Just diagnoised and have a million questions!!

Discussion in 'Fibromyalgia Main Forum' started by mommy1325, Oct 13, 2002.

  1. mommy1325

    mommy1325 New Member

    Hello everyone, I was just diagnoised last week after 16 months of tests and pain. I was told I have FM and the doctor gave me neurontin 300mg/2x a day. Does anyone take this medication or have any info? They think that there is more wrong, I had an abnormal ANA ( I have no idea what that means) I have the most horrible pain in my hips that sometimes I cannot walk without help. I am only 29 years old and I feel like I am 80!! This has taken my whole life away and what itr has done to my husband and two kids, I don't even want to think about. The doctors also say that there is some kind of bad in fection in my body that is working itself out through my skin and giving me boiles and abcese (sorry for spelling) on my skin. They also discovered a big knot in my right breast day before yesterday ! Is this common in females with FM? I am also gaining a lot of weight, I have started losing my hair, something is really affecting my teeth, a lot of them are loose and they look really bad around the gum line. Is anyone else doing all of this or am I the only one turning into this fibromonster? Everyday when I wake up I am so scared what the day will bring next! It is never anything positive. Sorry to sound so negative, I guess I am just going through the angry stage that this has to happen to me! I sure you all know what I mean. Also can anyone tell me how to go through my day woth out this horrible illness being my every thought? Thanks so much for listening and I am really looking forward to hearing what you all have to say!
    bye for now
    Stephenie
  2. mommy1325

    mommy1325 New Member

    Hello everyone, I was just diagnoised last week after 16 months of tests and pain. I was told I have FM and the doctor gave me neurontin 300mg/2x a day. Does anyone take this medication or have any info? They think that there is more wrong, I had an abnormal ANA ( I have no idea what that means) I have the most horrible pain in my hips that sometimes I cannot walk without help. I am only 29 years old and I feel like I am 80!! This has taken my whole life away and what itr has done to my husband and two kids, I don't even want to think about. The doctors also say that there is some kind of bad in fection in my body that is working itself out through my skin and giving me boiles and abcese (sorry for spelling) on my skin. They also discovered a big knot in my right breast day before yesterday ! Is this common in females with FM? I am also gaining a lot of weight, I have started losing my hair, something is really affecting my teeth, a lot of them are loose and they look really bad around the gum line. Is anyone else doing all of this or am I the only one turning into this fibromonster? Everyday when I wake up I am so scared what the day will bring next! It is never anything positive. Sorry to sound so negative, I guess I am just going through the angry stage that this has to happen to me! I sure you all know what I mean. Also can anyone tell me how to go through my day woth out this horrible illness being my every thought? Thanks so much for listening and I am really looking forward to hearing what you all have to say!
    bye for now
    Stephenie
  3. karen2002

    karen2002 New Member

    I have just been recently diagnosed as well.....this is a great place to become more informed. Neurontin, isn't on my list of meds, but I know others here take it, and will answer you soon. Before and after my official diagnosis, FM and CFS seemed to occupy my every thought, and action, too. I think that is normal--but I do see that changing with me, now. I have had to adapt my life, and make many changes. Many are positive changes, though.
    I just wanted to welcome you--and say "hi" !
    Best wishes,
    Karen
  4. toots2

    toots2 New Member

    Stephanie, I'm sorry you are having so many problems at such a young age and realize how difficult this must be for you right now. Have you been tested for lupus, which presents a positive ANA on blood tests? Read about it on the net and see what you think. Some of your symptoms do not seem to go along with fibro. I would definitely see a good rheumatologist for a second opinion. Suzanne
  5. SleepyWillow25

    SleepyWillow25 New Member

    Hello Stephenie and welcome to the group. I am sorry to hear that you are having such a rough time in your life. Many of us on the board are going through simular things sadly.

    Well the first step is being dignosed with this Illness. I think not knowing and countless tests is the worst.

