How Important is it to get a diagnosis?

Discussion in 'Fibromyalgia Main Forum' started by turtlelou, Jul 8, 2006.

  1. turtlelou

    turtlelou New Member

    I've been sick for 9 years. Seems to be getting worse the last two years. I think my official diagnosis is post-virual something or another. I became ill after getting a Parvo-Virus. I was wondering what everyone's opinions' are on getting a diagnosis. Will it help me? I know it will be tons of energy and work on my part to do this. Not to mention the demeaning hassle of convincing doctors I'm really ill. I only want to put the energy into it if it is helpful to me. what do you think?
  2. Kathleen12

    Kathleen12 New Member

    I've been wondering that myself. With me, I finally got a dx of CFS but no treatment has been offered.

    I see that others here have dx of Lyme, Epstein-Barr, and others which seem to be treated by antibiotics. I guess that if they never got tested, they would never have gotten these meds.

    But I feel that all of my efforts for the tests were a waste for me. I'm still exhuasted and all my doctor does is nod his head in understanding and says that there is nothing they can do for me.

    You will get more answers from others here, and I would advise you to go ahead with all the tests. They may find something you have which can be treated. Good luck with you and I hope you get the answers you need to feel better.
  3. Lolalee

    Lolalee New Member

    Turtlelou, I'm sorry it would be a huge effort for you, but I would recommend going to a good doc so that you can have lab work done to be sure you don't have Lupus, Rheumatoid Arthritis, Lyme, etc. If you have been sick for 9 years without truly knowing what you have, how do you manage your symptoms? I read your bio. If you continue to get worse, as I did, and are unable to work as a teacher, it's important to have a medical "paper trail" to document your illness and treatment plan for disabiity purposes.

    You mention that you have Chronic Fatigue. Is this documented by your doctor? I know it might be a hassle for you, but if you have FMS and/or CFIDS, you really never know when it can "blind-side" you and make life really difficult.

    I wish you the best,

    Lolalee
  4. NyroFan

    NyroFan New Member

    Turtlelou:

    I had my doc put on an Rx script all that is wrong with me.
    I have had to pull it out a number of times when seeing a specialist.

    Bring the trigger point chart with you for FM and asked for them to check them. And tell them how FM and CFS are very often joined together.

    That's all I can think of. I kind of got tired of going for tests, but now I had a bladder scan, going for a cysto-something check and then a follow up visit for meds.
    My bladder does not empty. Aaaaaaaaaaaaaaah!!!!!!!

    I know what you are going through. The best of luck to you.

    nyrofan
  5. Marta608

    Marta608 Member

    One of the happiest days of my clueles life was the day I was diagnosed with CFS --- eleven years ago. I was so relieved that it took me a month to realize that although I had a diagnosis I was still sick.

    I'd say it depends on your symptoms, who you can find as medical support, i.e. a good doctor, and if any of your symptoms can be helped by prescribed drugs for which you would need your doctor. Sleep comes to mind. "If we can't sleep, we can't heal" - however, don't get in the habit of using sleep meds because once on them, it's very difficult to get off. Use them intermittently if you need to.

    Good luck.

    Marta
  6. KelB

    KelB New Member

    I'd say that the initial round of testing is well worthwhile in order to rule out other conditions that mimic FM and CFS symptoms. Lyme, Lupus, Coeliac and MS can all look like FM or CFS at some points in their development, so it has to be a good thing to be sure that you don't have them.

    If you do eventually end up with a diagnosis of FM and/or CFS, then treatment-wise, it depends what your local doctors are like as to how useful that diagnosis is. The diagnosis point is usually when conventional medicine ceases to be much help.

    At least if you can be sure that you do have FM and/or CFS, there could be an approach listed in this board that will help. But if you're actually suffering from something else, you could spend years working through the things that have worked for people here, and see no benefit.
  7. lenasvn

    lenasvn New Member

    I would second another reply that said if you will seek disability down the road, you really need a diagnosis. That's where I'm at right now, I can't work, and I can't apply for disability, other than for PTSD then, but I don't feel that one will be the big thing I want to get it for. My body is more of a problem than my PTSD, and it would be deceitful to myself in the long run.
  8. Marta608

    Marta608 Member

    In fact, I thought about this last night when I couldn't sleep. Aren't you glad to know someone you don't know is thinking about you in the middle of the night??

    And.... I think, yes, we need to have a diagnosis because we need to rule out other things.

    Marta
  9. ABCDfamily

    ABCDfamily New Member

    I have to respond to this posting because I have also asked the question "why do I need to know?" I found the answer after looking into my daughter eyes and hoping it's not Lupus. My Mom has been sick for more than 30 years and the DR's couldn't care less. Now at her age they really don't care and I am in the middle of finding out if I have Lupus or some other potentially deadly autoimmune disorder. I have lived ill for many years and now I have a DR/ who does care and is sending me to the right DR. I have already been diagnosed with CFS/Fibro by my family DR however, he wants to double check himself. I am scared to death.

    On Thursday I am going back to the RA DR to see if anything else has been found in the 38 different tests he has ran. I have my hubby going in because I do not want to know or should I say I do not want to hear it. I have decided the only reason it is important now is because of my children. I could not bare my daughter having to go through this and lose everything that I have lost.....................friends, jobs, family memories, etc. I'm sure you all know what I mean.

    Should I find out I have Lupus you can be sure that the DR's who ignored this for this many years will be hearing from me. I have a paper trail about 10 miles long. I have been to DR after DR, shrink after shrink and the RA DR. was appalled that no DR. has sent me his way in all of these years. At this point I need to know because Lupus can be genetic.
  10. mme_curie68

    mme_curie68 New Member

    Hi Turtlelou -

    I think it's important to get a dx because FM and CFS mimic so many other diseases (MS, Lupus, RA, Lyme, etc.).

    Once you know where you stand, you can move forward with a plan of attack.

    Without this information, you could be hurting yourself, all the while thinking you're helping yourself.

    Hugs,
    Madame Curie

  11. barbinindiana

    barbinindiana New Member

    if you would end up in the hospital, it might be good to have this illness in your doctor's records. Also if you go to a new doctor or specialist, I would think it would be beneficial for him/her to see it in your records.
    Barb
  12. bossco

    bossco New Member

    I needed to know what was wrong with me, why my health was declining, that I was not going crazy or making my symptoms up, and that something deadly serious like cancer was not going on. It gave me an inner peace.