Just DX

Discussion in 'Fibromyalgia Main Forum' started by terrisews, Jun 11, 2008.

  1. terrisews

    terrisews New Member

    Went to a rhuematologist today to start a FM dx. I also have connective tissue disease, so I went to the one I was already a patient of. She confirmed the tender points and other symptoms but told me something I'm not quite sure of. She said that FM was a syndrome not a disease and that it was caused by stress. She put me on Lyrica and Darvocet. My dh and I came out of the office, me thinking that I had FM and him thinking that since it was a syndrome and not a disease, it was all in my head and that if I learned to deal with stress better, and take the meds, all will be fine. Now I feel pretty stupid and out on a limb because until today, I thought I had his support, now I'm not so sure. We've been married almost 22 years and he has always been supportive of me especially during a recent back surgery. Seems far - I nursed him through a heart attack. Am I wrong to feel this way? I thought once I got a dx all would start to get better.

    Terri in TN
  2. cookie1960

    cookie1960 New Member

    you have FM. The bad news is you have FM." That's what my dr. told me when I was dxed five years ago.

    The Mayo Clinic considers FM a CHRONIC CONDITION. I don't believe that any health care provider will refer to it as a disease. Stress can trigger your FM symptoms, but not create the condition itself. It is not all in your head.

    Buy the book FIBROMYALGIA FOR DUMMIES and have your husband read it with you. About $12 in paperback form. Real simple terms - so even husbands can understand!

    good luck & peace

    BILLCAMO New Member

    The DX catch 22......and still am. Both for FM and CFIDS/ME.

    As you already know , FM is NOT ALL IN YOUR head.

    Even with the FM tender point test , there is still no definitive test for FM. There is no test for CFIDS/ME.

    It is an illness , a disease , a chronic condition , a syndrome , and a lot of other things. IMHO , it is not caused by stress , but , does create a lot of stress. IT also often creates depression.....not the reverse. Some traumatic injuries do seem to bring it on later.

    You are not stupid or anything else negative , you are just caught in the catch 22 of our DD.

    But , what do I know . I'm just a man with a predominately woman's disease . :>)

    I wish there was some way I could talk to all of the husbands of the women with this DD , but I can't.

    My life has not gotten better since I got sick. But , I still try to do the best I can with what I've got.

    Hang in there !!!!

    Blessings , b/c
  4. DeborahLynn

    DeborahLynn Member

    and have read it in several articles. Stress may be one of the contributing factors, but it is not caused solely by stress, and for most people, reducing stress may help, but it does NOT reverse or eliminate FM. I have learned to deal with stress better, and have taken/tried many of the meds for FM, but I am far from fine; I'm in the process of applying for disability for ME/CFS and FMS.

    There are many protocols, and I have been praying and searching for just the right one for me for years now, spending money I don't have, etc... For me and for most people with FM, it is NOT nearly as easy as your doctor makes it sound.

    Sounds like your husband may be open to learning about FM. Please ask him to read resources you find on line, like info on this board, and you may even have to find another doctor to see. There are doctors out there that don't believe FM is soley (sp?) psychological.

    I see Dr. Craig at Arthritis Associates of Chattanooga, and he is VERY understanding and knowledgeable. You may want to try him, or another doctor.

    Please don't give up; I know I was VERY discouraged when I was told it is psychological, and started to feel maybe I was crazy, but it's not true! FM is a disease, but is a syndrome also, as I understand it.

    As your husband learns more, and you find a good doctor, things will get better as far as being understood. That may not cure you, but being validated sure does help a great deal!

    (I am suffering from dense fibro-fog at the moment, so please forgive me if this doesn't make much sense!)

    Love and prayers,

    [This Message was Edited on 06/11/2008]
  5. Rafiki

    Rafiki New Member

    Fatal Hemophagocytic Syndrome
    Congenital Long QT Syndrome - potentially fatal
    Waterhouse-Friderichsen syndrome - frequently fatal
    Thiopental Mimicking Propofol Infusion Syndrome - usually fatal

    Syndromes run the gamut from benign to deadly just like disorders and diseases.

    Some people are born with syndromes: Down Syndrome (usually good outcome), Short Gut Syndrome (quickly fatal) and some people have syndromes thrust upon them: Postural Tachycardia Syndrome (I bet some here have that) or Complex Regional Pain Syndrome type one formerly known as Reflex Sympathetic Dystrophy (We will probably find that here, too) but it does not mean that people are stressed into having Down Syndrome of die from Congenital Long QT Syndrome because they are neurotic.

    Educate yourself about what ails you and, when you have figured out what the truth of your illness is for you, stand up for yourself. Your husband will likely follow your example if you can manage to set a good one. That's harder done than said. You'll get lots of support here.

    I've had ME/CFS (not FM) for 28 years. I think I've finally got the hang of it :~) It is what it is, I don't have to argue. I live in here; I'm the expert.

    FM for dummies sounds like a very good idea. Your poor husband is probably grasping at straws. This offers him some hope and a feeling of control. If he's always been supportive he'll get the hang of this. You may have to be patient, though.

    Hang onto your optimism but it will be tempered by a big dose of reality. You're not alone.

