Doctors are so frustrating and I don't know what to do!

Hi guys, I am new here. This is my first post, but I am so frustrated, I don't even know what to do with doctors anymore so I need to get some advice.

I've been diagnosed with Lupus for maybe a year and a half now, although was seeking a diagnosis months before I actually got one. I was also diagnosed with Fibromyalgia, and gastrointestinal issues (Eosinophlic esophagitis and GERD) at the same time. Had been previously diagnosed with interstitial cystitis and IBS in past. I am on a steady round of meds- prednisone, cellcept, plaquenil. omeprazole, lyrica, bupropion for some add issues/ocassional depression, adderall for add/ energy to get through the day, as well as occasional muscle relaxers, trazadone for sleep/fibro issues, a couple of painkillers. I think I listed everything there.

So I am a weird case of lupus. My symptoms are LITERALLY textbook, but my labs are all weird. They diagnosed me symptomatically.

I have had the butterfly rash (BAD), muscle/joint aches, extreme fatigue, chills/fevers, excessive protein in urine, etc.

Since diagnosis, I have tried to be a trooper but I don't feel like I have control of what is going on. I always felt like I was just living in a powder keg, and trying really hard not to ignite that spark that was going to burn me down. I knew that pushing it too hard would do it---but I work in a high stakes job, where the hours are often long, the stress is often great, and sometimes there really is no other option than to push yourself to get what you need to get done.

Since diagnosis, I've been hospitalized three times. Last year (April/May) for 9 days (the longest nine days of my life!!) for a very bad kidney infection--was also having heart issues, showing some hydronephrosis on kidney, something about a lung/heart issue, not sure. They two months later in July, was hospitalized for like another 6 or 7 days for a gastrointestinal bug that turned me into complete disorder. Then just recently, about 2-3 weeks ago, I was hospitalized for over a week again, due to another gastrointestinal bug screwing over my immune system.

Now, keep in mind, I do not go to the ER unless I literally feel like I am going to die. I hate hospitals. I know that once they see I have a fever and some/any symptoms and I say the word "lupus" they will admit me -- to avoid any liability issues.

This last illness, I was sick for over two weeks, toughing it out on my own, until I got to the point where I literally could not sip water without throwing it up, and I knew I was severely dehydrated. I seriously think my last hospital visit, although triggered in large part due to a nasty infection of norovirus, was also triggered by a lupus flare. The whole thing started with a bad butterfly rash. I had the worst joint/muscle pain ever.

I was released from the hospital, really before I felt like I was better. I had stopped puking all the time, but immediately got another "infection"-- a sinus infection. And I was miserable. The cold sweats, the muscle and joint pain, the sheer state of brain fog, and feeling of desperation -- like it will never go away.

I got to the point after the release from the hospital that I was soooo sick but did not know what to do. I didn't feel like it was "emergent" warranting a trip back to the hospital, but I couldn't get a hold of my doctors to help me or tell me anything to do.

Specifically, after struggling with the thought of going back to the ER all weekend, I called my Rheumy at the moment her office opened Monday morning, and also my Primary (who I haven't seen in almost 1 1/2 years, since I have been tossed to every other specialist under the sun). My rheumy's nurse told me she would give the message to the doctor, and the doctor would get back to me in 24-48 hours. I told her that was unacceptable--that I needed to know if I could be seen and I felt like it as important. She told me to call my primary, so I called my primary and got an appointment for that afternoon. Literally, when I got to my primary's office to sign in, my Rheumy's office called and said--yes you need to go to your primary.

So I go into my primary. Bring every inch of hospital records, 2 page list of medications, tell him my long saga of story. He looks as me and says "Why are you here?" that not obvious from the long parade of horribles I just told you is going on in my body? He then said "You need to go to your rheumatologist, this is a lupus flare, I haven't the foggiest. You shouldn't be here." I said--SHE TOLD ME TO COME TO YOU!!! He said, well go back to her because I don't know what to do with you. Then, without even examining me -- no listening with stethoscope, or looking at my nose/throat, etc.-- gives me a rx for an antibiotic and says, Here you can try this and see if it helps with your sinus infection, but you have a lupus flare and you need to go see your rheumatologist.

