Checking out doctor number 6 in seven months. Is this a record?

General
1

I’m getting very tired of filling out all the paperwork that it takes when you go and see a new doctor. Saw a rheumatologist in August and thankfully he left the practice soon after I saw him and received a 5 page write up about fibromyalgia. Didn’t get the chance to fire him, but did email him and let him know I would hope he would reassess his people skills in his new practice. Two sleep doctors came and went rather quickly - they just didn’t get how our brains work and fight the typical sleep patterns of Fibro. First pain management doc was a quack and was fired after 3 appts. when she told me I was probably going to be one if those people who have to go to Mayo’s. Second pain management doc took 2 months to see and the first thing she says to me is " so what do you want me to help you with?" WHAT? I listened and was open to her, but didn’t feel like I needed another MRI of my neck, a back X-ray in flexion and a vit d test. Did them all ($$$$) and filled the script for doxepin 25 mg. - again, going to work on the sleep and then the pain :(. After 4 days the med was irritating my stomach really bad. Called, 3 different days and only talked to a nurse. I was told that I should stop the med and she would see me at my next appt. April 1 !!! WTF??? Talk about a kiss off - she just lost a patient! Research for two days quizzing doctor office receptionists and nurses to find someone who knows what they are doing - I had time to do this because I had to take off work cuz I was in no condition to be working. I even called my back doctor who referred me to her and guess what? SHE called me back the same day and was not happy that I was being treated that way. She was going to talk to her as I shouldn’t have to wait for 2 months to get some sleep. That was 2 days ago and still nothing.

So I found another doctor who will probably think I’m crazy - I grilled his nurse with more than 20 questions which I’m sure she’ll have already noted on my chart to be.

Am I the only one who is having this much trouble finding someone who knows what their talking about and will take the time to listen to what we have to say? How many doctors dies it take to find the ONE??? I’m so tired of all this and am ready to give up. Doing this all with no sleep and nothing for pain - I’m ready to hit the ER.

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Hey Sandy, sorry you’re having such a hard time just trying to find a doctor who can help you. I know my GP who is a real sweetheart, who has gone through a lot with me, was quick to refer me to a Fibromyalgia and pain management clinic I told her about. It was pretty obvious that she and many other doctors don’t know how to treat fibro. I think that’s fair, as long as they refer it us to someone who can help. IN my province less than 1% of the population has fibromyalgia, or at least have been reported as having fibro. A few clinics similar to the one in my home town are starting to specialize in fibro. I’m excited but rather cautious about this referral and expect it will take a few months to get in. If emergency docs can help you get through this perhaps you should head there. Don’t know what your medical is like.
Since I have been to a multitude of doctors over the last few years, I keep a current list of my meds, surgeries, medical conditions, and medical contacts, print one out before I go to a new doctor answer the questions I have to on their new patient form, and refer to the document I brought and then have the nurse attach it to the form. It saves filling out the same information time after time plus they can always read it. My GP also likes to review my meds at every appointment.
I hope your new doctor, does understand your health conditions and can provide you with some relief as soon as possible. Gentle hugs

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Hey Sandi, man I am sorry to hear your having such a hard time getting the help you need. This is just crazy. With so many people dealing with Fibromyalgia you would think more doctors out there treated it. I will keep praying for you in the hopes that you will find help quickly. your friend Sue

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Dear Sandi,

I know your frustration, know it by heart, have been on the same quest, though I had the good fortune to start with a good Internist and Chiropractor, who were on my side, who after years were finally looking some place besides the car accident, but it took them years to get there.

I kept telling them it felt like my bones were broken!!!

Not having Psoriasis made it hard to figure that I had Psoriatic Arthritis, and a blood tests only shows for about 25% of the people who actually do have autoimmune diseases, and even then, in my case were taken at least a half dozen times before Sjogren's showed up on the bloods even as a false positive, my Internist did not give up testing until it did show up positive. I am so fortunate, he is 5 minutes away, almost always sees me the day I should ever need him for something important that turns up, and he always sent me to the top Drs at Hopkins and Univ of MD. It's all about getting to the right Dr in the right field. And with most of us Rheumatology is the field, though some also need neurolotists, digestive specialists, allergy specialists, Endochronologists, it's such a complicated, condition with so many areas involved.

