Just crying tired of defending this DD and no one believing me

Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Mar 27, 2006.

  1. bunnyfluff

    bunnyfluff Member

    I am somewhere between anger, resentment and frustration. I am being referred to a Neuro because a lot of my pain has those characteristics, and I think I need a med change. But in the 7 mins he has to see me, is he REALLY going to listen, or am I once again going to be judged, dismissed and pushed aside?

    It was the same thing when I had the undiagnosed Celiac's for NINE, COUNT 'EM NINE long years. I was ignored, called a hysterical anorexic, possible bulimic, told I needed to just take suppliments. It is part of the reason I am in the condition I am today, so much damage was done to my body, and I got so deathly ill before anyone would actually believe that something was wrong, because they didn't know, and couldn't see.

    So, it's like that with this, isn't it???? It's something they DON'T KNOW, and, they CAN'T SEE, so in their opinion, once again, it must not really be much. Or maybe I am making some of it up just because I have nothing else to do with the next 30 years of my life. I don't know what the theory is there.

    I just think that if anyone would ever take the time to actually LISTEN to my medical past, help put the pieces together, LISTEN to ALL of the symptoms I have today insetad of just going "unresolved pain & fatigue", maybe we would be getting somewhere with this.

    A nurse told me that one reason we are not treated better is that there is no "real money" in treating us- no surgeries, etc., just pills and long-term management, so that's why Dr's don't care more about it.

    And that makes me sad, too. :(
  2. EllenComstock

    EllenComstock New Member

    I think most of us here can share in your frustration. I don't have celiac, but I also had to diagnose myself with both endometriosis and FMS. Then, after years of searching, have finally found a good doctor for the endometriosis, another for the interstitial cystitis (chronic inflammation of the bladder), and the FMS (he also is good for my low thyroid and restless legs syndrome).

    I had several surgeries that were totally unnecessary and wasted many years on silly procedures. In the meantime, I was suffering with pain, frequency, total exhaustion from not sleeping for years, etc. It made functioning and holding down a full-time job extremely difficult.

    I know how hard it is, but keep trying. You might also, if you haven't already, check the doctor referral section on this website and also post a message to see if someone knows of a good doctor in your area. That's how I found my FMS doctor.

    Good luck.

    Ellen
  3. kdeenak

    kdeenak New Member

    I can SO relate to what you are saying. I stay angry and just sad most of the time. People, especially doctors, don't understand, they don't believe you. It is like it is some big joke. I feel like I have leprosy or something and I have gone back in time because there is such a stigma associated with Fibro.

    I can remember back a few years ago when I worked at an internal medicine clinic there were a couple of doctors and nurses who used to actually laugh and make fun of patients who had fibro and CFS who had just left. They would stand around the counter and talk about them, laugh, say how crazy they were, etc. I didn't have it back then, but I remember feeling so sorry for those patients. Little did I know I would be in their shoes just a few short years later.

    With all the advances we have supposedly made in medicine, we seemed to have been left behind. No one, except my husband who is a PT, understands how I hurt and the difficulties that I go through day-to-day. My friends and in-laws have never heard of it (and don't seem to care to know about it, and always forget that I have it and are annoyed when I am in pain), my mom knows a little about it just because of me.

    My new doctor doesn't even know I have it and I am terrified TERRIFIED to tell him because I don't want "the look" and then the pause. My husband won't go in there with me to help me tell him because "he doesn't want it to look like he is interfering". So, I need something for pain/something for sleep, but I am scared to ask him because I don't want to go through doctor after rude, crappy doctor again. I can't go back to my old doctor who was great because I moved away. It shouldn't be this way. It shouldn't be this hard.

    I believe for a lot of physicians if they can't figure out what to do to help you or what is wrong with you pretty easily, then they automatically put the blame on you, because that is easier than taking the time to help you and it makes them look better too.

    Maybe someday it will get better. People say it is better, and I think it is better than it was 10 years ago, but there are still a lot of jerk doctors out there who don't realize it is a valid disease and we hurt and need help and understanding.

