As of last week, my primary doctor and rheumy doctor were both pretty sure I had lupus. Now, today, according to my blood tests, they were negative for lupus even though the one test showed I have inflammation in my body, but it's not arthritis. The nurse simply told me that test that was abnormal didn't matter to anything. Then why do these tests if they don't matter? So I guess it's fibromyalgia which I've had since 2000 even though my rheumy tells me I have fibromyalgia just "a little bit". How is that possible? You either have it or you don't. I was just wondering if anyone had the same run around with your doctors when it came to your lupus diagnosis. I have many symptoms of lupus, but I keep being told it's my "little bit" of fibromyalgia. Yes, fibro mimics lupus thus making it difficult to be diagnosed correctly. I just don't know what to do anymore. I'm very frustrated, and my doctors are running out of options to treat my chronic pain because they either don't want to get in trouble by the government for prescribing an excessive amount of narcotic pain medications when it will help my severe chronic pain or they don't have the time to fit me into their schedules because being on better narcotic medications will require more doctor visits for refills. So if anyone out there has had similar issues, I'd like to know what you did and how you did it to resolve getting answers answered and finally coming to your diagnosis. Thanks everyone, and I wish everyone a great day!
I get the run around too. My docs just refer me back and forth and it’s really frustrating. I find keep a symptom journal is helpful when talking to them. I open it up in their office and give them the exact same info each time.
Thanks for the advice:) I’m just so tired of being shuffled around and being told that a second opinion won’t matter. I will definitely give the symptom journal a try. I hope things get better for you!
I have been on the run around since March of this year. My PCP put it this way if it smells like a dog looks like a dog and sounds like its a dog its a dog. Thats how he explained my diagnoses. Hes the only one that is stating it is lupus. He said there going off my labs and such now and not looking at what they were in March. I spent 5wks in the hospital before the diagnoses. Then they diagnosed me and start treatments so of course my labs are going to be altered. All my other docs are all saying no, and just keep running test because according to them there is some auto immune disease/connective tissue disease but there not sure which one. SIGH! So I totally know what you are going through! Hang in there and I hope you can get it all straightened around.
Thanks for sharing. I'm seeing one more specialist in my area who is nationally accredited and supposedly the best in the region so we'll see. I have received some excellent suggestions, and I plan on doing or investigating each one I get. At least your PCP is smart. I think I've been with mine for so long that he knows my body better than I do! Good luck to you friend:)
Sounds like what I was told at the Mayo Clinic. My first rheumy diagnosed me with R.A negcero kind. Then I started showing signs of Lupus. Sometimes a marker occasionally pops up in blood work, but usually not. We recently moved and now every rheumy wants to start back at the beginning for diagnosis and treatments. So I hear your pain!
My rheumatoid test was negative. It was just a few points from being abnormal. I just don’t get it but now I’m going to keep a daily journal of my symptoms and go from there. I hope they figure everything out for you really soon:)
Remember, docs don’t like saying " I don’t know" so I tell mine up front it’s ok if you don’t know but tell me that you don’t know and then give me your thoughts on what it could be. Sometimes docs need to be reminded that we don’t expect them to know everything. Keeping a journal definitely helps the doctor understand. Just an FYI…narcotics don’t really work on fibro pain, so if they’re helping then the pain could be from something else. Anti-inflammatories tend to work better like ibuprofen. If your pain is from multiple sources like mine then they can prescribe vicoprofen. It’s vicodin with ibuprofen instead of tylenol. I take norco when I need it which has been daily for a while. I’ve been getting terrible headaches which could be the vasculitis hitting my brain. Get a brain scan Friday. Ugh! I’ve been dealing with all of this for over 30 years so getting the doc run around is something I’m used to. Fortunately I’m part of Kaiser so all my doctors can access all of my records through the computer. Makes it easier on me since I can’t always remember stuff very well. I’m only 43 so this memory stuff isn’t exactly normal…lol Gentle hugs, Annemarie
I told my pain management doc that the hydrocodone is not working. I got put on this muscle relaxer that helps a little. I’m on gabapentin for nerve pain from my damaged nerve in my spine. My herniated disc surgery went terribly wrong where I’ve needed more surgeries after that. I have horrible hip pain where I had the huge lipoma removed almost 3 years ago now. The docs just don’t know what to do with me anymore. I just need to speak up more and advocate for my own care I guess. The fatigue is what’s killing me right now because so many days I’m so tired I can’t get out of bed and my husband is left to raise our 4 yr old son. I’m working with a psychotherapist and psychiatrist for my depression and anxiety. But hearing everyone’s stories is giving me more hope now and what I need to do so thank you everyone and hoping everyone is having a good day:)
I have been told I have lupus since 2008. Now they tell me I do not have lupus, it’s drug induced lupus . They are now calling it SIcca syndrome. I still have rheumatoid arthritis and I m taking monthly IV infusion of orencia. The IV infusion has made me have more good days than bad.
