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Should I Try Another Doctor?

Discussion in 'Not Diagnosed Yet?' started by Aira, Mar 5, 2020.

  1. Aira

    Aira New Member

    I've been chronically ill for 5 years now and I haven't been able to get any real help from doctors. My symptoms seem to match lupus, but I have no idea if I have it or if there's another explanation. I finally got an appointment with a rheumatologist and was very disappointed with how it went. Now I'm trying to decide whether to find another doctor or just give up. I'm so frustrated at this point with doctors, it actually seems like I might get better information from the internet, from people who definitely have lupus and know all about it, before I try again with another doctor. Any feedback would be greatly appreciated. I'm sure a lot of people here have also had long, frustrating periods of seeking a diagnosis and being ignored by doctors who don't take female patients seriously...

    My symptoms are not constant. I have around 1-3 weeks of feeling more or less okay, then 2-4 weeks of feeling really, really ill. The symptoms during these periods are:
    • Extreme fatigue. I can hardly get out of bed in the morning, my body feels too heavy to move sometimes, I fall asleep at my desk at work and I'm too tired even to engage in favorite hobbies at home.
    • Headaches, lightheadedness, brain fog, memory problems.
    • A low fever (only about 1 degree C above my normal temperature) that comes and goes. It's not constant, but it will come for 20-60 minutes, then go away for a while, then come back, etc., over the course of a day. I usually get chills as well.
    • Joint pain. I have some history of joint problems: I have chronic tendinitis in my right wrist and problems with my jaw because part of it didn't grow properly in childhood, and I sprained my ankle badly twice when I was younger. These days my knees hurt pretty much all the time and make clicking/crunching noises when I go up and down stairs (even outside of these symptomatic periods). During the flare-up periods, all these joints hurt much more than usual, and more joints hurt as well, including my hips, my feet, my shoulders, and my elbows. But it's not consistent. Usually one side hurts more than the other (I have scoliosis so my health problems are usually lopsided like this). Mostly joints hurt when I use them. So if I'm walking, my feet, ankles, and hips will hurt. If I'm at the computer, my wrists, elbows, shoulders, and occasionally knuckles will hurt. If I just lie in bed, most of the joint pain usually goes away.
    • All of the joint pain is MUCH worse in the summer when it's hot, and even resting doesn't help. The joints usually do NOT swell up at all and visibly look normal. The only exception is that sometimes one of my knees will get slightly puffy, like there's a bubble of water under the kneecap, but it usually doesn't last long and I haven't managed to get to a doctor to show them this.
    • I have some shortness of breath whenever I do... anything, really. Going up and down stairs, taking a walk, even just getting up from my chair can make me feel short of breath.
    • I seem to get a lot of sores in my mouth - just small ones, canker sores / mouth ulcers. Also, the tip of my tongue has been hurting for nearly a year now. It feels like I burned it on hot soup or something, but the pain never goes away. This is true all the time, not just during the flare-ups.
    • I am quite sensitive to the sun. Being in the sun is painful for me, I get dizzy from it immediately, and sometimes I seem to get a mild rash from sunlight.
    I also have some other health issues, including awful steroid-resistant eczema, GERD, IBS, tinnitus/hyperacusis, and many allergies (all pollens, dust, mold, feathers...). The rheumatologist I saw dismissed these all as "just stress" and said they had no bearing on this chronic illness.

    All of this has been getting worse and worse over the years. I'm at the point where I'm worried about being able to continue working. I am alone, no family, no support network, no safety net, so if I need to make arrangements for some kind of assistance in the future, I need to do it soon. But so far, doctors won't help me. Most of them take one look at me, see a mid-30s female who is clearly stressed and nervous after years of bad experiences with doctors, and tell me to go to therapy because they think it's all psychological.

    The rheumatologist I just saw last week was especially unhelpful. She was an older woman, seemed quite conservative. I tried to list my symptoms and she kept brushing them off, saying things like fatigue, headaches, and fevers were "not her area" and she only cared about the joint pain. I wasn't having symptoms during the appointment, so of course when she examined me she found everything looking normal. My knees did click and crunch a lot, but she said that was "probably nothing" in someone as young as me. She insisted that I can't have lupus because I don't have a rash on my face.