So it's having your home base covered by a good Primary care Physician, and the specialist, and I will always think anyone with fibro should be seen by a Rheumatologist, and my Internist also insists I continue with him as well.

The first Rheumatologist looked me over and looked at everything but my private areas, asked all kinds of questions, and was as nice as she could be, and had no clue, it was my current Rhuem, a quiet, kind, and humble master who got me diagnosed and started treatment right away. He found places on me that were arthritic that I never even noticed. Why? Because the back pain is so staggering it's hard to notice my left knee, ankle, foot are joint damaged, bone spurs, swollen, he caught it all. My Internist knew about the rib problem, just never put he medical term to it, but was careful enough to send me for a stress test.

My Rheumatologist told me that current average time it takes for a diagnosis is 7 years, until recently it was 35 years, he said people suffered beyond words, and even with a diagnosis had no real effective meds. He said that Phil Michelson's Enbrel commercials really did a lot for making this disease known and diagnosed.

I really do wish you were not so far from me, I wish you could see my Drs, I just feel sure they could help you, but I'm in MD, my Rheumatologist is in WV, and you're in Wisconsin. You had mentioned a University hospital or mayo, are you still considering this? My husband was ready to pack us up and travel to the nearest Mayo if my current Rheumatologist was no help, but thankfully he was, though my Internist said well try this one, good things are said about him, if this doesn't work we'll try Rheumatology at Hopkins and Univ of MD since I had already been there to see the Asst Prof of Surgery at both and Asst Prof of pain management at Hopkins.

I know this is a long story, one you may have been told before, the thing is to NOT GIVE UP!! I know your back must be excruciating, your sleep next to impossible, but you will find your Dr and the answers, and the solutions.

I always send my best, hope to hear some good news from you very, very soon!

Love and hugs,

SK

BTW, I had to fill out a detailed questionnaire and went to my Internist and he helped me, I also wrote a letter explaining all I had been through and I BEGGED him to see me! I really did, as he decides if he will see you or not. He is that busy, as he is also Asst Prof at Univ of WV. That little hospital in Martinsburg, WV is in the process of becoming a teaching hospital!

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Hi Sandi, you sound so much like me. That is so BS you are going through this. I saw my doctor yesterday and I had a heart to heart with her shall I say. I was discussing my pain level with her and I got the feeling and the looks that I have received from other doctors. I happen to know her mother has MS so I took advantage and brought this up. I had to actually remind her of all my spinal problems and everything I have tried which is PT, neck and spinal Traction, injections which only work for me for about a month, plus all the Fibro meds. I asked her how she thought my pain differed from MS, OR someone who has cancer pain? Well she tried to pull the ole cancer patients are mostly terminal so they really need their pain control. I stayed very calm, and then asked her why I didn't deserve the same treatment. I then explained that while we Fibro's are not terminal, we have a great deal of pain and should and deserve to have it treated. I also said that I understood some doctors reservations on pain meds, how much pressure doctors were under not to subscribe them. She was complaining to me about having to do pill counts on pts. That use them. I listened but I also told her I have been your pt for 3 years and she knows me by now and knows I don't abuse my meds. I also said that I thought it was a shame that some doctors looked the other way when they should be working together with their pts. I stand up for my self but try to do it in a round about way. I really empathize with you Sandi and hope you find someone soon. Hugs, Leanne

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No, Sandi, you aren't alone. I'm sorry you got 5 bum doctors who haven't been able to help you. I'm starting suspect that their IS no help for fibro and the docs know this. I can't count the number of times I've left a doctor's office no better off than when I went in, with no answers to the fibro mystery. Now I'm supposed to get on a gluten free diet and do exercise. I'm not impressed with these concepts, since no one has proved that fibro improves with either. I've only ended up worse after doing PT, so what the heck, why am I signed up for yet MORE Physical Torture? Why are we going to doctors? Why don't they just do tests to rule out other illnesses, then give us some good pain meds? If they can't cure us and don't know how to help us, instead of just mucking around, why not just give us good pain meds?

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A standing ovation for you in your monologue about how our pain shouldn't be treated any less than the pain of a cancer patient. You should print those words out, copy them onto a bunch of certificates, then hand out one each time you see a new doctor. So thanks for advocating for all of us who are in pain but aren't getting the pain relief we deserve.

