A Cry for Help...From a Patient with CFIDS/FMS

Discussion in 'Fibromyalgia Main Forum' started by MelG, Dec 31, 2002.

  1. MelG

    MelG New Member

    I’ve been lurking for a few months because I think I have been in denial since the diagnosis.

    I just wanted to introduce myself. My name is Melanie, I am 40 years old. I no longer work. I was recently awarded Social Security disability benefits in less than a six week time frame, without an attorney. I think my medical team used something like multifocal regulatory dysfunction. I have always kept good medical records and have documented all the strange symptoms so I’m sure that helped.

    CFS/FMS has tried to destroy me mentally, physically, emotionally and financially. Sometimes I feel like I have a form of cancer that is slowly eating me alive.

    I was diagnosed in February 2002 with CFS after an upper respiratory infection, then with FMS in March 2002. I am hoping that sharing this information may help someone. Perhaps some one will read this and be able to identity with some of this or maybe there is a doctor lurking who has some theories to offer us. I am always open and willing to listen to “new theories” regarding this disease we have. I have read them all.

    I have a past history of episodes of migraine, cluster headaches, dizziness, double vision, numbness/tingling, allergies, allergy/bronchitis related asthma, bowel and bladder problems, infertility, twin in-vitro fertilization miscarriage (Turner’s Syndrome/Trisomy), Mononucleosis at age 14, Chicken Pox at age 21, and the all too famous Epstein-Barr in February 2002. For the last few days I have had some mild skin lesions which, so far, 2 doctors have not been able to identify.

    Past history of poor blow flow to uterine cavity repeatedly demonstrated by Doppler ultrasound during infertility procedures, diagnosed with Ischemic Colitis (related to poor blow flow – they found dead cells on biopsy from an emergency colonoscopy) in 2000, Idiopathic Edema (unknown fluid retention, suspected leaky capillaries) August 2001, severe Irritable Bowel Syndrome, October 2001,

    A history of mixed anxiety/depression. Although no one specific diagnosis was every achieved. I remember being told in 1995 that I was “stuck in the flight or fright response” after having an adverse drug reaction to Pamelor. (They were using this in an experimental setting for headaches at a prominent medical university in my area). I remember sitting in a chair in my kitchen with a heart rate of 190. From what I was told later, I came close to cardiac arrest and suffered tachycardia for many weeks after this event. It felt like someone had shot me full of adrenaline. It was an extremely frightening experience and I assure you not of a euphoric nature; neither Bipolar I or II. Subsequently, we consulted attorneys who told us it would be difficult to prove permanent heart or brain damage from the reaction.

    I would strongly recommend everyone be aware of what a doctor is giving you before you take it. I learned this the hard way. (Currently mental diagnosis is “Adjustment Disorder”). How appropriate <grins>.

    I do smoke, about a pack a week. I have quit many times, only to start again months later. I have found that during the last three months nicotine cravings are worse then ever but the smell of smoke is not pleasing to me, nor is the taste of the cigarette. This is a terrible addiction and IMO, should be a controlled substance.

    I do not abuse alcohol or drugs, although I have smoked marijuana in high school.

    To further confuse the situation, I have scattered brain lesions (hyper intensities) on MRI, which makes my neurologist suspect possible M.S., although I am not on any of the M.S. meds. He and his partners are of the "wait and see" mentality. Lumbar puncture, EEG, etc. etc. was normal.

    I also have a hand full of blood abnormalities (levels just a little off but not significant enough to warrant a diagnosis of anything. i.e. low platelets) and a positive ANA (1:40 speckled).

    I have a good support team; psychologist, psychiatrist, chronic pain specialist and rheumatologist, who have been sympathetic and supporting with management of all the symptoms as well as the severe psychological impact and stigma that these illnesses inflict on us.

    The last three months have been hell. I've had back to back viral infections since October. Every time I seem to get close to a somewhat manageable level of pain and fatigue, I get another viral infection.

    Now my husband and 2 1/2 year old son are starting to exhibit some of these symptoms.

    For me, the most physically and psychologically distressing symptoms are the continuously swollen lymph nodes in my neck and sore throats, not to mention, of course, the relentless pain, numbness, tingling and burning.

    I am on various medications which help to lesson the symptoms but to be truthful, nothing really helps significantly, other than potent pain medications. We all know that is a can or worms, but sometimes what are the alternatives? Changes in diet and gentle stretching do seem to help. But I do mean gently. I laugh when someone says aerobics. Yeah ok, right after I figure out how to learn to stand or walk for more than a few minutes.

    I tried traction for a herniated disc in my lumbar spine. Felt great at the time but Thanksgiving day I couldn't walk from pain in my legs/feet. I'm supposed to start deep warm water therapy, whatever the hell that is. I also have a laundry list of home medical devices to help (TENS, foot massager, moist heating pad, hand held massage, shower massage, etc. etc.)

    I am not overweight. I do eat healthy. Prior to February I was extremely active; amusement parks, fly fishing, swiming, biking, racketball.

