All I want to to right now is run away deep into the woods where there's a nice cabin and SOLITUDE. I don't want to see another darn hospital unless I'm a there as a medical student (one can dream...) I'm in horrible amounts of pain right now -- something is going on with my back, I had to go to the ER for it and prednisone, prescribed for medication induced temporary adrenal insufficiency which is unrelated, seems to help it. I got percocet and flexeril when I went a week and a half ago. That's when I found out that my almost complete lack of appetite and near constant nausea is probably caused by pain. For 6 days I could actually EAT. I could want and truly enjoy food I was eating. No more making food and then only being able to have one bite. More importantly, I could function somewhat normally. Still in bed or on the couch most of the time, but I was getting up more, doing some light gardening, able to actually clean things and get things done! I could focus enough to get my mother-in-law's bills sorted out and paid, but I will admit, that was still pretty hard to do. Anyway, since I only had 5 days worth of the percocet, I went back home to see my primary doc. He said exactly what I expected: fibromyalgia, can't do anything about it. What a cop out. At that point I had become so sick and tired of being sick and in so much pain that I actually yelled at him. And he told me that I needed to see a psychiatrist; minimizing everything I have gone through the past 15 months down to being a psychiatric issue that could be solved with therapy. I'm actually looking for a therapist right now because I need to continue therapy for PTSD, so I'm definitely not anti-psych... But to go that low...
I guess it was so devastating to me because I thought your PCP was supposed to be the one that has your back. I mean, I spent 3 years with my doctor. He saw me at my peak health and saw me deteriorate... How can you just blindly follow what some intern decided was wrong with me. Not to mention I happily accept psych evals when I'm in the hospital, and the evaluator always remarks on how pleasant and stable I am, and seem mentally healty... And that intern still said I was just crazy. They also denied me pain relief when I told them over and over, I didn't want narcotics, I just want something that works. So, they also assumed I was drug seeking. (I ended up finally getting Lyrica prescribed by a physician who was filling in when my team had the day off. It was a 5 minute conversation where I described the pain and associated symptoms, they said it sounded like nerve pain, so why don't we try this drug. And voila! It worked!) I don't know about you, but I don't think it's wise to trust a physicians judgment if they're profiling patients like that. That was over a year ago, and it's set me back so far... Finding specialists who will take me seriously despite the fact that I still don't have a diagnosis like is searching for a needle in a haystack. And having just lost my PCP, I'm terrified to find another one. I don't want to go through that again.
How do you push through when it feels like every doctor you go to just puts another obstacle between you and diagnosis?
Hi LMidg, I am so sorry to hear of your struggles. Unfortunately there is no magic answer for you regarding how doctors have treated you. Some people, regardless of their profession, have no compassion and I am sorry they made you feel so bad about how you are feeling. The only suggestion I have is to keep trying to find doctors that will take you seriously. I would also keep a journal of how you are feeling so you can share that with your physician. Keep your chin up. Don't give up searching. You deserve to be listened to and helped.
Sending you hugs,
Lisa
LMidg, I'm sorry you had that feeling of being dismissed and disbelieved. Is is possible your PCP recommended a psych not because he thinks "it is all in your head" but because he may know that SSRIs can be effective in reducing fibro-related symptoms? And have you really lost your PCP? Did he tell you not to return?
However, perhaps the doc did make it all too clear that you were not believed. If so, I am very sorry, and agree it is time to go doc shopping. If Lyrica has worked for you in the past, be sure to bring that up with the new doc.
Some tips to help makes yourself heard at your next appointment: Bring backup. As elfin said, bring a journal of symptoms, their severity and duration. Be as calm as possible during the appointment. Tell the specific activities that you are unable to do because of your illness.
Can our members help you get an understanding doc? Perhaps try posting a discussion to ask for recommendations in your area. I hope we can help.
I was once told “you look too good to be sick” by an supposedly good rheumatologist. I asked my primary/family dr for another rheum referral. He ended up diagnosing me. Try to find another rheum. You need someone who will take you seriously.
It sounds simple enough to be our own best advocate, but in truth it is terribly difficult and hard. We have to come toe-to-toe with people we have been taught all our lives are the EXPERTS. Unfortunately, life isn't gentle to doctors who make mistakes or who admit to not knowing, and so they bluff their way through things they aren't sure about or are completely out of their depth with.
