this morning.  The pain in my ankle and knee is a lot worse.  My husband tells me it's just part of getting older.  That he gets aches and pains too.  This makes me angry.  It really does.  I feel as if he is minimizing my situation.  I swear, I hope and pray SOMEBODY gives me a diagnosis someday soon.  I can't take this much longer.  My body is telling me something is wrong.  Just because the blood tests aren't, doesn't mean it's all in my head.  I want someone to believe me and take me seriously.  I want to feel better.

I'm going back to bed.

Thursday, January 21, 2010


That's all I can say right now.

I just got back from another water aerobics class.  It was okay, but there were several exercises that bothered me.  It's mostly my left side that is messed up right now.  My knee was hurting and popping during a couple of exercises.  It felt really weird, so I stopped doing whatever it was we were doing at that time.  My ankle and toes hurt and couldn't move the way she was having us move them during the stretching part at the end.

Now I feel really weak.  I took a shower when I got home.  While in the shower, I was shaving and realized I was having a hard time holding the razor.  WTH?  It didn't hurt really, just felt like my hand was too weak or something.

I'm scared.  What is wrong with me????

Wednesday, January 20, 2010

Lyrica Helping??

I am beginning to think the Lyrica is working.  I've been almost pain-free today.  I'd say maybe a 2 out of ten.  Wow!  It's a good feeling.

So...does this mean that my pain is caused by fibromyalgia?  Lyrica is prescribed for fibro, right?

I'll have to ask my doctor.

Speaking of doctors.....I am going to a new Rheumatologist on Feb. 2nd.  Get this: My appointment is at 4:00 A.M!!!!  Can you believe that?  The receptionist told me that the appointment will last 4-5 hours.  That makes me feel good because at least he is thorough.  My current rheumy hasn't spent that much time with me in all of my appointments combined!

I'm going to water aerobics again in the morning.  I was planning on going tonight, but my daughter had a school meeting that we both had to attend.  I hope the workout feels good again.

I'm feeling pretty happy right now.  At least about my health. 

Monday, January 18, 2010

A small glimmer of hope....

I went back to the orthopedic surgeon today.  He gave me a steroid shot in my foot last week for what he thought was gout.  Besides hurting like hell, it only made my foot feel better for about 24 hours.  Hardly worth it. 

Today I told him that the pain is still there....he did an x-ray thing (I cannot remember what it was called, but it was cool) on my foot.  He never saw the x-ray my rheumatologist supposedly sent him.  All he saw was arthitis in my big toe.  It wasn't enough to cause the pain I'm having, though.  He also noticed my Raynaud's, because it was pretty bad today.  (not sure why because it was warm in the room and outside even)

We decided that I am going to start the Lyrica to try to get the pain under control.  I take 50mg three times a day.  He thinks I will know if it helps within a week, so I will go back to see him next Monday. 
He mentioned Scleroderma, but I don't know anything about that.  I need to find a new rheumatologist.  I really need some answers.

The pain today has been about an 8.  After grocery shopping, I felt like I had been run over by a truck.  The Lyrica makes me feel loopy so far.  I hate that, but I'm hoping it passes...and works for the pain too.

I took my first water aerobics class tonight.  I LOVED it.  It felt so good moving for an hour in the water.  Water is my best medicine.  While I'm in the pool, I feel great.  I've noticed that since my symptoms started back in July.  I take at least one hot bath a day.....sometimes three.  My goal is to workout at least 3 times a week. I've gained 3 pounds on that freakin' Prednisone....I want to lose that and about 10 more.

That's my update.  Thank you for those of you who are reading.  I'm enjoying the blogs I've found and read lately.  It's great to know I'm not alone in the way I feel physically.

Saturday, January 16, 2010


I'm a sucky blogger. I never seem to stick with it for very long. BUT....I want to try to change that.

I love reading blogs. I've been searching for blogs written by people who have RA, Fibromyalgia, or other chronic conditions. It has been very interesting and has helped me to see that I am not alone in feeling scared, weak, and confused. There are many people who didn't get a diagnosis right away and that makes me feel better too. I know that I will find out what's wrong with me eventually.

Today's pain has been about a 9 out of 10. We are in Baltimore right now for a lacrosse convention my husband is attending. I'm able to just relax here in the hotel room, which is nice, BUT I think the lack of activity is making my pain even worse. I've gone down to the pool and hot tub both days so far---which really helps the pain---but the relief is only temporary. We have had dinner plans each evening, which entails putting shoes on---an excruciating endeavor with my left foot in such pain. So, to get through, I take a pain pill right before we head out. It seems to take the edge off and allows me to almost walk without limping or wincing in pain too much.

I hate this. I really do.

Friday, January 15, 2010

I want answers!

It's been 7 months now. I've had pain in my arms and legs for 7 months straight. I've had fatigue that has made it next to impossible to accomplish my daily chores around the house. I feel like an old woman, yet I'm only 41.

I've seen my family doctor, a rheumatologist, and infectious disease specialist, a vascular surgeon, and on orthopedic surgeon. I've had more blood drawn than I care to think about and I've had a couple of x-rays.

Results? No answers. Everything is normal. I have Raynaud's.....which I've known for a while and it doesn't bother me much at all. And just a few days ago, I was told the excruciating pain in my foot that hit me a couple of weeks ago is gout. GOUT?

The rheumatologist put me on prednisone (a low dose, I guess). I felt less pain while on the 20mg but as I started to decrease the dose to wean off, the pain returned to normal. I hate prednisone, by the way. It makes me an emotional mess!!! I will NOT take that again unless I absolutely have to.

I've struggled with not knowing exactly where my pain is located....and I know that sounds weird. I couldn't tell if it was muscular or in my joints. I believe it is in my joints now. This foot pain seems to be starting in the joint at the base of my big toe and I feel how the pain radiates throughout my foot and even up my leg at times. I feel as if my wrists and fingers are getting stiff. My knees and ankles feel that way too. It could be my muscles aching...but I am thinking more that it is in my joints.

Anyway....I want to feel better. I want the pain to go away. I know none of this can happen without a diagnosis. I've heard the word "fibromyalgia" many times and I admit that some of the symptoms match up quite perfectly. I don't know that I have the "trigger points" that I've read about, but I do have many of the other lists symptoms. I've also had many people tell me that it's probably just stress. I've been told to "be happier" and things will get better. Exercise and I'll feel great. Well...I'd love to do both of those, but the way I feel is getting in the way.

I want to try to keep this blog going as a that maybe I can look for triggers or patterns. Anything to help get to the bottom of my mystery health situation.