Thank You

I truly feel blessed to be part of this amazing blogging community. I cannot tell you how much all of your comments and emails mean to me. Sometimes I struggle with feeling like a foster child with no definitive diagnosis. I guess it really doesn't matter, does it? RA, lupus, Lyme, or fibro....whatever the heck I have....it hurts. And all of you understand pain.

I hope that I can be there for each and every one of you when you need someone. I hope I can pay it forward.

Thank you guys....for helping carry me through the darkest, most painful, days I have experienced with this illness. I'm doing better emotionally. The pain is still bad, but I'm not afraid to take a pain pill or two a day....and that makes a huge difference at this point. I am hopeful that I will get a diagnosis soon and then a treatment plan that works. Remission..or better yet a cure... would be a gift from God at this point.

I pray for that gift daily....for all of us.

So weird....

I've written a couple of posts on my iPad this summer and none of them seem to be actually publishing (or even being saved as a draft!).  Ugh.  That's annoying. 

Not much new here.  Still not feeling well.  Still having some tremors and a little vertigo.  It's only mildly annoying.  At my rheumy appt, nothing was changed.  I'm off the stupid Lyrica (never did much-if anything-anyway)  He only talks about fibromyalgia now.  Funny because I truly don't think I have that.  (but what do I know?)

I tried to go back to my Infectious Diseases doctor because I wanted to have her run a Western Blot test for Lyme Disease.  My very first rheumatologist ran a C6 Peptide on me back in October of 09 and it was negative at .41.   I never had this doctor run one, because I just trusted the other test. I've since learned that there are a TON of false negatives on that test, so I figured I should try a different test that tends to be more specific and accurate.  Well....she won't let me come in for blood work.  She said that they are "not accepting new LYME'S patients" at this time.  Ummm...wth?  Seriously?  I have not been diagnosed with Lyme yet and I am an established patient.  How could she do that??  Obviously, she is afraid of the LD controversy and wants to stay as far away as possible.  ARG!

I'm scheduled to see a LLMD (lyme literate medical doctor) at the end of October.  We don't have any of those here in Texas, so I have to go to Missouri to be seen.  Insurance doesn't cover it, either.  I'm a little frustrated because it's not fair that people aren't getting treated for Chronic Lyme properly, doctors don't believe in it, and therefore those people that DO indeed have LD are going longer and longer without proper treatment and they just get more and more sick as time passes.  It's so unnecessary.

Then I start worrying about the other side being true.  It's not a scam, is it?  I mean...I don't want to have to pay tons of money to see a doctor in another state, but I really think LD is a possibility based upon my symptoms.  I don't want to be on antibiotics for months and months (not to mention the supplements, etc).  BUT I *DO* want to feel better and I *DO* want my life back.

It's hard for me to type much because I have terrible concentration these days, but this journal is important because I need to keep track of my symptoms, treatments, and meds and my memory SUCKS now.  It's rather scary, actually. 

Well, I promise to update sooner.  Hope you are all feeling well and having a nice summer!  :)
xoxo,
Beth

It's Real, People. I Promise!

Yesterday my husband said something to me that hurt.  Sure, it's not the first time it's happened and I'm sure it won't be the last....but this was really different.  This is something that I guess I just realized, REALLY realized, people without an invisible illness, like RA, must honestly believe. 

He said, "Beth, you've been to many doctors over the past two years.  A couple of them didn't think you have RA.  A couple of others didn't think you have fibromyalgia. Maybe it's time to try something different..."  I was trying to guess what his marvelous plan was, but finally just took the bait and asked, "What can I do?  What do you think I can do to finally find a definitive diagnosis and get started on a treatment plan that will possibly end this almost 2 year flare from HELL?"
Guess what his idea was..... it's a good one......"What about a change in attitude?  Maybe having more fun, going out more, etc?"

Oh, was I pissed off. 

Then I started thinking about all the people who don't understand the relentless pain I have been dealing with (which is pretty much all my friends and family) and it dawned on me that it's really difficult to relate to something you don't have in your life yourself.  I mean, I have no idea what it feels like to:

break a bone,

 

get stung by a bee,

or God forbid be attacked by a shark...

