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Diagnosis with no tests? Possible?

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:22 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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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 :)
  • 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!
  • 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?
  • im gonna try to make this short, i no some people are gonna think im wakko but this is all truthful my first rhumi 27 years ago says i have fibro i then had to go see a diff. rhumi in the same office he ran what i remember more blood test(i had to be seen because right knee was huge and sore)this was along time ago and hard to remember everything,they did drain my knee, and a couple days later i get this diagnosis of lupus, so for approximately 5 years i was taking med for lupus at that time i had shoulder problems (both shoulders, bladder issues and i think some of my organs were inflamed. after being on lupus meds for 5 years my previous doc says NO patsy you dont have lupus,you have some arthritis in your shoulders, your right knee got inflamed from playing baseball and from carring around to heavy of scuba equipment, and we see some cervical stenosis in you neck. he then put me down with the fibro diagnosis again then years later the multiple sclerosis diagnosis came up, bottom line i dont feel i have any of these, and i no im not a doctor but i no my body and i am very intone to every piece of this body, i also went through 1 or 2 years with gastro specialist had ever test under the moon including 2 sirgery to make sur there was no cancer, i think i said before my swallowing is not real good and at a time i could not swallow at all i do no i have gerd a bad case, a delay in my empty scan from esophagus to tummy then it sits in my tummy for some times 2 days, i will throw up if im not careful i do not have a gag reflex at all and if i have a belch or burp there is nothing i can do to keep it from coming up my family understands but in public its imbarrasing ,i have other things i could go on and on and you prolly would understand. i would like to no more about your ungoing things thanx for reading keep your head high even if it seems poss. because your answers might be right around the corner i no you are frustrated and i see why but hang in there i been there
  • I think you should just work your hardest at finding a different dr. From what you say, there is NO WAY I would be putting up with the treatment you have received.

    Before I was diagnosed with Fibro, I had seen all of my dr. for my knee, PCP, and Back specialist and my pain management dr. Of all of these people, it was actually the PT and my back dr. who got me headed into the right direction that there was something wrong with me. PT told me one day while he was working on my hamstrings that I had "something wrong with my muscles". From there I asked the PM doc, which turned out to be pretty much useless what could be wrong, although, he did lead me in the right direction. He named my pain myofacial pain, and when I looked it up online, I found out what it meant and I had the symptoms. I showed DH and he totally agreed with me. So from then on, I kept a pain diary...I wrote down what the weather was like, how I felt in the morning, throughout the day and at night. I also wrote whether I worked, how PT was, and WHERE I was hurting. I kept it for nearly 2 months. I wanted to see if there were any patterns to my pain. And there were...always in the same places, and felt pretty much the same. So, I had an appt. with back specialist and I told him what was going on. He said it sounded like fibro and gave me the name of a rheumatologist.

    At the rheumy, I brought in the papers that said the symptoms of fibro, the picture of the locations of the tender spots, in which I circled where I felt them, and the diary. He really didn't read the diary, but he did see what papers I had. He asked me about blood work I've had done, and what other exams and who I had been seeing and at what point did this start. I told him and then he did the tender point test.

    He counted 16 of the 18 tender points. So did I. He looked at my hands for signs of RA, but that's negative. Then he said he agreed with me and Dr. Back specialist.

    I just saw my PCP the other day and he also agreed that I definitely have Fibro.

    It just takes perseverance to get down to the bottom of the problem. You say you don't have many of the symptoms, but you should also understand that Fibro has tons and tons of symptoms and from what I have read really the only 2 things that people have in common are the tender points and widespread muscle pain. The rest of the symptoms vary from patient to patient. There are some people who's pain varies from day to day.

    But I think what's important now is that you find another PCP b/c if you really do have Lupus and they are brushing you off, then that can't be any good for you. I don't know much about it, but I do know that it's a really serious illness.

    Good Luck.
  • Thank you Fuzzy! As Far as I know, the tender points and the widespread muscle pain are the two symptoms that I have the least of or even not at all. I'm not exactly sure of this though because nobody has checked me for the tender points.

    I do have some of the symptons but the ones that I do have are the same as sypmtoms of Lupus also. Such as nausea, hair loss, extended periods of complete exhaustion, etc.. Plus, the blood work came back positive for this. I'm not too sure how important the blood test is though.