I don't take anything for pain becaue I just have osteoarthritis. My dermo first questioned if I had Lups or not because of the skin rash. It didn't ALL look like lichen planus. She did the biopsy and found the lupus.I'm happy with my drs.
I can understand your frustration I wish I had an answer for you.
fibro does not mimic lupus really at all. Having both they are very different.
As to doctors, no matter what kind of inflammation you have, NSAIDs should help so are you on at least one of these? Plus inflammation is in almost every kind of disease. Heart disease is type of inflammation for example yet we would use low dose aspirin to keep blood thin and treat as needed depending on type of heart disease.
I would think that your doctors must have some idea about where your chronic pain is coming from...joints, spine or bone damage or even cancers. You might be seeing the wrong kind of specialist....what does your primary doctor think you should see.
If they really don't have clue, i try to find a excellent Internist as they tend to be excellent at diagnosing. Explain, you would like a doctor who enjoys difficult cases. But having severe pain and they just do not have clue, seems rather strange...
I hope you find a internist or go to teaching college and start totally all over. I once had severe eye pain from which the first ophthalmologist thankfully said to me, i really do not have clue, but this doctor, if you do not mind, really likes atypical cases and it sounds like you have had atypical issues now for number of years...i did but they always diagnosed it within 6 months at very longest. I agreed and started excellent relationship with a wonderful eye doc. He said i was describing to a t a specific disease...come to find out...he was correct as some 15 yrs later rheum realizes i have that diseases as well as other autoimmune like lupus.
So i try to get them to both be specific and talk to you together. If they do not know, ask to send to you a doctor who likes atypical cases...but though lupus and fibro can run together, same as RA and lupus or other things too with lupus, they do not mimic each other at all. Blood tests, how you feel, night and day at least in my life it has been.
but i do understand how it must be frustrating. You might even see a pain specialist who might lead you to right kind of specialist or a particular doctor who is excellent at diagnosing. Also, they understand about how pain radiates so though may hurt in your hips it could be coming from your shoulder or feet due to ortho issues.
I hope you search around and find a decent doctor. I got very lucky also one time just going into urgent care when i was sick and found i think one of the best diagnostic doctors. Sadly she works only part time( mother) but all her patients gladly wait 2 hours in her waiting room as she normally is behind...but we all know you will get the time you need when it is your turn. Plus her staff is pretty good about letting you leave and coming back if you have checked in. But point is, she spends not ten minutes but on average a good half hour or more per patient if needed. She also covers ( as all my good doctors do) how you are doing emotionally and not a quick how is your work going, your husband etc. She wants to know sincerely realizing mind/body are tied together.
So they are out there...just finding one may take time....i been looking for one up here for more than two years now!! tried about 4 or 5 doctors all over hour away. Looks like i am going to need to drive to larger city about 4 hours away unless i get lucky. so good luck to you too....Also you might try calling your insurance company every once in while you get a service rep who does know the doctors in your area and they can get huge help. I also called lupus foundation but in my area they are not active here anymore and doctors other liked...just are not what i am looking for...so know what you are looking for in a doctor. I think in your case, just enjoying diagnosing would help you the best. you might wander halls of your local hospitals and if you see a patients who looks to enjoy their doctor go talk to them..if you are not getting any help from friends and family. I know this is bit extreme...but if i am getting some blood work done..i will look for people like myself who sound like they really like their doctor...just remember even if you think the doctor they are seeing and think is wonderful is a real jerk...keep it to yourself. Many people expect to be treated differently than others from their doctors. just make it constant possibility ...ask at work, or dentist...just anywhere. Look online at those sites, one on this site for decent doctors. i hope you do find one soon....as i hope it for myself too. good luck to you
Hi Sherbear, I feel your pain. I too had been receiving the run around from a Rheumatologist. I was diagnosed with Lupus back in 1986/87. He had no doubt it was Lupus even though my ANA tests would come back only slightly elevated. He believed this because of my symptoms and issues and other lab work he ran as well. My flares would sometimes get so bad they would debilitate me. At one point he told me the next time I get a flare to just come in to his office. I did and he ran the blood work again. The ANA came back slightly more elevated, but still was not as high as the “average person with Lupus.” He stated “your body sure knows when you get a flare!” It eventually started affecting my lungs. I developed Lupus related pneumonia and pleurisy.