    Hugs,

    Deena
  4. Tibbiecow

    Tibbiecow New Member

    This directly from my own rheumy; if everyone had my doctor, this would be a message board full of happy people who just love their kind, compassionate, understanding doctor who is willing to help patients try almost anything for fibro relief.
    He is unfortunately retiring which has me distraught.
    Anyway, he is taking LOTS of time to get all of his rheumy patients (he is also an allergist) to a doctor, naturopath, alternative therapist, anyone who can and will take care of his patients reasonably well.
    He says himself that doctors don't want fibro patients, because they take a LOT of time, and they generally don't get better. You have to try lots and lots of different things to find your patient appropriate relief, and that can change at any time. So back they go to trying this, that and the other to find relief. Draining, time consuming, and very little reward. Most of this profession is diagnosing a problem, and then fixing it. No fix for fibro, so multitudes of doctors don't even want to go there.
    Tibbie
  5. NyroFan

    NyroFan New Member

    bunnyfluff:
    No more tears, OK? Yes, it is that frustrating and maybe the tears help, but I believe action is needed. I would go ballistic if I was treated like that. Maybe one of your doctors needs to be confronted and called on the fact that you are being wrong, just plain wrong.

    It is about the best I can think of, but I know when my tears roll I always dry them as fast as possible because all of the pain and heartache I had in the past comes rushing forward. No need to waste anymore is my attitude.
    Good you let it out, though. Now dry your eyes.

    hugs,
    n.f.
  6. willruthie1965

    willruthie1965 New Member

    How about having too defend yourself against family and friends Its awfull.I can't imagine a doctor who is a professional lettng you down also. Hang in there Ruthie
  7. Cromwell

    Cromwell New Member

    you are upset. I know how that goes. We need validation for goodness sake.

    The trouble is out of ALL the doctors the neuros seem the most pompous of all.

    My nice doc(Internal specialist) I linked back in with yesterday, dx'd my nerve pain in a few minutes, but he spent time talking gently with me first, letting me know he cared etc. He is the ONLY doc who actually felt me with his hands, felt what he could dx from touch. And was able to tell me the pain down the left side is nerve pain. He also was able to do this touch experiment where he could dx that a lot of the pressure on the nerves is actually from GAS in the bowels being trapped, distending the bowel. All that pain, and he said activated charcoal will get rid of a lot of it.

    So IF one or two of the others actually had FELT my side and tummy etc. then I could have been helped sooner. He also said it happens a lot with FM, this gas thing. It makes sense, as the colon is a muscle and if it is not working correctly we get gas plus all the IBS and stuff we get. The peristalsis is working badly, just like our other muscles are.

    Good luck with the nuero. Hope he/she has a better bedside manner than mine. The doc I saw yesterday gave me a better neuro testing than the neuro did!

    Love Anne C
  8. fibropax

    fibropax New Member

    So sorry to hear about your situation. Keep on trying. I too have tried several doctors until I found one that heard me. He is my neurologist. I went through several rhuemetologists who said "yes, you have fibro but there's nothing for the pain. Just do aerobics and get a good nights sleep." AS IF!!!!!!!!!

    I have been unable to work for almost a year now. I would break down and cry at work because I was in pain and exhausted. The doctors looked at me like I was a martian. They didn't get it. Fibro is greatly misunderstood. I do think that many doctors have the personality that likes to win and complete the puzzle but with us they can't. I think they get fustrated with their failure to cure us.

    There also is a school of thought that this illness doesn't exist and there is a doctor that supports this foolish theory and he is published in Rheumetology journals once in a while. I think some doctors read this and struggle with what to do or what is right for the patient.

    I just am grateful that I have my neurologist who is wonderful. Keep on trying until you find someone who will hear you. It is critical for you to have someone that you can work with and trust. Have you thought about talking to a therapist too? I have a therapist who has been my saving grace through this. It really helps to have someone in your corner that you can talk to.

    Good luck!


  9. ckzim

    ckzim New Member

    It's horrible of what you have been through and horrible whats happening again...you must be fit to be tied!

    I know alittle bit how you feel...and I hope only the best out come for you.
    I'm sort of in the same situation as you, only it's all Fibro...they throw me from doctor to doctor like I'm a rag doll...and they all have Timers it seems...I get maybe 5 min...and I'm to listen not be heard in that 5 min.

    I get so nerved up about going to another new doctor...weeks before.

    Do try to tell yourself...it will be ok...

    What I do is have all my ducks in a row...on paper...show the Dr..my brief notes if I have too.
    I put the most important things at the top..cause that's probley all he/she will read...keep it simple, and to the point..

    I ease them into it...is how I look at it...this symtom this time...next visit..add one. I say things like...What can I do about.....(fill in the blank.)???
    I let them answer me... I keep it short and sweet, just like they do to me...three or four questions at a time...they can't handle anymore than that...lol

    If I ask about what can I do about sleep? as I don't get any.
    He replys directly to the question with...have you tired???...I say Nope.. It didn't work..or that worked... I need more.