So, at this point I am so pissed off, because I just paid this guy $50 to tell me he wasn't going to even look at me, listen to me, or treat me.

My rheumy's office is in the same building, so I marched downstairs, and landed in a heap in her office in tears, demanding to speak with a nurse. At this point I was so tired, exhausted, sick and CONFUSED that I was quickly becoming desparate at my situation. I said-- look, here's what happened with my primary--you sent me there, he won't treat me told me to come back here, and I don't know what to do. Well, my rheumy was not there--they pawned me off on some other doc I'd never met, who barely spoke to me but said she'd "run some tests". Although I was not happy, because I was essentially ending up back home with no direction as to what to do, I at least felt a little bit better because she was running tests.

And I knew, KNEW, because I felt like Satan's armpit at that moment, that my labs would be atrocious. They had to be, because this was one of the worst lupus moments I had experienced. So...I wait. Two days. Do not hear from doctor. Then call and say--hey I'm having serious issues, can I actually talk to my real doctor and know my lab results? So, the doctor calls me back and says-- your labs are really fine--nothing remarkable at all. You are just having an infection. You'll get over it. You should see your primary. I told her the whole story with that, and could tell she was pissed (I'm not sure if it was directed at me or the primary). She said, no you are not lupus flairing, you have an infection and he should treat it. At this point I tell her--look I'm caught in a medical beaucracy-- I don't know who to go to for whatever weird awful ailment I have. I clearly can't get in touch with your office for DAYS when I am sick, and my primary has basically told me he has no knowledge of lupus--so what do I do?? She said "go to your primary if something like this happens." I'm now like, Okay, yeah right, fat chance. Not going to him again so he can act clueless. I ask her for the names of other primaries who have a good working knowledge of lupus. She gives me the names of a couple.

Now, I have always followed her advice, although sometimes I don't necessarily agree with it. I have gone, diligently, to every doctor she has referred me to-- the gastroenterologist, the dermatologist, the kidney doctor, the urologist, the opthamologist.

I have, at least 1 or 2 doctors appointments every month, and on top of that, extra outpatient lab testing, etc.

I'm now at the point where I feel like I've lost the fight. I've been off work for approximately a month now. I have pretty much resigned myself to the fact that I am going to have to quit, or make serious changes in my schedule--but don't know if that is possible, either. My husband and I are seriously considering trying for disability for me at this point, which I am so frustrated about. You see, I am in a professional career. I have always been the type-A, overachiever who was at the top of the class and winning awards, etc. I have never let obstacles get in my way of success. I have just had my professional degree a few years now, and I want to be able to do something with it, obviously. But then I get this horrible, awful illness that is knocking me down at every step. I am certainly not the type of person to cower easily and admit defeat, but it has gotten more than I can handle and I do not have the support I need to get through.

To top it all off, my "professional" degree is in a field that requires great analysis, research, writing etc. I was in the middle of a HUGE important project when I got sick, that I have had to literally scrounge every scrap of strength to do. How do I write a brilliant, complicated analysis when I have so much brain fog that I can barely even tell you my own name? I have these headaches that are so ridiculously horrible (which I think are side effects of my other medication) and was out of my heachache meds that my Rheumy prescribed in the first instance. I have been trying, unsuccesfully for THREE WEEKS to get it filled. Three weeks! And the headache med is not a controlled presciption needing a written rx, it is fioricet. So finally, last night, I get the headache med. I had been prescribed it for almost a year, and had like 5 refills on it or so, so it's not like I was overusing it. The nurse from my rheumy's office called and left a message on my phone saying "we refilled your prescription ONE time, but we won't refill it again, you need to go to your primary care doctor to get it refilled." Um, WHAT?