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Thanks for lifting my spirits some. I just don’t understand how doctors can be so crass about a persons health. I guess they just have so many patients they can do that. Losing one who needs help desperately - doesn’t seem to do anything to their consciousness. It really irks me.

I’m waiting to hear the results of my back X-ray and my neck MRI - wonder if I’ll be able to get the results and a disc if them by just going to the hospital and requesting them. Figure I should have whatever for the next doctor if I need them. Think I’ll call the hospital tomorrow. I was able to get an appt. with the new doctor for Tuesday morning already (made it Friday) but am going to postpone a week do they can send me the paperwork to fill out when I’m not flaring and in a fog like I’ve been for the last 5 days. Having only a half hour to fill out history, etc. as you all know will not be enough.

I’m so sick of being in pain and have nothing to lessen it but hydrocodone for my back. Leanne - you are so right in our right to have our pain lessened just as much as any other ill person. Don’t we have the right to be PAINFREE and live?!?!

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Hey Sandi,

I know EXACTLY how you feel. I've gotten stuck in this huge conglomerate of doctors-they boast over 300 in the practice-and they shuffle me from specialist to specialist. The worst thing is, every single time they make me fill out all the paperwork! I don't know why, it's all in the computer from the doctor the week before, I am so sick of it.

I found a Rheumatologist that I 'maybe' liked, only because he was a nicer guy than anyone else I've had to see lately--but he didn't acknowledge my Fibro, just wanted to start with autoimmune blood tests and then go from there. That kind of worried me, but I was willing to give him the benefit of the doubt for now. Then he told me at this first visit he was leaving the practice in a month! So why even see new patients if they are only going to have to start over with a different doctor! My primary doctor isn't with this practice, and he just farms me out to someone else, so he's no help.

I have pretty serious herniations in my neck, and I have MRI's that say that for the past 4 years. I also have herniations in my low back, and developed scoliosis over the past 2 years. It's REALLY obvious. I saw a spine specialist in this big practice--he came in the room, wouldn't let me talk-he just kept saying I was interrupting him. He told me he looked up my MRI results from 2010 on the hospital computer before he came in, and there is absolutely nothing wrong with my spine. There I sat, freezing in a medical gown holding a stack of MRI films, and not once did he touch me, look at my results I had with me (which were newer than he saw) or even have me stand up to show him my spine. He actually refused to look, told me he already found everything he needed to on that old MRI. QUACK QUACK !! Condescending snot-nosed kid. Sorry, I can't stand to be talked down to!

Several more doctors along the same vein, and I FINALLY got some answers a couple of weeks ago. My Podiatrist solved a lot of things within 5 minutes of seeing me. She told me that one leg was quite a bit shorter than the other from surgical repair of a broken bone in 2009 (which all the other doctors denied can happen, because I asked)--- it threw my back totally out of alignment. Also I have severe swelling in my legs that for years all my doctors have said 'sometimes people just have it' ... she diagnosed me and set me up with a therapist to fix it.

With the exception of my Podiatrist, every single one of them has told me I just need to go to pain management. Not once did I ask for drugs -- i'm actually allergic to all opiates -- or complain that I was only there because of pain. Each time I was there to find out WHAT was wrong, and how to fix it.

Do all the doctors get a kick-back from the pain management guys maybe? This whole thing has disgusted me to the point that I cancelled almost all of the followup appointments. I need to clear my head and regroup, then find doctors somewhere else to start again. So you definitely are not the only one dealing with idiots!

Hugs-
Renie♥

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Sandi, just call the Radiology department at the hospital. They'll have them ready for you to pick up.

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I hear ya loud and clear! Ended up getting a call back the same day I requested my reports from MRI and X-rays stating doc #5 would see me the next day instead of waiting until April. Appt. was totally different from the first one - she actually asked my opinion and included me in decisions. I also let her know my dissatisfaction with her nursing staff and their dismissal of patients. So…she asked what sleep med I have taken in the past worked. I said about 3 years ago I was on 3 mg Lunesta and I was at least able to sleep - not hood sleep but I at least wasnt totally mind drained. So been trying it for a little over a week. Also am going to try a low dose lyrica and see how I handle it. I am to call her and let her know how the sleep is.

I just do happened to have an appt. with my TMJ doc on Tuesday and she gave me a name of a pulmonary doctor who specializes in sleep. She feels that a pill won’t help me long term, and I agree. So I’m off to see another wizard! I feel that I’m getting a tad more sleep, but not good sleep. I’m not liking this Wisconsin weather. Every week we are getting 1-2 snowstorms and my body just screams a day or two before one and during. So been using up sick time like crazy.