    So... Should I try another rheumatologist? My hope of finding a good one is waning. It's extra difficult because I live in a non-English-speaking country and my ability with the local language isn't quite good enough for medicine, so I can only go to doctors who speak English, and there aren't that many. Looking at my symptoms, do they really match lupus or another autoimmune disease? Or am I wasting my time and energy trying to get help? So many doctors have told me to go to therapy, I'm starting to doubt my own judgment.

    Thanks so much for reading my long post. I would be truly grateful for any feedback.

    EDIT: A few other issues I forgot to mention which may or may not be related to whatever's wrong with me:
    • My hands are always cold and in sudden temperature changes they change color. Not bright white or blue or red, but splotchy with white/blue splotches on them. I don't know if this is the "Reynaud's phenomenon" or just ordinary poor circulation.
    • I have some slight issues with incontinence - I always feel like I have to pee. If I jump up and down, cough, laugh too hard, it makes me pee a little. It's very embarrassing. I'm always running to the bathroom to try to keep it in check. This is NOT new, I've had this problem most of my life.
    • I've always had a not-great short-term memory, but it seems to be getting a lot worse. I'm having problems like not being able to remember if I've taken a shower or brushed my teeth that day, and having to go check to see if the shower or toothbrush is wet.
    • I've always been dyspraxic (gross motor), but this has also gotten worse lately. I keep dropping things, walking into doorframes and furniture, stumbling over my own feet, etc.
    • I bruise easily and even small cuts often leave scars for a while. I still have some scars from cuts I got when I was a teenager, even though they weren't that deep.
    • I frequently get what I suppose are abscess or infected hair follicles around my groin. I tried to see a dermatologist about it once and she shrugged at my description, refused to even look at it, and told me to get laser hair removal (they are not ingrown hairs). So I still don't know what that is all about.
    Again, no idea if these are related, but if I'm looking for advice, it seems good to include all the information I have. Thanks again, everyone.
    Last edited: Mar 5, 2020
  2. Lori ODonnell

    Lori ODonnell New Member

    Hello. Did you have the blood test done for Lupus? At least 2 times for false positives. This should help.
  3. Lori ODonnell

    Lori ODonnell New Member

    Actually, you have many of the symptoms I have with my Lupus. Mine is Lupus lung disease now but the shortness of breath. Mouth sores, poor circulation (my fingers are always blue), low grade fever, joint pain, fatigue. So I would have a blood work up. CBC panel or ?. These experts on this site know alot so they can correct me. :)
  4. Aira

    Aira New Member

    Thanks for the response. I haven't had the blood test because so far every doctor has refused to do it. They seem to think that by virtue of being female and sort of awkward and nervous (I'm autistic so my body language is very odd and often misinterpreted), and having symptoms they haven't seen (because I somehow never manage to get in to see a doctor during a flare-up, it takes too long to make an appointment and I never know when they're coming), I must be a hypochondriac, and therefore they automatically refuse to do tests. If I ask for a test, they take it as proof of my hypochondria. It's so frustrating... The country where I live is extremely sexist and only very young female doctors ever listen to me (but I haven't been able to find a rheumatologist fitting that description).

    Mainly I have posted here to see if the community thinks these are potentially lupus symptoms, and that it's worth the continued fight against the medical system in this country to keep trying to get a diagnosis. If folks here read my list and said "that doesn't really sound like lupus" then I'd probably just try to move on and find another explanation, but if you guys say it does sound like it might be lupus, then I will keep trying to find a doctor who will at least do the test.

    I wonder if my GP could order this blood test? She's lovely, the only doctor I've ever had in my life who really listens to me. But I don't know if she would be able to do this test or interpret the results.

    I've had several other English-speaking friends in this country say they've had a similar experience with the health care system. Their standards are horribly out of date and there's very little oversight. If you have any condition that isn't clear-cut and obvious, most doctors will shrug and say "I don't see anything wrong with you", with the implication that they don't believe there IS anything wrong with you, no matter what you say.