    I'm going to make an appointment with a Rheumotologist right away! Whatever the diagnosis turns out to be I think that would in fact be the best doc for me. From what I have seen so far, everyone else has gotten a true diagnosis by having actual tests done or at least they have had the tender point test done. I have had nothing, except the original blood test! I appreciate everything everyone has told me and I will seek the proper treatment. Obviously my regular PM is pretty worthless! All he has done for me is to continue to write my pain med's out for me and has left it at that. And let's not forget, he didn't even tell me that I supposedly have fibro for a year or however long ago he had come up with this. He is WORTHLESS! Uugh, he makes me so mad!

    Thank you everyone! I was unsure of which way to turn but I know what to do now. I may have fibro and I may not, but at least I will finally know for sure and get whatever help that I need.

    Sincerely,
    Jewels
  • This is my final post. I have had to deal with defending myself to everyone for the last 8 years and I didn't expect to have the same problems here, but I have. I will not be returning to this message board in the future. I'm already close enough to blowing my head off and I don't need to be pushed any further by another person on this message board. I'm better off the way I have been for 8 years, by myself.

    I wish the best to all of you and hope that you all find the relief that you so deeply need. Good luck to all of you.
    Goodbye,
    Jewels
  • tender points. They really are easy to find, especially if you have it. I just touched the areas where it was pointed out on the paper. Just 2 did not feel tender to me. The rheumatologist counted the same exact ones I did. I just wasn't sure of the other 2 b/c they are too far up on my back to reach them but he touched me there too and I did not show any tenderness. But I definitely have it on my neck, (front and back)my chest, my elbows, hips, shoulders, knees and rear.

    I agree that you should try and see a rheumatologist. They are very, very good drs. Try and see one who has experience diagnosing fibro though. If you really do have it, then they will diagnose you for real. And I think they have to do something about you being diagnosed with Lupus. I have heard it's a painful illness.

    I'll tell you, when I went to see my PM doc the last time, I was irritated with him too. The first visit I had, he was excellent and I fully trusted him, and on that first visit, I had a cortisone shot in my back. That says a lot about a dr. I think. But the last time I went there, frustrated and in tears b/c I could NOT get a straight answer about why I still had pain in my knee after all this time since recovering from a meniscus tear, I got turned off. My rheumatologist I have now has done more for me in one visit than any of the other drs, have with the exception being the spine doc and to some extent the knee specialist. I guess I was turned off b/c he kept asking what I wanted him to do for me, and I simply said that every time I try and ask questions, I get nowhere, so I told him that I wanted him to figure out what was wrong, or at the very least point me in the right direction of WHERE to go to get the answer!

    Well he tried to put me on Lyrica, even after I told him I had a really really bad reaction to it. I tried to tell him that pain meds were nice but I don't want to take anything until i KNEW what was wrong. He also suggested a discogram, which I thought was so silly after I looked up what it consisted of, b/c all it would do it seemed to me, is tell me something I already knew...I have arthritis and DDD in my lower spine and some mild herniated disks in my T spine area. Well at that point I was concerned over the pain in my legs, not my back!

    So, I see you may not be posting on here anymore. I hope you stay, but try and listen to us. This is a really, really great community. I have gotten a lot of answers from the people on here, and you should too. I understand it's hard to get around, but go and find a rheumatologist, and when you do, get tough with him, which is exactly what I did with my spine dr, when I told him the symptoms.

    I simply said, Look, I've been running around to dr. after dr. and I feel like I am getting the run around. I am not leaving this office until you hear EVERY word I am about to say. So, he stood there, a little dumbfounded, but stood there and listened to me. I told him about the pain diary, which I got the idea from here or another board. I told him WHERE it hurt, and what it felt like. I explained that the pain felt different to me than the radiculopathy pain I had been experiencing. I made him feel the tight bands of fiber on my arms. I showed him all the spots it hurt. I explained that the knee dr. said I do not have arthritis in my knee, and he couldn't find anything else wrong. So after all this, he said, I think you are on to something, and he gave me a referral to the rheumatologist. I got in a few weeks earlier than planned b/c of the pain and I lucked out b/c of a cancellation.

