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Regular Member

Date Joined Apr 2010
Total Posts : 34
   Posted 7/7/2010 9:59 AM (GMT -7)   
Hello every one, I am new here. I just found out that I have Fibro. The dr's have known about this for over a year and did not bother to tell me. I had to get my medical records and my Rumty to find out. I had a pm that was a joke. They were in to shots for everything and I already have bad nerve damage to begin with and the shot were adding more. There is a long story about my now EX pm dr. I have a new regular dr that is going to wrok with me as much as she can and has already told after she gets all my records and sees what all is going on that if she can not write the rxs that I need she will refer me to one she knows that does work with cp as well as fibro and every thing else.
I am so glad I have found this place as I have found so much great info, and I do not feel so alone. THANK YOU!!!!!!

Veteran Member

Date Joined Jan 2005
Total Posts : 9090
   Posted 7/7/2010 10:13 AM (GMT -7)   
Hi Butterflyrose!!

I'm sorry you had lousy medical care but at least you found someone who will treat you with the respect you deserve. One thing I would do, but this is only 'my' opinion here... I would write to the AMA and/or whomever licenses doctors in your state and share this story with them. They can not play games with you about informing you of what ailments you have. It's NOT their choice to withhold information. That does irk me like crazy. By sending a letter, not an email, they will at least be talked to about the issue and if others have written they might just go a bit further with this person.

Why do I get so fired up with this? My Father and Mother had Group Health (or as we around here call it Group Death) health care, such as it was. They discovered dad had prostate cancer and failed to 'mention' it to him for 2-3 years!! When they did finally bring it up because of symptoms he was having their comment was, "Something else will kill you first!". While waiting for that 'something else' the prostate cancer took his life. It metastasized into the blood stream, bones, etc. Even though they tried radiation and chemo nothing helped and he died with Hospice care at home. One thing about prostate cancer is that it's about the most excruciatingly painful way to the nurses told us. If he had known earlier he would have had the choice of treatment or not. So I don't take this lightly any more.

I do hope you have great results working with this new doc. She sounds like a gem!
If you're going through hell, keep going.

Winston Churchill

(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.

Regular Member

Date Joined Apr 2010
Total Posts : 382
   Posted 7/7/2010 10:24 AM (GMT -7)   
Agree with Chutz, right now we are dealing with my MIL and doctors mistakes.

You have to be on top of doctors, I really wish we didn't due to everything else going on. There are wonderful doctors out there then there is so so doctors.

Regular Member

Date Joined Apr 2010
Total Posts : 34
   Posted 7/7/2010 10:24 AM (GMT -7)   
Oh the thought is in my mind belive me. I had a "HMO" Kaiser, kill my husband and all the Dr could say was we are a hmo, we are not in saving lives just mantaing them. At the time nobody could sue them as they were "to big" to sue and all the lawyers wanted over ten grand just to look at the case. When the walls were broke to sue them it was to late.

There is way more to this Dr that is going on that I can say. I would be fore the hour telling my story with them. It took me 3 demand to get my reports. They were so messed up it was not funny, they almost got me kicked off my disablty by saying I was working full time and married.

Thanks Butterflyrose

Veteran Member

Date Joined May 2010
Total Posts : 1556
   Posted 7/7/2010 7:42 PM (GMT 0)   
Hi butterflyrose, just wanted to welcome you to the family. I am sorry they didnt tell you what your diagnosis was and about your husband. I dont know anything about HMO's because I have never had to deal with them. Thank goodness.

Im glad you have found a good dr. now and get the treatment we all deserve. Sorry you have this disease but Im glad you have found us. We have alot of great people here. Anyhow I just wanted to say hi and I love your nickname.

Gentle Hugs
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 7/7/2010 12:55 PM (GMT -7)   
Hi, Butterflyrose, and welcome!  I'm glad you found us and joined in.  I agree with all of the above.  We do have to be active participants in our health care.  I ask a bazillion questions every time I go to the doctor's office.  I make a list and also request results of any and all tests they do.  After all, I hired the doctor to take care of me and I paid for the tests.  They can't keep that stuff away from you.  I had major surgery a while back and contacted the hospital and asked for a copy of the operative report.  This tells EXACTLY what happened to me on the operating table.  I have that in my health file, too.  So, don't settle.  Be on top of everything.  You know your body better then anyone.
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibro there and you will learn a lot.
Don't hesitate to ask questions because we are here to help you.  I'm so happy you are here and I hope to hear more from you soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Regular Member

Date Joined Aug 2005
Total Posts : 384
   Posted 7/7/2010 1:11 PM (GMT -7)   
Welcome. This is a great place for support. I hope that your new dr. can get you the help you need in battling FM.
Fibromyalgia,arthritis,raynauds syndrome,gastroparesis,IBS,depression,severe costochondritis
God and Family is my life.

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 7/7/2010 1:30 PM (GMT -7)   
Hi butterflyrose, welcome to the fibrofamily! Being proactive about your healthcare
is the first step in getting answers. I used to think my Doc would think I was a pain in
the butt because I asked so many questions but he told me he was glad that I researched things because I had an understanding of differant meds and possible
side effects.

I'm glad you have joined our family. We are here to support one another and for
me it has been a blessing. Someone will always be here for you! Take Care!!!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Forum Moderator

Date Joined Nov 2008
Total Posts : 5948
   Posted 7/7/2010 4:09 PM (GMT -7)   
Welcome, Butterflyrose (yes, what a beautiful name!) Sounds like you've been badly treated, to say the least. But the new doc sounds much better. You will definitely find people who understand here.

Chutz, it broke my heart to read what happened to your father. And made my blood boil.
   Fibromyalgia, possible Meniere's, elevated liver enzymes, skin grafting on back, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, tachycardia, skin cancer surgeries on face
    Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
This too shall pass....

Veteran Member

Date Joined Mar 2010
Total Posts : 1286
   Posted 7/7/2010 5:30 PM (GMT -7)   
I feel your anger, honestly. I found out that my GP tested me for Hepatitis C 12 or more years ago and never told me I was positive. I have since treated and cleared the live virus but it would have been nice to have known.

I went to a new doc that did not believe in fibro, just changed my anti Depressant, told me that my pain was from depression.

I am back at the original doc after a long discussion with him and am totally proactive in my care. Good Luck
Denise from Pittsburgh, Pa
 ***diagnosis: high blood pressure, gastritis, fibromyalgia, hepatitis (SVR/cleared),  disc problems in neck, depression, anxiety & stress, cervical headaches, porphyria-PCT, IBS
 ***meds: metroplol 25mg, zoloft 150mg, gabapentin 300mg 3x a day zocor , (soma, fioronal, tramadol, as needed).
 ***other supps: calcium, vit D 2,000-4,000 per, milk thistle, vit C &E, acidopholos (sp?),  
CO-Q 10,  flax or fish oil, ginsing, magnesium, B complex,

Lana Bear
Regular Member

Date Joined Jul 2010
Total Posts : 25
   Posted 7/8/2010 5:00 AM (GMT -7)   
Hi butterflyrose,

I just wanted to say welcome to the forum. I agree with everyone here who stated we have to be proactive in our own health care. I'm sorry your old doc didn't even tell you about your diagnoses and about your husband. It makes me sick to my stomach. Everyone here is very supportive.
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