BUT...I do believe the people that experience these things are in pain---even though I don't know how, exactly, their pain feels.  I just know it is pain.  Pain that doesn't go away by merely trying to be happier or getting your mind off of it. 

Pain is your body's way of telling you something is wrong.  Once you know what is wrong, you can begin to find the best way to get better. 

I want to help people understand that just because you can't see what hurts those of us in my condition...and it seems like we don't just "get better" like most people....we are in legitimate pain.  It's real people!  

Stepping off of my soapbox and wishing you all a wonderful day!

*hugs*

What Makes Me Sad....

I went to IKEA today.  I love that place.  So much to look at and amazing ideas.  I could shop there all day.

But I CAN'T!

Why?  Because some no-name, nobody can figure it out, illness makes me feel like dirt after shopping for about 30 minutes.  My legs start to ache and I start to feel feverish.  It's horrible, but it always happens when I try to do anything that requires walking...including grocery shopping.   That really makes me sad.  I can't have a normal life if this is how I feel when I go out and do something.

I'm home now.  I'm exhausted and have a temp of 99.5.  I need to find a rheumatologist, even though I know they will be stumped too.

Another symptom I'm having a lot (with the chest pain and fast heart rate) is dry mouth.  Fun, eh?

Hope you all have a wonderful Easter weekend.  

Here We Go Again

I am going to call one last (I hope) rheumatologist tomorrow.  I had to stop seeing the one I've been going to because he is not on insurance and since he still hasn't diagnosed me, it's just too dang expensive.  I told him and he totally understood.  It sucks having to start over, but we have to do it.

Meanwhile, I feel like I'm dying.  I'm not kidding.  I'm sicker than I've ever been.  I'm in so much pain.  My joints in my knees, fingers, and toes hurt all the time lately.  After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day.  My chest is now hurting a lot of the time, as well.   Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time.  I'm just not feeling well at all.  Quite frankly, I'm scared.

So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork.  I need Dr. House!  (don't I wish!)

Seriously, though, my gut tells me it's lupus.  My last doctor was going to test me again for it, but he never got around to it.  I don't know what to think or do anymore.  All I DO know is that I am getting sicker.  I need help and I pray that I can find a doctor who can figure this out.

I've been reading blogs every night, but just haven't felt like writing (or even commenting).  I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way!  and 2~to keep a journal/record of my symptoms...my memory sucks these days.

Hope you all are doing better than I am.

Four Rheumatologists...Four different opinions

Doctor one....Tests are all normal...Must be fine.
Doctor two....Undifferentiated Spondylarthropy or Seronegative RA
Doctor three..Fibromyalgia
Doctor four...Fibromyalgia AND something else that he needs/wants to figure out.

I saw one last (I hope!) rheumy on Friday.  He was very nice.  He took a lot of time before the exam talking to me about my symptoms,  my experiences with the different doctors, my feelings, etc.  After a thorough exam, he told me that he definitely agrees that I have fibromyalgia, but he doesn't think that's all I have.  He did a lot of bloodwork, so hopefully we will figure it out this time.  Once and for all.  He says that I should hear back from him by a week from tomorrow. 

Meanwhile, he said I should stop taking the mtx.  If, after a couple of weeks, I flare big time...then we'll put me back on it.  He took me off the arthrotec.  (which allows me to stop taking the kapidex for my stomach).  He changed my lyrica from 50 mg three times a day, to 75 mg twice a day.  (easier for me to remember---I always forgot to take my middle of the day dose of lyrica for some reason).  He wants me to switch from Effexor for my depression (that's NOT working) to Cymbalta as it is recommended for people with FMS.  I have to go to a psychiatrist to get that going, since it's tricky weaning of Effexor and I've felt suicidal at times recently.  (Ugh)

Anyway....I have to say that I had a really good day painwise!  I was about a 1-2 this morning.  After being at several lacrosse games, I started to hurt a bit around 2:30 so I went ahead and took a pain pill.  The rest of my day was great.  I had some fatigue during the middle of the day...and I'm exhausted right now...but it was a better day, healthwise, than any I've had for a very long time. 

Praying for more days like this so that someday soon I can get a job, feel well, and start living a happy life again.

Hope you all had a good weekend and very little pain!
Hugs

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 journal....so that maybe I can look for triggers or patterns. Anything to help get to the bottom of my mystery health situation.