Discussions By Condition: I cannot get a diagnosis.

So amazingly fustrated!!!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: deedee35
  • July 2, 2008
  • 03:43 PM

I have posted a great deal about my issues. I saw my new Primary Doctor again. He's a great Doctor...though I had to push him a bit. His diagnosis as of right now is fibromyalgia which I can certainly agree to and he did check my tender points being as he is a DO. I have an appointment next week with a Rheumatologist. I know that she will be testing me for ALOT of stuff, which is great because my PDoc only tested ANA with complements.

Here's my request for help: How have you guys dealt with people who are have no empathy or are rude about your health? I am shocked because I am in Health Care and I have my Pharmacy Manager telling me that FMS isn't real and that I just need to take vitamin B. My boyfriend told me last night that people at his work - A DIABETES EDUCATION CENTER-are saying that FMS is BS.

I think I probably do have Fibromyalgia but I need to find out if it is secondary or primary Fibromyalgia. My father was diagnosed with this and my father is the guy that told the dentist not to use novacaine when they pull teeth- i think he was in pain to go into the doctor and get the diagnosis... my point is that it *****s me off when people act that way because my dad isn't a hypochondriac and neither am I.

Any suggestions on how to deal with people who just run their mouths to hear their own voices? I have enough to worry about right now, can anyone give me some advise from their own experiences? I can not afford to waste my energy on such silliness and I need advise on how to cope.

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12 Replies:

  • I work in healthcare too. There's a great article in the NY Times this week about doctor/patient relationships with lots of interesting comments on this topic. The CDC has recently come out and endorsed the dx of fibromyalgia. But like so many things in medicine, all this means is that there is a consensus on a constellation of symptoms. It explains nothing, it only validates that gee, 100,000 may not be wrong about what they're feeling after all. Duh! I recently attended a medical ed program on Lyme, and a prominent guy in Boston postulates that fibromyalgia may be a sterile, post-Lyme issue. Basically, the body has had Lyme, fought it off, and the result over time is what we call fibromyalgia. I think his theory holds a lot of merit as it gets at a cause. You can bet pharma is behind pushing fibromyalgia as a disease-state. They have a drug for it that they want to sell you. Ugh. Me, I'd try the vitamin B as a first-line treatment. It;'s cheap and who knows, it may work.
    aquila 1263 Replies Flag this Response
  • I am so sorry you are dealing with ignorant people besides dealing with Fibromyalgia. I know several people who have it and other Rheumatological diseases. My defense, personally, is to have facts at hand to answer them with. I will copy articles or forward articles via e-mail to them. There is a great support group at neurotalk (http://neurotalk.psychcentral.com/index.php) for Fibro where I am sure you'll be able to get more support, info and tactics.At least you have a diagnosis, a name of a disease that you can tell people you have. I am still trying to get one. The longer I go being sick, the more I compensate for my disabilities and become less "sickly", and consequently the less people believe that I am really sick at all. I've had several Drs tell me that I should consider the possibility that it is "Psychogenic"- even though I have been seeing a Psychiatrist who agrees with me that it is not. Unfortunately people suck more than they don't- even in medicine. Luckily, you've found people here who understand you, believe you and support you.My Fibro friend said it took her a long time to figure out what her triggers were but once she did it is very manageable just by avoiding those things. I hope you start to have less pain soon.
    dizzy lizzie 192 Replies Flag this Response
  • I work in healthcare too. There's a great article in the NY Times this week about doctor/patient relationships with lots of interesting comments on this topic. The CDC has recently come out and endorsed the dx of fibromyalgia. But like so many things in medicine, all this means is that there is a consensus on a constellation of symptoms. It explains nothing, it only validates that gee, 100,000 may not be wrong about what they're feeling after all. Duh! I recently attended a medical ed program on Lyme, and a prominent guy in Boston postulates that fibromyalgia may be a sterile, post-Lyme issue. Basically, the body has had Lyme, fought it off, and the result over time is what we call fibromyalgia. I think his theory holds a lot of merit as it gets at a cause. You can bet pharma is behind pushing fibromyalgia as a disease-state. They have a drug for it that they want to sell you. Ugh. Me, I'd try the vitamin B as a first-line treatment. It;'s cheap and who knows, it may work. Remember, I am a Certified Pharmacy Tech and heck yeah.. there is a rx for fibromyalgia. I take Lyrica for Fibromyalgia. My opinion on Lyrica being someone in Pharmacy and being on the medication is that people need take it only if there "fibromyalgia" causes nerve issues- which mine does, badly. I think that people with this syndrome who take this and think it's a magical pill is in for a very rude awakening. I am still in pain. My B12, D, and metoblic panel is within good range now- what b supplement are you meaning? I would love to take some probiotics and some enchea(spelling?? you probably know it) and some Vitamin C but quite honestly, I am afraid that if something is wrong with my immune system it might make this craziness go into overdrive if that makes sense. Of course, getting off the phone with my boyfriend and he tells me the orignial paperwork I got from the Doctor doesn't have my ANA on it and the Doctors states that all they got... i hope he is just not reading it right. What do you think is the theraputic dosage of the B supplement you are speaking of?
    deedee35 38 Replies Flag this Response
  • I am so sorry you are dealing with ignorant people besides dealing with Fibromyalgia. I know several people who have it and other Rheumatological diseases. My defense, personally, is to have facts at hand to answer them with. I will copy articles or forward articles via e-mail to them. There is a great support group at neurotalk (http://neurotalk.psychcentral.com/index.php) for Fibro where I am sure you'll be able to get more support, info and tactics. At least you have a diagnosis, a name of a disease that you can tell people you have. I am still trying to get one. The longer I go being sick, the more I compensate for my disabilities and become less "sickly", and consequently the less people believe that I am really sick at all. I've had several Drs tell me that I should consider the possibility that it is "Psychogenic"- even though I have been seeing a Psychiatrist who agrees with me that it is not. Unfortunately people suck more than they don't- even in medicine. Luckily, you've found people here who understand you, believe you and support you. My Fibro friend said it took her a long time to figure out what her triggers were but once she did it is very manageable just by avoiding those things. I hope you start to have less pain soon. Lizzie, I am with you on alot of this. It sucks, because it almost pays to be sickly acting. It sounds like you and I are alike in the way that we try to keep pushing on. It's getting to the point where I feel like it would be better if I didn't work at all because they assume if you work at all that you're ok. I will admit that my Doctor and family are generally compassionate- but they know I hate how I feel and hate how I've lost my life. I can't even work full-time and I hate it. Most people will never understand what it's like to lose yourself to an illness and maybe that's what makes them so slow to empathize. Maybe if they had to make a choice between paying their bills and feeling like they're going to throw up or pass out everyday than maybe they would be more understanding. Until than I imagine we'll just have to put up with their judgemental attitudes.
    deedee35 38 Replies Flag this Response
  • yes yes yes
    dizzy lizzie 192 Replies Flag this Response
  • Sorry, I don't have a dose/type of B vitamin in mind. I was responding to the advice given to you by your pharmacy manager. I would ask him/her what he/she was thinking on this.
    aquila 1263 Replies Flag this Response
