Got my "official" diagnosis....now what??

Discussion in 'Fibromyalgia Main Forum' started by Bigfoot, Mar 12, 2003.

  1. Bigfoot

    Bigfoot New Member

    Hi everyone. Well, I had two dr. visits today. My neurologist said that he definitely thought I had Fibromyalgia (after countless tests) and signed the disability paper for two months disability, but said he could change that if need be as time goes on. He also gave me a prescription to help me sleep (trazadone). He assured me that what I'm feeling is not in my head and that when most doctors went to medical school not much was known about it, and it was dismissed as psychosomatic.

    Then I had a visit with a rheumatologist in another city that I'd heard good things about. He seemed pretty knowledgable about FMS and said that he had no doubt whatsoever that I had it. He said I also had CFS as well. He then said that there is nothing that can be done for either and that since the medications I've tried (Elevil, Nortriptyline) didn't work, he won't be prescribing any medication. He said there is no cure as of yet, and that herbal supplements are a waste of money. He also said that he does not sign disability forms for insurance companies or employers for people with these conditions because there is no way he can tell just how bad people have it. (look at what it's done to my lifestyle, how 'bout, hmmmm?) I'm a husband, 35yrs old with three children from 11 to 3. I started out working as a salesrep then as health declined (in June) I went to office work, then working from home on my computer (all with the same company). Now (Since January) I spend my days and nights sitting,eating, and sleeping on a LazyBoy. I rarely leave the house! My wife works as much as she can, I have no disability insurance (yet), our resources are gone, bills aren't getting paid.....AAauuuugghhh! How do people make it if they are the main provider and can't work??

    Anyway, I'm a little bummed because now I have a diagnosis, but don't know where to go from here. I need medicine for pain and all the other symptoms you all have!
    I was hoping that once the diagnosis was made, I could start treatment with different drugs. Now I'm told there is no treatment. I expected to have to deal with my ringing ears, but not everything....forever!

    I need your advice, please. I'm fed up with the hassles of this DD. I've been told the same stories the rest of you have heard from "It's psychosomatic", "you're depressed", etc. I even took a $1200.00 six hour psychological evaluation which showed I wasn't depressed or phsychosomatic, but DID show that I was having short-term memory problems (fibro-fog) and otherwise normal.

    I wasn't depressed before, but if this continues....

    HELP!

    P.S. Sorry this is so long. I really needed to vent. Thanks.


  2. evileva

    evileva New Member

    These doctors drive me crazy! How would that rheumy know that meds don't work if he's only tried two! First of all I would find another doctor and keep trying until I found one that I could work with and if you think that you won't be able to work then file for SSDI. That way you can at least get the ball rolling to eventually bring some money in. All I can say is to hang in there and keep trying. Don't give up!
    Eva
  3. jeanderek

    jeanderek New Member

    I really don't have any suggestions other than find a doc to help with the pain. I am seeing a pain management doctor and until I went to him nothing helped with my pain. I was going to my regular doctor for 5 years with this till he finally diagnosed me with Fibro. I have other problems as well but living with this everyday does get very depressing. I had to quit my job in Dec of 2001 because I just could not do it anymore with the pain and exhaustion. I am now trying to win SSD. I wish you all the best and I hope that you find a solution. I just wanted to say Welcome.

    Hugs,
    Jeanna
  4. Sandyz

    Sandyz New Member

    At least you finally got a diagnosis and know what you`re dealing with. Learn all you can about this illness and you will feel a little more in control of things. Come here often and read the posts. I have learned so much here about Fm. So many strange symptoms I was having others were having too.

    Don`t be afraid to come here and vent. We all need to do it. Also, just reading other people`s vents are a release for all of us.

    Some of the best advice I got here was that we need to go to a pain specialist to get decent pain relief. That is so true. I finally went to one about a month ago and finally got some meds that got my pain more under control.
    Your doctor having you try a couple of meds and then saying they didn`t work so nothing is going to work is crazy. Go to someone else.
  5. onecangomad

    onecangomad New Member

    Oh man I am so sorry! :(

    This post reminded me so much of my son when he was a teen.

