COMMUNITY QUESTION: Dealing with unsympathetic doctors.

AlyssaWinegardenAlyssaWinegarden New Life Outlook
Pam asks: 'Okay fibro community. I'm a 13 year CME/CFS patient. Had a terrible fibro flare and the doctor says go home and take two Aleve! What do you think about his answer and how do you cope with unsympathetic doctors?'

Comments

  • Alyssa, I'm sorry your had such a bad experience with your Dr. Was this your PCP or a specialist, like a rheumatologist? It's possible that your Dr. just doesn't know what to do with Fibro. It is one of the diseases the medical profession knows the least about. Take heart, however, Social Security Disability now lists it as a qualifying condition, but it is very difficult to qualify for benefits under that listing alone. I would share this info with you Dr. and have an open discussion about his/her experience with Fibro. It's OK to ask them about their personal and professional opinion about this disease. Then, ask the Dr. if you were his or her spouse or child, what treatment would he recommend? If this fails, I would find another Dr., preferably a Rheumatologist or failing that, a Spinal Orthopedist or a Doctor of Osteopathy (DO.). Flares are terrible and there are treatments for relief. How about a Torodol and Kenalog injection? What meds are you on (when the flare hit)?

    By the way, I have RA, Fibro, Sjogrens, and about to have an ACDF (cervical spine surgery) due to RA damage causing radiculopathy and myelopathy.

    I wish you better days and gentle hugs!

  • @AlyssaWinegarden . Hi. The doctor probably didn't know much about fibromyalgia. The diagnosis itself is made once the common causes of pain etc are ruled out so when people dont exactly know what it is or why it is, then there goes fibromyalgia diagnosis.
    So, While the suggestions are alright, but seeing either a Rheumatologist is alright, Most newer spine clinics are manned by Physical Medicine & Rehabilitation doctors. They are also great at treating myofascial issues generally. So, Looking for a PM & R doctor is good.
    Supplement as CH Alpha, while not tested for fibromyalgia specifically, is beneficial to many people based on my discussions with people who had fibromyalgia but used it for Osteoarthritis pain. ts active ingredient Collagen Hydrolysate is US Patented and researched many times including at Tuft Medical Center & Harvard Affiliated Beth Israel Deaconess Med Ctr & at Penn State by Dr. Kristine Clark & at German Olympic Training Center Rhein Rhur. So read about it. Maybe very surprising. Use it for Osteo Arthritis. See what happens.
  • julesjules Member
    I had 2 unsympathetic doctors before I finally saw a younger male doctor who diagnosed it within minutes, I was self medicating for nearly 3 years before this, it's a relief to know I'm not going mad, but hard for my husband, son & brother to understand.
  • So lucky that my Dr. DO actually, studied up on Fibro. We did the pres dance for many years for that and depression and have settled on Cymbalta, Norco, gabapentin at night which I'm not sure if it helps, a creme for the itching, no rash, that I get, Xanax sometimes, and Ambien for sleep but not if I've taken Xanax. Crazy but I also take Nuvugil, 1/4 tab, for daytime sleepiness, but may have to increase to 1/2. I go to just one pharmacy so I don't think things conflict too much. Also have Diabetes type 2 diagnosed just a few years ago so take Metformin. Others for blood pressure. I'm 72 and never thought I'd take so many meds. Sigh.
  • I fell and hurt my back soon after I had been diagnosed with fibro. I went to a pain specialist and when I told him I had fibro he said,"Damn it! I a so sick of fibro diagnosis's . I do NOT give pain shots for that so look elsewhere. I can recommend a good psychiatrist."
    I stood up and looked him right in the eye and said,"You know what , You are not a good fit for my health plan. I'm leaving now, and I BETTER NOT get a bill." I left and when I got home , I turned in a complaint to the better business bureau. We have to be our own advocate!
  • @youdontlooksick_2633. GOOD FOR YOU!!! Can't believe a doctor would be so callus! But, I have found "specialists" to be the worse! You are absolutely right, we have to be our own advocate. I'm not an assertive person, so I find it difficult to express myself, but I am beginning to learn to do just that. At 65, and suffering from fibro for 22 years, I am getting tired of not being listened too. I have been in a 8 month flare??? with new symptoms that I have never had before, and I am concerned that there might be some other medical condition going on, but as soon as I say the words, "I have fibromyalgia", they stop listening to anything else I have to say. I find it so frustrating. Fortunately, I do have a good Primary Care doctor, but she doesn't know what to suggest anymore either. So, I don't know what else to do at this point. Any suggestions?
  • Yes, go to a rheumatologist. My rheumatologist was the one that diagnosed and is treating me still today. I told him what happened and he told me I did the right thing by turning him in to the better business bureau. He also told me most doctors now have to have a rating system and a place for reviews. So, I went in and found it !!! i was more than happy to share my experience with him.lol Good luck finding on RHEUM... doctor!! Blessings,Debbie
  • AlyssaWinegardenAlyssaWinegarden New Life Outlook
    @Cheree50 Just want to ensure you saw @Youdontlooksick_2633 's reply!
  • @AlyssaWinegarden, thanks for letting me know. It was good to see @Youdontlooksick_2633 reply. I've seen a couple different sights were you can rate and get ratings on doctors. I think it is a great idea. Some doctors do see themselves a demi-gods. And the patient is the one that suffers from it.
  • @AlyssaWinegarden
    I had one doctor that only wanted to try medications. I wanted to try alternatives, but needed a referral. I asked if he loved his wife. He said yes. I said what if your wife came to you and said she had been seeing a doctor for over 18 months and the only change was she gained 20 pounds? He asked what alternative I wanted to try first.
  • PoohPPoohP Member
    @Youdontlooksick_2633 I did go to a Rheumatologist. He treated me for Lupus for a year. None of the treatments helped. He initially told me he did not believe in Fibromyalgia and that it is a brain problem. Once the Lupus treatments did not work, he changed his diagnosis to Fibromyalgia. I called him out on it. He told me now it was more medically accepted and explained. However, he was not completely ruling out Lupus and that Ineeded to lose weight. I had gastric sleeve surgery 9/27/16 and have lost 88 lbs. Not much of a change with the Fibro. I am now on 800 mg Gabapentin for Fibro. I am going to look for another Rheumatologist.
  • vm56715vm56715 Member
    I was fourtunate enough to find a local rheumatologist who's wife has fibro among other illnesses. I happened to be chatting with a lady in a pharmacy line who works for him and highly recommended him. He is older and I suspect getting ready to retire but at least I have a good diagnosis from him and my Gp confirms it. They seem to communicate well with each other. I have struggled with symptoms for years along with agressive severe arthritis which has destroyed all of my joint cartilage, and self fused my neck! My 25 year old daughter has fibro also with ehlers- danlos syndrome and I worry for her. She is absolutely miserable, trying to work and go to college. I am so glad my career was close to done before this hurricane struck. I will hold a good thought for everyone one on this site. This is not an illness I would wish on the meanest person I know. Hang in there all, the more noise we make will perk up someone's ears and maybe they will hear our cries!!!
    Vicki
  • debbidebbi Member
    @Cheree50 Hi ,I have had fibro since1990 . i was diagnosed in 1995 yep thats how long it took me . But anyway ,Has any of you tried deep muscle massage? I live in a small town so i can`t find anyone that does them,My Neice has them once a week and she swears by them,.
  • I am in need of a Primary Care doctor who is empathetic to Fibromyalgia suffers. I live in Rochester New York and would appreciate some suggestions. I have tried many Rx drug treatments and have had some awful side effects. I decided to do a whole body cleanse and started taking vitamins and herbal supplements and am now redefining my diet. I've been diagnosed since 1992 and I'm not as bad as how I started out...on my couch in a fetal position for 9 months, but some days are unbearable. I've had injections in practically all my joints (for OA), physical therapy, pain management group therapy, and mental health for depression. I would love to be pain free again. Again if anyone knows of a Primary doctor in the Rochester, NY area who treats Fibromyalgia please share. Thank you.
  • AlyssaWinegardenAlyssaWinegarden New Life Outlook
    @dianelhou Thanks so much for reaching out! This website has a list of rheumatologists in Rochester, NY. I hope it helps!
    http://doctor.webmd.com/find-a-doctor/specialty/rheumatology/new-york/rochester

