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New here and would love opinions on what the heck is going on with me!

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Posted 8/9/2011 5:34 PM (GMT 0)
Hey everyone!

I am 25 years old and have a 5 month little girl. I have been struggling with managing all my symptoms and taking care of her while still working full-time.

I was diagnosed with fibromyalgia, chronic fatigue and IBS back in 2009. I have always thought it may be a different auto-immune disorder. I have had lab tests come back with high protein levels, high sed rate, negative ANA. I also have been anemic at times and other times not, had high white blood cell levels. I had MRIs/xrays of my stomach, brain, kidneys, can't even remember what else but all coming back ok. My grandfather passed away from complications of lupus. I also have other relatives with MS and RA.

Here is a list of my symptoms I wrote down one day recently that I'm going to bring to my doctor. I am currently on 100mg of cymbalta and have tried setraline, zoloft and several other ones that helped less. I have only been seen by my GD and feel as if she thinks all of these symptoms are only caused by depression. The thing is I am happy in my life and generally don't feel depressed until these flare-ups get bad! I feel hopeless sometimes when none of these drugs help and wonder if I will ever feel good again! Do these symptoms sound similar to what any of you are experiencing? Any advice?? Thanks!!

symptoms

rash all over my body when I am outside, had to stop indoor tanning bc of rash and feeling weak after tanning
feel like I have the flu for days on end, stomach hurts to lay on,
feel so tired even after sleep
painful headaches-have been helped with cymbalta but still get them where lights/sound hurt
head feels like it is burning during flare ups
feel like i'm going to puke just walking up the stairs, feel sicker after exercise
bruises all over my body for no reason, very bad night sweats,
start getting sweaty and burning face at work like i'm going to pass out
very bad vertigo, dizzy spots and blurred vision, can't think straight
extremely itchy eyes
ache all over
constipation and then diarrhea
joint pain in my fingers, ankles and toes,elbows-a lot of times it feels like i can't move them out of
the position they are in bc of the pain
in the morning i feel like i can't move
hard lymph nodes in neck and back
rubbing certain parts of my body hurts, touching feels like hitting
have had these symptoms since 2008
protein in urine during pregnancy, blood pressure skyrocketed
went to the er several times with a high temperature of 103-105 and they couldnt find any infection
went to the er with terrible stomach pain and they thought I was having appendicitis but couldn't find out what was wrong and they gave me valium...
when i was pregnant i was switched to zoloft and all my symptoms returned, on cymbalta I have felt
better but in the past 2 weeks I have been getting worse with all my old symptoms coming back
feel like I can't think straight, can't concentrate or use my brain like i used to
first week of august 2011 got butterfly rash on nose and cheeks two different times and stayed for a couple hours only
very bad heartburn
Posted 8/9/2011 11:51 PM (GMT 0)
Sounds like you have some of the same symptoms I have and more.
I'd ask for another ANA test and show him this list.

I hope you can find an answer soon.
Posted 8/10/2011 5:53 PM (GMT 0)
I'd visit a rheumotologist for a work-up.
Posted 8/10/2011 6:45 PM (GMT 0)
Why do doctors assume everyone is depressed because they don't feel well, but show no physical symptoms?  I have had a lot of your symptoms and my PCP always treated it as depression.  Over a year ago I developed hives.  My PCP gave me some cream to put on them and told me to just quit scratching.  about 4-5 months ago the hives got really active and nothing I did helped.  I went to the dermatologist who did a biopsy and the results were hives.  The derm ordered blood tests (including ANA) and urinalysis.  I thought finally, someone can figure this out!  WRONG!  Everything came back completely normal.  I had my physical by my PCP soon after the diagnosis.  Finally, someone payed attention.  My PCP had noted in my chart I had a hivelike rash over a year earlier....and depression, of course!  I showed her a copy of the normal blood and urine labs.  We talked about autoimmune diseases and ANA tests.  She told me the ANA test done didn't mean anything.  She said only a rheumatologist is knowledgeable enough about ANA to interpret the results.  She said she could refer me to one.  For once my symptoms meant something to her.  After checking everything out she decided first I should get a bone density scan and have an EMG test for the pain in my joints and carpal tunnel. (Joint pains and carpal tunnel had been my major issue for years.) She said she would fax the test orders to the doctors that needed to do them. (Waiting for an appt.)  She looked at the antihistamine the dermatologist prescribed and changed it to a med that would not affect the other meds I was taking.   She ordered more bloodwork to check on vitamin deficiencies she already knew I had, and thyroid problems.  I still don't have the answers, but finally she listened.  

I hope you are feeling better, and your doctor can get by the depression dx., and get you some help with your pain.  I know where you are coming from having recent experience!  I don't have any concrete diagnoses yet, and the hives are are itchy and miserable....but I know my doctor finally found something she could SEE and not say "it's depression".   Good luck to you!

Posted 8/10/2011 7:13 PM (GMT 0)
Thanks for the responses. I am going to ask my dr for a referral to a rheumatologist and hope I can find one that listens! plain vanilla- good luck in getting answers/help, as well. I don't know why so many drs just want to assume that everything falls back to depression if they can't find a definite diagnosis, maybe it's just the easy way out for them. A few other people in my life also just assume it's all in my head because I don't look sick 24/7. I have been browsing through these forums since I found them yesterday and it's encouraging to see so many posts I can relate to.
Posted 8/12/2011 3:16 PM (GMT 0)

Hi!

I was actually falling 3 x week, worked with both my pcp and Gyn docs, and finally snarled at my family doc..... "YOU TELL ME!!!! AM I FALLING BECAUSE I AM DEPRESSED OR DEPRESSED BECAUSE I'M FALLING?????????????????...I AM NOT DEPRESSED! I'M SICK OF BEING SICK!!!" By then, (long standing antiphospholipid antibodies documented, and finally a positive ANA which is apparently the myth connected to 'old" drs. diagnosis of lupus.....I went back to a rheumatologist and he sent me to a neurologist, and here I be. I had to stop working last June, and still wish I could work but oh so grateful to God I don't have to. Just don't give up, and document everything, write a symptom list and timeline. Take digital pictures of everything. tongue Well, almost everything. And I found it truly helpful to read old forum threads, so I learned from other's experience what questions I should ask of my drs. Welcome to the world of lupus. It is considered one of the most difficult of illnesses to diagnose. And symptoms come, and go, so it is truly normal and oh so terribly maddening to have test after test result come back "normal or low positive" and I have wanted to stuff more than one lab report, (I collected them all), where the sun don't shine at more than one of my doctors.

hang in there and keep us posted,

hugs,

suetoo

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