RA? PA? something else? Please help!

[Kim703]

I have a story here...and hope that someone out there can give me some insight. For reference, I am 2 weeks shy of 40, and female.

About 2 months ago, I started with severe pain in my hands and wrists. It got to the point that I couldn't button my pants or pick up my kids. So, I went to the dr, and my bp was also very high: 160/110. It has never been that high for me. Gradually, those symptoms have subsided, including my BP, which eventually dropped down to normal levels. I am left with a variety of symptoms that come and go. In the meantime, I have gone to my GP 5 times, had numerous blood tests, xrays, etc. I thought maybe thyroid, but all my tests (including ultrasound) have been completely normal. Most everything else has come back normal, except for my CPK and CRP, both of which were elevated.

I am now going through a "flare" and have the exact same symptoms I started with.  The pain in my hands, wrists and arms is becoming unbearable, and I just want to cry.

Symptoms include:
~Low back pain--Off & on; radiates down leg and up back; Worse on the right side (sacroiliac joint?)
~Hand/wrist pain
~Arm/Elbow pain--hurts when leaning on elbow
~Knee pain--especially in right knee
~Swelling--Ankles; hands/wrists; face/neck (glasses are now pressing into face and causing "dents") At one point - all over
~High Blood Pressure--At worst: 160/110
~Eye symptoms--Developed more floaters; Vision is more blurry (eye dr says no issues)
~Digestive problems--Have been constipated for months, recently having bouts of diarrhea; Gas/bloating
~Skin symptoms--Dry, itchy skin all over; Rash on back, chest
~Fatigue
~Restless legs--Have had this for at least a few years, very severe
~GERD--Take Prilosec OTC every day - Major symptoms if dose is missed(vomiting, acid in throat)
~Anxious feeling--comes and goes
~Numbness/tingling in hands--comes and goes

Saw the rheum on 6/6, sent me for repeat blood tests (CPK, CMP, etc); also xray of sacroiliac joint, and EMG. I go for the EMG on Monday. I think the rheum is thinking either Spondylitis or something similar. Of course, when I saw him, no symptoms other than some minor back pain. Figures. I do have a history of psoriasis on my knees and elbows (very mild), which makes me start thinking PA.

The other night, and tonight, a strange new symptom: the veins on the tops of my hands were HUGE and bulging, like they were really swollen.  My wrists are also looking the same way - my forearms are looking blue, because my veins are so prominent.  Also, today, I have a very tender spot along my jaw.  I can't even touch it, it hurts so much.  Feels like someone punched me there (but that has not happened as far as I know!).

So anyone have any ideas, or have similar symptoms? Any thoughts greatly appreciated.

Thanks for reading, and hope someone can help me!
Kim

[sadie1246]

When I was your age I began to have all of those symtoms too.  I have auto immune disease this is when your own cells began to attack you thinking you are the enemy in a war that is hard to win. I went from doctor to doctor and when it is active they can catch it when it is in remission they can't.  My MS was found with an MRI.  Numerous blood work found the auto immune.  Go to your Rhemy so to speak and have them test you for auto immune.

[jennerfennerbenner]

Kim,

I'm very sorry that you had a rotten experience.  I went thru the exact same things-symptoms were identical except the blood pressure.  I highly disagree that you have a heart problem-being a nurse I have seen many reasons why bp is elevated and one is pain.  

I was even sent to a Psych dr., before I finally ran into the right Rheumy that made the diagnosis of PA.  Unfortunately there were no abnormalities in any of my blood work so couldn't come up with an answer that way.

Once PA treatment was started I turned into a whole new person.
Just knowing the dx made life so much easier.  Also appreciative of good drs, I tell you I'll never back down to another dr. again after the run arounds they gave me!

Jen

[smittygirl]

I am so sorry you had to go thru that, there are a lot of bad Dr.s out there and the first one I went to was a complete idiot too.  After almost a year of being with my 3rd rheumy I am changing yet again.  Won't bore you with the reasons why but when they start to make you feel like you're a burden to them it's time to move on.  Yours sounds like a first class jerk.  Glad you have the fight in you to keep pursuing it, DON"T EVER GIVE UP!!!!   I was like a medical investigator and even that Mayo doc was impressed by my tenacity and my findings.  Don't remember if I told you this already but as you go thru this process make sure you make the office give you copies of all your lab tests etc.   The next doc will look at those and see if there was a  test that should have been done that wasn't.  Keep a file going, it really helped me.   I never knew I had the HLA-B27 gene, that first doc I told you about ran the test for it but never told me.  Until I asked for copies and went to the next doc is when I figured it out.  Then I called my gyno for copies of my UTI test, after reading that and going on the AF website is when I figured out what I had.  Be your own advocate and don't take any **** from any doc, you know your body better than anyone.  You will find your answers Kim, just keep going until you do and it's alright to have a "melt down" now and then, I had plenty of them in my pursuit.   Keep writing and venting, it helps!!!!   We are here for you always.

Sue

[Kim703]

So, the rheum appointment was a complete waste of time and effort.  Ended up coming out of there in tears, but with renewed determination as well.  Guy ended up being a COMPLETE jerk.  Just totally discounted my symptoms, since "all the tests came back normal".  Wanted to punch him.  And when I told him about the veins in my hands and arms, he said "I can get rid of those" ---- and held my arm up!!!!!  Lots of expletives on the tip of my tongue, but I'll refrain.  So, I guess I'll just be walking around with my arms up in the air from now on!  Somebody shoot me!

Naturally, I have made an appointment with a DIFFERENT rheum.  And she comes highly recommended.  I am positive this is AI related, just need to figure out which disease(s) have come for the party, so I can get treated and get some relief soon.  I'm sick of not being able to do things with my kids.  They need their mommy!