    If my insurance company would pay for accupunture or biofeedback I would do it in a heart beat. I am open to alternative therapies but proceed with caution with "break throughs" promising to cure all this.

    I went from a young woman, who recently adopted a child, filled with joy, after many years of infertility, who loved amusement parks and fly fishing to someone who needs a bath chair now to even take a shower.

    I just want to reach out to someone, somewhere, who understands what life is like living with this. It doesn't take very long before friends and family get tired of hearing about it.

    Wishing you all, peace, happiness, better health and hope
    for the upcoming New Year <hugs>
  2. Shirl

    Shirl New Member

    Hi Melanie, welcome to our world. Wow, it would take me some time to digest all that you have written. You sure have been around the block a few times, haven't you?

    I am truly sorry you have so much to deal with at one time, and I hope you find what helps you soon.

    We do have some wonderful members here, and I know you will make some lasting friendships with people who do understand how you are feeling, and can relate and be supportive.

    Yes, normals do get tired of listening to us, they simply can't understand the pain if they don't have it themselves, not to mention all the other symptoms you have.

    I have had Fibro for 20 years, kept it to myself for almost all of that time, but now I learned to pick my friends, and rarely tell anyone I don't know well that I have a problem with my health.

    I have been 80% better in the almost two years that I have been on this board. The people here have it all over the medical profession!
    They tell you from personal experience what works for them, and what does not. Can't beat that, stright from the 'horses mouth' so to speak!

    Again, welcome to the board, hope we hear from you often, and you also have a wonderful healthy pain free New Year!

    Shalom, Shirl

  3. UmiBear

    UmiBear New Member

    Hello Mel, thanks for sharing your history. Wow. I only have FMS and think that's alot to deal with, so my hats off to you for handling so much. You sure do sound like a survivor. I'm encouraged by what you said about getting SS Disability so quickly. I realize your situation is different than mine, but it's still encouraging to hear that it can be done. I just submitted my paperwork. I have found this message board to be very helpful. It's good to share and know you're not alone. Also, anyone with FMS knows they MUST do their own research to find out about the disease. Hearing other people's stories and how they cope is helpful. You're so right about family and friends not always understanding. I think we can all identify with that at some point while dealing with this illness. But our family and friends also help us, as I'm sure you know. Well take care, and hang in there!
  4. catgal

    catgal New Member

    Hello Melanie~~I'm so glad you joined us. This is a Wonderful place to be understood. Here, you can cry, rage, ventilate, appreciate, share, grieve, be listened to, learn, inform, and most of all--be understood. All of us share the many moods, adjustments, and transitions that go with our illnesses. Thank you for sharing your history with us.

    I am 53 years old and have had FM/CFS for 35 years; asthma, allergies, & IBS since birth; osteo, psoriatic & rheumatoid arthritis, psoriasis, and degenerative disc disease.

    I am a psychotherapist and work three days a week. Though I often find it difficult to continue to work and find myself envying those on disability--I love my work and find that helping others keeps my mind off all my aches & pains and gives me a feeling of accomplishment, purpose, and still being in the game.

    I hope you will continue to come to the Board. It is a tremendous source of support, encouragement, knowledge, and is open 24/7. Even in the wee hours of the morning when you can't sleep--there is usually someone on you can talk to.

    Take care, and I wish you the Very Best of the coming New Year! Carol....
  5. griswoldgirl

    griswoldgirl New Member

    Your list of symptoms over the years sound a lot like mine. I am 43 and have been diagnosed with CFS years ago and FMS in about `95. I have two kids and a husband and I was super mom and worked full time with this DD until a recent knee injury and the 3rd surgery in 3 years put me out for the count.

    suffered from endometriosis for years-had hysterectomy in 99--herniated disc in 2000 = c-spine fushion of c5,6 and 7 and now tore my ACL and meniscus. Had orthoscopic surgery in September and am still recooperating. This one through me into a long flare and deep depression.

    I am doing much better now than I was a couple of months ago. I was so depressed I did not even come and post much anymore.

    I want to welcome you to a great place. some of us had a Christmas card exchange and I received 20 or so cards from the ladies that I have been chatting with for a year or so. It is a great place to build friendships and support when needed.

    again welcome aboard!!

    cathy aka griswoldgirl
  6. Sandyz

    Sandyz New Member

    I just wanted to welcome you to the board. You have a lot
    on your plate to deal with. Everyone here understands and
    can sympathize with you. People come here with a lot of suffering. I think you`ll find a lot of comfort here and
    a lot of good information that will help you alot.

    Hugs and wishing you a Happy New Year also,
  7. karen55

    karen55 New Member

    Welcome to the board. I noticed you mentioned that your husband and son are having similar symptoms. Is there a possibility that there is mold or something of that nature in your environment that's causing some of this?
    There's been a lot of discussion about toxic mold on a parenting board I belong to and there's a history of sensitivity to it my own family, so I've recently become very interested it. Just a thought I decided to throw in. Otherwise, this is a great board for support and information.