    The rheumy fully listened to everything I said. No more tests, other than the tender point test and he looked at my fingers. NO bloodwork. I guess part of that was b/c I had every symptom/sign imaginable for fibro and myofacial pain. THe back dr. wrote that I was there for ruling out fibro, but he really knew it was that. So that's the story.

    Sometimes you just have to get tough. I do all the time b/c I refuse, especially after what I went through with the first knee person I had, to be taken lightly when I KNOW something was wrong. I had known this for YEARS, and it took this long to finally be taken seriously!
  • I have no idea what happenened to Jewels , it must have been in another thread. I know what she means about defending yourself. Yea, I agree the rheumatologists seem to know the most. I still wish there was a blood test or something because although the dr seemed to know, my husband often thinks my complaints of pain and tiredness are laziness.
  • I'm sorry, I'm certainly NOT laughing at your pain and what you've had to go through but, when I got to the point where your doctor stood there dumbfounded, I could just picture it! I actually laughed out loud over that. Way to go! BTW, I too had torn 2 meniscus in my right knee. I don't know about you but that pain was almost unbearable! It went all the way up my thigh and nothing could slow the pain. Surgery fixed that right up for me but now I have arthritis in both knees.

    I will definately Google Fibro. Thanks for telling me about that! Personally I don't think that it's fibro but since that is what I was diagnosed with I wanted to check here and see what everyone else is going through. To see if I can relate. But still, I just don't have the same symptons. Maybe the 18 point check will help me know more. I actually have most of the symptons for Lupus, but I'm hoping of course that is not it.

    I have to keep going back to your message to remember everything that I want to respond to. Ok, I remember! I too have been keeping a pain diary, I list everything in it, no matter how trivial. You never know what may be a clue. Yes, I'm going to make an appt. with a Rheumy, and a new PCP. I think that would be the wisest choice for me at this point.

    Thank you for telling me your story, it's amazing how comforting it is to me to know that others care and are willing to share their own experiences. It really does mean the world to me! I hope that you are happy now and are being well taken care of. From the sound of it, you wouldn't settle for anything less.
    Sincerely,
    Jewels
  • I wish your husband could understand this has nothing to do with being lazy. Have you had him read any of the messages on this topic? You are such a sweet person and you don't deserve that. Maybe you can get some literature for him to read or even take him to an appt. You need to try and make him understand through education, because no one in this pain should have to defend themselves. Keep in touch and let me know what's going on.
    Take good care of yourself,
    Jewels
  • but he thinks I should just suck it up. He did finally agree to drive me for the cortisone shots when I called a neighbor. I think though the fact that I'm willing to take in injection into my spine, which scares him, I think makes him realize the pain is real and the fact that the dr is willing to do it.
  • Who in their right mind would allow that damn needle anywhere near them, especially near their spine if they didn't need it?! So NOT fun! I'm really sorry that he isn't as supportive as he should be. Luckily my husband is but I do have family members who are not. I have a sister who actually said to me "If I had to take Oxycontin than I would just rather be dead!", or something close to that. I found that to be a very cruel statement. She's a nurse and sees patients come in who have overdosed or who are drug seekers/addicts. She says that everyone who takes medication like that are addicts. I have tried to explain that she is seeing the paltry 5% of people who are addicts and that's why they end up in the hospital. The other 95% take them responsibly and don't need to go to the ER all of the time. But I can't get this through her thick head! Because she's a nurse she MUST be right, oh yeah, even doctors are wrong a large part of the time! It's maddening and makes me want to pull my hair out.
    Sending you a hug,
    Jewels
  • I found the web site that shows where the pressure ponits are and tried it out for myself. Out of the 18, I only found 2 that were tender. I'm not a doctor so I can't be positivte about this. The tender spot was on the inside of my left kneee where I've had surgery done about 6 years ago and it's hurt ever since. The other tender spot that I found was on the left side of my neck, when I touched there my left arm flipped into the air like a sideshow act! I also went over the symptons again and I only have about half of them, where the symptons for Lupus I have almost all of them. I'm going to list a few of my symptons below and if anyone else has these, or knows anything, I'll take all of the info that I can get.