So I'm just supposed to stroll in to some new random primary's office. "Hi, I'm *WonderfulWorld*, you don't know me. I have a shitty, complicated medical history. My last primary was so stumped by me he said 'he hadn't the foggiest' and my rheumy won't prescribe me the headache meds that she herself first prescribed to me, so even though you don't know me and I'm not otherwise acutely ill so as to require your care right now, what I need you to do is to prescribe me this pain/headache medicine that for whatever reason my rheumatologist has decided that she will no longer fill for me herself. THANKS!"

Yeah, I see that conversation going well.

I don't know what to do. I'm physically and mentally at one of the lowest points I've been in this illness because I feel like I am just getting worse, not better, and no one will do anything to help me until my lab tests literally show that my organs are exploding inside me. I mean, no one seems to care about the day to day toll this takes on us and the pain, fatigue that is sometimes the worst part of it all. You see, I KNOW when I am sick--it is my body. My lab tests may tell you I am a-okay, but I am NOT. (Conversely, why is it that when I am feeling relatively okay, my lab tests show real problems? Is it just me, or do lab tests not seem to have much correlation to the degree of awfulness that we feel?)

I don't know what to do. My rheumatologist is highly sought after, allegedly one of the best in the state. She's a "best doctor" you know. It takes nine months, LITERALLY, nine months to get into any rheumatologist in the city I live for a first appointment. Trust me, I called every single one when I was first referred. I did see another rheumatologist in town when I was first getting diagnosed, to get a second opinion, and I thought she was lovely, and even much more thorough than my first rheumy, but after I left and she ran labs, I called in a week to check on my labs and got into a real fight with her office staff because they would not release my lab test results or medical records to me, stating that their office policy is that they will not release lab results until the doctor meets with you at your next appointment (1 month later). Basically a blackmail tactic-- you make another appointment or you don't get your lab results. I argued with her about it, but technically under HIPAA they get like 30 days to give you your records, so in a round-about way she could accomplish her same goal legally. I felt like that was not the kind of office I wanted to deal with, because I want to be an active, not passive, participant in my own health care and want to know as soon as possible what is going on in my body-- not have to wait a month to find out.

So now I don't know what to do, where to turn, or how to pull myself out of this flare that seems to be never ending. Am I the only one who has this kind of luck, or is this pretty typical of what we lupus patients can expect?

Does anyone have any suggestions about what to do/ where to do from here?? Honestly the stress of dealing with all the inept doctors and pharmacies on top of the regular stress we have from dealing with a chronic illness is enough to make anyone feel lost and frustrated!

"I feel you" as the kids say. And I feel for you. We're all sorry that we collectivlely sometimes have to go through this rotten mess. Autoimmune diseases can make us feel lost and frustrated.

This is me 15 years ago. Around and around and around. I had two years of this with everyone treating me like a mental case (some other members have taken longer). Then, on two occasions I went to the ER with 102 fever. They paid attention. Yikes! Why did I have ER doctors diagnose my autoimmune diseases!? Shouldn't have been like this.

It took 3 rheumys before I found one I could work with. When she was on the road to retiring and she bungled my care while I was suffering a broken back and severe osteoporosis and severe lung disease.

Ask the nurses who the best docs are. I had a friend that worked for the HMO and she helped me. My psych commented that I literally had the best docs in the HMO (I include him). Docs is the key word here. They all can stir the pot and be very goofy.

An infection is not a lupus flare. It's because of the meds that we take and the autoimmune disease that we get frequent infections. I wait every month for the next infection. January a leg wound infection; Feb, March and April a bladder infection a month. All this is my new normal. I probably would have more if I wasn't so careful. I'm so immunosuppressed that my WBCs don't become elevated when I have a severe infection.

They key here is education. Find out as much as you can about your meds, why their prescribed, and how they work for you. Read about the disease down to the nano. Stay with this group and learn. Teri (TEZ 20) can help you with great informative websites.

