Sunday, November 21, 2010

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 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.

Sunday, November 7, 2010

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!

Friday, October 29, 2010

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.

Monday, September 13, 2010

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. 

Thursday, September 2, 2010

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'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.

- Posted using BlogPress from my iPhone

Location:Crestwick Dr,Murphy,United States

Monday, August 23, 2010

Methotrexate, do your thing!

Today I saw my rheumatologist and we decided it is time to try MTX. I am taking 7 2.5 mg tablets a week. I hope and pray that this drug works. At the appointment, I also got a steroid injection for bursitis in my left hip (it hurt!!!) and a pneumonia vaccination.

The pain has been really, bad. As long as I don't have major side effects on mtx, things can only get better. Right?

- Posted using BlogPress from my iPhone

Saturday, August 21, 2010


I have been in the worst pain this week. I moved up my rheumy appt. next week from Thursday to Monday. I have to be strong, but I'm not sure I can go on like this. Please help. This truly sucks.

Tuesday, July 20, 2010

On Vacay

I just felt like blogging because I am so down. It is so therapeutic to blog. Right now I should be pretty happy, but I am down and don't know if I will ever be up again.

I don't see my family nearly enough. We are in Tennessee and it is the first time I have seen my aunts, uncles, cousins, and even my mom in a long time. I have felt pretty well physically (except for during the long car ride from Texas-that caused mucho pain!)

So why in the world should I be so unhappy?

It's my marriage. It's very much on the rocks. It has made this trip really bad for me. I have cried so much and I have not been able to enjoy my relatives the way I should.

I'm trapped in my marriage, though, for many reasons.
1. My kids---I don't want them to have to change schools, lifestyle, and step-brothers. They are very happy here.
2. I have no job. He made me quit a job I loved at a school I loved. It made sense at the time and I honestly enjoy being a stay at home mom. But---I have no income from being at home.
3. This damn arthritis. I seriously don't know how I could work full time and be a single mom when I feel the way I have for the past 12 months. I hurt so badly when I have a busy day and I can't even imagine the fatigue I would experience. Ugh.

I try to "grin and bear it" for my kids. I love my husband at times and he makes me laugh....however, he is not real supportive of my condition---in fact, I really think he resents me because of it.

I will figure things out eventually, I suppose. It's truly scary feeling suicidal. I want to enjoy life again. I want to be happy.

On another note: my sister, who has had psoriasis for a long time, took one look at my skin lesions and easily identified them as being psoriasis. I guess I need to go to the dermatologist. If I am diagnosed with psoriasis, I will officially be diagnosed with PSA. Not that it really matters, but a name will make me feel validated in a way. "Undifferentiated Spondylarthropy" seems so......nonspecific. When anyone asks me what I have, I hate telling them. All I know is it is real---my rheumatologist knows it is from my bone and joint scans---and it would be nice to finally have a specific diagnosis.

Thanks for letting me vent, my blogging world friends.

- Posted using BlogPress from my iPhone

Thursday, July 8, 2010

Quality of Life

It has been a horrible couple of days. My pain level has been a 10 plus. I'm taking 2 pain pills a day and feeling guilty about it. I hate that. Why should I feel guilty for wanting a couple of hours of being able to function? I get so tired of hearing people talk about how dangerous pain meds are. Honestly, I think it is much more dangerous for me to feel nonstop pain all day long. It has been almost an entire year and I miss my old life!

My left big toe is getting worse. It now pops loudly when I move it. It's painful and actually freaks me out a bit. I definitely can't wear shoes still. My knees hurt a lot more than they used to as well. My middle back aches if I go too long without resting and it's been difficult to keep some of my fingers straight lately. (ugh)

My skin is a mess and I have progressively gotten more and more into the habit of picking it. It's dry and flakey and I pick it when I'm not thinking about it (ie while I'm reading/driving/editing photos). I'm pretty disgusted with myself.

So, yeah, my quality of life is pretty miserable. I want to be a good mom and wife, but I feel as if it's not happening. I go back to the rheumy in a week. I'm not sure what is going to happen, but I figure an adjustment or change in meds is probably in my future. I am terrified of methotrexate, but I will try anything at this point.

I hate complaining, but I need to vent. It's either vent or bawl my eyes out....

- Posted using BlogPress from my iPad

Saturday, May 8, 2010

What's the Deal???

I've been avoiding posting because I'm so sick of whining.  Ugh.  I feel like that's all I do anymore.  I hate it.

I went to the rheumy on Monday.  I had a noon appointment, but didn't get in until 3:30.  Oh well....this doctor is worth it.  At the time, I had had about 3 good days.  When I say good, it means the pain was probably about a 4 most of the day and I didn't need to take a pain pill at all.    He upped my dose of alzulfidine to SIX a day (gag) and he did a chest x-ray.  I had been having some pretty bad chest pain in the upper left part of my chest.  He listened to my lungs and they were clear, so we'll see what the xray shows.  (I will call for those results Monday)

Telling the doctor I was doing better must've jinxed me because the past few days have been HORRIBLE!!!  The pain in my knees is so bad and I'm stiff all day long.  I walk super slowly and I feel miserable.  I don't know what happened as the weather has been nice and I've been taking my meds.  All I know is it really sucks. 

I know my husband is so sick of me.  He doesn't even ask how I'm feeling anymore.  He has even mentioned that I might be using the pain as an excuse not to go out.  I would LOVE to feel well enough to go out!  I really hate being at home all the time.