In the 90’s I moved to Florida and did not see anyone for it, as I had no insurance. I tried my best to deal with it on my own however; sometime around 2008 it started to really hit me bad again and I found a Rheumatologist. He ran tests and because my ANA was only slightly elevated, he decided I did not have Lupus. Imagine my surprise! So, he did not treat me. He tried to figure out what it could be but had no answers.
Last year it got so bad I had great difficulty trying to work. Finally in February of 2013 I had to stop. The pain and sickness is so bad I can barely function. In addition, he found I had another autoimmune condition on top of it. So now I had two! He ran some more tests and decided it is Sjogrens Syndrome.
Come April I realized there was no way I was going to be able to return to work and applied for Social Security. I explained to him we needed to know what was going on as I applied to SS and paper work needed to be filled out. I have to say he did run many, many tests, xrays, lab work. But still did not believe it was Lupus. The only thing he prescribed me was Plaquenil. I finally decided I needed a third opinion.
I sought out another Rheumatologist. I brought copies of my lab work and other test results. I explained to him what happened and he said that although the ANA tests were only slightly elevated, he did feel it was lupus, but he was going to run his own tests before he made a diagnosis. He ran the usual lab tests and also sent me to a specialty lab for a test I had never heard of. It is called an Avise SLE & SLE+ Connective Tissue Panel Test. Apparently it is a fairly new test and is only done in California, however; there are specialty labs throughout the country that draw the blood and send them to this lab in California. This test too came back only slightly off what it should be for Lupus, however; he felt it was enough to diagnose me with Lupus. Combined with all the other tests, plus my symptoms and issues, it was enough for him. And he is treating me accordingly What a relief.
You see, everybody is different. Not everyone is affected by things the same way. If I’m this sick with a lower ANA than the average person with Lupus, I don’t want to think about what I’d be feeling if my ANA was higher. I probably would not survive it. I have always been A-Typical. Even as a child. When I was little I had strep throat. It entered my blood stream. I was very sick, but I still functioned pretty well considering. The doctors were amazed. My mother couldn’t believe how many doctors were called in to look at me. They said I should have rheumatic fever and be flat on my back. Any other child would have had to have been hospitalized. But they let me go home. I had to go back every few days for more and more blood work. They said they were trying to find the strain as there are many different types and they did not recognize this one. But after a few months of this I became more and more frightened and eventually started fighting them off. My parents were not very happy about this. The doctors said without my cooperation there wasn’t anything they could do. But if it got worse to bring me back in. I just seemed to get better. I have had many experiences like this throughout my life. Not going to go into all the details here, but my body does not react to things like the average person. And I suspect there are a lot of people out there who also do not react the same. If more doctors could be like the one I had in New York back in the 80’s and the doctor I have now; who understand not everyone is the same. We’d all be a lot better off.
I hope all goes well. Good luck to you.
Most newly diagnosed patients DO get the runaround. I don't know if it's because doctors are reluctant to give the diagnosis or what, but it happens often. Blood, urine and many other tests (11) I believe, are the checklist to determining Lupus. Sometimes a biopsy is required, as with me as I have never been ANA positive which occurs in only 1% of Lupus patients. As with ANA blood indicator, this cannot be the only symptom. Memory loss, loss of appetite, fatigue, achy joints and muscles (Fibro often accompanies Lupus), photosensitivity even if new, butterfly rash. If you google Lupus it will give you the checklist. I am unsure of the number of symptoms that you must present, but it's not all 11. Be proactive before it does permanent damage to your organs.
Best of luck,
The same way that some cousins can pass as twins, some immunological diseases seem so alike it is remarkable its resemblance. As further tests are done, drs.are able to determine which is which. This happened to me.
Another sleepless night so now I have time to catch up on the responses. Here's the whole story because I don't mind sharing. I just hope it's not too long to read.
Everything started in the beginning of 2000. It was just before my 18th birthday. I woke up one morning, and my legs hurt really bad, so bad I couldn't even walk to the bathroom. Luckily, my boyfriend was there to carry me to the bathroom. Almost every morning after that day, I've woken up with muscle pain. Some days it feels like it's in my joints, others just muscles. My primary took every blood test under the sun. Wasn't lyme disease, wasn't lupus, wasn't arthritis. He couldn't figure it out so I went to see a rheumatologist once. He pressed on the pressure points where I had tenderness and some painful, and he determined in under 5 minutes I had fibromyalgia. So since that day in March of 2000 I've had fibro. Over the next few years, I would have really bad days and have really great days for months at a time until the next flare up occurred. I've suffered lots of tragedy in my life so my doctor thought my symptoms were stress-related at times. I just got used to everything and figured I'll go on with life as is.