Thanks again for listening!

[smittygirl]

I'm right there with txsilver, by the time I got to my appt. at the Mayo Clinic, I had done tons of research and brought all my tests with me to the Mayo.  The Dr. said he couldn't in good conscience charge me for the visit because I had figured out on my own what I had.  So keep digging and looking for answers, research the heck out of the AF and Mayo's web sites.   I also disagree strongly with the heart comment, except for the high BP your other symptoms are not cardio related.    The stress from pain can raise your BP, hell just the stress from trying to get answers will raise it.  Do keep an eye on that though, I had to go for a physical for a new job and had had a really stressful week, my typical BP is around 117/72.    That day it was 170/100!!!!  My resting heart rate was over 100 as well.   I bought a good home BP machine and my pressure is fine.  Stress and pain were the reason it was so high that day.   Like TX said, you are doing great, don't give up!!!  Keep talking with us.  Take care.

Sue

[txsilver]

LOL, amen!  I have run into a few instances where I had more info and more current info than the Dr, it's enough to make you want to pull your hair out (assuming MTX has not robbed you of any.)  I love that you are persistent enough to get them to run tests that they think you don't need and that they showed something.  We never want things to be wrong but it is sooooo validating when they find something and you get a dx and a treatment plan.  I guess you have to be sick to understand the victory in having a name for your illness, but I am so I do.  Keep those docs on their toes!  You are doing great!

[Kim703]

I'm pretty sure there IS more than one dx.  Just found out last night that I also have a thyroid nodule (after they INSISTED there was nothing wrong with my thyroid, but did the US just to shut me up).  At the beginning of all of this, was thinking Hashi's, and now I'm going back to that.  They FINALLY referred me to an endo, so I'll be making the appt as soon as possible.  But, I have a history of postpartum thyroiditis, as well as a family history of hypo (my grandfather).  So that's a definite possibility.  I have my appointment this morning with the rheumy, and I'll bring it up to him anyway.

So aggravating that I know more than the freakin' doctors.  I'm not even close to being in the medical field!

Kim

[txsilver]

Reading your symptoms reminds me of mine when I was trying to get a dx.  Don't be surprised if there is more than 1 disease at work here.  Autoimmune diseases like to arrive with guests and it certainly makes it harder to dx when you have more than 1 thing going on!  
I did not know I had psoriasis until the Dr asked pointed questions and showed me a little bitty spot on my toe.  I have RA, AS and maybe PsA and the list goes on from there.  The waiting is the worst part.  Hope you hear from your rheummy soon.

[Kim703]

Sorry, I don't see this as a heart problem, and certainly not "classic symptoms" of one.  Except for the high bp, which can be raised for lots of reasons.

Anyway, just back from the EMG, which was normal.  I had one dolt that was trying to tell me that it was carpal tunnel, so we can now rule that out, as well as all the muscle diseases.  This definitely has to be joint related.  (if it was heart problems, I'd be dead by now, with the symptoms going on for 2 months!)

Hope the rheumy will have some thoughts for me.

[zmombomb]

these are classic symptoms of female heart troubles!!!  get your heart checked deep for aortic vein blockage!!!

[smittygirl]

I live in NY now but lived in Fla for 20 years and that is where I got sick.  I was tested for Lyme about 10 times, but they always asked if I had been out of the state, which makes sense with what you said.  Where in FLA are you, I lived on the West Coast near Tampa.  Left there a year ago to be near family since these diseases can take their toll and I had no family there.    Please stay in touch with me and feel free to vent any time you want!

Good luck Wednesday.

Sue

[Kim703]

Thanks for responding...I know, lots of things going on, which is starting to make me think that there's more than one diagnosis.  I think the rheum was considering AS, hence the xray of my sacroiliac.  But, that doesn't seem to fit with the wrist/hand thing.  We also discussed Lyme, which is not common here in FL, but...I'm originally from New England and lived in PA for a while, so it's definitely a possibility.  I'll definitely look to get the test done anyway.  Also had read about the HLA-B27, so I'll be asking for that.

Someone else asked about an infection, and the only thing I had was a mild case of strep end of January.  About 3 months or so before this started.  I have had 2 yeast infections in the last 4 months, which is unusual for me as I hadn't had one for almost 10 years.  But, if I have an autoimmune thing going on, it kind of makes sense.  Digestive wise - I was dx with IBS about 15 years ago, but haven't had a flare of that for quite a while.  The GERD started after my last pregnancy, (actually, during) which was about 2 years ago.

As you can probably understand, I'm just getting really frustrated without a diagnosis.  And, the GP I was going to had no clue, and didn't seem to care about helping me.  Big practice, hospital affiliated, lots of residents.  Obviously, I'll be switching.  But, at least I got the referral to the rheum, so I'll continue there.

Thanks for the suggestions.  My next rheum appt is Wed, so if my symptoms keep up at least I have something to show him this time!  I'll let you know how it goes.  Thanks for helping, and letting me vent!

Kim

[smittygirl]

WOW, you have a lot of different symptoms so I'm not sure how to respond.   Have they tested you for Lyme disease?   AS is another possibility, I have it, as well as Reactive Arthritis.   I've also just had an EMG done as well as other tests for MS.  The first rheumy I went to told me I had psoriatic arthritis and when I told him  I didn't have psoriasis he said " you'll get it"!     I didn't have PA and went to 3 dr's before being properly diagnosed so don't give up until you get the right DX.    Before your symptoms did you have any kind of an infection, UTI or any type of digestive problems.  Also ask the dr. to test you for the HLA-B27 gene when they do blood test, it they already did blood work make them run the test for it.   Like myself you can have more than one type of auto immune disease going on.  Please stay in touch with us and let us know what you find out.  

Sue