Unfortunately that's my update.  I'm trying to stay positive.  I'm trying to be happy.  But I'm not.  I'm depressed and down and really worried that I'm never going to be pain-free again. 

Wednesday, April 7, 2010


Hello everyone!  Today is a very important day.  Today is the first day since last July that I have had NO joint pain at all!  The day isn't over as it's 4:30 pm, but I think this is a good sign, don't you?

I went to the rheumy on Monday and all my blood work looked good, so he upped my dose of azulfidine.  I am now taking 4 a day.  I've decided that two in the morning and two at night is best for me. WOULD BE a perfect day, however, my stupid stomach is a mess.  I'm nauseous and my tummy is super rumbly.  I'm resting right now in hopes it will get better.  I want to enjoy the day.

I'm having some girl issues.  I'm not going to go into detail with those issues because I'm not so sure they are important (or truly issues) at this time.

I hope everyone is doing well.  Enjoy your day!

Saturday, March 13, 2010

It's been a while....

I'm so sorry for not updating, but quite frankly I've been so depressed lately that it's hard to get the motivation to do anything. 

The Plaquenil didn't work for me.  It caused me to develop a bad rash all over my body, especially on my arms.  So...I went to the doctor, got a shot of something, and stopped taking the Plaquenil.  A week later, I started Plan B:  Sulfasalazine.  The doctor has me taking 1 pill a day for a week, 2 pills a day for the next week, and 3 a day the third week.  After that, I go in for blood work. I guess SSZ sometimes affects blood counts.  

Meanwhile, I am on a Prevpac for the h.pylori.  It really bites as it is 4 pills in the morning and 4 at night for 2 weeks.  

I don't know which of these is responsible for it, but I'm getting the most awful taste in my mouth a few hours after taking the medicine.  It's kinda's gross.

Anyway....depression has kicked in BIG TIME for me.  I'm truly struggling.  I feel alone and worthless right now.  Thoughts of suicide are becoming more and more frequent.  I don't know how long I'll be able to continue to go on the way things are going in my life.  

I'm really lonely right now.  Wish I had friends in town who understood what I'm going through.  I wish my husband understood.  I feel like I'm on an island and I don't like it at all.

Tuesday, February 23, 2010

Update...After Almost Two Weeks on Meds

It's been a while since I've updated and that's because...frankly....I feel like CRAP.  I guess the medication doesn't agree with me very well.  I feel nauseous a lot of the time and have a lot of stomach pain.  I've been extremely tired-to the point it's hard to function-and that's no fun.  Also...the pain has been very bad.  Most days it's around a 7, but I have had several days of 9-10 pain levels.  The pain is still in my arms and legs, but the worst in my foot and now my knees are really starting to hurt. 

I have an appointment to see my GP next week about the h. pylori infection, but other than that I am just waiting for the Plaquenil to start working. 

PLEASE let it start working soon.  I am barely functioning right now.  I'm missing out on life and I hate it.  I can't go on like this.  I'm so miserable.

Wednesday, February 10, 2010

Houston We Have A.....


I got in to see my rheumy this morning because my pain the past two days has been HORRIBLE and they didn't want me to have to wait until the 19th.  He has diagnosed me as having Undifferentiated Spondyloarthropathy.  I can barely pronounce it, but it's what my doctor thinks I have.  I will from here on out refer to it as USpA.  You can read about it here, but basically I get the impression that it's a seronegative (meaning I don't have the positive rheumatoid factor in my blood tests) rheumatoid variant arthritis.  It is chronic, but seems to be fairly easy to treat.

I'm now going to be taking a drug called Plaquenil twice a day.  It's a slow-acting drug, but it's the "least toxic" of the drugs we can try, so we'll start with it.  I might not see results for 2-6 months.  (ugh)

He saw a lot of inflammation in my scans and I also have osteopenia (so I will be taking Caltrate).  I have a vitamin D deficiency so I'll be taking lots of vitamin D for a while.  I will continue to take the Lyrica three times a day, Arthrotec twice a day, as well as that stomach medicine that I can't ever recall the name of.  Oh...I also have an h. pylori infection that I have to go see my GP to get taken care of. 

LOVELY, eh?  Should be a fun journey.

But at least I have an answer.  And a plan.  And I'm going to take a nap now.

Thank you for all the support.  It means the world to me!!

Sunday, February 7, 2010

Not Sure How To Manage Pain's pain was a 9 all day long.  I've been taking all my medicine and the pain is worse than ever.  I don't know how to handle it.  I really don't.  It's not fun. 

Wednesday, February 3, 2010

I think we are getting close....

to a diagnosis!

I went to my new rheumatologist yesterday morning.  Wow.  After he took my medical history (in which he asked more questions than most job interviews I've been on), he did a very thorough exam.  Then he brought me back into his office to explain what he was thinking, give me some reading material, and let me know the plan of action.  I, then, had 7 vials of blood drawn, about a zillion x-rays (on the HARDEST table in the world-ouch!), and a bone density test.  Today I am going for a bone and joint scan.  I feel pretty confident that my doctor will figure something out with all of these test results.  I go back on the 19th and he will go over my results with me then.

For now, he is leaning toward Psoriatic Arthritis.  He put me on Arthrotec 75 twice a day and also another medicine (The name escapes me right now) to help counter potential stomach issues as Arthrotec is an NSAID.

My pain in my left foot/ankle/knee was horrendous last night.  It kept me up during the night for a while.  Hopefully this new drug will start working soon.  I'm really ready for the pain to be gone for a while. 

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.