I find talking to doctors hard. I am naturally intimidated by them. For me, it's kinda like the clumsy, love-stricken boy around a pretty girl. I lose all my brains and become cowed. It's hard to keep going back and attempting to communicate clearly when I feel like that! But I do try my best. My current doctors (or at least most of them) are reasonably good at listening when I have all my brains together, but if I'm not prepared for something, I end up sounding foolish and ignorant. Not fun.
That's part of why all the suggestions given thus far are so helpful and applicable. Writing things down ahead of time is vital. I HAVE to write down the things I want to discuss with the doc, or I will forget. I also always take with my my pain journal, so I can (try to) have something to refer to concerning my recent health. I take my husband, which helps me be sure I will understand and properly remember what the doc said. I recently even had typed up something I wanted to explain and handed it to him, so that he could READ what I wanted to communicate, since I failed at expressing it verbally.
That being said, if I have a doctor who doesn't listen (or clearly has NO IDEA of what's going on), I am not afraid to drop them like a hot potato. I don't need that kind of nonsense. I just dropped an OBGYN after a second appointment due to the idiotic things she was telling me. (She told me that atop the long-term prednisone dose I was taking, my body was producing three and four times as much because I was stressing so badly. Uh... lady... if that was so, I wouldn't have to worry about MISSING my prednisone dose, and my rheumy wouldn't warn me to go to the hospital if I missed more than two days worth! UGH!) I don't appreciate doctors pretending they understand lupus and then saying things that clearly reveal their ignorance. I don't expect them to have all the answers, I just want them to work with me (and my other docs) to resolve whatever issue I'm seeing them for.
But I understand about not having the oomph to keep looking. I'm sort of avoiding finding a new OBGYN to deal with my hormone issue, cause I hate doc hunting. I hate trying them out, paying them money, and then discovering I'm wasting said money. But we plug on, because we must. I have been using the internet to do some background research on docs, to see what their patients say about them, to learn what their background is. It helps some in picking doctors, as that's how I found my excellent rheumy. So keep your chin up, hang in there, and we'll be right here to listen and feel for you as you struggle. (And I'm sure a lot of us will be struggling right there with you too!)
Thanks for all the replies, they're very helpful! Unfortunately, I haven't had a chance to respond because of what feels like a flare, a cold, and I'm also recovering from a 3 day conference I went to last weekend. I'll get around to it today or tomorrow, probably.
Unfortunately, he made it pretty clear that he thinks my symptoms are of psychological origin and can't have an organic cause. I have an appointment with a new doc in July. Hopefully I can convince them that I'm not making all this up.
The onset of my neuro issues also coincided with an episode of depression which was treated with an SSRI, and is currently pretty well managed. I'm on twice as much as I've used to treat depression in the past and it did absolutely nothing for my pain... Not necessarily an indicator that I don't have fibro since not everyone with the syndrome responds to SSRIs, but with not having enough tender points, responding so well to prednisone, etc. I really don't trust that diagnosis right now.
I've been getting one of my friends to come with me to every appointment, in part because POTS and back pain make it difficult for me to get around even in a wheelchair, and to help keep me calm and make sure I don't miss anything. That's become a lot more important recently since I'm having a harder time articulating my thoughts, especially when under stress. I used to be able to communicate with doctors very clearly and confidently, now I feel a lot like Talencia -- I'm almost dumbfounded when it comes to talking to my physicians.
Madere (dancermom) said:
LMidg, I'm sorry you had that feeling of being dismissed and disbelieved. Is is possible your PCP recommended a psych not because he thinks "it is all in your head" but because he may know that SSRIs can be effective in reducing fibro-related symptoms? And have you really lost your PCP? Did he tell you not to return?
However, perhaps the doc did make it all too clear that you were not believed. If so, I am very sorry, and agree it is time to go doc shopping. If Lyrica has worked for you in the past, be sure to bring that up with the new doc.
Some tips to help makes yourself heard at your next appointment: Bring backup. As elfin said, bring a journal of symptoms, their severity and duration. Be as calm as possible during the appointment. Tell the specific activities that you are unable to do because of your illness.
Can our members help you get an understanding doc? Perhaps try posting a discussion to ask for recommendations in your area. I hope we can help.
Sorry to hear about that awful OBGYN. I wish no one would have to deal with that.
I definitely need to start bringing written lists with me to appointments. I've been forgetting to bring things up at my appointments and end up having to go back in again to have things looked at. I'm absolutely terrible at keeping a journal... I keep trying and forgetting and giving up on it. Tremors make it so I can't read my own handwriting, so a pen and paper journal doesn't work. I've been really inconsistent with my online journal even though I've made it easily accessible through both my laptop and phone. Any advice on how to make that more of a habit?