  • Sorry, I don't have a dose/type of B vitamin in mind. I was responding to the advice given to you by your pharmacy manager. I would ask him/her what he/she was thinking on this. Heh. Ok. I thought you were suggesting that because I think I see that you are into holistic medicine a great deal. I am not sure WHAT my pharmacy manager was thinking. He acused me of starving myself but failed to understand : a. I went on adderall before this happened- adderall which they used to give to morbidily obese people to lose weight and b. I've been sick since April. I try to eat but when you do not feel well eating isn't all that appetizing. My metabolic panel is normal- and by that I mean boringly normal. My Vitamin D levels are ok and my B12 is too. I am going to talk to the Manager of the store today. I'm very tired, stressed, and tired. I am at least MAKING an effort to work, which alot of people wouldn't. Putting up with this silliness is one less thing I should have to deal with.
    deedee35 38 Replies Flag this Response
  • I truly feel your anger. I have been to the ER more than 5 times in less than 2 months, Urgent Care same amount of times, 2 neurologist, 2 primary care doctors, and have left crying. On 2 occasions at the ER I never even seen the doctor, he had the nurse give me an RX and discharge me after he had me take a CT Scan, and never gave me the results. I can't find a doctor to give me more than 5 minutes of their time. They just give me a pill and hope it goes away, meanwhile I feel like I am just wasting away everyday. I have migrane headaches, Perpherial Neuropathy, extreme fatique, severe weekness in my wrist, hands, legs, and feet. Poor circulation in feet( turn blue) Numbness in hands and feet. I walk with a cane and can only walk for maybe 15 minutes. But the great doctors we have in our healthcare can't take the time to or care to find a cause. My one Neurologist wrote in my report that my reflexes and muscle checked out o.k. Really, he didn't even touch me. He sat at the computer talking while he typed away. I have lost all faith in doctors. Also my family is not supportive at all. They think I make this all up because the doctor's cant find anything. Hello, they havn't looked!!!I just had to move out of my house because of toxic mold. My loving brother-in-law told my husband that I would just look for new illnesses when I move. All I can tell you is that it is your life and you have to take control of it. I have learned to tell my family to kiss my _ _ _!! Maybe if I die from whatever I have you will take it seriously. As far as doctor's, as soon as they walk in the room to see me I tell them that I am done being treated like a piece of _ _ _ _ . I really don't think doctor's know how to deal with disease's. I hope you find support for yourself. I know that I need to do the same.
    akablonde 3 Replies Flag this Response
  • AKABLONDE,I know how you feel. It sounds like you have either acute toxic mold poisoning or a combination of toxic mold poisoning and an autoimmune disease. Most doctors don't know anything about either one. If you have the resources to, try to see a Rheumatologist and an Environmental Disease Specialist. While most of my family has been supportive of me, I have dealt with needless drama at work. I just came back from vacation and it became clear that pretty much everyone thought that a week away was going to be a magic cure. Thankfully I already have surgery scheduled for August.What city are you in, perhaps I can find a doctor who specializes near you?
    dizzy lizzie 192 Replies Flag this Response
  • Hi yes I agree with sooo many of you...as a fairly healthy person and coming from a healthy family I am dealing with the medical field really for the first time with my daughter....it is so frustrating! The main doctor who we have been seeing tells me that my daughter just needs to eat more to feel better....UGGHHH! How frustrating when I can just tell something is not right and I am not in the medical field at all!! She is trying to eat and her stomach hurts...We have been dealing with this since Feb (which really isnt' even that long compared to many posts I have read and some of you have been suffereing for years!!) Gosh, I am sooo sorry...it sure does suck!! Sorry Lizzie as I am not sure how to help you deal with the docs as I have the same questions....I hate the fact that we are just another patient to the doc. It seems so easy for them to brush us off....I can say I will keep you in my thoughts! Good luck to all!
    1koolteacher 14 Replies Flag this Response
  • Sorry its been awhile since I've checked my post. Its been extremly stressful. I have been dealing with the builder of my last house. Well not him, he won't take care of the issuses. I have filed a complaint with his insurance bond, the contractor's lic. board, my insurane. Sad thing is, is that I think he is going to get away with it. He broke so many code violations. So not only can I not find a doctor, but I can't find a lawyer. They all say they only deal with multiple homeowners. UGH!!! Well I had a little break from my symptoms, but once again their back. I am beyond fatique. I fell asleep at the dinner table 2 nights ago. Today I almost fell asleep waiting in the car at my boys school. I am getting weak in my legs, and I can't be on the computer for more than 10 min. My right arm gets really painful, and my hand gets heavy. I went to an allergist. He ran some blood test, came back that I am not allergic to the aspergillios. I would love any advice you have.Lisa
    akablonde 3 Replies
    • September 16, 2008
    • 07:28 AM
    • 0
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  • Do you have any fever? It does sound like it could be autoimmune to me- especially with the blue feet thing. You might want to post over at NeuroTalk. They might be able to give you a direction to look in better than I can. Has anyone run any blood tests for CPK, CRP, ANA, or Rheumatoid Factor? If yes, please post with ranges.Sorry its been awhile since I've checked my post. Its been extremly stressful. I have been dealing with the builder of my last house. Well not him, he won't take care of the issuses. I have filed a complaint with his insurance bond, the contractor's lic. board, my insurane. Sad thing is, is that I think he is going to get away with it. He broke so many code violations. So not only can I not find a doctor, but I can't find a lawyer. They all say they only deal with multiple homeowners. UGH!!! Well I had a little break from my symptoms, but once again their back. I am beyond fatique. I fell asleep at the dinner table 2 nights ago. Today I almost fell asleep waiting in the car at my boys school. I am getting weak in my legs, and I can't be on the computer for more than 10 min. My right arm gets really painful, and my hand gets heavy. I went to an allergist. He ran some blood test, came back that I am not allergic to the aspergillios. I would love any advice you have.Lisa
    dizzy lizzie 192 Replies
    • September 16, 2008
    • 02:31 PM
    • 0
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