I often wonder what other conditions get treated like this. Mental health patients? Are they getting the brush off like us and instead of suffering and doc shopping they just go out and shoot up places? And many of us don’t have insurance and can’t afford to keep wasting precious money on these indifferent medical professionals. I’ll keep hanging in there with the rest of us!

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I think you're right - the people that are shooting up these places are labeled as 'mental health patients'... but who knows how they got to the point of mass murder, how much help they were denied before they finally lost it? I can absolutely see that happening.

I'm so happy you found someone who LISTENS, and will work with you instead of just talking AT you. At this point, I don't think I even care whether they are a good doctor, I just want them to listen to me !!!!

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What a perfect description, feeling at the mercy of the world! For many years, I was the office manager for my Primary/Rheumatologist, so I had him available to me at all times. Working there defintely had it's perks... I just got his approval and wrote my own insurance referrals, called in my refills, copied my own records. Since I quit and we had a falling-out, I am stuck with going to a new doctor that I don't know, and I have to call them for every little thing instead of being able to take care of it myself. I always feel like I am "bothering" them, especially because of the many referrals I've needed lately, and the girls are not the friendliest, so I feel like I'm at their mercy too. I was definitely spoiled, I guess!

All these new doctors, and none of them have done anything to help me other than push me off to another specialist. It's so frustrating!

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That’s so true! Just someone who’ll listen. She wasn’t like that at our first appt. it took a talking to her from my back doctor who I called and told about her actions and she was appalled that a dr. would treat anyone that way. They are all in the pain management dept. at one if the local hospitals. I wish my back doctor could treat me, but she specializes in more of the injections, RFA and nerve blocks of PM. So the only reason I’m still seeking a doctor is to find help with sleep. If he can’t help me I think I’m going to have to use up my sick time and go on long term disability. Not what I want to do, but I can’t do a good job this way. Can’t run to the bathroom crying because I’m so frustrated and can’t remember things. Everyday is a struggle and God and my family are what is keeping me striving to find the old me again! I miss her.

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She's there Sandy, maybe not quite the same, but hopefully you will find a Dr who is a healer and interested in helping you find a way to have a better quality of life, and if you cannot sleep, you don't have much of a chance.

I have used truckloads of supplements and natural things, but it was little help, I'm in the big guns category, probably for life, but it works!

With my back, it's Morphine and Valium that has finally worked for me, I can sleep, well usually, it has to be taken 2 hours apart, and it usually does the trick.

They could never get me numb at pain management, or gave me enough time to get numb, so it's a wonder I don't have those long needles broken off inside all through me as I would jump off the table when these needles hit the spinal nerve root! In the end, it only made me worse, so the new MRI's will be taken Tuesday and we will talk about the stenosis in the lumbar, and the 'hump' at the top of my spine that the Rheum is calling cervical Radiculopathy.

All a product of Psoriatic arthritis, Sjogren's and injury!

Back pain is just the worst! I feel for you sister! Hang in there, there is a Doctor out there for you! I know it!

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Hi Sandi, I have been following the discussion and have to say I wish I could print it out and sent it to the AMA, I’m actually going to give my dr. A hug and tell her how awful most dr’s are when it comes to fibro. I wish I could share my dr with you, she is such a gem, thank god she has known me way before my fibro, so when this all came up she really listened, and she actually knows more about fibro, than any dr. Or specialist I have seen. I thank god for that !! But like everyone I have gone to many specialist… Looking for more ans. treatment options, what ever, and the treatment is just awful !!! I still need to find the right rheumy, not because my dr can’t order blood or prescribe meds, but more for disability, they want to see a specialist diagnosis. You have to keep looking, the frustration is crazy, but I have learned to just cross off the quacks, and nut jobs and keep looking !!! It is so hard when all you can do for the day is go to the dr. Who wants to use one of our spoons on those retards that don’t give a crap !!!

I’m so sorry your having such a hard time !! Sleep is so important for us,
If they would just figure this out, we wouldn’t have to go on disability, I know what you are going through, trying to keep your job and manage this…Ugh

Sending you a big hug and lots of good ZZZZZ

Hang in there

Blessings

dee