Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Aug 11, 2006.

  1. Lolalee

    Lolalee New Member

    I have posted recently about my temporary left eye blindness episode. My eyes are fine according to all the Opthalmologist tests. My carotid artery and echocardiogram came back ok as did all the lab work. Today was the next step in solving this mystery. I had an appt. with a Neurologist and he asked lots of questions and I described strange sensations on the left side of my body....i.e. not only the temp blindness, but also headache on top of head directly above left eye and also left leg numbness and episode of paralysis. I often use cane because the left leg just won't "work".

    He asked if I had any serious medical conditions. I told him that I suffer from Chronic Fatigue and Immune Dysfunction as well as Fibromyalgia. (was it me or did he just dismiss these as not being serious?)

    He asked me if I was sleeping well. I told him that I couldn't sleep without medication. He said "why?". I said that is one of the symptoms of FMS. (again, that look) He then did an exam where he turned my head to the right and to the left while pressing my neck and shoulder area. I indicated that it was painful...at one point I shrieked. He said "that shouldn't have hurt so much". By then I was seriously questioning his knowledge of and/or opinion of FMS.

    He had me stand up and step forward first with my right foot and then step directly in front of my right foot with my left foot. I stepped forward with my right foot and when I tried to step directly in front of my right foot with my left foot, I could not lift my left foot from the ground. I made several attempts and when I finally was able to lift my left foot, I toppled over and the doctor had to catch me.

    He acted as if this was strange but did not hint as to what might have caused this. He ordered brain scan and EEG of the brain.

    He then proceeded to tell me that I was extremely tense. He told me that my muscles were stiff and in spasms (big surprise). I asked him what his opinion was of Fibromyalgia (silly me). He said,there is not one test that proves that this is a true illness and it is a name that is given when doctors don't know what is wrong with a patient. He said he finds this occurs to a lot of women because women worry so much. He told me that I should spend quiet time doing absolutely nothing...just meditating. He told me that I need to love myself..yada, yada, yada. He said all illnesses stem from emotions...all illesses...cancer, diabetes, etc.

    I said what about small children who are diagnosed with FMS and he immediately said that small children learn early in life not to feel good about themselves because of the way they have been raised.

    If I thought it would have helped to discuss research and recent findings with him I would have, but I knew he was convinced that he was right and I just would have gotten really mad and he would have written me off as another hysterical female.

    Oh Lord help me. Supposedly this Neurologist is one of the best in this area, but I am so upset right now about the way he dismissed FMS and CFIDS that I just want to SCREAM!!! To top it all off, my husband was with me the entire time and he seemed able to understand the doctor's viewpoint. And, here all this time I thought my husband would have supported me more.

    You know what this has taught me......No one, but no one knows how I feel but me and of course all of you who go through this awful stuff...oh I want to cuss so bad!!!

    Why am I so angry? Oh Lord, if I hear another person tell me that I have to meditate more, pray more, be still and whatever else and I will be healed I think I'll truly lose it!!

    I'd better quit now....this is a bad, bad time for me.

    [This Message was Edited on 08/17/2006]
  2. victoria

    victoria New Member

    I don't think I know anyone personally in my local support group that hasn't had this experience as well, whether with CFIDS or FM... I'm sure it is ture of the majority of people here as well.

    It IS enough to make one scream. When I first realized CFIDS is what I had, I had to overcome a lot of prior joking by doctors we knew that profiled CF/FM as upper-middle-class women who drove BMWs and were too fatigued to do anything but go to the shopping mall...

    I could barely bring myself to even mention the words as a possibility, but then worked hard to find a doctor who believed me... didn't pay a couple who were 'writing me off'.

    Well, sadly this is not the first time I've had to overcome doctor prejudices tho about psychosomatic illnesses, have had it all my life due to having hypoglycemia and TMJ and other things. . . doctors were always trying to send me to a psychiatrist even tho I insisted I liked my life, just didn't have enough energy or had chronic pain! (TMJ turned out to be due to orthodontics from teen years)

    I also realize I've had CFIDS most of my life due to a year-long bout with mono and meningitis at 18...

