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Diagnosis with no tests? Possible?

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:22 AM in Fibromyalgia
X( I just recently found out that my PM doc (pain management) had diagnosed me with Fibromyalgia a couple of years ago but forgot to tell me until last month. He's a real prince! But I really don't know how he has come to his conclusions. If anyone has seen one of my posts on the "Chronic Pain" topic board you would already know how bad my doc is. Anyway, I'll try and start with just the Fibro part since the rest of my story would take too long. I have had several spne surgery's and 1 reconstructive surgery. This has left me disabled with severe chronic pain. It all started about 8 years ago when I was inured in a fall. Prior to that I had always been in fairly good health. I was with a great pm doc but when he moved away, I git stuck with a horrible, irresponsible pm doc that has neglected me pretty badly. He is also cruel, rude, and condescending. Since my very first visit with him I can honestly say that not once in 3 years has he ever given me just one measly exam or has done any bloodwork on me except for twice. I am not allowed to tell him any of my problems, when I try he cuts me off and smirks at me, he refuses to allow me to speak. He also has never once asked me to ever tell him anything about what I am going through or how I feel, nothing. My visits consist of walking into his office, he writes my pain med prescription, and tells me to come back next month. That's it, seriously. Four minutes tops! Last year he decided to get some bloodwork on me and had me tested for Lupus and Rhumatoid Arthritis. I came up positive for Lupus. He told me to go to my PCP and talk to her about it. I went to her and she said it's nothing to worry about. Since then< I've begun to have even more severe problems than I already did. I have looked up Lupus and I have almost every sympton except for the rash. I recently asked my Pm to have the samebloodwork run again and off I went for the blood draw. While I was having my blood drawn, I asked the guy who was doing it if there was a test for lupus there that had been orderd. He said "No" and said it was only for rhumatoid arthritis, which I had already come up negative for before. BTW, when I asked my doc to redo the blood test is when I was told that he had already diagnosed me with Fibromyalgia. I looked up fibro on webmd and some of the symptons fit but not very many, especially compared to lupus. I don't know why my doc didn't order the lupus test. Here is what I want to know. Can I be diagnosed with Fibro if I haven't even had an exam for it? I thought that they had to rule out other possible causes before they could diagnose you with this. I am so lost at this point and already have so many other problems due to my back problems, and the fact that they are getting so much worse. Should I accept his diagnoses or should I seek out another doc like maybe a rhuemoltolgist? How was everyone else here diagnosed? Did you have an exam first or any tests done? Please help because I'm at my wits end here and really don't feel like I can take much more.
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13

Comments

  • I was told i had fibro 27 years ago, it was a bunch of baloney i had problems docs could not put a name to so they said fibro we now no i don't have it never did have it and never will
    when a doc doesn't no your exact problem hes gonna call it fibro,that makes some people feel better to have a name to there problems and that's fine, but its all just a cover up to the real problem
    a good doc wont play the fibro game with his patience if he truly cares. he will say we are gonna keep trying to find the answers a negative doc will just quit with trying to find out what is wrong and say fibro. its just a catch all diagnosis many many docs will be truthful about this
    when the told me at 18 my shoulder problems were fibro, i didn't even believe it then that was my only symptom except I was tired alot later find out thyroid was my issues,and having bad shoulders handed down from grandma, playing basketball running pole jumping scuba diving hurt my shoulders my beliefs, and what sum docs have told me!
  • :) if you have been talking for awhile about what a bad doctor you have why is there any question? of course you should seek another doctor. if you feel your care is inadequate then you definitely need another one. good luck and maybe that will help you feel better all the way around! Jenny :)
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  • A 4 minute appt constitutes a brush off in my mind.

    Please go back and reread your posts and look at them from the perspective of someone other than yourself. I bet you will be on the phone in no time finding a different doc.

    What gets me, is that Lupus is not just some run of the mill condition. Left untreated, it will destroy a person from the inside.