Try not to put off finding a new OBGYN for too long. After having the conversion disorder label slapped on me, I was actually terrified of seeing a neuro for a few months, and then I put it off even longer because I was afraid they would think I was stupid for having put it off for so long, or would've assumed that I must not have been so sick if I was "able" to put it off. I did finally make an appointment about a month ago, so I really hope it goes well. Anyway, I really hope you're able to find a competent OBGYN!
Talencia said:
It sounds simple enough to be our own best advocate, but in truth it is terribly difficult and hard. We have to come toe-to-toe with people we have been taught all our lives are the EXPERTS. Unfortunately, life isn't gentle to doctors who make mistakes or who admit to not knowing, and so they bluff their way through things they aren't sure about or are completely out of their depth with.
I find talking to doctors hard. I am naturally intimidated by them. For me, it's kinda like the clumsy, love-stricken boy around a pretty girl. I lose all my brains and become cowed. It's hard to keep going back and attempting to communicate clearly when I feel like that! But I do try my best. My current doctors (or at least most of them) are reasonably good at listening when I have all my brains together, but if I'm not prepared for something, I end up sounding foolish and ignorant. Not fun.
That's part of why all the suggestions given thus far are so helpful and applicable. Writing things down ahead of time is vital. I HAVE to write down the things I want to discuss with the doc, or I will forget. I also always take with my my pain journal, so I can (try to) have something to refer to concerning my recent health. I take my husband, which helps me be sure I will understand and properly remember what the doc said. I recently even had typed up something I wanted to explain and handed it to him, so that he could READ what I wanted to communicate, since I failed at expressing it verbally.
That being said, if I have a doctor who doesn't listen (or clearly has NO IDEA of what's going on), I am not afraid to drop them like a hot potato. I don't need that kind of nonsense. I just dropped an OBGYN after a second appointment due to the idiotic things she was telling me. (She told me that atop the long-term prednisone dose I was taking, my body was producing three and four times as much because I was stressing so badly. Uh... lady... if that was so, I wouldn't have to worry about MISSING my prednisone dose, and my rheumy wouldn't warn me to go to the hospital if I missed more than two days worth! UGH!) I don't appreciate doctors pretending they understand lupus and then saying things that clearly reveal their ignorance. I don't expect them to have all the answers, I just want them to work with me (and my other docs) to resolve whatever issue I'm seeing them for.
But I understand about not having the oomph to keep looking. I'm sort of avoiding finding a new OBGYN to deal with my hormone issue, cause I hate doc hunting. I hate trying them out, paying them money, and then discovering I'm wasting said money. But we plug on, because we must. I have been using the internet to do some background research on docs, to see what their patients say about them, to learn what their background is. It helps some in picking doctors, as that's how I found my excellent rheumy. So keep your chin up, hang in there, and we'll be right here to listen and feel for you as you struggle. (And I'm sure a lot of us will be struggling right there with you too!)
I know how you feel..I just posted something not too long ago about how fed up I am with our "advanced medical system." The truth is until someone does get sick...really sick regardless of "proof" we don't realize how inept doctors are at treating things. We take for granite that going to the doctor means you are going to feel better then you get a chronic illness where things are a little more complicated and we realize doctors are not all knowing Gods.
I use to complain about this all the time to my boyfriend until he got sick of it and actually said he was going to call some doctors and talk to them. I just laughed! Ha, good luck with that. Doctors don't talk to you when they treat you so if you think you can randomly call some doctor in the yellow pages and ask him/her to explain a disease and medication info then you're crazy! Well, he quickly found that out for himself.
Also, I know this is kind of unrelated but I use to work as a Vet assistant and remember how often animals would come in and the arrogant Vets who put on such a confident front in the office, as soon as they shut the door would say I don't have a clue what is wrong...
Also, I've created a sheet to bring with me to each doctor's appointment because I try to keep a journal too but often slack...you don't feel well it's really the bottom line that makes it hard. If you would like the sheet I can send it to you. I find even if I don't track symptoms, right before the doctor's appointment I usually think of the top things that are really bothering me so at least if I write those down that helps to not forget or forget what the doctor said.
Yes!! What you wrote is all too true. The current culture of medicine too often ignores the uncertainty involved in the practice. Textbook medicine clearly does not work for those of us whose bodies don't fit neatly into all the boxes, yet are obviously in poor health. Some of the new generation of physicians are embracing this fact, and I really hope that more continue to do so... In the meantime, we're stuck going from doctor to doctor, searching for someone who has the brains to realise that chronic illness doesn't follow all the rules.