My normal. I'm not seeking fame, status, and money anymore . . . can't take the stress and exhaustion. I'm less panicky with the docs, but I can put on a great deal when I'm feeling really bad to get their empathy. I have also rented an apartment that allows dogs of which I have 2. I like this life. I don't even have to call a repair man. My pooches are thriving with the extra attention. I still have one car left which is sufficient at the moment. I moved from a wonderful rural home to the city. If it sounds like I'm patting myself on my back, I am. I've adjusted down and it's working. So going on disability sounds like a good idea for you. I still plan to supplement my retirement and SS income, but with what I can handle. Taking adult ed painting class to distract me from my issues.

Hope some of this stuff helps you. We all have are own story sometimes similar and sometimes not. I've learned a whole bunch here. You impacted me to almost write a book. We all could.

Bless you,


Welcome, you’ve come to the right place! I’m right there with you on frustration (I just got “somatization disorder” slapped on my diagnosis list by the neuropsychologist my rheumatologist sent me to for evaluation of neuropsychiatric lupus (NPSLE), with an existing SLE diagnosis last year confirmed by all 3 rheumatologists I’ve seen… So obviously he knows I have a legit multisystem chronic condition that should disqualify me from that psychological diagnosis!) And I also have a more in-depth response to share after I get some sleep…

For now I wanted to congratulate you on a fabulous entrance to our community, you fit right in and we’re happy to do all we can to help! I’m also impressed that you’re the first one I’ve seen write a longer post than me! Well, Ann A. has some good long lessons as well (check out her page, along with Whathappensinvegas; they are other moderators like Tez who have helpful and inspiring posts!)

Look at me, already getting wordy in a brief post! My screen name here is a nickname in portuguese that means I talk a lot :wink: But I must sleep before really getting into a deeper reply. My sleep phase is so delayed as it is and I’m prone to getting caught up and shorting myself even more… I do so much worse when I don’t sleep 8 hrs! Luckily without a job right now I have a better chance of that :wink: )



Breathe. Slow down and breathe : )

I had to make a decision for myself to keep pushing and pushing and or stop and take care of myself. I've filed for disability, and I've been home healing from surgery and its just not fast enough for me. But it is what it is. I try to rush it, believe me. Yesterday I went to a Job Fair, I was feeling good, and it went well. I didn't take my cane, and I walked slow and did the most walking I've done since surgery : ) Afterward, I came home and my husband got some lunch for us and he knew how I was going to feel before I did. He got some ice for my foot and I sat down and elevated it and then covered up with my favorite blanket and my puppies and took a little nap. I was pretty much wiped out for the rest of the day.

My rheumie is pretty cold, and not as helpful, just throws a new pill at me. My GP is much better, and my husband's doctor is an internist at the same practice as my GP and she would see me as well. Perhaps you do need a new Primary doc or one that specializes in internal medicine, and maybe seek a therapist that can help you reduce the stress. Lupus feeds off the stress and worsens your flares.

Welcome! I can get pretty wordy too but I no longer trust doctor referrals. Everytime a doctor refers me to another doctor it is the "good ole boy" referral. Now I check every site possible for regular people ratings for doctors or talk to other people and get their input. Do your own research like you are trained to do. Think about advocating for patients sometime if you go on SSDI as a part time career. My personality gets me worked up to the point that if I were in your shoes I would be making appointments with several specialists to "interview" them to see if they would meet my needs. When you call to make appointments tell them you have several issues and want to get yourself "established". Your first appt will be longer and you can go over everything and see what he or she says would be their course of action. How long does it take to emergency help for instance. What are their thoughts on having meds on hand for emergencies, etc. Also, the support staff can make or break a doctor. The doctors need to know this if it is the staff not cooperating. Are you willing to drive further if necessary for a better doctor or doctors. I am moving 4 hours away from my internist and if necessary I will drive back here to see him because he is that good. We are retired so we have that luxury of doing this option as we all know when we are bad that driving can be rough. REMEMBER that you are the employer!!! We forget this and let doctors get by with thinking they are a god! FIre them!!!! I had to learn that very young when I had a baby that would stop breathing. He is just great now and 38 years old but if I wouldn't have fought for him who knows. It ended up he was allergic to tons of things. I wish you the very best of luck and keep us up to date. I wish I were near you to help you fight. I am a redhead and a Scorpio so I know how to scrap if necessary!!! LOL

