Diagnosis? Or Not?

Discussion in 'Fibromyalgia Main Forum' started by moreconfusedthanever, Aug 26, 2003.

  1. I have not officially been diagnosed as a sufferering from CFS/FM . However, I have been 'sort of' diagnosed by one Dr as having 'post viral symptoms', although the Dr I've seen since doesn't really seem to work on that basis and focuses on IBS symptoms. I have a range of symptoms (gastro, muscular, aches, fatigue, poor stress coping) which fit in with CFS/FM. I'm not trying to say I have CFS/FM, as such, but it's the closest thing I've had to a diagnosis from a Dr and I have not had anything else diagnosed - they don't question my having symptoms, they just don't seem to be clear on what might be causing them.

    How many people here have been officially diagnosed with CFS/FM? How long did it take after symptoms started to getting a diagnosis? is there anyone in a similar situation to me who thinks they might have CFS/FM, but have not been oficially diagnosed as such, or diagnosed with anything for that matter, despite having evidential symptoms?


    [This Message was Edited on 08/26/2003]
  2. MissyTx

    MissyTx New Member

    I started going to Dr's in 1994 with symptoms and was not Dx until Sept 2002! I can relate to what all you are going thru, but don't give up!!! Just hang in there.

    Try calling around and questioning Dr's in the internal and rheumy fields and question the nurse about how many of them treat CFS/FM patients. This is a start at least!

    Good Luck! My prayers are with you!
  3. RoseSky

    RoseSky New Member

    I haven't been officialy diagnosed CFS yet either, but I have 2 drs that have listed it as a possibility. When I first started going to the dr, they gave me a list of possible diagnosis - one of which was CFS. Since then blood tests have ruled out everything else on the list. No one never actually came back and said that since all of my tests were negative so I definately have CFS - they just started treating the individual symptoms.
  4. IgotYou

    IgotYou New Member

    I've been seeing doctors about my symptoms for six years. I was just diagnosed a month ago. I even underwent some psychological counseling to deal with my "symptoms of stress", as well as physical therapy to try to relieve the pain in my back and legs! I knew something else was wrong and I kept going back and complaining even though I knew my doctor must think I was a hypochondriac. She finally referred me to a rheumatologist, who, within ten minutes, said, "sounds to me like fibromyalgia." A couple weeks and a few tests later (to rule out autoimmune and other conditions) and I had my answer at last! Don't give up looking for an answer. If you need to, seek a referral to a rheumatologist. They know what to look for better than your general practitioner.
  5. Pindooca

    Pindooca New Member

    I was seeing a nurse practictioner at my doc's office that I really liked, but when I would tell her about what were my symptoms her answer was to always tell me to go on a low fat diet and lose weight. She even pushed the weight loss drug phentermine on me!!! :(

    Fortuantely, my insurance changed and that provider would no longer cover that doctor. I chose a new doctor my insurance covered and decided to tell him on DAY ONE the entire gamut of my symptoms. He didn't bat an eyelash. He poked a few of what I now know are the tender points and asked if it hurt here, here, here. He asked me how I was sleeping, which really surprised me. I was diagnosed with Fibro on my first visit.... this after 5 years of pain and fruitless complaining to my old doctor.

    My current doctor is an osteopath (D.O.) But so was my other doc :(
  6. kholmes

    kholmes New Member

    No diagnosis yet for me, either. I've been struggling off and on with this for twelve years, although I have been able to work and be active for much of that time. I suspect CFS (without FM), although no doctor has given me that diagnosis, but this is based mostly on my own research. All of the blood tests don't reveal anything, but I have found a good doctor who suspects CFS as well. I almost envy those who have been diagnosed.
  7. Susan07

    Susan07 New Member

    This is one problem you have to diagnose yourself!

    I knew from an article I read in 1988 that I had FM but wasn't officially diagnosed util the late 90's. That was after numerous tests that ruled out a multitude of "real" problems.

    Even my recent start with a rhemutologist said "fibromyalgic-like" symptoms - what the heck does that mean?

    Keep trying, sooner or later you'll get a diagnosis. I agree with someone else that said before you go to a doctor ask the receptionist if they treat fibro/cfs. You'll rule out alot of docs!
  8. Hi all,

    Thanks for your replies. When I read them, it's like reading what's happened to me. One of the ones which struck a chord the most was about Drs who focus on treating individual symptoms and ignore the bigger picture. They act like it's perfectly normal to have this myriad of symptoms - why do they not realise it isn't???? I think they take one look and think "looks fine to me"; even Drs can't see beyond the fact that you din't appear "ill".

    Nobody wants to have a condition or illness, but if like many here you have sympyoms, you just want to know why and getting a diagnosis of any sort would at least provide some degree of security. The uncertainty is the worst thing.

  9. Hi Cindylou,

    Can you please tell me where you got the test? Is it on the Immune Support website?