It would be wonderful if you could send me a copy of the sheet you use. :)
MT411 said:
I know how you feel..I just posted something not too long ago about how fed up I am with our "advanced medical system." The truth is until someone does get sick...really sick regardless of "proof" we don't realize how inept doctors are at treating things. We take for granite that going to the doctor means you are going to feel better then you get a chronic illness where things are a little more complicated and we realize doctors are not all knowing Gods.
I use to complain about this all the time to my boyfriend until he got sick of it and actually said he was going to call some doctors and talk to them. I just laughed! Ha, good luck with that. Doctors don't talk to you when they treat you so if you think you can randomly call some doctor in the yellow pages and ask him/her to explain a disease and medication info then you're crazy! Well, he quickly found that out for himself.
Also, I know this is kind of unrelated but I use to work as a Vet assistant and remember how often animals would come in and the arrogant Vets who put on such a confident front in the office, as soon as they shut the door would say I don't have a clue what is wrong...
Number one rule! “Don’t think they have ALL the answers!” Chronic diseases are lifelong and complicated! I totally understand what you are say but until I gir that in my head I was driving myself mad! I remember going go to the doctor feeling like I had no rights because it felt as if I was the problem… The reason I was not getting better. Keep in mind WE really educate them by the reporting of our symptoms. Example: I’ve been have hot flashes for the last few years. I thought I was in menopause but my doctor said my hormone levels were fine. I mentioned it to my doctor who treats my lupus and RA and they didn’t feel like it was related to those. After suffering for years I ran across sites that have discussions were people with lupus is experiencing the same thing. Mine does not start until the summer I notice this year. Keep your head up and speak up regardless but know they don’t always have all the answers concerning Chronic disease.
So sorry it took so long to reply. For some reason I was not receiving updates in my email for this discussion post. I attached the Doctor Appointment Sheet below. It's very basic but I hope it helps, and hope you are doing well :)
LMidg said:
22-DoctorAppointmentAgendaSheet.docx (13.2 KB)Yes!! What you wrote is all too true. The current culture of medicine too often ignores the uncertainty involved in the practice. Textbook medicine clearly does not work for those of us whose bodies don't fit neatly into all the boxes, yet are obviously in poor health. Some of the new generation of physicians are embracing this fact, and I really hope that more continue to do so... In the meantime, we're stuck going from doctor to doctor, searching for someone who has the brains to realise that chronic illness doesn't follow all the rules.
It would be wonderful if you could send me a copy of the sheet you use. :)
MT411 said:I know how you feel..I just posted something not too long ago about how fed up I am with our "advanced medical system." The truth is until someone does get sick...really sick regardless of "proof" we don't realize how inept doctors are at treating things. We take for granite that going to the doctor means you are going to feel better then you get a chronic illness where things are a little more complicated and we realize doctors are not all knowing Gods.
I use to complain about this all the time to my boyfriend until he got sick of it and actually said he was going to call some doctors and talk to them. I just laughed! Ha, good luck with that. Doctors don't talk to you when they treat you so if you think you can randomly call some doctor in the yellow pages and ask him/her to explain a disease and medication info then you're crazy! Well, he quickly found that out for himself.
Also, I know this is kind of unrelated but I use to work as a Vet assistant and remember how often animals would come in and the arrogant Vets who put on such a confident front in the office, as soon as they shut the door would say I don't have a clue what is wrong...
Wow and thank you!
Your resident hypochondriac with 4 autoimmune diseases and a laundry list of medical problems.
You got to hold on!
Dancermom makes a good point about SSIs helping out with pain when used in conjunction with Lyrica. They can help sop up some of the extra pain. Nortiptyline, a muscle relaxant, can as well.
Maybe you could ask for a recommendation to a good local doctor from someone on this site, if you decide to go elsewhere? I do find it disturbing when docs tell clients that the pain is all in their head. It's a leftover of the "hysterical woman," stereotype. I don' t know if that was your doctor's reasoning or not but I can understand your concern. YOU DO DESERVE MEANINGFUL PAIN RELIEF!
I agree, doctors are as clueless about what to do as we are. I had a doctors nurse basically tell me to just "meditate" and my pain/headaches would go away.
Our body is like the universe, its complexity is infinite, our understanding is a fraction of a speck in contrast to what we don’t know, and our exploration is just beginning…