    (1) Flare Up's (when I have these I am so wiped out that it takes too much energy to answer the phone, feed the cat, watch TV, etc.)
    (2) Fevers (I tend to run mostly low grade fevers very often, sometimes they can get even higher)
    (3) Night Sweats (Since I sleep in the day also, it's really "whenever I sleep" fevers)
    (4) I have pain in all of my joints.
    (5) My hands & fingers swell and go numb.
    (6) I get canker sores inside of my mouth often (I've never had a canker sore before until about 2 years ago)
    (7) My hair is falling out in large numbers (I leave a trail wherever I go, it's a good thing that I have thick hair or I would be bald by now)
    (8) Depression, mood swings, memory loss, etc.

    These are just a few off the top of my head. Any info, opinions, etc. I would very much appreciate. Thank you!
  • The blue head in my post above, I have no idea why that popped in there. It was supposed to be a number!
  • Ihave seen with my own eyes! doc.s diagnos pt. with fibro and they have not even layed one finger let alone touch tender points. i swear with my own eyes and more than one time it happens all the time. dont believe you have fibro because a doc said you did, im not sure whay kind of doc you seen but rhumy's are good at doing this maybe they think they can call it fibro with no test being done because they are rhumeys i dont know,
    30 years ago, (of course i was just ababy heheh) before anyone ever heard the word fibro, i have the first book ever published on fibro from 30 years ago a rhumey diagnosed me with fibro well since then ill tell you and many well known honest doc,s will say so to its just a bunch of poohy(and i dont mean the pain for heaven sakes ill be the first in line to say the pain is real horriable and even crippling) but they have no right to c=give it a name just so they can call it something because the doc.s just really dont know what is wrong i have been there i have done it about 3 years after this fibro being on my medical records i say a diff rhumy (my usually one was out) bing bang oh my goodness i was in that office for 2 hours i wasnt even 20 years old already had a baby and i was told i had lupus i took my lupus meds for years my knees and shoulders were my biggest complaints.about 2 or so years later once again im told you dont have lupus its RA well well if i could write a book i had my knees drained 2 times they are fine to this day except for the fact that my legs are so weak i dont walk much but to potty and here and there. im not going into that, but still after all these years that fibro word is still on my record, my 2nd N.S. SAIDto my hubby and my face just less then a month ago while looking at my file hmmm fibro i said rite away i dont like that word dont believe it never had and i dont have what ever they wanna say it is period , he got serious and told us plain as day fibro is just a bunch of non scene. when my first born a son has none of my issue except for some minor neck pain from when he plated football. my daughter is me all over again i have never told her this but i think she is starting to see it she is 25 now when she was 14 and the star of her basketball team her knees and shoulders started acting up took to ortho doc his first words was its growing pains oh i wanted to sock this man he said this before he even examined her, after he had to drain the fluid off her knee and said her shoulders will get better in time 6 months later while runner in track she was the fasted in many divisions then when she went to do long jump and land in sand it messed her knee uo again, well when basketball started the next year i think she was 15 the shoulders were so painfull and i had all so much already new what she was feeling because same crap started with me when i was in my teens she would cry and scream i would lay her on the floor and very careful raise her arms up above her head, no doc would ever take her seriosly when she was 15 i started home schooling her because just caring the back pack was to much plus its hard when your so good at sports being a teen and having to give them up all her ,, in a teens life there sport are there life it all they think about it helps them get good grade and its just plain ol hard to quit your sports. friends supported her but only close ones really understood well we got through the homeschooling thru liberty academy, thru the mail, it was harder for me than here but she grad. got a diploma