    "C"
  • Jewels,
    I am so sorry you have had to deal with this for so long.
    I've been seeing a PM for a year with DDD and a herniated disk. After I had a bad weekend and couldn't get out of bed he did the tender point test which I had 17/18. That's when he said "Fibro" but his next words were go see a good rheumtologist.
    My Rheum did the blood work. She tested everything saying if it all came back negative it was most likly fibro. She said Lupus was her biggest fear. All my blood work came back negative so I started a "fibro" diet and B-12 shots. Honestly I have never felt better in my life.
    My advice is find a good doctor! If you think it's Lupus get a Rheum doc right away!
    Hugs!!!! Good luck!!
  • That's what one of the things that I was wondering about. What kind of doc that I needed to see for this. Thank you so much for the info! I've pressed myself all over my own body, since my doc won't, trying to see if I hurt and with the exception of a few obvious places that I already have other problems, I couldn't find any of these "tender points". It's pretty bad when I have to do it myself! I'm really happy to hear that you have found relief. I didn't know if there even was anything they could do for Fibro. Thank you very much for your post!
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  • That's the main reason as to why I hate this doctor so much. Yes, I have had a huge brush off since the first day I walked into his office. But finding a new PM is very hard for me. As I've mentioned before, where I live this is the only PM that there is. I have to travel 3 hours one way to get to another city to another doc. That wouldn't be a big deal if I had anyone to drive me there but since my hubby works out of town for months at the time, I am alone. If I have to drive any longer than 30 minutes I will fall asleep at the wheel from sleep deprivation. Since I'm still unfamiliar with fibro, except for what little that I have read about it, I didn't know if other people have been diagnosed the same way that I have. Or what kind of doc that I needed to go to. Obviously my dochasn't recommended that I see anyone. For this, I'm pretty much at a loss! Actually, for everything I'm at a loss! It's hard when you only have one PM in town that you can go to! What you mentioned about Lupus destroying me from the inside, that is what I'm so scared about and I don't know why it's being so overlooked. Even by my PCP! Let me ask this. If I have come up positive on a Lupus blood test, can that ever mean that I "don't" have it? Even when afterwards I start to show many of the signs that I do? I'm LOST!!!!!!!!!!
  • I feel that many doctors, such as mine will use this as a catch all rather than bother to try and find out what the real problem is. I just didn't know where to turn, what kind of doctor that I should try to see. I thought that it would be a rhuematologist but wasn't really sure. My doc sure isn't telling me who to see! It's like when I started having severe stomach problems and went to a gastro doc. about 10 years ago. I went to the supposedly "best" gastro doc in town. Instead of him bothering to run any tests at all, he just looked at me and said "I don't need to run any tests because I know what your problem is, you have IBS". Well guess what? First of all I know what the symptoms for IBS are, and I don't have 1 single sympton. I consider that to be another catch all for lazy and arrogent doctors. A couple of years later I wound up in the hospital or 4 days because of my stomach problems and after a battery of tests I was diagnosed with Gerd, Gastroeneritis, and Pancreatitis. Only to name a few! I also have a potassium defiecency. BTW, IV's with potassium for 4 days are very painful!!!!! They have to change the IV every day because of the damage that it does to your veins. Not fun! Basically, I'm a walking lab experiment! I think I should donate my body to science when the time comes, LOL!! I also happen to have 3 liver hemangiomas! What can I say, I'm a freak of nature!
  • Thank you for the nice post! Yes, I certainly know that I "need" to see a better doc but I am seeing the only PM that there is in the town where I live. It's not as easy as it would be if I lived in a city. My hubby works out of town for months at a time and can't get me to a "good" doc every month like I would need to do. What does someone do when you are faced with that situation? I haven't a clue!
  • Yes I too had many symptoms of lupus and/or fibro but the rheumatologist who had more training will screen you with bloodwork. I'm on magnesium now and still trying to figure out what to do next but its best to rule out similiar sounding conditions.
  • So it ended up being Fibro for you? Yes, I had thought that more blood work was supposed to be done, it seemed a little (or maybe a lot) crazy to diagnose me before I had been tested for anything. But, being new to the Fibro and Lupus world, I had no idea if this could be diagnosed that easily. I've had a lot of bad cotors in my past and it's hard to much faith in any of them anymore. Where did all of the good ones go? I'm still wondering though, has anybody else had a positive test for Lupus but not really have this condition?
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