    Doctors are still being taught the 'God' complex and the stigma of being a woman still remains - that we are hysterical and somatisize our 'emotions' - there are even women who believe this as well.

    The only way I've ever found help with any of my problems is to do research, research, research to find doctors who have gone on record as believers in CF/FM - or to get referrals to doctors from those doctors. Even tho this meant I have usually had to travel long distances to get help, it ultimately saves time & money.

    Currently, I take my son (chronic active lyme, according to CDC standards) to a clinic every few months, a 400 mile round trip, as I was told there were no adequate LLMDs around Atlanta and to not waste our time & money. The internet has been a godsend for researching 'good doctors'!

    I don't know if any of this helps, but my heart goes out to you... you're right, it is hard for your husband even to understand, even if he feels sorry for you. And in one way it may be easier for him to believe it might be emotional rather than an actual physical disease.

    all the best, we're all in this together!

  3. Lolalee

    Lolalee New Member

    To be honest, when I saw how long my post turn out to be I wondered if Id even get one response. And,look at you...you took time to address my issues and you have really made me feel better. You've make me realize that I'm not alone in this and it certainly makes me feel better.

    Bless you, sweetie.. sorry you've gone through so much and so sorry that your son has been stricken by Lyme. Fortunately, I've found a compassionate and knowlegeable doctor to treat my FMS.

    We will all just keep plugging along and together we will get through the fog. There is a light at the end of this tunnel

  4. kellyann

    kellyann New Member

    I know exactly how you feel. I have had doctors do me that way before. It sucks so bad. I hate it. Like we are making it up. We have nothing better to do with our time than make up an imaginary illness, what hogwash! I hate going to doctors! I really do! I have had one doctor ask me, "Well just what do you expected me to do about it?" I said "Act like a doctor for one thing, would be nice!" Jeez!
    You certainly have my sympathy! Unless they were to walk in our shoes they have no clue as to what we suffer from.

    Just know that we do understand!
    I have been right where you are. It isn't fair. Your husband should have spoken up for you, not agreed with the doctor. He is supposed to be there for your moral support. Sounds like he let you down big time to me.

    I hope you are feeling better by now, don't let that stupid doctor get you down. Fire him and get a better one.

    Take Care!
  5. Cinlou

    Cinlou New Member

    I'm so sorry that you were put through so much crud by that
    Neurologist. It is just awful to be sick and have people tell you it is all in the head.

    It is useless to try to convince these insensitive souls.. Believe me, we all do know how you feel.....it is not all in our heads! It is in our neck, shoulders, back and in every inch of our body.....!

    I pray the Brain Scan EEG all come out fine for you.........
  6. mrpain

    mrpain New Member

    Even as a guy, I go thru similar situations with doctors. My primary physician has said some things to me that I could read between the lines that he didn't believe in this disease. And my visits to all these specialist including neurosurgeons, surgeons, and all the rest, have been nothing but a waste of my time.

    They don't say it but I feel they think I'm either trying to get out of work, or looking for heavy duty drugs for recreation purposes. I can't believe these doctors don't get the up-to-date research and all the reports that are being done on fibromyalgia and chronic fatigue syndrome.

    Even my last chiropractor said there's no such thing and that it was "a catch all title". He went on to say that when doctors can't find the problem that they just call it either fibro or cfs... That burns me up!

    I could go on and on but let me just say you deserve a lot better and I pray God will lead you in the right direction as far as medical help.....of course I rather see complete healing for you.. Well take care and let us know if anything comes out of your test and lets hope that the doc you saw will somehow catch up to speed with today's world and the people that are in it...Take care!

  7. jenni4736

    jenni4736 New Member

    This is just proof that a doctor that is the BEST in the area...may not be BEST for you!

    One of the most important things to have with your doctor is the ability to clearly communicate with each other. If this man does not respect what you KNOW to be true...he is NOT the doctor for you. He clearly has NO concept of FM. How can he DX you with anything if he doesn't know what symptoms are attributed to it?????