    I never say...what can this be? NEVER! I let him tell me.
    Cause I found out with Fibro...that's what they will blame it on...and I act surprized if they say Fibro...like...Oh... yeah...Fibro...then right on to...
    I got this going on...now what? Type attitude...you know what I mean?

    Sometimes the doctor is walking out the door...and I'm still saying...what about??? He litterly has to come back into the room to answer me.
    Of course.. One foot is out the door, and one hand on the door knob...Oh yeah...it has gotten that bad. And that was my surgeon!!!!
    I go in with a certain goal in mind....for me it's the pain...that's my main goal...what ya going to do for the pain? They ask...what pain?...I point it out..scale it out..1-10.. they answer.

    I go from there...I can tell if a doctor is going to take the time with me or not...some come in and sit...others just stand...the standing ones...get 2 questions at most...
    Just kind of feel them out...of what they are like...especailly the new ones I have to go to. Im in that process right now...and she was horrible!

    I see it this way...I can't change what is going on with these doctors...as sad as it is...so I just have to beat them at their own game, and get what I need to make my life bearable.

    I hope this helps alittle...


    KathyZ
  10. bunnyfluff

    bunnyfluff Member

    I felt so rotten, and was running a low grade fever this morning, so my PCP let me come in today. My lymph nodes in my neck were swollen, and I asked him point blank at what point do I go from FMS to CFS in diagnosis, and he said "you're there". I think it was the (EXTREMELY!) high EBV titers last time that finally convinced everyone that I actually wasn't making some of this stuff up.

    They took more blood for tests, and he actually listened to my thoery about getting something from the blood transfusion in 2001. He said he didn't trust the results from the Lyme tests, these labs were too overwhelmed, and I am being referred to an infectious disease specialist.

    So, I got past that. Now if I can just get the Neuro to stop & listen & not think he knows it all, I might have a chance. But you're right, they are pretty high up the food chain, so it isn't going to be easy. :(
  11. Jordane

    Jordane New Member

    It is hard enough dealing with this illness,you dont need that crap!!
    I have a great Doc and I appreciate her.Some arent so great.
    You hang in there.Take Care.
    Jordane
  12. kdeenak

    kdeenak New Member

    When are your appointments? I hope soon. I am glad you got to see your doctor and he listened to you. It is just so frustrating though. Take it day by day.

    Did your PCP do anything to help you as far as give you something, offer you anything, or did he just give you the referral to the infectious dx doctor?

    Let us know how it turns out, especially with the neuro dr. Hopefully, he will be open-minded and will listen to you. Take a deep breath and think positive :)

    Hugs,

    Deena
  13. gelicab

    gelicab New Member

    In my opinion you are doing what is right by continuing down the road to better treatment and equal treatment from the doctors.

    I, like you had seen several different doctors before I was diagnosed. I was a Rhematologist who took one look at me and said "I know what it is" I heard the words fibromyalgia, pain and longterm management and thought my life was over. However, it just began in a new way.

    After 3 years on the same medication I too felt frustrated a few months ago, crying because no doctor would touch the pain managment that I needed. At a point the doctors pass us on and we have to rely on our own insticts. Determined to get relief I had a pain management referal from my PCP and decided to call the old Rhemy too. As the first appointment was going to be more than 5 (yes, 5) months away. I returned to the Rhemy and he said "where have you been?" and welcomed me back with over 45 minutes of talking about all that I had been through with the other doctors and how he would treate me with level III narcotics, a power scooter for long distances etc. He was a breath of fresh air. I even thought I would kiss the guy thats how happy I was *and I'm a lesbian lol

    You are going to get through this. Please, dont give up!!! Look for a Rhematologist in your area. And see if they can help. I'm in Oklahoma, and I'mnot sure where you live. But if I had trouble finding a doctor in my own state I would travel out of town if need be. Thats how bad I need help!

    Good luck to you, you are in my thoughts. Keep on fighting - we are all right here with you!!!

    Gel
  14. gelicab

    gelicab New Member

    this is great!!!! I'm in Oklahoma City, Oklahoma. My doctors name is Dr Frederick Delafield he is with Mercy Health Center.. we are only 3 hours from you!!! Look at your insurance.. see if you can come see Dr Delafield. He is incredible and I KNOW he will help you...

    My pain is concentrated from my lower back down mainly though I also have TMJ, Endomestreosis, Fibromyalgia and some Arthritis in my hands.. Dr Delafield has given me meds, prescriptions for a disability tag on my vehicle, and a power scooter.

    You need to be believed... once you seen a doctor who knows what they are doing in this area.. you will drive anywhere to see him again.

    Good Luck..