Gentle hugs and prayers, Reet

I had similar problems with finding compassionate and competent doctors when I moved to a smaller town. Anyone with any kind of positive reputation wasn't taking new patients. I tried a few but after getting such a high level of care in Los Angeles I despaired. I am not wealthy but I deserve the best care so I signed up with the new "concierge" practice. I am fortunate that I can pay for this new VIP MD service. It's expensive but the peace of mind it brings when a doctor actually returns your calls, you can get same day appointments, and you aren't passed around from specialist to specialist has truly helped me begin to recover from my recent flare.

I totally empathize with you. You expect "regular" people to have no clue about how sick you are and how bad you feel, but when a dr blows you off that is supposed to have training??

I was born 10 weeks premature, so I have health issues since day 1, but they have always been "mild" so I feel like the dr never takes me seriously.

One neurologist I went to actually laughed when he read on my intake paper that I have Cerebral Palsy. why would I make that up? he also had never heard of dysautonomia....he thought I made that up too.

It's so aggravating, I understand. I got to the point that I just stopped going to the dr all together unless they wouldn't refill my meds w/o coming in.

I wish there really were a Dr House, so he could fix all of us!

Don't give up hope...there has to be a good dr somewhere

you are between a rock and a hard place. I am not real sick yet I have SLE. I have a great primary care but he does not know lupus. I'm sure he knows more than he did just because of me. Don't go to an urgent care because they are clueless of anyting other than flu or sore throat. I went to urgent care and my diagnoses started with "I have bed bug bites " ten 10 secnds later went to"" Lupus flair. Then on monday i went to my rheumy and dermotologist. more blood work and biopsys on my legs. it was an antibiotic rhemy is suppose to be the best but i got right in same day i called. All my drs belong to the same hosptal so they have access to all my records which i good. i wish you the best of luck because all the stress is not good for you i think the key is finding the right drs.

i too am fed up with the doctors. I have so many and none of them are ever on the same page. It took 8 doctors to finally diagnose the osteonecrosis in my foot (avascular necrosis) and while waiting on all of that the navicular bone in my foot collapsed and will never heal. I have so many other problem, like you and don't know who to call when something comes up. I have had Type 1 diabetes for over 35 years, coronary artery disease (Quadruple Bypass at age 41 - i'm 55 now), now in congestive heart failure. Had thrombocytopenia many years ago just after the open heart surgery I had my spleen removed due to the extremely low platelet count. i have tested postve for ANA anitibodies for many years but no one ever tested any further. I have anemia due to chronic kidney diseas (Stage 4) so I'm sure I've got Lupus. I'm still waiting on the rheumy to call with the lab results that were done well over 2 weeks ago. I was referred to her by my hematologist who tested and found positve ANA and RNP I think it was. That's why he referred me to the rheumy. I've been feeling like crap. My ankle joints are swollen nnd hurt constantly and I'm so tired and fatiqued I can barely walk. My brain has been so foggy lately and I've had multiple falls where my legs just buckled while I was standing still. I have so many bruises I look like I was hit by a truck.

I know how to advocate for myself but feel like it angers the doctors when I won't go away. We're at their mercy and they know it.

So much for my rant.

Carol in NC

My heart just goes out to you. It sounds like an impossibly frustrating situation. I have, as many here also have, similar experiences with doctors and bureaucracy. I am in a similar situation where my labs are coming back good, but I feel awful. My rheumotologist left the clinic I go to and had to out of the network to see one that had an opening sooner than next September. I'm getting the runaround from him and don't know what to do either.

I'm sure your stressful job isn't helping any. If you could go on disability, it might help alleviate some of the stress. I, too, am a professional and have had to make huge changes in my work life. It has opened other doors, however, and although I would never thank Lupus, it is because of it that I was forced to make changes that I needed to make.