    one more thing i wanna add that might help my blood work one month might be high in my rhumy factor which would indicate RA and two months later be normal.
    one more i think everyone should get a vit b12 shot weather doc says you are low or not i give myself my own shots every 2 weeks it was hard to get the script but alot of pleading and i did i call it my happy shot. im quitting now i need my coffee and oh yea it b12 day see ya patsy
  • My mother has to take oral B-12 every day, she seems to have a problem with not being able to absorb in a normal manner or something. Luckily she's not on shots yet! I've had 2 blood tests for RA and both have come back negative. I too know my own body, and I listen to it. We all know ourselves better than our doc's do. I know for a fact that something is wrong with me but I don't know what it is. As I mentioned, I was only able to find 2 tender spots from the body map that I was told to see on the internet. @ out of 18 isn't much, maybe a doctor would be able to tell better than I. Personally I would prefer fibro over lupus any day. I really don't want the med's that you have to take because of it! I have to find another rheumy in town, there HAS to be more than one. It doesn't even make sense that there would be only one! It may not be either one for all I know! But one thing that I DO know, I don't have very many symptons of the fibro at all. Again, what can I expect when I've been diagnosed with no exam. And BTW, it was my PM who gave the diagnosis. He a very lazy and irresponsible man! I stay in a 8 to 9 on the pain scale but I'd never get him to believe that! I'm on the hunt for a rheumy, a "great" surgeon, a new PCP, a new PM, and anyone else that I decide might be able to help me. I've been keeping my pain diary BTW and I really don't even need it. I have all of my aches and pains memorized along with what it takes to set it off. ButI'll keep doing it anyway, at least it will show that I'm being proactive!
    Gotta go to bed now, I have a doctors appt. in the morning. Actually just a few hours away!
  • most people with are issues always start out with a dignosis of fibro and then they just add more diagnosis's to it. i was treated for 2 years on meds for lupus. you know there are two diff kinds of lupus sum have only one of them sum have both.
    first i had fibro
    than lupus
    than R.A.
    than myanthesia graves
    than M.S.
    before my fibro diag. shoulders were so bad i was to have surgery on both this at age 20, i was scared, new babies, decided on cortisone shots for the time being,i have suffered on and off for last 25 years with shoulder pain, but never had surgery, and my shoulders are in better shape today than they were 25 years ago -ex rays to prove. I have had to have cortosone shots about 2 a year for 23 years in shoulders but in last two years no shots needed, my shoulder pains now are diff and is caused from neck completely different pain than before. back to all the diff diagnosis i could go on with more but you get the point. love patsy
  • get yourself sum b12 sublingo they melt under tongue and taste good i also take this everday they really help, next time you go to doc ask for a b12 shot, if he insist on having blood test first have the blood test, just remember what might be normal for other people in b12 test might not in all b12 cant hurt you at all even if you have to much
    get the 3000 sublingo pills they are a bit hard to find so you might only find the 1000 take them every day and wait and see if you dont feel a bit better. research on b12 that will help you understand,,,, patsy
  • jewels- I just wanted to add my expereince with IBS. I suffered for years with severe bowel problems and spasms. I was on medication for years to calm the bowel. While it helped some, it was not a cure. I cannot remember the drug's name (I think I blocked it from my memory). I had test after test and scoped and X-rayed and on and on. The drs told me I had IBS. :^o

    Many years go by and I am diagnosed with endometriosis and it was now severe and Stage 4. I had 6 surgeries including a surgery where they scraped the endo off of my colon. Guess what, my IBS went away. It was really endometriosis and not just IBS. :T I was both angry and glad..angry that I was not treated for the endo and then glad the IBS went way.. #:S ...take care...jade
  • after all these diagnosis and let me mention just because you have been diagnosed does not always mean you have it im living proof..I do not believe i have fibro, i know i do not have lupus, even though i took strong meds for it for 2 years,I dont have myeanthesia graves. i went almost one year with that on my records. im not 100 percent sure about the M.S. I was taking provigal, nerontin, and one other med for ms even though my brain mri showed no lesions and spinal tap came out clean, they still say i could have it the m.s. i mean but when spinal tap came back okay they dismissed the myeanthesia graves disease, but kept the poss, m.s. i do think i have some R.A. maybe who knows, i have been diagnosed not just told maybe with these things and they have been proven wrong, so with all that said.. i think my problems all stem from my weak neck and stenosis that i prolly was born with -sum it all up at times doctors are wrong in their diagnosis. ,,,patsy
  • I totally forgot about this board. Since I can't fall back asleep, I started surfing. You say you are always tired, and since you have some of the symptoms of fibro but not many of the tender points, I wonder if you have Chronic Fatigue Syndrome?

    HAve you found a new Rheumatologist who isn't going to blow you off?
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