How can adult son get diagnosed with FMS?

Discussion in 'Fibromyalgia Main Forum' started by Cakedec, Jun 19, 2006.

  1. Cakedec

    Cakedec New Member

    I have had FMS for about 12 years, my grandma and father had it, and now my adult son, 25, is showing what I think are signs of it and can't get diagnosed. He is home from work today not able to function. We've been dealing with this since he was in college; but it is a big problem for him just continuing to work now.

    He has always had a sleep problem; also gets the aching muscle thing. They tighten up so that he can hardly walk normally; kind of walks with what we call his "frankenstein walk". Mentally he feels really out of it, dizzy, etc.

    His regular dr. referred him to a sleep specialist who did the sleep study and gave him the CPAP machine; which he has had very little help from. He recently was referred to another sleep dr. who wants to do a narcolepsy screening, etc. Matt has tried to mention to these drs. that FMS runs in the family, but they do not seem to want to look into this or give him any sleep medications.

    My question is this, are we barking up the wrong (medical) tree, so to speak, as far as trying to get this diagnosed? Should he be trying to get into a rheumatologist or another type of dr.? He has insurance where he can go to any dr., but the rheumies I called all seem to need referrals from another dr. to get in.

    Any help in how to proceed will be appreciated. I have already tried getting him on magnesium and malic acid (stopped migraines) and we have tried valerian and deseryl for sleep, but doesn't seem to do the trick.

    Deb
  2. kirschbaum26

    kirschbaum26 New Member

    Dear Deb:

    Are you happy with your doctor's treatment of your FMS? If so, can your son see your doctor, or another doctor in his/her practice? Typically, if you are able to show the doctor the family connection, it might help them make a dx.

    If that is not possible...can you go to his doctor with him and request a rheumatologist referral...to rule out other potential problems. If you do not see a rheumatologist, then ask your PCP to give you the name of one who 1) believes FMS exists and 2) has FMS patients.

    Good luck to you and your son.

    Ingrid

    [This Message was Edited on 06/19/2006]
  3. Cakedec

    Cakedec New Member

    The reason that I haven't gotten a referral from my own dr. is that my son lives in a different city.

    Banya and kat-e -- I never thought that having fibromyalgia as a diagnosis was such a negative thing because when I got it, finally there was some treatment -- the doctors would prescribe medication and got my sleep cycle regulated. It enabled me to have a name for the disease so I could find websites like this one which has helped me so much!

    So far the drs. have NOT been treating my son's symptoms. He can barely function; we are worried about him losing his job and health insurance and coming back home disabled at the age of 25 for us to support along with our 15 and 20 year old! He has not even been in good enough shape to get his cpap machine face mask replaced or arrange for any of the labwork which the sleep dr. wants. He just keeps forgetting the appointments because of the brain fog or cancelling them because he hasn't done what the dr. requested. Plus now I am worried about depression, which also goes along with this DD.

    I would probably be told that it is not appropriate to go to dr. appointments with my son at his age, but if I am the one who will have to pick up the pieces and support him (even though I have FMS and severe scoliosis) then I will march into the dr's office also.
  4. kirschbaum26

    kirschbaum26 New Member

    Dear Deb:

    I have discovered that my doctors all know other doctors in different cities and they would have no trouble providing me with another doctor if I were to tell them I was to be moving to another city. My doctors actually attend conferences and meet other doctors in different cities and sometimes even compare treatment options.

    Still worth a try to ask your doctor if he/she can recommend a doctor for your son in the other city. If he/she does not know, doctors ALWAYS know who to ask. You might also ask the same people that I always ask...nurses. While they might not give you a "referral" if you ask them if their mother/brother/son/sister/daughter, etc lived in XYZ city, who would they tell her to see.

    Just a thought. That is how I got my daughter's pediatrician.

    Ingrid
  5. kirschbaum26

    kirschbaum26 New Member

    Dear Deb:

    I have discovered that my doctors all know other doctors in different cities and they would have no trouble providing me with another doctor if I were to tell them I was to be moving to another city. My doctors actually attend conferences and meet other doctors in different cities and sometimes even compare treatment options.

    Still worth a try to ask your doctor if he/she can recommend a doctor for your son in the other city. If he/she does not know, doctors ALWAYS know who to ask. You might also ask the same people that I always ask...nurses. While they might not give you a "referral" if you ask them if their mother/brother/son/sister/daughter, etc lived in XYZ city, who would they tell her to see.

    Just a thought. That is how I got my daughter's pediatrician.

    Ingrid