Any ideas?

Hi, Lauriel, and welcome!  I'm not sure what is going on but I'm not a doctor, either.  It is so difficult when your children are ill.

 

Check out the Fibro 101 thread...the second thread on the forum.  You will find links to information about fibromyalgia, including symptoms of fibro.  There is another link called What Else Could It Be?  The symptoms of fibro are very much like several other illnesses.

 

It could be Chronic Fatigue Syndrome, also.  Here is a Mayo Clinic site that tells about the symptoms.  See what you think.

 

http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=symptoms

 

You are doing the right thing in getting her in to see a rheumatologist.  They most likely will run a battery of tests to rule out certain illnesses that have the same symptoms.  Many with fibro also have chronic fatigue syndrome and many of the symptoms do fit.

 

If I were  you, I'd contact the rheumatologist's office and ask if you can get in earlier if they have a cancellation.  It's worth a try!

 

Please let us know what you find out.  We really do care.

 

Sherrine

Hi Lauriel and welcome.  I'm sorry your daughter is going through this; I think it is harder on us when our kids are sick than when we are.

 

I very much disagree with those who say you should give up looking for an answer after a year.  I have a couple of illnesses that are difficult to diagnose, I had to be very persistent, patient, and go through multiple doctors to finally find help.

 

Do you live near a large research hospital?  I live about 2 hours away from one and have found the doctors there to be so much more helpful and tolerant of "unusual" symptoms or groups of symptoms. They've seen so much and are less likely to dismiss things as "all in your head." Plus, they work together to try to come up with an answer.

 

I agree with Sherrine; it does sound like it could be CFS.  It could also be lots of other things including gynocological.  Has she been tested for PCOS?  It's also possible that she could have more than one problem/illness going on.  Just the fact that her periods are so irregular seem to indicate that something is wrong.  You can't just wish/imagine those away (if you could, I would have tried that long ago ).

 

Your daughter is lucky to have you in her corner.  I hope you find answers at the Rhematologist.  Keep us posted.

 

Hugs - Austen

 

 

Hello Lauriel,

I'm sorry for all your daughter's troubles. I've had a few similar problems with progesterone. I think I am pretty much hormone intolerant. I don't take any birth control because all of it (and trust me, I have tried lots of different kinds) exacerbated my fibro or else I'd put on weight.

I had some weight gain problems with progesterone, and they also suspected thyroid. Test was normal. I had gained 25 pounds in six weeks. It took me a year to get it off. Then when I went off the progesterone, my period went awry for almost a year. I was getting a period every two weeks, then not getting one for over a month, and so on. I ended up with a misdiagnosis of polycystic ovary syndrome. Now, my period is perfectly normal again. The progesterone just made my body extremely volatile.

If I am not mistaken, a sed rate of over 20 is abnormal. It means there is inflammation somewhere. But I can't make that call. Make sure you keep that rheumy appointment, and be ready with a list of symptoms and questions to ask. I finally got my diagnosis after 2 years from a rheumatologist. And it does suck that they take so long to get in to see -- I had to wait for almost two months during a major flare for my first appointment.

Good luck, and I commend you for standing behind your daughter in this. I am sure your support helps her more than you know. All too often we feel like or are told we are crazy.

Lauriel, don't ever give up!  When my daughter was around 25 she started having  vomiting issues.  She would be fine and then, all of a sudden, have to vomit.  She was losing weight and was 97 pounds at 5'6" tall!  The bones were sticking out in her arms, she was so emaciated.

She went to her doctor, many times, who didn't think anything was wrong since nothing showed on tests.  I sent her to a gastroenterologist, she went through all the GI testing, and that idiot told her it was in her head!  She came home in tears not knowing where else to go.  I think they thought she was bulimic.  I knew she wasn't because I checked! 

I told her that we tried all doctors except the gynocologist.  She went and it was endometriosis that was causing the problem!  Who would have thought that?!!!  She had outpatient surgery, was put on birth control pills and is fine now and has put on about 20 pounds.  She looks wonderful.

So, don't give up.  Someone out there has some answers.  Make sure the rheumatologist you are seeing believes in fibromyalgia, too.  Many still don't and she could have that too.  But, the rheumy is probably your best bet.  I'll be praying he/she is a good one.  If you don't get the answer there, see another one.  This isn't in her head.

Sherrine

Sherrine,

I don't know if you'll be checking back on this thread.. but after reading what you said about your daughter and her problems, I wanted to add that YOU A VERY GOOD MOM, TOO.  Wow, who would have thought that!!  I'm glad you we so diligent (sp?)!!!  I guess your daughter can relate to being told "its all in your head" huh?!

Hugs,

just wanted to thank everyone who posted a reply to my previous topic. my daughter has an appt. at a hospital in ny next week which deals with celiac disease. hoping that they might be able to come up with something. i'm bringing all the blood test results from the past year, maybe they can get something from them (will definitely take a couple of weeks for them to sort thru them). hope everyone has a nice holiday.