New here need friendship

Discussion in 'Fibromyalgia Main Forum' started by jacquiblu, Jun 27, 2006.

  1. jacquiblu

    jacquiblu New Member

    Hi I'm new and sure would like some input. Boy where do I start? I got diagnosed with fibromyalgia less than 6 months ago. Before the diagnoses I had other health issues and tried getting Social Security disability. They denied me. So I will start from the beginning. I had a car accident in 2002 and got whiplash. My neck was already messed up. I have degenerative disk disease. Other health issues are depression, hiatal hernia, allergies (hives), obesity, hypoglycemia, sleep apnea, eczema. I've always worked hard and am not a lazy person. What's bothered me most is, I was working retail as a cashier and bagger. My legs were killing me. Even though I used my c-pap for the apnea I was still exhausted and getting more so. I was falling asleep on the road. I went to a sleep specialist and he told me I jerk all over my whole body and it does not fit the profile of restless leg syndrome. He's not sure what it is. So I got zero help there. He gave me temazapam for it and it really does not help much. I was on a leave from work for a year. The leg pain continued and got worse when I was on my leave from work. Now that a year is up I had to quit my job and I haven't worked now for over a year. I'm 44 (soon to be 45) years old and I feel 100. My weight has ballooned up to over 300. My legs kill me more now than ever and my feet and ankles are swollen. I took a test and was told I have carpal tunnel in both wrists. The pain in my body and joints is so bad I'm on methodone. The stress from me not working is horrible. My husband works part time and is disabled himself. He gets RSDI from Social Security (which is not enough for anyone to live off of) and he's allowed to work p/t. His legs have been bothering him (cellulitis chronically) and he ends up in and out of the hospital. So I've got the stress of my husband's illnesses and the financial end of it plus my health issues. I was forced to quit my job because I can no longer stand on my feet and work. I was told I could get a sit down job (by SSA) and I told them I am very tired from the fibro and the methodone for pain about knocks me out. I can barely get in and out of my bathtub because of the pain. What concerns me is the chronic jerking. I have this even when I'm awake. My limbs jerk like my legs or feet or hands. That is freaking me out! My sleep is still really bad. I wake up constantly throughout the night and feel like hell in the a.m.

    Anyhow..anybody that is going thru a similar thing I would sure like to talk with you, even in private. I applied for disability again stating I have a new diagnoses (the fibro) and the pain in my body. I don't know what is going to happen. Is anyone here on disability and how many times did you have to apply or did you have to go to court to get it? Or did you get an attorney to help?

    My husband moans and groans everytime I do. He's like a baby. When I hurt he says oh I hurt too. He won't help me do anything and it makes me mad.

    Thanks for listening. I hope to make some good friends so we can share and help each other with all this.
  2. JewelRA

    JewelRA New Member

    Your symptoms will sound very familiar to a lot of us here. You are not alone.

    I just got diagnosed with FM this month after a year of excruciating pain and feeling like I was losing my mind. Well, I still have pain and feel like I'm losing my mind, but at least I've got a name for it now. LOL.

    I am sorry for all your pain, and that your husband doesn't seem to understand. I don't think anyone who doesn't have this can understand. It's awful.

    But I'm glad you found this board. Not glad you have FM though.
  3. CockatooMom

    CockatooMom New Member

    So sorry to hear you are going thru all of this! You came to the right place for support and answers. So WELCOME!

    I have fibro and many other ailments too. I jerk all day and all night from various parts of my body. The knowledgeable folks on here have told me it is called "myoclonic" something or other.

    But, I also experience restless legs once in a while.
    The jerking doesn't really bother me during the day, I'm used to it. But my husband told me that I sometimes keep him awake at night by jerking and jumping.

    I'm getting ready to walk out the door to go see my doctor for an extended visit to talk about all this junk. If I get any other info, I'll post another message on this thread.

    In the meantime, hang in there and remember you are not alone now.

    Best Wishes.
  4. romanshopper

    romanshopper New Member

    I am fixing to apply for my disability. I've got to talk to my doctor and get him to support me. Then I'm going to get a lawyer to handle mine. They can have 25%, I don't care. All I know is that I have been unable to work for 2 years and I need some doggone help.

    My husband has been supporting us, but I had a rather high income and it has been very rough to lose it.

    I am afraid they will say I have too much education to get disability. I never thought going to college would hurt me if I got sick.

    Of the 7 days this week, I've been in bed for 4 of them nearly all day and have had severe brain fog. I felt great yesterday morning, made a trip into town, got in the library and nearly died from pain. It just hit me out of the blue....and back in bed again. I felt like I was just going to DIE if I did not get someplace to lay down very quick. I lay in bed in PAIN for 5 hours, took extra neurontin, then I was ok again for a few hours, then back in bed. UG.
    [This Message was Edited on 06/27/2006]
  5. Lolalee

    Lolalee New Member

    You will love this message board. It is a great place to give and receive support.

    One of the things that most of us don't realize when we are new is the fact that it is very difficult for most of us to read a post without paragraph breaks. Too many words run together are hard on our eyes.

    Would you please insert paragraph breaks into your post?

    Thank you and welcome!!!

  6. Cromwell

    Cromwell New Member

    and ditto re going back to edit and make some paragraph breaks. Thanks a lot. Sorry you are suffering so. We are a great bunch here.

    Love Anne Cromwell