Fibromyalgia..........................

by morty 60 Replies latest jw friends

• 

  mrsjones5

  BOTR, he really didn't feel put off by the diagnosis until we came back to California and his new doctors started treating him like he was crazy. The doctors made my husband feel like he was doing something wrong and it seemed like the docs thought he was pulling some kind of a scam regardless of what my hubby's medical records said. One doctor even asked who told us it was fibromyalgia like we had pulled it out of thin air when all the while the diagnosis was in my hubby's records which the good doc refused to read. It got so bad we began to think maybe it was a racial thing, big strong black man says he has a woman's diease? He's got to be faking it.

  We've never looked at it as just a woman's disease cuz pain is pain, right?

  Thank you Tal
• 

  Band on the Run

  OMG. I was treated the same way with my facial neuralgia. The similarities are striking. They may have been very concerned about suicide and wrongful death suits but they looked at me as though I was in Bellevue or Bedlam. It was very hard b/c so much of it was visual, not expressly stated. So true. It took every bit of my character and perhaps help from above to hang on. I was so afraid of impulsive action just to end the pain. Diabetics, cancer patients seem to get respect. Pain patients rarely get respect. It is an enormous burden to bear on top of the pain itself.

  I was told that it was medical belief that nothing could be done for me. Opiates did not work. Doctors are told they must be gods and relieve patients so they take that inability harder than most people would. I believe they project their inadequacy on patients. Blame the patient, not the situation or your inability to heal. A very famous shrink once said to me, "Crappy circumstances are crappy circumstances.

  Well, well, well, I truly thought it was only me. I must state that when I was first ill, pain mgmt existed only at cancer centers. I would beg Sloan-Kettering in NY to make an exception to their policy for me. When hospitals opened up pain mgmt to regular patients, the pain doctors at such a different attitude. I took opiates. Many doctors acted as tho I was a drug fiend. The pain doctors expressed concern that I was being forced against my will when I tapered the opiates.

  They should have to endure what their patients endure for at least half an hour. It might utterly transform medicine. I was worshipped modern medicine before my illness. No more.
• 

  mrsjones5

  " They should have to endure what their patients endure for at least half an hour."

  My hubby says that often (he was up all last night cuz he said the muscles around his eyes were burning and he couldn't sleep). Those who doubt the pain of fibromyalgia should have to feel that pain. Too bad that wish can't come true.
• 

  talesin

  True dat! I am sick and tired of ALL folks who like to pretend this is not 'real', and would like to see them live with it for a year, to be honest.

  Side point re Drs. not wanting to look at your history (isn't that why we bring it with us????) ,,, when my GP quit, it took a year to find a new one (we all know the Dr. shortage here in Canada). One woman I tried out, refused to fill my lorazepam Rx, because she said she "doesn't believe in it". She, too, refused to examine my medical records. So, for 2 months, I put up with the sleeplessness & nightmares, until I found a real doctor, who deigned to read my history.

  arg

  t
• 

  Bubblegum Apotheosis

  Driving brother "Sick" to his monthly doctor's appointment should have counted for "Field Service", why can't we count doing good deeds for our own, driving to Los Angeles, San Fransisco, putting them on a flight to visit the Cleaveland Clinic. Local dcotor tells brother "Sick", you have Fibromyalgia, I am sorry to tell you!" I asked the rheumatalogist what is Fibro? Doctor says, "It's when we don't know what is wrong with you, it could be in your brain, it could be for real." patients says "If's its in my brain, take it out, if its not real, why am I in so much pain! "Let's put you on some anti-depressants to lower your hyper-vigilant state, calm you down, even take away your muscle pain." MD goes on to tell brother "sick", "I don't know what is wrong with you, somataform disorder, again let's try Prozac, we have nothing to lose!

  Dear doctor explains to brother "sick", "there are many conditions that are not easy to diagnos, but patients do better if you tell them, they have a condition versus doctor shopping to find what ails them. Irritiable Bowel Syndrome "IBS" "Lupus (some types of unprounuced lupus) Lyme Disease, Multiple Schelrhosis (little to no, dymilenation of the brain, no white goodies on the MRI) MS, Fibromyalgia are "catch-all" disesae when the doctor does not know the etiology of what ails you. The best thing most people with Fibro can do is lose weight, we see this condition is heavy women!"

  Doctor left "brother sick" in more limbo than before, I don't envy anyone who has to endure against biased doctors. Prozac to cure all ailments, a relative new treatment the last twenty years to deal with every issue, when a doctor has no idea what is wrong with you! If there are typos, sorry I am bored at meeting right now!
• 

  talesin

  What a load! Poor sick person. A physiotherapist can tell if you have FM by checking a total of 18 pressure points on your body. That dr. is ill-informed and lazy! Get your friend to do some reading -- lots of books at the library on the FM journey.

  tal
• 

  Bubblegum Apotheosis

  @talespin, you are correct, if the disease is not painted on your face, your out of luck. A friend of mine woke up to " drop foot", doctor sent him to a podiatrist, "dear friend, I think your doctor should have sent you to a neurologist!" my words scream in his ear. "My wife think's I am faking it, the doctor said it's due to stress!"

  "Drop Foot is not a stress related symptom, (I keep my own wild speculations what it might be, to myself) after visiting two General Practicioners, his wife yelling "Your faking this, you are faking this!" with haste I drove him to a neurologist in Santa Barbara, and he had a rare nerve disease! I am not a doctor, I knew "drop foot" was a nerve related disorder, how in the Hell could two MDs, think to send him to a foot doctor ( less training than md), how can this be? I feel for anyone with a disease that inflicts havoc on your life, my friend has repeated this "You really find out who your friends are, when you become chronically ill!)

  His doctor contacted the C.D.C. for a strange amount of occurances in our local area, C.D.C. sent a field doctor for further research, I guess he was not faking it? His wife dumped him for another man, now he is alone.
• 

  talesin

  wow, the poor guy. And it's true that you really know who your friends are when you're sick.

  t
• 

  Band on the Run

  Re; tender points. Even when I don't feel pain, touching a specific tender point can make me up screech and jump up to the ceiling. I was confused by FM, until a specialist made a point. I thought I had joint pain. He grabbed my knee so hard. I did not jump. Next, he just squeezed my skin. It was sheer agony.
• 

  talesin

  Yes! BOTR

  I was a subject in a study on FM a few years ago, and the pressure points is the deciding factor. Even if the FM is not 'flaring', and you feel well, the pressure points will tell the tale.

  I am so sorry for your pain, sweetie, I know it well. Glad you finally got diagnosed.

  xo

  tal