    I do agree with another posting to your request (sorry I forget the name) when they suggested seeking a 2nd opion and to check lupus. I will try and explain for you my reasons for this.

    You mentioned that you had an abnormal ANA test. Let me quickly explain this test for you. ANA stands for Antinuclear Antibody.

    As you would know all diseases need to be ruled out and fatigue lasting more then 6 months etc before being dignosed with CFS.

    Most doctors do not do a ANA test unless your clinical history and physical examation shows signs of CTD. CTD stands for Connective Tissue Disease. CTD is consistant with SLE (Systemic Lupus Erythematosus)and a few other illnesses. Such patients usually present with at least a few systoms which is a clicnial Criteria.

    Such systoms are: Arthrities, Photosenstive rash, nerologic signs etc. I forget the rest... (my friend has Lupus, please note i am no doctor).

    A brief discription of Lupus i have pasted from a site that i have in my bookmarks. I will give you a URL so you can go there.

    Lupus is a disorder of the immune system known as an autoimmune disease. In autoimmune diseases, the body harms its own healthy cells and tissues. This leads to inflammation and damage to various body tissues. Lupus can affect many parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Although people with the disease may have many different symptoms, some of the most common ones include extreme fatigue, painful or swollen joints (arthritis), unexplained fever, skin rashes, and kidney problems.

    Although "lupus" is used as a broad term, there actually are several kinds of lupus:

    Systemic lupus erythematosus (SLE) is the form of the disease that most people are referring to when they say "lupus." The word "systemic" means the disease can affect many parts of the body. The symptoms of SLE may be mild or serious. Although SLE usually first affects people between the ages of 15 and 45 years, it can occur in childhood or later in life as well. This booklet focuses on SLE.
    Discoid lupus erythematosus refers to a skin disorder in which a red, raised rash appears on the face, scalp, or elsewhere. The raised areas may become thick and scaly and may cause scarring. The rash may last for days or years and may recur. A small percentage of people with discoid lupus have or develop SLE.
    Drug-induced lupus refers to a form of lupus caused by specific medications. Symptoms are similar to those of SLE (arthritis, rash, fever, and chest pain) that typically go away when the drug is stopped.
    Neonatal lupus is a rare form of lupus affecting newborn babies of women with SLE or certain other immune system disorders. At birth, the babies have a skin rash, liver abnormalities, or low blood counts, which entirely go away over several months. However, babies with neonatal lupus may have a serious heart defect. Physicians can now identify most at-risk mothers, allowing for prompt treatment of the infant at or before birth. Neonatal lupus is very rare, and most infants of mothers with SLE are entirely healthy.

    That information above was taken from the web site:
    (Edited by Moderator)
    I recomend that you read this and get another specialist to take a look. Ask about your ANA test... I find it is good to have a journal near you that you can write EVERYTHING in from how your sleeping, to how your feeling, what your eating and what medication your taking. Then you can show a doctor/specialist a detailed discription of your life. This can be useful in getting added help. It can also be a pain if your too ill to write it. I would suggest doing that for a week or so before seeing another specialist.

    I know the thought of you maybe mot having FM, CFS etc is upsetting as not knowing is the worst. You may have FM but I personally would play it safe and I always ask for a 2nd or maybe 3rd dignose. I certainly would mention the blood test results and your concerns.

    I hope I have not confused you, sorry for the typing errors also. I wish you luck, no matter what happens you made the right choice when joining this support group.

    I will be interested to know what comes of all of this. Please keep us informed we are all here for each other. In the meantime I send you best wishes and hope tomorrow is a better day.

    Love from Australia

    Belle Thibodeau

    xxoo

    PS/ Keep your chin up!!!!
  6. SleepyWillow25

    SleepyWillow25 New Member

    Hey sorry but I got carried away with trying to explain stuff I forgot to mention about the neurontin medication. I have not personally used this but know of people that are.

    Here is a discription i found on the net for you.

