SORRY SO LONG BUT I HAVE NO ONE TO TALK TO!!! NO ONE REALLY EVER WANTS TO LISTEN.....ESPECIALLY THE DOCTORS (DON'T KNOW WHY BECAUSE THEY ARE SUPPOSED TO BE HERE TO HELP US)
Do you think these 2 are related?
The reason why I ask is:
I have been having horrible problems for years. Just had excision surgery for Endometriosis & of course my problems continued. I saw an Endocrinologist who referred me to a Rhuematologist (after getting a positive Antiparietel Cell Antibody). I saw one Rhuematologist which diagnosed me with Fibromyalgia. I went to another Rhuematologist who said it seems like I do have all the symptoms of Fibromylgia but then did even more blood tests just to make sure (I explained to her that I have also been having miscarriages along with all my MANY MANY other symptoms). She mentioned that she is checking every possible thing & mentioned doing the Antiphospholipid Antibody test for that too. Well, my test results came back & she said that I do not have Lupus. I questioned Sjogrens Syndrome (because my dad's father has it---they were only able to detect it from a lip biopsy) & my dad's brother just found out he had it & it is in remission). She said that I do not have Sjogrens syndrome (because all my blood tests came back fine---I guess the SSA, SSB & ANA----they were all negative). Now, isn't it true that all these tests can be negative & a person can still have secondary Sjogrens?? I really feel like I have Sjogrens but I am not getting the testing that I need. Also, my Rhuematologist advised me that the only test she was concerned about was my Anticardiolipin (which I believe is related to the Antiphospholipid antibody) antibody that came back positive. She advised me to be sure to take a baby aspirin every day & she will see me back in exactly 3 months to do that blood test again to see what is going on & then we will go from there. Of course my doctor did not explain very much to me about this, so I had to do much of my research on the internet.
I have not been taking the baby aspirin. I have actually been taking a BC powder every day due to the horrific headaches that I have been having.
Chest pain----sometimes pretty bad but I just ignore it---the other night I just woke up in the middle of the night with horrible palpitations (like my heart was going to come out of my chest---a very horrid feeling) along with profuse sweating & episode of where I felt like I could not breathe along with nausea. I have never have experienced this before. I had to just sit up in bed & try to remain calm & breathe in & out slowly until the episode let up. I was going to go to the ER but did not want to waste the money or time so never did f/u on it.
Horrible Horrible Fatigue (I barely have enough energy for work). I have to basically do nothing at home so I have enough energy for work.
Extreme Dry Eye (I have had since was 19 & I am now 33)---I have used many over the counter eye drops & night time eye salves over the years (of course none really help completely). There are times that my eyes feel like they are sticking to my eyelid. It is not a very nice feeling. I can't even wear contacts. Have tried contacts several times (even the newer varieties) but they always stick to my eyes & eyelids.
Dryer & Dryer skin as the years go by (I start to look older & older). I used to have extremely oily beautiful skin---now I look so old.
Chronic Urinary problems (with fine cultures). One surgeon told me I had interstitial cystitis but don't know. Try to resort not going to the doctor too much because I don't like to take much antibiotics.
Chronic gastrointestinal problems lately I am having clayish colored stools.
Chronic dry cough all the time
I have episodes at night where I have to get up & drink lots of water due to cotton mouth---I had an episode about a month ago where I got cotton mouth so bad at work that it felt like my throat was closing shut. I ended up going to a clinic & gave me a shot of a steroid & I was fine the next day.
I have episodes that when I stand too long my toes begin to feel funny & they start to turn red as if my circulation has been cut off
Hot flushes---I get these all the time
Horrible Brain Fog---I feel like I am losing my mind at work
Aches & pains that I have all over my body
MANY MANY other problems
Is there a possibility that I may have been diagnosed with Fibromylgia in error. How do we know that something else may be causing all the symptoms of Fibromylgia such as Antiphospholipid Syndrome. How do I know that I do not have Sjogrens Syndrome (that is still undiagnosed due to not having the proper testing) that has led to me having Antiphospholipid Syndrome or vise versa?
I know I no longer have Endometriosis because I had excision surgery & it was all removed
Does anyone out there have any answers?
What doctor should I see next?
THANKS FOR LISTENING!!!!
Recognize the risks associated with Crohn’s disease.
Did you know that one in six US adults has high cholesterol?