DOCTORS AND FIBRO
 
A newsletter reader wrote, "Having a webpage for shell shocked FMS patients to read after being destroyed by their doctor's visit is a great idea."  Below are comments I have received from FMS/CFIDS patients regarding their doctors.  Hope they will help you feel less alone and more validated if you have gone through a bad experience. - Dominie
 
"Several years ago when I tried to get a diagnosis from my GP and he told me I wanted to be sick since none of the tests came back with any answers  and then I learned about fibro from an aid at school. I went back to the doctor and told him I was so angry I could kick his head off of his shoulders and down the hall like a football.  He was stunned at my comment but I did not care!  It was at that point I decided to take up for myself with the medical community.  If you dish it be prepared to take it!   The HIPPA laws were put into place for idiots just like him.  You might want to call that to his attention and let him know you pray he never is faced with an invisible illness."
 
 
"I went in to a doctor in town to get my candidiasis diagnosed...big mistake!!!  She listened to me for 5 minutes and then without doing any testing told me that she thinks I need to up my prozac and see a psychologist!!!!"
 
 
"I think with FMS and doctors you just have to stick to your guns when it comes to getting the right treatment for yourself.  You have to be your own advocate."
 
 
"Amazing how one's life can change so drastically in one afternoon.  I'm so low right now that I'd have to stand up to scratch a snake's belly.  Remember the great doc I raved about being so lucky to have found and how he listens to me and works with me on things?  Well, he turned into Dr Jeykll, or is it Mr Hyde?  He came in and asked me how I've been and how much exercise I've been getting.  I answered him and he got right in my face and started yelling at me.  I was so stunned, it took a few seconds to fathom what he was saying.  He said that I have to take some responsibility for my illness and stop using it as an excuse for not doing anything.  He said that he will no longer be my "enabler" by giving narcotic Rx's to a drug addict who has been kicked out of 3 pain clinics.  I felt the blood draining out of my face and thought I was going to keel over.  I asked him what was wrong with him today?  That [set] him off and he said don't try to make it his problem.  I told him to look at my record and he would see that I have been to one pain management doc last year and after 2 visits, it was clear that she and I did not agree on anything, she was rude and had the personality and compassion of a turnip.  She gave me an Rx for Vicodin, which I STILL HAVE NOT FILLED AND THIS WAS IN 2003.  Don't think that's very good drug addict behavior.  It occurred to me that my husband had his appt last week and then I knew what happened.  I said I knew that he had spoken to the doctor about me because the only other time the doc and I had a problem, that is what had happened.  He wouldn't say yes or no but I knew.  I told him that I had found many friends on the computer...all saying EXACTLY what I'm experiencing and that I feel so validated by that.  He asked me why I needed that?  There is no dispute that I have FMS, I just need to get off my a** and do something.  I told him it was important because if you don't have it, you don't understand it and I live with THAT every day at home.  I had taken some flyers and thyroid information to share with him and see if he would order the blood work or refer me.  He didn't look at them.  I kept expecting to wake up any minute, but I didn't.  He said alot more but I can't remember it right now.  I'm sure that everyone on that hall heard it.  While he was writing my Rx's, I said, "I am SO disappointed in you".  He seemed to soften up a little but I just wanted to get out of there.  When I got home, I lit into my husband.  I am sick of being called a liability every day, sick of the verbal and emotional abuse and in this atmosphere, I will NEVER improve.  He finally admitted to speaking to the doc.  I told him that he had finally gone too far and I am not going to take his abusive treatment anymore.  I told him that since I am a "liability", I am going to let him free himself of that burden and he can get a divorce.  Of course his MAIN concern is that he will have to share some of HIS money with me so he wanted to make nice.  I'm done.  It's over.  I will just have to find a way to get by on my own.  BTW, my husband tells anyone who will listen that his wife takes too many pills.  What would you make of that?  He doesn't mention that they are for BP, acid reflux, cholesterol, bone loss prevention, muscle spasm, depression and ONE for pain.  That is the only thing I can think of that he could have said to the doc to make him say all those things.  I am still in shock, and SO angry."
 
 
[FROM DOMINIE]: "My doctor for the past 12 years has been very helpful in discussing various meds with me and letting me try different ones that were recommended to me by people with FMS.  Unfortunately, very few of the drugs helped and many had horrific side effects--but at least I got to try different approaches and was never scorned.  I appreciate that my doctor has trusted me to know what was best for my body.  There are so many hurtful doctors out there who don't have a clue about FMS/CFIDS and who devastate their patients emotionally.  I have been to those kind too in the past......UGH!!!!!!  Needless to say, I appreciate my doctor's helpful, courteous, willing-to-listen and learn attitude.  He is a rarity! I have had to educate--or attempt to educate--nearly all of my doctors about FMS/CFIDS. I am so glad for the internet with all the knowledge that is right at our fingertips now! You can copy articles and take them to your doctor to read."
 