    NEURONTIN
    Description: Gabapentin is used to control seizures. The exact way that it works is unknown. However, it is believed that gabapentin alters the chemical impulses in the brain that cause seizures.

    If you go to the libary on this iste immunesupport and type in NEURONTIN you will find information. It should tell you why and how it is used in FM CFS patients. To help you I have copied the link for you here below

    http://www.immunesupport.com/library/cfstreatment.cfm/ID/3343

    All the best!!!

    Belle

  7. jami117

    jami117 New Member

    Hi Stephenie - I have FMS and Chronic Fatigue and have had all of the problems you mentioned. In my case, the weight gain was from the toxins from the infection - my body wasn't clearing them as it should have been. I have considerable gum loss and my teeth wer quite loose. I had been going to a specialist for years for cleanings four times a year. When we finally addressed my systemic infection, the teeth began to tighten and I just go for regular cleanings now once per year. I also had considerable hair loss. My doctor speculated that the infection in my digestive tract was keeping my body from using the nutrients in the food I was eating. That also showed up in my nails being very soft and splitting, and in the course texture of my skin. Again, after working on the infection for a couple of years, my hair is slowly filling in, the nails are hard, and the skin texture has improved. I still get odd rashes and ulcerations. It's somewhat entertaining since it seems new ones occur each time. I basically try a topical cortizone cream on them for a while before I bother my doctor with them. I do note them to mention to her during our regular appointments. She has been treating me with a combination of prescription drugs and nutritional supplements. I hope knowing that the fibromonster can be exorcised is a help! Jami
    [This Message was Edited on 10/14/2002]
  8. Mikie

    Mikie Moderator

    Welcome to our board. I'm sorry you are having such a rough time of it right now.

    Neurontin is often a good med for us. It helps with sleep and getting good quality sleep will eventually help with pain. In the meantime, you need something for the pain. If this doc is not willing, see a pain specialist. ANA tests are always run to rule out Lupus, but we often have slightly elevated ANA's without having Lupus. Hair loss is often connected to hypothyroidism. Our blood levels of thyroid can be normal, but our bodies may not be able to utilize the hormone. See an endocrinologist who can look into that for you.

    I don't know what the knot in your breast might be. Be sure to keep on the doctors to find out.

    You have just been given a diagnosis for an illness for which there is no cure, but you can manage the symptoms. What you need to know is that most docs do not know enough about FMS or CFS to adequately treat it. It will be up to you to learn about your illness and the treatment options. You have come to the right place here. Our members are extremely helpful. We have a library with thousands of articles by experts in our illnesses. Bless you and good luck.

    Love, Mikie
  9. Scoobsmom

    Scoobsmom New Member

    Whew!! I too am on the Neurontin, weight gain...oh yeah! The other symptoms I thought (hair loss, sensitive teeth) are also on my list of complaints... I am 38 and and a mom of a son diagnosed with Aspergers, so I too get scared! I have been learning that the pain can get much worse when the weather changes and if your in a stressful time (which aren't all mom's in a stressful time?) Sitting/laying/inactivity can also make it more achy and stiff... You will find much wonderful information from this website.. It is very helpful... I can tell you the more informed you all the less alone and scared you will feel. I will lift a prayer for you and trust that you feel better knowing that others are right along side of you..God bless..hugs and smiles...Barb PS it is normal to get angry/frustrated/and sometimes real sad...
  10. PROCTER

    PROCTER New Member

    HI STEPHENIE, I HAVE FMS I ALSO GET TROUBLE WITH MY TEETH, I HAVE GOT SJGOEN<S SYNDROME WHICH MY MOUTH AND EYES ARE ALWAYS-----AND I MEANS ALLWAYS DRY .I DRINK LOADS OF FLUIDS. I HAVE HAD TOO VISIT THE DENTIST QUITE A LOT THIS YEAR. I ALSO AM LOOSING MY HAIR. YOU DO LEARN TO LIVE WITH FMS ITS JUST SOME DAYS YOU GET SO FED UP

[ advertisement ]