I saw a saying the other day that has helped me: "We were given this life because we are strong enough to live it." I don't know if that helps, but it's sent with good intentions and lots of support.

You didn't mention where you live. There may be someone on here who lives near you and knows the systems..


I can completely relate to you all! I too was a professional. Owned my own medical equipment company. Lupus just took its toll. I sold my company and worked for them and ended up in the worst flare ever about a year later. I am a type A as well and my expectations had to be lowered. Unfortunately. I am now in disability and am trying to heal. I want to work again but just don’t know how or when at this point.

Doctors and their staff are so frustrating these days. No one sees the urgency in anything any more! If I were you I would call around to internal medicine doctors and see if you can find one that is versed in Lupus so they can work with your rheumy or try the rheumy’s that were booked up again to see if they have an opening. If you know any of the good Rheum’s patients sometimes they can talk to the doctor and get you in.

And people wonder why so much is spent in healthcare! If we could have competent doctors and staff it would save us a ton of money!

I hope you can find the care you deserve soon!


Totally feel for you!!! Been there done that literally almost word for word. I finally found a rheumy that cares!! I was also going to a “well renowned rheumy” but all I was basically was a lab rat to her. She was all about the numbers and could care less about my symptoms. I was also caught in that place of go to your rheumy…no go to your primary and back and forth. All I can say is let us know what state you live in and see if we can refer you to a good rheumy. It s worth it!!! I kept the one for the 4 months it took me to get appt with the other so I could at least get the refills I needed. As for the primary I am still experimenting and on the hunt for a good one. I know it sucks!!! But try to just take one thing at a time and ease up on yourself a bit. I wish you well and luck!!!

I am wondering about something. Is there any way that we could team up across the globe and see about starting some sort of campaign to bombard the media with a "revolt" on doctors who don't and won't do their jobs. I mean a well organized, well thought out way to get the public to rally around and make these doctors responsible for their own ineptitude. There are obviously a lot of professional people here that could advise on legality issues, how to do things the right way, and to be heard. Then there are those of us who could do other things. It is pretty sad when some of us have a doctor or two that recognizes how bad some of their own are but have their hands tied as to what they can do. I finally left a couple of incompetent ones and found this great internist who found out who my GP was and told me that he can't believe he is still in practice. I was shocked that he was so forthcoming. He was angry that I had not been helped in so long and immediately started a plan of action and wants to see me often enough to monitor everything. If I need him sooner then I just call and get in within a couple of days.

Hey Reet, that sounds like a great doc!! I sure could use one of those :wink:
I agree with you!! A friend of mine and I were just talking about the fact that it is unbelievable the incompetence and lack of caring that is allowed to go on!!! So far my only outlet has been going to healthgrades com and filling out surveys with the lowest score possible!!! It’s not really a solution but it makes me feel better :wink:

I really do understand how you feel. I have gone to see my Rheumy on several occassions in a flare with pic and visible swelling. The lab work comes back normal. I use meds given (plaquinel, nuronten, and pain pills. None of what I take works anymore. I too am a type-A personality. Stress release for me was a 3-5 mile 3 days a week, spinning class once a week and weights 3 days a week after teaching 5th graders and on weekends. Then my life changed and with lupus and fibro I am confused, fatigued, and not very social anymore. I am blessed I have a great PCP, but my Rhuemy, he was the best of the three I tried. You hang in there, you are your best advicate. You have spunk so talk until someone actually starts listening. Take care.

I’m sorry how you feel but Lupus will effect your work life. You will have to change your schedule (I’ve learned it the hard way) but by no means does it mean you are giving in. An adjustment is just needed. I live in Texas and I go to a rheumy in Boston at Bringham and Womens Hospital. AMAZING is all I can say. My kidney doctor, or shall I say first kidney doctor just kept saying everything was fine when I knew it wasn’t so I sought out other places. That hospital is the #3 in world and #1 in nephrology. My kidneys are bad I’m just waiting till dialysis time. But when your sick it makes you feel down even more but never give up you’re stronger than you know!