    -Alyssa
  • I was told it was in my head by a rheumatologist. What the hell does that actually mean. How hurtful. When I first met her she was kind and concerned, when many of test results came back negative, that is when she said "it was in my head." Still makes me mad thinking about it.
  • AlyssaWinegardenAlyssaWinegarden New Life Outlook
    @BarbaraChappelle123 I'm sorry to hear you went through that, Barbara. Unfortunately we have to be our own advocates when it comes to our health. Some doctors are more knowledgable when it comes to fibromyalgia and unfortunately others are not. This article on finding the right doctor might be a helpful read:

    https://fibromyalgia.newlifeoutlook.com/doctors-can-help/

    Gentle hugs,
    Alyssa
  • Thanks for the honest notes above. My doctor has moved on to a whole new career, which leaves me searching for a new have doc. I have an appt tomorrow, so I'll find out very soon if she's the doc for me. Question; when a flare happens is it an all over pain? For about 2 months I've had traveling pain, started in my right knee and left foot, because I care for my 93 yr old mom, I don't always have the ability to recoup. It's up and down my left leg and my other extremities are so heavy. I want to be able to describe my symptoms clearly to this new doc. Any suggestions? You'd think after 15 yrs of this, I'd know the drill!
  • @AlyssaWinegarden my doctor tells me to move more, but the more I move the more I hurt. I walk a lot at work and by the end of the day I'm so done that all I think about is going to bed because I'm in so much pain. My doctor is not very sympathetic at all and I get very frustrated, he just prescribes me meds and sends me on my way :-(
  • @Nancy63 I have pain in my left knee more than my right, the right one hurts as well but seems more prominent in my left for some reason. When I first noticed something was wrong 5 years ago I told my doctor that my legs felt heavy, she just prescribed me Motrin and sent me on my way, now 5 years later I have a diagnosis but not relieved of any pain. I work in an elementary school and I'm on my feet all day, when I get a chance to sit the teacher has me move around the room. I can't say I can't right now I'm in pain because she might think I'm a complainer. When I do too much I end up in bed for a couple of days in pain and unable to move. I have switched doctors twice, my current doctor is no help. I need to find another one that is more knowledgeable with this condition.
  • @AlyssaWinegarden Hi, I would probably be in shoke..then by the time i got home...TICKED OFF is the politically correct way to put it!! And find a New Doc! (Or go again, and say something to the effect shove it up your ***) you’re Fired!
    Kindly,
    Me-
  • Sorry shock I meant...
  • To put it bluntly, many older PCPs and some Specialists are still Fibro- ignorant nowadays and basically don't like any hard problems to solve. Quite a few are still very narrow minded, old school and are prejudiced against Fibro and Chronic Fatigue patients. It was never even considered a real disease when they were in medical school and as it became recognized they had no training on compassion and bedside manner in order to treat it. So as difficult as it may be seek out younger doctors that studied it and aren't ignorant about the tremendous amount of painful, long lasting flareups and various symptoms. Life is hard enough with Fibro without being treated poorly and rudely by your doctor who are many times arrogant and condescending towards you. FIRE EM!

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