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Trying to get a diagnosis

By May 10, 2012 - 9:14am
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I have dealt with supposed fibromyalgia and osteoarthritis for over 15 years. I was diagnosed with a heart arrhythmia about 2-3 years after FM diagnosis, extreme fatigue, had 2 surgical spinal fusions (2006/2008), basal joint arthroplasty (both thumbs), been on various medications with not much relief or relief for a very short time. I am now on high levels of arthritis medication, Cymbalta, Lunesta, Toprol XL for my arrhythmia, Elmiron & Sanctura for interstitial cystitis, a sudden increase in my cholesterol and now take Crestor, narcotic pain meds for pain. I have nausea from the meds, had surgery for hiatal hernia and GERD. I have had various tests for symptoms that come and go. I have been tested for RA, MS, Lupus...

I just wondered....am I being a hypochondriac for pursuing an answer to my health or is this a legitimate concern?

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EmpowHER Guest

Thanks for all your help. I have had all my medical records to the doctor at University of VA for review and she has contacted me and I have an appointment with her in August. I was told by her staff member that after she looked over my file she would decide if she felt it would be something she could help me with. I am excited that maybe it's possible someone is listening to me.

June 21, 2012 - 8:10am

Thanks so much for the information you've shared thus far.
I have seen about 4 rheumatologist over the past 17 years for my FM and just get the same standard answer from them. When I express to them the pain I have in spite of all the meds I have tried I have been told that I need to just accept what I have and treat the symptoms. When I question the joint damage I have already seen, I am told that it's not RA but just osteoarthritis.
I guess my question is, after all that is it a legitimate concern to proceed with the possibility that it could be something more, maybe even AS.
I joined the Spondylitis Association of America and just contacted a rheumatologist at UVA. My records are being sent to her to review. Should I also tell her what I want to know or just let her review everything?

May 11, 2012 - 12:15pm
HERWriter Guide

Hi Lindaoz

Thanks for the addition info. Can you be more specific on what you'd like us to do - or information we can help you find?

It seems that what you are mainly dealing with is auto-immune conditions. These can be exhausting and painful, even in younger patients. Fibromyalgia is not an auto-immune condition itself but it's symptoms often mimic the same fatigue and pain that autoimmune conditions cause.

According to the government website that covers autoimmune conditions, here is a list of doctors who specialize in the many kind of issues women face:

  • Nephrologist. A doctor who treats kidney problems, such as inflamed kidneys caused by lupus. Kidneys are organs that clean the blood and produce urine.
  • Rheumatologist. A doctor who treats arthritis and other rheumatic diseases, such as scleroderma and lupus.
  • Endocrinologist. A doctor who treats gland and hormone problems, such as diabetes and thyroid disease.
  • Neurologist. A doctor who treats nerve problems, such as multiple sclerosis and myasthenia gravis.
  • Hematologist. A doctor who treats diseases that affect blood, such as some forms of anemia.
  • Gastroenterologist. A doctor who treats problems with the digestive system, such as inflammatory bowel disease.
  • Dermatologist. A doctor who treats diseases that affect the skin, hair, and nails, such as psoriasis and lupus.
  • Physical therapist. A health care worker who uses proper types of physical activity to help patients with stiffness, weakness, and restricted body movement.
  • Occupational therapist. A health care worker who can find ways to make activities of daily living easier for you, despite your pain and other health problems. This could be teaching you new ways of doing things or how to use special devices. Or suggesting changes to make in your home or workplace.
  • Speech therapist. A health care worker who can help people with speech problems from illness such as multiple sclerosis.
  • Audiologist. A health care worker who can help people with hearing problems, including inner ear damage from autoimmune diseases.
  • Vocational therapist. A health care worker who offers job training for people who cannot do their current jobs because of their illness or other health problems. You can find this type of person through both public and private agencies.
  • Counselor for emotional support. A health care worker who is specially trained to help you to find ways to cope with your illness. You can work through your feelings of anger, fear, denial, and frustration.


It seems like you have multiple diagnoses which is actually quite common when it comes to autoimmune conditions.

Have your considered seeing also a nutritionist and naturopath who can work with you along with your other doctors?  They can help you with diet, relaxation, exercise and emotional health and may be a really great benefit to you. 

Let me know what you think!



May 11, 2012 - 10:13am
HERWriter Guide

Hi Lindaoz

Thank you for your post and I'm sorry you're dealing with so many debilitating conditions. 

A hypochondriac is someone who worries incessantly they have conditions that they don't actually have.

Since you have legitimate diagnoses and even many surgeries, I highly doubt you are a hypochondriac.

What is your prognosis, do you know? Are some of your doctors better than others? With so many chronic conditions, is there any way your doctors can form some sort of game plan - together?



May 10, 2012 - 11:08am
(reply to Susan Cody)

I have been diagnosed with fibromyalgia, osteoarthritis, interstitial cystitis, SVTs, intermittent IBS and menopausal symptoms. I have had 4 surgeries, all arthritis related and cannot understand how typical osteoarthritis can be so destructive and starting in my 40s. I just came across this AS information on Everyday Health and wondered if I should pursue looking into the possibility of it being something other than fibromyalgia or osteoarthritis.
I don't want something more serious but would like to get my quality of life back. My employment has been affected by my health as well as my social life. I would just like an accurate diagnosis and the correct medications or treatments.
I keep each of my doctors all informed about what the other is doing for treatment. Unfortunately, I'm not sure that any of them are looking at the big picture or any correlation between all symptoms. I just seem to be labeled with fibromyalgia and have been since 1995.
Thanks in advice for any assistance in the way of suggestions, assistance, support... you can provide.

May 10, 2012 - 12:21pm
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