    He once came to me and said that having finally discovered the previously hidden (by adults) wonders of sex, drugs, and rock, and roll.....well....he just couldn't wait to see what came next...what other previously hidden pleasures awaited him.

    I had to tell him that from now on it was all just variations on a theme.....that and bill paying. :)

    Unfortunately same goes here.

    You have left the group of "undiagnosed don't know what to do for you", and entered "diagnosed, still don't know what to do for you"

    Onecangomad
  6. layinglow

    layinglow New Member

    I, too have FM and CFS, and was diagnosed in late August, finally. In my opinion "Now" is the time to search for a Dr. who will one, address your pain, and sleeping needs, two discover which systems are down, and begin working on each of these with conventional meds, supplements, etc., work with you on lifestyle and dietary changes.

    I was fortunate to find a D.O. on this sites Good Doctor list. A D.O, uses conventional RX's as well as supplements, and alternative treatments. The one that I found is wonderful! He specializes in FM, CFS, and MCS. He stays abreast of the latest research, and has a large client base, so that he has the experience to know various treatments, and importantly that each has to customized to the individual with these disorders.

    We began treatment after DX by starting with the most pressing symptoms---Pain and Sleep....It only took a very short time to get those under control, Pain immediately with tramadol (ultram) and vicodin, and sleep we tried Elavil which didn't work and switched to Klonopin (with the added benefit of obliterating Restless Leg Syndrome, and neuro symptoms). Then we tackled Systemic Candida , and chronic UTI's with supplements, and have succeeded. My diet and lifestyle has done a 360! I am on supplements geared to treat my symptoms. I have gone from being bedridden to having a better quality of life. This Doctor listens and addresses each thing I discuss with him. He is willing to try new things if one fails...I have a true advocate in trying to return my health. My last visit, one and a half weeks ago, we discussed working on the exhaustion. I am now on IM injections (at home) of B12, and it is amazing the difference it has made!

    All this is to say---you need "Now" to find an advocate, someone who is truly willing to help you, address your needs. I would suggest a D.O., as I have found this integrated treatment great. Their area of knowledge with prescription AND supplements/herbs, nutrition, is a great help. If you cannot find one, at this site on the good doctors list....use the search engine on Yahoo, or another large site and type in "Fibromyalgia Specialist <your State>" You will have tons of hits to sort through, make a list, and contact those you are interested in.....interview the receptionist on the phone, before ever making an appointment. Be prepared--you might have to drive a ways....but it is well worth it. Seeing my Doc is an all day trip---but when I look at the results it is well worth it. There is NO point in seeing a rheumy like you mentioned who can afford you no treatment. Although there so far is no cure---much improvement can be found--

    Best wishes on your quest for wellness--LL
  7. Reg1

    Reg1 New Member

    Love your name, i actually named a guy i worked with before i retired Bigfoot, he love it and after 30 years still uses it. I don't recall anyone mentioning that you should definately see a "Pain Manangement Specialist" they are the doc's who can help your severe pain better. Also aply for SSD. ((((((((((Gentle Hugs))))))))))))) Reg
  8. Bigfoot

    Bigfoot New Member

    Thanks for all the "hang-in there's" and advice. I normally have quite a good attitude about things and life in general, but when it comes to this DD and doctors I find myself getting upset. It's so frustrating when you hit roadblocks everywhere you turn. All I want is to get well, but some doctors make me feel like a loser with their "know it all" attitude and lack of education on FMS & CFS. I've gone through nine months of tests and waiting and tests only to feel like I've gotten nowhere. I DID get a diagnosis, but that's it. I appreciate the listening ears and advice you all give. Thank you. It's great to have this board to come to. I have a wonderful wife that gives me total support, but I need all of you as well. We can almost feel each others' pain when we read the board!
  9. jka

    jka New Member

    sounds like you need to find a new rhumy!there are drugs that help. no- there is now cure. at least not yet.my rhumy has me taking alprazalam for sleep vicoden for pain as needed and mirapex which is a drug he is doing a trial on. its helped me a lot.the pain has backed off. i even have some days when i dont take any pain meds now.there are docs out there who care and will help.maybe go back to your regular gp and he can find you a new rhumy.

    best of luck
    kathy c