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.

Lesson Learned .... the hard way.

So....I'm officially going with the fibromyalgia diagnosis. The tests all came back pretty normal. No lupus, no inflammation or rheumatoid factor. My magnesium was low, so I'm pillin' it up for that. There was strep in my urine, but i have no symptoms of a UTI, so we aren't treating it. I tested positive for h.pylori again (been there, done that with the zillion antibiotic regimen to treat it, so I'll talk to my GP about it and probably will just ignore it). I stopped the mtx and arthrotec and am slowly increasing my Lyrica dose from 75mg 2x a day to around 200mg 2x a day.

I'm not sure why, but....this week has been AMAZING!!!! I've had my first completely pain free days since July 2009! I had 2 of them! And the rest of the week the pain was minimal...maybe a 2 or 3 out of 10. It was great!! I also had a lot less fatigue.

I've been really busy. My photography business is booming, Carly and Jake had tech week this week for a show they are in. They performed Friday night (with cast dinner after), Saturday matinee (with cast lunch after), Saturday night (I said heck no to cast dinner last night because I was too tired!!!!), and today is the last show at 2:00. I'm photographer of the show and I also photographed Carly's high school pop choir show (which was LAST weekend), so vie been editing every moment of my barely existent spare time. Saturday night I was up till 3:00 a.m. preparing/packaging four lacrosse teams' photo orders and working on a collage for the director of the play the kids are in.

So, guess what? Today I really hurt and feel like crap. I felt my knees getting "warmish" feeling last night, but today~full-on pain. Ugh. My knees, fingers, and ankles hurt. I feel flu-ish and yuck. I still have to take the portraits of the actors today before the last show which means setting up backdrop, lights, etc.

I guess I need to learn to NOT overdo it when I feel well. It's just...it had been so long and it was really nice to have energy and to not hurt again. I couldn't waste the opportunity to be productive.....

Still not 100% convinced I don't have sero-negative RA, but I guess 3 out of 4 doctors must be right.

Have a good day all and thanks for reading and for all your helpful and friendly comments.

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

A Second (or third) Opinion

Today I saw another rheumatologist.  I wanted another opinion.  This doctor came highly recommended...heck, he was even President of the American College of Rheumatology--woohoo!  He must really know his stuff, right? 

I took all my medical records and walked into this (much nicer) office with high hopes.  The nurse practitioner examined me, talked with me,  and spent a decent amount of time asking me questions.  She was nice.  After a little while, she left to discuss my situation with the doctor.  Fifteen minutes later, they both walked in.  He shook my hand and almost immediately told me that after reviewing my records, there was NO WAY I have rheumatoid arthritis, undifferentiated spondylarthropy, psoriatic arthritis, etc.  Since my tests have all been negative and based on my exam with the nurse practitioner, he believes that I have Fibromyalgia and Chronic Fatigue Syndrome.  (oh, and severe osteoarthritis in my big toe) He says that my rheumatologist ALWAYS gives the same diagnosis.   He implied that he is out of date in some of his testing methods and diagnosis procedures.  WOW.

This doctor says I won't die from this.  (DUH.  I know that.  But dammit some days I want to!)
He says I should stop the mtx and continue all my other meds.  He says yoga and pilates would make me feel better.  He, then, said that I could schedule another appointment with him if I need to in about 6 weeks. 

I left there in tears.  I feel like I am back to square one.  I'm not sure what to do.   Which doctor do I believe?

I'm so bummed.

If it's not one thing, it's five others...

Haha! Just kidding, sorta.  It's not five things, but one new one. I guess it's the extra folic acid I'm taking the day before, the day of, and the day after my MTX....but oh my WORD.  I'm so nauseous.  It's awful!  I have what I would consider a verrrrryyyyy strong stomach.  I've only thrown up a few times in my life.  I feel queasy and icky when I get a stomach bug that causes everyone else to puke like crazy.  I'm lucky in that sense.
HOWEVER...for about 3 hours yesterday, and for a couple so far today, I have been experiencing sudden bouts of nausea that are extremely close to causing me to throw up.  My stomach feels horrible the rest of the time...gassy, queasy, the works. 
Do any of you have problems with folic acid?

I will blog more later...when the room isn't spinning.  After all, it is National Invisible Chronic Illness Week and I want to blog for the cause.  What a great idea to spread awareness.  God knows I was very much unaware of these invisible illnesses just a little over a year ago. 

Not Doing Well

I don't know why, but I have been wondering if I might have Lupus instead of "possible" psoriatic arthritis or undifferentiated spondylarthopy. I know that It was ruled out from previous blood tests many months ago, but from what I've read it is diagnosed by having a certain number of symptoms. I don't have the list, but I think I'm pretty close.

I've never gotten answers about the strange rashes that I keep having. I'm getting little circular sores that are raised and scaly. I'm a picker and these drive me crazy because I just want to get the flaky, peeling skin off. But--regardless--they are something that is new to me. I had never seen little lesions like this before I started getting sick.

I, also, get small patches (typically on my arms) that itch intensely and are hot to the touch. They usually are gone within about 15 minutes. They remind me of hives. I see no pattern in these. I get anywhere from 1 to 10 of them a week.

I'm not sure if it's the mtx or not, but I have to pee way more often than normal. Sometimes I go 5 times in an hour! It's not just a little each time either It's a normal amount. It's very annoying and I find myself avoiding drinking water so I don't spend all day in the restroom.

My tummy is a little upset lately as well. And the pain...it's no better yet. My knees are the worst offenders these days. I take two pain pills a day so I can function.

Stress level here is high as well. (sigh) That can't be helping me.

I sure hope all of you are doing better than I am this week! Hope you have fun plans for the holiday weekend.


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Location:Crestwick Dr,Murphy,United States