Things really got bad after my lipoma removal in 2011. After it was removed, I continued to have severe pain, but my surgeon contributed it to fluid in the incision site. The fluid built up so bad that my incision exploded out. I woke up and thought someone stabbed me. So the hip pain has been continuing since then. Then a month after that ordeal I was in a nasty car accident. I suffered severe whiplash and back injuries. I went to a chiropractor to help straighten everything else. I insisted my primary should order an MRI because I was having herniated disc symptoms even though he thought otherwise. Sure enough L5/S1 was herniated pretty good and really pushing on my right side nerve of the disc. So my orthopedic surgeon suggested I try therapy and steroid injections into my spine. We wasted 4 months because none of that worked. So I went in for surgery to repair the disc. During that surgery, they cut my dura matter in my spine which caused a massive spinal fluid leak. They repaired it and closed me up. I continued to have a spinal headache so 4 days later another surgery was done to find the where my spine was leaking fluid. It was repaired and I left the hospital a couple of days later. 5 days after that I started to feel sick like generalized feeling all over your body and my temp was going up. It was found that I had a horrible staph infection. I stayed in the hospital for a week on vanco treatments to kill it. Then I was sent home on antibiotics for two months after that. So my spine never recovered after that which makes me have horrible sciatic pain due to the nerve damage from the herniated disc, and before that I did have chronic pain in my back but nothing this bad of what I'm experiencing after all these surgeries. I had more surgeries after that and with each one I developed a staph infection. I do not have MRSA. Ever since then nothing has been the same in my body. I've had the rashes on my arm out of nowhere. I get this red rash across my face, increased sensitivity to pain, horrible fatigue, can't be in the sun and heat for very long or I start feeling sick, and my depression is horrible. I have short term memory loss so remembering things is very difficult for me. If I don't write it down, it will be forgotten. My husband has to have repeat conversations with me because I don't remembered what we discussed.
I even tried a neuro stimulator to get off pain medications or reduce their use. The device got infected so out it came and creating even more pain in my lower back. When the device was removed during surgery, something went wrong where my heart rate increased to the 160's. So I have an abnormal heart rhythm that I take medication to control.
I was in another car accident this past year where I got swung into the back of a semi truck. My shoulder is impinged and has a soft tissue injury so I know what is causing tenderness and pain. But my main complaint right now is muscle pain everywhere and just feeling so tired all the time despite taking many vitamins especially B12 and D3.
Here are a list of my docs:
Primary- gives me my blood pressure and cholesterol meds, thinks I don't have lupus, and I don't think he even contacted my rheumatologist about the final blood work. He ran the rheumatoid factor test and according to the listed results that I can see it was 10 out of 15 being the limit before abnormal levels. Sed rate was abnormal. Metabolic panel was ok except showing my thyroid was up a little bit.
Rheumatologist-thinks I'm just having back pain from the accidents, and I have a very mild form of fibro. No arthritis. Gives me muscle relaxers, agreed that I had lupus according to the skin biopsy that was taken and I'm on a prescription dose of Naproxen which barely helps at all.
Electrophysiologist- gives me heart medication to control my heart rhythm
Pain management doc- gives me hydrocodone and a muscle relaxant along with my gabapentin
My psychiatrist- meds for anxiety, sleep, and depression
So this is my storm of problems. If anyone sees something that looks suspicious or similar to their experiences and something was done to change your condition for the better, I'd like to know. I'm very limited where I can go for health care in my state until I receive Medicare here in a couple of months. Still waiting for my referral to this nationally accredited pain management doc in my area. I've been told he's been a miracle worker of finding a meds regimen that will be beneficial. He's also the leading specialist in fibromyalgia in my area as well where he has given many speeches at events concerning it. He's done medical trials among other things. So he's my only hope right now. I was previously on morphine and percocets to relieve my pain which was working for me, but also making me so sleepy so I couldn't go anywhere without someone driving me but my pain management doc said I had to come off of those because I would get red flagged in the system because of profiling and being a pill seeker. Plus I should be fine on hydrocodone. Well he was wrong. So my plan is to keep a symptoms journal, wait to see this other doc, and go from there. One way or another I will get what I need and a second opinion about lupus.
Sherbear, Sorry for all you've been through. I sure hope the pain management doctor is able to help. I wish you well.