    DUH??? STUPID DOCTORS ....they are the reason we stay STRESSED! We wait to get in hoping for a break and a cure...(or atleast some relief) only to get disgusted by there complete lack compassion and knowledge of anything medical outside their "SPECIALITY"!

    Sweetie...do his tests. Maybe he can help find something...or atleast rule out some things. Give him another chance but if he can not communicate well with you or you are getting more frustrated...look for a new doc...

    I swear they should have to take bedside manors 101 and they should have some rating system where the patients can rate their bedside communication skills so we know who NOT to go to!

    YOu sound like me...I don't need a massage...I need a punching bag with his picture on it! HAHAH!

    J.K ..No violence here...it would cause me to hurt more....but it would feel good to get the frustration out HUH?

    Let us know how things go. If you still don't like him after the next visit...ask around here for someone in your area....

    HUgs, Jenni
  8. cathugs

    cathugs New Member

    I don't think this was a long post at all.

    Sorry you had to go through this. It makes me
    upset for you.
    I hope the EEG turns out fine.

    I have a husband that doesn't really understand
    my fm, or he just doesn't want to. Some times
    I wish he had to walk a mile in my shoes.

    I have a good rheumy. He told me at my last visit
    that I probably researched the dd as much as he did,
    if I found any thing new that I thought we could
    try to let him know on my next visit.

    Hope you have a restful night

    {{{{{{cathugs}}}}}}}}}}} Ruth.
  9. MsE

    MsE New Member

    My doc no longer gives me the "meditate and exercise" lecture. He knows better. However, I had to go in to see him today, and darned if he didn't give me "the look." You know the one? Sort of a supercilious half-smile that he tried to wipe off his face before I saw it? And I thought I had him trained! Ha! They never quit!
  10. Lolalee

    Lolalee New Member

    Thanks so much for your support. It's so good to know that others have been in the same place I was in today. I usually don't get upset and rant and rave. Well, part of that is because I had given up on doctors in my area for 4 years, so I didn't have a lot to complain about. But today's experience showed me that things haven't changed.

    I won't fire him just yet. I'm going to go through with the Neurological tests on my brain. He's got a really long waiting list and good reputation so it is possible that he is a good Neurologist. Although, is it good to be a good Neurologist and not be aware of the neurological connection with FMS. Oh, well, I'll have my brain tests and see.

    I'll keep y'all posted. Thanks again for lifting me up.

  11. 69mach1

    69mach1 New Member

    i feel like giving him a good back hand of mine..it it wouldn't hurt so much../

  12. Lolalee

    Lolalee New Member

    Hi Cindy, thanks for your kind words and good wishes. You are right, it is useless to try to convince these insensitive doctors because, of course, they should be the ones who know more than us, right!!

    We'll see how the tests come out. It's one of those Catch22 situations where I don't want there to be any problems,but if nothing shows up it will be further proof to him that my problems are all emotional and I just need to love myself more....grrrrrrrr.....darned if you do...darned if you don't.

    Thanks hon,
  13. Lolalee

    Lolalee New Member

    I thought about you when I posted my rant because the subject of men with FMS and CFIDS did not come up with my doc. But I am certain that he would have said that men also hold things in emotionally and then suffer the effects by coming down with cancer or diabetes or FMS, etc. He was so certain that that was the case in every disease. I think that so many doctors have convinced themselves that FMS/CFIDS are "wastbasket" diagnoses and "catch-all" titles (those were the words the Neurologist used today) that they couldn't be bothered to read any research that might cast any doubt on their theories. Such a pity for them and for their patients.

    Thanks so much for your words of encouragement. I really "lost" it earlier because I was so hurt on all fronts. But, you and I know that we serve a God who wants
    only the best for us and He also forgives us for letting off steam. And most definitely, whether we feel like it or not, the best thing we can do is pray for these doctors and the medical community as a whole

    Blessings to you and your family,

  14. Lolalee

    Lolalee New Member

    Jenni, you are so right. As I talked to the doctor, I felt like we were not communicating. As worn out as I was, I'm sure I would have found the energy (anger-driven) to punch the bag a couple of good times.