  10. CelticLadee

    CelticLadee New Member

    Hello MCTE,
    I have been sick since July 2002 with CFIDS/FM type symptoms. I have been through almost every test imaginable and even had an exam for FM by a GP & a Rheumy on seperate occasions. Been going to a ND for any real help. The GP suspects FM, the Rheumy was confused and wanted to do a bone scan for costochronditis and the ND treats my symptoms. Went to a neurologist who told me my headaches were perimenpausal and had nothing to do with my other symptoms. (so just ignore them HUH?!) The ND doesn't want to use the label CFIDS as he says that isn't accurate. The GP wants me to take anti-depressants so I can sleep and eliminate pain. My pain isn't so bad that I want to take drugs yet. So after blowing my savings account on doctors and tests I still have not been diagnosed. I am totally frusterated with the whole system and this disease so I know how you must be feeling. If it wasn't for my ND treating my symptoms I don't know what I would have done the past year. At least I am feeling better than a year ago. Once you run out of money it puts a major blockade in front of you to get a diagnosis and that is frusterating too. I often wonder what damages are going on inside me without a proper diagnosis and treatment. This bothers me a lot. But not enough to sale my house and car. LOL.
    Well, laughter is the best medicine and its free!
  11. Hi Cindylou,

    Thanks for posting this info - I really appreciate it.

  12. Myth

    Myth New Member

    I have had symptoms for years and years. I would say the trully FMS symptoms started at the age of 12, whereas before that it was hympermobility syndrome pain. Anway I was ofcially diagnosed when I was 20. I have been tested for everything under the sun; from thyroid problems, RA, Lupus and diabetes. The first time I was sent to a reumy specialist I was 16, and at that time I was where you are now- I had all most of the major symptoms but it was not conclusively FMS although he put in my file that it was quickly becoming so. After that I was diagnosed with many odd chonic conditions that were seemingly unrelated until anouther doctor thought I had RA (again) and sent me to a specialist (again) and by that time it was abundantly clear I had FMS. And by that time I already knew that was what it was, because my dad has it as well. A rumatologist is the specialist you need to see in order to be diagnosed. The thing is that they base the diagnosis on the tender point thing, so you have to wait until the symptoms get severe enough for a diagnosis to be made- in the mean time they will exclude many many other things, which is of course good since these symptoms are common to many other conditions.
  13. Mikie

    Mikie Moderator

    It's just another way of saying it. Go to our library and read some of Dr. Cheney's articles; he's an expert on CFIDS. There is one article about the three stages of CFIDS. The problem isn't what your doc is calling it; it's whether you are getting any treatment. CFIDS is much easier to heal in the early stages with aggressive treatment. If you wait until you are practically bedridden, it will be much more difficult. Learn all you can about this illness.

    Love, Mikie
  14. joycem

    joycem New Member

    I had a doctor who took almost all of the 15min. visit just to read my chart. I could hardly ask any questions before he was trying to get out the door. He did however take a blood pannel, and said I was border-line Lupus. He was so casual about it. I diden't think any thing about it. And was to scared to ask, because he made me feel like he was in such a hurry to get to the next patient. I diden't even no what Lupus was. I causally told a family member about the Lupus. She told me how serious Lupus was. I changed Doctors right away. I think god was with me, and gave me my new doctor. I told him what my last doctor said about my blood work. He orderer more test, and said they showed border-line also. He sent me to a Rheumatologist. And he was the one who diagnosed me with cfs/fm. I diden't even no what fibro. was. That's how dumb I was. I had been told by so many doctors that the pain, and all the symptons I had was nothing. Nothing ever showed up in any test's they took. So it was all in my head. And I was begining to believe them. They cured me with nerve pills. They all made me feel like I was making things up or something. Happy to say, now I have a doctor that is up to date with fibro. and all the symptons that go along with it. He also treats other patiences with the dd. And keeps a check on the blood work for Lupus. So far so good.
    He has supported me with getting my ssd. that was in 1998.

    I also feel that a Rheumatologist is the doctor that can make the officiall diagnosis. Has anyone else gone through this?
  15. duketomato

    duketomato New Member

    to refer me to a rheumy.I have been diagnosed with chronic myofascial pain syndrome.My initial doctors could not figure why I was not responding to their treatments(trigger point injections,physical therapy,surgery)so they sent me to a shrink for depression.I got SSDI and stopped going to doctors for awhile.I could not see going to a shrink when all they did was give me anti depressants and I told them as long as I was in pain/sleeplessness and could not function anywhere close to a normal or regular existince all the anti depressants would be useless. I believe around 1998 I saw a Dateline program on FM and it basically described my life.I could not find a doctor to take any interest in this condition.I still make the mistake of getting the earliest dr. appt. I can(usually 8-9 a.m.)because that is when I feel I would actually go.If I made the appt. later in the day I would look extremely different as the pain and fatigue get worse and probably cancel the appt.In 2001 my mother started complaining of pain all over ,no sleep, and other FM symptoms.I told her that she most likely had what I had and told her what the dr. would do. Well lo and behold she was diagnosed with FM and the doc put her on elavil and physical therapy.I just wish I could order tests for myself so that I could try to get some help.I have very bad insurance and can not find a good doctor that my ins. co. has on their list.I am putting the medications I am on now on a credit card as it is so finding a dr. outside of the ins co. is not possible in the near future.