Fed up with doctors.

[Boxxietrolls]

Hi everyone. I've never posted before but I've been so sick of doctors lately. I am about ready to just start trying homeopathic ways instead of seeing them.

I'm 20 years old and was diagnosed when I was 18 with Lupus. I was in the military and medically discharged. I came home and started to see the doctors at the VA. Until recently, my doctors have kept my diagnoses.

Then one day I go to see my doctor and it's not her! it's some guy I've never met before. He makes me fill out this 6 page questionnaire and tells me I have fibromyalgia. he did not do an exam, just scored my paper.

I see my gynecologist at the VA and she says I don't have Lupus, I have fibromyalgia. She didnt do any tests or exams but that same annoying questionnaire.

I am so fed up with other doctors. My rheumatologist says I have Lupus/undifferentiated connective tissue disease. She says both but mostly refers to lupus when we talk.

I'm just frustrated.

Any advice?

My symptoms:

I can't do heat. I start to have a flare

Sun makes my joints hurt

Joint paint (knees, hands, feet, ankles, wrists, and jaw)

Headaches/migraines

Swelling (when I do too much)

Fatigue

Brain fog

Memory loss/confusion

Butterfly rash (when I have a flare, it hurts on the apples of my cheeks)

I can't think of anymore currently.

Thanks a bunch!!!

[Paul_Howard Partner LUPUS UK]

Hi Boxxietrolls ,

I'm sorry to hear that you are having difficulty concerning your diagnosis. Are you currently on treatment for your lupus? Did the consultant you saw suggest any changes to your treatment regimen to coincide with their belief that you have a different diagnosis? Are you able to request another appointment with your usual rheumatologist to clarify things?

If you are unsatisfied with your current diagnosis and treatment plan then you could request a referral to a different consultant for a second opinion. It may be helpful to request to be seen by a lupus specialist. If you let me know what area you live in, I can let you know of any specialists we know nearby.

If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Boxxietrolls in reply to Paul_Howard]

I live in US in Watertown, Wisconsin.

They have not changed my treatment. I am still on plaquenill. I think it's frustrating that my rheumatologist doesn't say I have fibromyalgia but others do and they don't suggest anything or do exams. I don't have pressure point sensitivity. My doctor says I could have it in conjunction with Luous/undifferentiated connective tissue disease but she never suggests doting anything for it.

Thank you for the help! I appreciate it.

[Paul_Howard Partner LUPUS UK in reply to Boxxietrolls]

I can appreciate your frustration. Fibromyalgia does occur alongside lupus quite commonly, but they should both be acknowledged and treated.

I'm afraid I don't know of any specialists in your area because we only have information for the UK, but if you contact the Lupus Foundation of America they may be able to assist you - lupus.org

[Boxxietrolls in reply to Paul_Howard]

Thank for all the help an information. I appreciate it.

[shareasmile]

In my opinion, Fibromyalgia is the most overused diagnosis in the medical world! Doctors that can't seem to figure out the real culprit, do a stupid questionnaire and think they have found the solution. That exact thing happened to me during a perfect (or imperfect) storm of symptoms and circumstances. I answered the questions--didn't even know it was a fibro "test" and after the doc scored it, he pronounced that I had it. Then he went on to add multiple ailments in my health chart--irritable bowel syndrome, tension headaches/migraines, anxiety/depression, temporomandibular joint disorder and interstitial cystitis--all to back up his bogus diagnosis, I suspect. None of these exist in me! I had to go to the top at his clinic to get this crap removed from my chart. I was ready to seek legal advice.

I can fully relate to your frustration. I ditched that doctor and sought out a new Rheumatologist. I am much happier now. Though my exact diagnosis is still in limbo, she does acknowledge that I have a connective tissue disease/autoimmune condition. These diseases are so difficult to isolate and confirm. I wish you all the best in your search for answers. There are most certainly diets and supplements that can help relieve your symptoms--search "leaky gut". But, prescribed medication (Enbrel for me) has provided the biggest difference.

Incidentally, my new doctor is at UW in Madison. I'm curious if yours is the same?

[Boxxietrolls in reply to shareasmile]

My doctor is in Madison. they are located in the VA which is next to the UW health.

I can relate to you exactly. that is what happened to me. I just don't understand why the other doctors, who aren't my rheumatologist, keep trying to change my diagnoses. I don't understand.

I'm glad I have someone who can relate!!!