    I do have a follow-up appointment with this rheumatologist. She sent me to get some blood tests but she didn't tell me what they were for. She insisted that I can't have lupus because of the lack of a face rash, but she said she was testing for "rheumatic factors" - would that include the indication of lupus, if I have it? I'm afraid I don't understand how the blood tests work very well, what they test for and how to interpret the results. I go back in 2 weeks for the results and I will ask for a copy. Is the blood test 100% accurate - I know you can get a false positive, but if the test is negative, does that mean conclusively that I don't have lupus?

    Honestly, while I certainly don't want to have lupus, I also really desperately want some kind of answer. Without any diagnosis whatsoever, I'm having serious problems. I keep missing work or leaving the office early because I just can't function, and the only reason I have to give people is that I "don't feel well". People are getting sick of hearing it. Even if whatever is wrong can't be solved, I at least need to be able to tell people why I'm sick so they take me seriously and don't look at me like I'm just being lazy or something. :(
  5. lazylegs

    lazylegs Moderator

    Welcome to the site Aira.

    Unfortunately your story is all to familiar around here and it took many of us several doctors before we found one to take us seriously. Don't give up. You may or may not have Lupus but something else could be going on.

    You doctor is incorrect when she said you must have a Lupus rash. It is just one of the many symptoms you could present with. Mine did not develop until years after my diagnosis.

    The crunching in your knees makes me think more of Osteoarthritis, however more than one thing may be happening there. Your rheumatologist should be able to make a diagnosis if it is. You could also see an Orthopedist for a second opinion.

    Not being able to see swelling you might be feeling is something I went through. At times it even looked swollen and the doctor would dismiss it. Unfortunately they hadn't seen my knees prior to the incident and it drove my husband and I crazy because we could see and feel the difference.

    The bladder issue should be addressed. It may be as easy as faithfully doing the kegal exercise you can find on line or it may you may need to see a physical therapist. You GP should be able to guide you in that area.

    Raynaud's rashes can be splotchy. The colors can even be mixed. I've had both purple and a reddish orange in the same region.

    Doctor's can sometimes overlook our complaints of memory issues. It might help to explain some instances of it. My doctor finally sat up and took notice when I told him I went to do payroll and had no idea of what to do after doing it for 14 years. Mine was extreme but I think you get the idea. Your doctor may not feel the things you present aren't bad enough to warrant testing but they can offer ways to cope and things to help trigger your memory.

    It doesn't sound like the appointment was a total waste since bloods are being run.

    Take care,
  6. Aira

    Aira New Member

    Thanks a lot for your response. I will keep trying. I'll see what the results of the blood tests are. I'm not sure what is being tested for, but if it's not helpful, I will just move on to another doctor. If I can't find a good one who speaks English, I'll just have a local friend come with me to translate. This is all so frustrating. I just want an answer at this point. The longer I go without one, the more people tell me it must all be in my head and to stop trying. in a way I hope I do test positive. At the very least, it would be proof that it hasn't all just been in my head all along. If the test is negative, then I'll be right back where I started, with no idea of what's wrong. :(
  7. lazylegs

    lazylegs Moderator

    I doubt it is all in your head. It sounds like you know your own body well enough to know when things aren't normal.

    Take care,
  8. x_claire_x

    x_claire_x Moderator definitely have something going on, don't doubt yourself. They do need to do an autoimmune blood testing panel and include anti-rnp, which an be a feature of Mixed Connective Tissue Disease.... it specifically has Raynauds and lung involvement...and it needs treating.... it is a mixture of diseases usually, Lupus more than likely part of the mix, so the treatment is the same for all of these types of diseases. It might help to do a daily diary for at least 6 weeks before you see anybody, describing the pain every day and pain grading it. Note the weather, Note the activity you are doing and describe what you health is stopping you doing ie, pain on washing my hair, reaching for something, exercise, walking down the steps ...etc.

    I hope you can find an efficient Doctor, perhaps you could do the diary and make an appointment with the sympathetic female GP and explain you are not imagining it and it so hard to live with the pain etc that you do every single day........ might be helpful to take somebody calm with you, who knows you, who can tell her their observations of you too.