    Peace to you,
  6. Janalynn

    Janalynn New Member

    Hi there.
    I agree with the others. FM is not 'caused' by stress, but boy is it stressful! Stress can also make your symptoms worse. Stress is a powerful thing. It can affect our hearts, our minds...
    Syndrome - there are a lot of 'things' that are syndromes. Down's Syndrome for one. It doesn't make it any less real.

    A diagnosis will make you feel better because you finally have a name for, an answer to why you're feeling the way you've been feeling. My relieved feelings after diagnosis were short-lived. It took a huge emotional toll on me - it's been almost a year since my diagnosis and I'm still struggling mentally. (I've had Fibro for over 20 years I suspect)I am working on it daily. I've gone through all the stages of 'grief' and have repeated them a couple of times actually.

    Your husband just needs some education. Give him worst case scenarios if necessary, then let him be thankful for what you're living with. My husband 'got it' when I described how debilitating FM is for some people. I would say "Wow, it's so sad what I read today, "x" amount of people are on disability" etc. or "some people cannot get out of bed or in the shower". My husband is a real gem, but for me, I needed him to hear about other people so he had some examples of how serious this is.

    From Wikipedia:
    The description of a syndrome usually includes a number of essential characteristics, which when concurrent lead to the diagnosis of the condition. Frequently these are classified as a combination of typical major symptoms and signs - essential to the diagnosis - together with minor findings, some or all of which may be absent. A formal description may specify the minimum number of major and minor findings respectively, that are required for the diagnosis.

    In technical medical language, a "syndrome" refers only to the set of detectable characteristics. A specific disease, condition, or disorder may be identified as the underlying cause. Once a physical cause has been identified, the word "syndrome" is sometimes kept in the name of the disease.

    The term syndrome derives from the Greek and means literally "run together", as the features do. It is most often used when the reason that the features occur together (the pathophysiology of the syndrome) has not yet been discovered. A familiar syndrome name often continues to be used even after an underlying cause has been found, or when there are a number of different primary causes that all give rise to the same combination of symptoms and signs.

    BTW- other syndromes-
    Irritable Bowel
    Fragile X
    They are VERY real.

    I hope you'll find what you need here- it's a great place for information and support.
  7. terrisews

    terrisews New Member

    Thanks everybody for coming to my support. I'm feeling better about this and have already sat one dd down and told her that as a family we were all going to sit down and divvy up the chores. Oh,yeah, Cookie, I ordered that book.

    Terri in TN
  8. cookie1960

    cookie1960 New Member


    Glad you ordered the book. My husband bought it for me about 5 years ago when I was first dx'ed. Even after 5 years I still refer back to that book! I even took it with me to dr's appt's in case I didn't understand something or had a question.

    Hope it helps you and your hubby!

    p.s. I've also been known to leave it out on the coffee table when relatives or friends visit.

    Knowledge is Power!

  9. kriket

    kriket New Member

    Hi there-

    First of all, I am so sorry that you have been dx with fibromyalgia. One key is a good doctor and one that is very knowledgeable about fibro. You do not need a doctor to make you feel like fibro. is no big deal, because it is. They do not know exactly what causes fibro. so for your doctor to say it is caused by stress makes me question his/her credibility as to what they actually know about fibro. You will find a lot of support here, so glad you found us.

    [This Message was Edited on 06/13/2008]
  10. dragon06

    dragon06 New Member

    I call FM a disease, an illness, a chronic condition but never do I call it (or CFS) a Syndrome. Simply because I do not believe they are syndromes. My current doctor and my previous doctor both share this opinion as well.
  11. lvjesus

    lvjesus Member

    That is all it is. Symdrome doesn't mean better, it just means different. Broken arm, broken leg, too bad either way. If you still have trouble with your dh, ask the doc in front of him next time, what is a syndrome, and how is it different from a "disease"? Or simply ask your dh what a syndrome is. Chances are he does not know. There are a lot of "syndromes". It just means a set of symptoms. Cancer is a disease, it is curable. FM is a syndrome, it it not. I recently had an ovarian cancer "scare" (thought I might have it) but thought my FM might be relapsing instead. Guess what? I was hoping more for cancer than FM, plain and simple. Sounds crazy? Not if you have FM.
  12. terrisews

    terrisews New Member

    Well I started the Lyrica and so far I'm having really good results. My dh has since admitted that he was wrong and life is better here. I had a family meeting with my dh and dds and I think that I had good results - at least the girls did laundry today and I got to sew. Let's hope this lasts!

    Terri in TN
  13. DeborahLynn

    DeborahLynn Member

    So glad your husband seems to understand. I will continue keeping you in my prayers! Have a good night! Debbie
  14. victoria

    victoria New Member

    Just thought I'd post to all the new people here...

    Welcome to the board... lots of helpful people here, and so much to read... the research library up above (white tab, 2nd from left) has one of the best collections of research & articles about CF/FM/ME and other diseases that overlap.

    you might look to look at all the possibilities that may be part of -or the sole reason even- for your dx of ME/CFS. I just bumped it for you and others new to the board, it's titled
    ***CFIDS/FM/ME == OTHER DIAGNOSES to INVESTIGATE== Please add any!

    and here's the direct url you can copy/paste if you don't see it:


    Hope this helps, this will likely seem confusing at first; actually I'm not sure it doesn't ever stop being confusing. But lots of great help and support here.

    all the best,