    I'm taking your advice. I'm having the tests and then we'll take if trom there. I'll keep you posted.

    Thanks for you support, hon. It means a lot.


  15. Lolalee

    Lolalee New Member

    No, sweetie, I don't live in Indiana, but I suspect there are clones of these doctors all over the US. Aren't we lucky.....NOT!!!!

    [This Message was Edited on 08/12/2006]
  16. justjanelle

    justjanelle New Member

    the world could be cured of all illness if only we could train up enough psycologists and get every person in the world into a regular course of therapy beginning at a very young age?

    Well, let's have him write this up in a medical journal then! (And see how many of his peers laugh at him and wonder why he went into medicine in the first place.)

    Best wishes,
  17. Lolalee

    Lolalee New Member

    Forgive me for not replying to each of you individually. I am still exhausted and in a flare from that doctor experience. Just don't have the energy to talk about it right now.

    Thank you for always being there for me.

  18. angeljoe

    angeljoe New Member

    I had a similar problem with a pain management doctor.

    I screamed at the dr and told him to leave the room so I could get dressed and leave.

    He told me there is no such thing as fibromyalgia.

    He said people that complain all the time to their drs get labeled fibromyalgia.

    My hubby was also in the room, which didn't help me any.

    I left that office, and never looked back.

    I'm sad about this happening to you Lolalee!
    God bless,
  19. Adl123

    Adl123 New Member

    I dont blame you for being angry. Especially at your hubby. I would habve walked out of the Dr's office when he said those things, and my hubby would be sleepig on the couch.

    He had already eliminated his ability to help you. I also would not have paid for the complete visit. We don't go to the Dr. to be insulted!!! You are worth more than that, and he,above all, should know it. What a put down! What a lack of respect.

    I hope you find a more knowledgtable Dr. soon. Meanwile, Chin up. We are here with you, and we understand.

  20. KateMac329

    KateMac329 New Member

    Honey I am so sorry that this happened!!!!! BUT it doesn't surprise me one bit. And that is just sad!

    It just irks me that doctors think that all illnesses start with emotions. Now I agree that our emotions have an impact on our healing process but come on!

    I think if we constantly have an attitude of this won't work why bother trying or oh, here we go again it's not going to work, that kind of thinking can be detrimental to our healing but you weren't doing that. I think you are one of the more positive people we have around here!!!

    Now I have to admit something to you that I have never brought to this board and I am going to probably going to get slammed BIG time for it but I need to tell you that it actually works for me.

    I used to get treated JUST like you when I went to see doctors when I told them that I had CFS and FM. They would scoff and give me dirty looks. Now I get looks of intrigue and, well it's almost hard to explain....

    I was being examined by a doctor and he intimidated the daylights out me!!!! LITERALLY! He just scared me! As he was going over my chart he scoffed and said Fibromyalgia?!? I said, "Yes, well that is just what one of my doctor's diagnosed me with but I don't believe I have it."

    It just came out. I don't know why I said it but I did. Sometimes I do question my diagnosis but I have never done that before. This doctor actually listened to everything I had to say from that point on like I was some rational person. It was like because I said that particular statement I was somehow changed.

    I didn't say I didn't believe in FM itself I just said that I didn't think that "I" had it.

    Things have been different ever since. I have tried it out at every doctor I have been too since and they have all treated me the same way too. It is like I am somehow now a more rational person because I question the diagnosis or something.

    Now the REASON I do this is because I feel that the doctors and nurses LISTEN to me more now then they have in the past. I feel they immediately wrote me off because they thought I was one of "those" patients. A complainer or someone who found things to be wrong with her.

    So maybe I should be kicked out of the "club" but I have found something that works for me and I wanted to share it with you.

    So sorry if I have stepped on your toes or anyone elses. I do believe in us and what we go through. I want to make that very clear but I am doing what I have to to get the best medical treatment I can.


    I really am very sorry that this doctor treated you the way he did. And also that your husband seemed to agree with him. I know it hurts when you feel you have someone in your corner only to find out that they didn't really believe you all along.


[ advertisement ]