 
"I wish I could be with someone right now.  I am feeling so crushed. I just came back from the doctor.  I don't even know what to type at this point.  I am just hysterical and can't stop crying.  I just can't take this anymore. My doctor doesn't agree with the Wilson's Thyroid thing, although he's testing me again through traditional bloodtesting.  I told him that I wanted him to entertain the idea that I'm misdiagnosed and that maybe it IS something curable, because if it was this Wilson's thing then maybe I 'd have a chance at a normal life.  He said that he would send me to an endocrinologist but that most endocrinologists don't buy into the Wilson's theory and that TSH was the best test.  Because I had to fast before I went there, I didn't think that I could take any medicine this morning.  My head was pounding.  I guess it was at his office that he and I realized how much headache medicine I've been taking on a daily basis.  Now I'm on another medicine for the prevention of headaches that I am supposed to take daily.  My weight is now at 150.......150!!!!!!  Never in my entire life........I just can't ........I am enraged and crushed...and beyond furious....I can't even catch my breath.  I don't even recognize myself  anymore.  I am just some ridiculous symptom list everyday!!!  My husband is out of town, my sister is overseas and my kids are at school and I can't even go outside to walk because it is pouring rain and my face is so swollen from crying. I know that we all have problems and I know that I am no different, but, honestly, right all I can see is this life of mine and how upside down it is with no hope of it changing or being cured and I just can't accept it."  [NOTE FROM DOMINIE:  This patient finally found a doctor that would help her more.]
 
 
"Wow – how far I have come...discussing the autonomic nervous system with fibros – even a few short months ago I had a phone conversation with a medical Professor before I knew I had fibro, and I said, “I have been doing research and have something wrong with my autonomic nervous system; i.e. my parasympathetic can’t turn off the sympathetic for me to sleep at night, plus I had the proof of HVS breathing pattern disorder (at that time)”.  To which the Professor replied that I was talking absolute rubbish and where did I get all that nonsense from …. I told him he was an arse, hung up, hyperventilated madly and banged my head on the table while crying in complete desperation.  I had rung to get a lab test to read cortisol and came away empty handed and really down."
 

"My first doctor saw me laughing at Costco one weekend and told me that she was convinced that I had spent the last 3 years lying to her about having Fibromyalgia. What she didn't understand was that having a chronic illness doesn't mean you don't get to be happy. In fact, it makes the happy moments that much sweeter."


"My rheumatologist was excellent at diagnosis. This doc determined that I have both Fibromyalgia and Osteo-Arthritis, took X-rays, ran blood work, and did the pressure point test. The doc asked a lot of questions, but didn't really let me ask questions....didn't listen very well and didn't answer questions as fully as I would like. (I apparently ask too many questions.) The doc was very good about giving handouts with good information about Fibromyalgia and was knowledgeable about the condition. However....this doctor is VERY drug-oriented. Massively, intensely, overtly drug-oriented. I had an allergic reaction to the first drug, and refused to take it any more after just one dose. The second drug caused me to go into a catatonic state. I could not think. I could not plan anything longer than 2 minutes in advance. I could not function. Sometimes I could not articulate coherent sentences. I told the doctor I quit taking the drug because it was making me catatonic, and it frightened me. We got into an argument about how I have unusual reactions to most drugs, how I don't like taking drugs unless they actually help and don't hurt me, how I didn't want to take 20 mg of Prednisone for 6 months because I was worried it would give me diabetes and cause other more serious problems, how the diclofenac only works if I take it rarely (doc wanted me to take it twice a day every day all the time - even though it's an NSAID and will damage the kidneys, and even though my family has a history of kidney cancer, and even though it gives me tinnitis if I take it more than 2 days in a row!, and even though it's effectiveness diminishes the longer I take it). At the end of the argument the doctor stated they could not see me any more if I refused to take the drugs prescribed, and couldn't help me anymore. This doctor and I have a difference of opinion about the use of drugs in treating disease. The doctor is adamantly opposed to any natural methods. I wish I could find a doctor who might be more friendly to natural methods and who won't go ballistic on me when I tell them that I simply CAN NOT take certain drugs because I have intolerable reactions to them. At the moment, I'm just doing my own research online, taking vitamins supplements, and occasionally talking to my family doctor about it."

 
Need to vent or read more on this subject?  See the
BAD DOCTORS FORUM
http://curezone.com/forums/f.asp? f=270&t=26171

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II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God."  Visit Dominie's FMS/CFIDS Homepage at www.fms- help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.