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undiagnosed but suspected, needing some help?

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Fibromyalgia
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Posted 1/9/2016 6:21 PM (GMT 0)
I've been dealing with mostly abdominal pain, and have been diagnosed with severe social/general anxiety and infrequent bouts of depression for about a year or two now. Gyn thinks I probably have endometriosis, so she put me on birth control to regulate the severity of my periods as I'm only fifteen and that's a little young to do any surgeries lol. Therapist recommended seeing a rheumatologist and a GI. I've been to my doctor around eight times since October, have been to the ER (did a chest xray and ultrasound and various labs, everything was fine) once, and the only abnormal thing they seem to find is that I have somewhat low blood pressure, low creatinine, and an unsually high titer for EBV - but it was high back in 2011, so they're not worried. Doc said labs show I most likely don't have lupus or rheumatoid arthritis, but recommends a rheumy visit.

In the last few months I've been having some more symptoms. Aside from the abdominal pain, I have constant fatigue and exhaustion, muscle aches, weakness, dizziness, I've skipped my period twice now, chest pain, fainting, RLS which leads to sleep issues, poor circulation and cold hands and fingers (they turn blue on a regular basis), tingling/numb hands and feet, muscle spasms, sore hands, problems regulating temperature, night sweats, hot flashes, goosebumps that hurt, sharp pains in random places, shortness of breath - just general malaise and pain all over. Nothing seems to help the pain.

My psychiatrist told me yesterday that I don't have anxiety, I have ADD. He put me on Concerta and Fluoxetine because he thinks I'm in pain due to stress due to concentration problems. His explanation makes sense, except that my doctor and therapists disagree. I've never been told I have anything even remotely related to concentration problems. And there aren't any stressors in my life right now as I'm on a medical leave from work/school.

Anyway, I've been rambling, so let's get to the point - I'm not sure if my symptoms are consistent with Fibromyalgia, but it makes the most sense. I have a large family history of autoimmune diseases and symptoms consistent with Fibro. I'm just tired of being told my pain is all in my head, or created by stress that is currently nonexistent, or just because "you want to be sick." I need answers and I don't know what to do, so here I am asking for help on what to do and which direction to head in next :)

Post Edited (racheljj) : 1/9/2016 11:24:12 AM (GMT-7)

Posted 1/9/2016 7:28 PM (GMT 0)
Hi, Rachel, and welcome! I'm not sure where to start! LOL. First of all its not all in your head. These symptoms are very real and what needs to be done is find out what is causing them. You could have several things going on.

My daughter had endometriosis but we didn't know it. She had painful and severe periods. Then she started having difficulty holding food down. Her stomach was always upset and she had trouble keeping food down. She lost a lot of weight and was skin and bones (she was under 100 pounds). Her doctor ignored her.since she was only 19 years old. So I sent her to a gastroenterologist since Crohns disease is in the family. He checked her out and told her it was all in her head. There was nothing wrong with her. I think they thought she was bulimic but I knew better. She came home crying and didn't know what to do. I told here we have tried all doctors except a gynecologist. I sent her to mine and he knew right away that it was endometriosis. She had out-patient surgery where the uterus was scraped out since she was so bad and she has been fine ever since. She sees a specialist for this every three months and is on medication to help her. It did cause a lot of abdominal distress so your GYN is probably right.

I have never heard of stress causing pain. If you have pain to begin with, stress can make it worse. This does happen with people with fibromyalgia. My son was ADHD but never had pain caused by it.

Anxiety can cause many symptoms so if you get anxious easily this could play into your symptoms.

Many of the things you listed are symptoms of Fibro. But you need to see a doctor that believes Fibro is a true illness. There still are doctors out there that don't think its an illness and then there are doctors that like to tag you with the diagnosis without running tests to rule out other illnesses that can cause many of the same symptoms...things like Lyme disease and lupus. Many here see a rheumatologist to be screened and diagnosed and I see your doctor has suggested this. Make sure they are board certified.

You should read Fibro 101...the first thread on the forum. There are links to good info about Fibro and you will learn a lot there. Good starting links would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibeo 101 is good so do read it.

I hope you start getting some answers soon. It's difficult enough to have these problems at such an early age but even worse when you are not believed because you are young and have so many symptoms! Don't give up. Your body is telling you something is wrong and I'm sure you will get to the bottom of this.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 1/11/2016 1:35 AM (GMT 0)
Hi Sherrine, and thanks!

My sympathy to you daughter, it's definitely tough to deal with. May I ask what medication she's on, and how well it works for her? We've been looking for a good medication for the pain, seeing how ibuprofen does next to nothing and my doctor says NSAIDs aren't supposed to be taken with Fluvoxetine anyways.

We've run an autoimmune panel and everything came back normal... Is it possible that the lab results could change over time, or does a single one-time panel rule out any autoimmune issues permanently? Is it worth it to go back after it having been two months and run the panel again to see if results have differed, or does that just not happen? My mom and I are just extremely worried a rheumatologist will take one look at me and send me off without another glance.

Thanks for all your help! :)

Post Edited (racheljj) : 1/13/2016 11:23:15 AM (GMT-7)

Posted 1/11/2016 3:31 AM (GMT 0)
I have two autoimmune diseases and the blood tests say I don't. There is a check list rheumatologists use to rule out autoimmune diseases.

Lupus has 11 indicators and you must meet at least 4 of them. Blood work is one of the 11.

I have sero-negative arthritis. Blood work says no, but xrays and exams say yes.

Your hands turning blue sounds like raynaud's syndrome. You need medication for it. The rheumatologist will treat that. Try wearing gloves to keep them warm so the blood flows better. Hot Hands will help that too.

I hope you can get someone to truly listen to you. Talk honest and frankly with your doctor. Ask if he thinks you have ADD. They can assess it too.
Posted 1/11/2016 7:00 PM (GMT 0)
My endometriosis symptoms started when I was 16. I had my first surgery at 19. I was able to have two babies and had a complete hysterectomy at 30. The doctor told my family she didn't know how I was walking upright after they got in there; it had spread to my muscles by that point. The pain is very real and can be very bad!

I think a Rheumatologist and a Gynecologist are going to be good bets to help you find out what is going on. Just be honest and open with them.

Gentle hugs to both you and your mom.
Posted 1/11/2016 9:49 PM (GMT 0)
If you have not already started one, keep a symptom log. A day planner is a great way to do that or put symptoms into the calendar on your phone instead of events. Anything that worsens or improves symptoms will also be helpful. While there may not be a clear pattern (or there might) it will show your doctors how your symptoms are affecting your life on a day to day basis.

Doctors are people too, with their own prejudices and predetermined ideas. If you don't get answers from one, see another. Try to find out who in your area is treating people with your problems, especially if those people are getting better, and see that doctor.
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