    I am glad you have found us...........hope you can find a way forward, you are the only advocate your body has and it sounds as if it is in distress and needs some investigating for sure.

    Take care.............Claire
  9. Aira

    Aira New Member

    Thanks a lot for the responses. I have already been keeping a daily log of symptoms for a few months now, which I use to give detailed information to the doctor - but it doesn't help if the doctor won't listen to anything I say. When I saw the rheumatologist I came with a list of symptoms to share (with details like how often they happen, what time of day, etc.) and she refused to listen to anything that wasn't "joint pain". She was solely focused on the joint pain and immediately ready to dismiss me when my joints weren't swollen. She insisted that my main symptoms (fatigue, brain fog, headaches, low fever / chills) are "not her area" as a rheumatologist and I should see someone else about them. Essentially, it seems like she's a terrible rheumatologist. Unfortunately, this is the standard personality for doctors in this country. My current plant is to wait for the blood test results and then try to find another rheumatologist for a second opinion, if I can find one. I have no idea if the blood tests she sent me for included the one that detects lupus.

    My most problematic symptoms, as I said, are the fatigue, brain fog, lightheadedness, headaches, and to a lesser extent the joint pain, all following a cycle of a few weeks with severe symptoms and a few weeks with little or no problem (which is part of the reason I was looking into lupus - this flare-up cycle seems to match). The main interference with my life is simply that I can't seem to do anything. I often have to stay home from work or leave the office early because I can't think straight. My flat is a mess because I don't have the energy to clean (and I live completely alone and have no support network to help me). I feel like my life is being drained away, but so far no doctor has helped me at all, and almost all of them shrug and say "probably anxiety" and try to send me to therapy, even though I absolutely do NOT have an anxiety problem.

    However, the pain in my knees is consistent and not dependent on the cycle. I'm convinced I have some kind of arthritis in my knees or something. The crunching, grinding, clicking noises they make are horrible, and they hurt all the time. I'm not even 35 years old and I have started having to take elevators and escalators where I used to happily take stairs. When I see older people walking with a cane I actually feel envious - it would be so nice to have something to lean on! But I can't bring myself to start walking with a cane when a doctor hasn't told me to do so. It makes me doubt my own sanity, thinking "what if they're right, what if it's all in my head", etc. I used to take long walks, the only type of exercise still available to me due to a variety of health issues, and now I can't even do that. I've gained a lot of weight and it's starting to make me very depressed. I tried explaining this all to the doctor but all she cared about was that my knees weren't swollen when she examined me. She even heard the crunching/clicking noises and said that they were "probably nothing". I really hope I can find a better doctor. It's been five years since this all started and it's getting worse and worse with time. I'm so frustrated and sometimes it seems like there's little hope. :(
  10. lazylegs

    lazylegs Moderator

    Not all doctor are up to speed when it comes to autoimmune diseases. It seems you don't feel this one is so you have answered your own question about looking for another doctor. You might want to look to the Universities for a rheumatologist. Another idea is to ask any nurses you may know. They know a doctor's reputation and if they are easy to work with or not.

    Take care,
  11. Kathryn Roberts

    Kathryn Roberts New Member

    Oh wow, I'm so sorry. I'm kind of in the same boat. What country are you in?? I've been trying to get diagnosed as well, but my doctor doesn't want to fully commit to Lupus because the next step would be to put me on steroids and chemo and that's not what either of us wants.
    I had them say the same thing about the facial rash. I had it come for two weeks before I even knew what Lupus was and since my doctor didn't see it, he couldn't diagnose me from that either. Have you had a ANA test done?
  12. lady_redhead

    lady_redhead Registered

    Hi. I don't have much to add, except to take a picture of any rash or swelling, and in your notes/diary, jot down family history, especially if there are autoimmune diseases.

    Take care
  13. Aerielle Max

    Aerielle Max New Member

    Thanks for sharing this, I hope you stay strong and hopeful.
  14. pagespark

    pagespark New Member

    Hi, based on what you've shared, please consult a rheumatologist, so you can have a better understanding of your case. I too always have doubts whenever I go to a doctor for a check up.

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