VERY IMPORTANT TO EVERYONE, A MUST READ!!!

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lillie8, May 1, 2004.

  1. lillie8

    lillie8 New Member

    A couple of days ago I asked on the arthritis siteif anyone else had a red rash on neck and chest that appeared to be V shaped. This has solved the mystery of my illness that has plagued me most of my life.

    I was diagnosed with FMS and CFS in 1988, I now know that I don't have FMS or CFS; and I never did. But now I wish I did. I have never believed that anybody is in pain or fatigued all the time for nothing, I knew there had to be something wrong somewhere that the doctors were missing. I have had that redness on my chest for years and no doctor had ever noticed it. I never sought treatment for it either, because it never bother me except it is ugly. I have been in too much pain and chronically fatigued to worry about a rash. I realize my story here is long, but maybe it will help someone. So please bare with me.

    A year ago the night before Good Friday late at night I became unable to breath and my husband took me to the ER where I received a breathing treatment and a prescription for an antibiotic and predisone. The ER doctor said I had bronchitis. I went home to my bed for a week unable to do more than make it to the bathroom. I struggled with the breathing problem until the predisone kicked in. My own family doctor could not see me until the following Friday I was sick like I had never been in my life and the weakness was unbelievable. I did not have a cough at all. I barely was able to walk into the doctor's office and when they took me I was hyperventilating and the doctor did an EKG and ex-ray, nothing was in my chest and I wasn't having a heart attack. He put me on the Zpak and I was able to drag myself back to work.

    As some of you know that has read my profile that I am in the insurance business. My first appointment that day was with a client that lived on a hill and I had to climb several steps. I don't know where I found the strength but I had never hurt so much and had suffered such weakness. I saw my family doctor once a month up until January when I fired him. I was so weak and my white count kept rising each month when he got blood work check me for thyroid, b12, aneimia, etc. He didn't even notice my blood count rising each month. Damn him, should have noticed, but he was to busy telling me, I wouldn’t believe how many people were drug seeking. Remembering back to Christmas time when he ordered the test for the B12, I begged him for a B12 shot, as I had no strength. He said no he would not give be a B12 shot unless the blood work said I needed it. I felt so belittled and humiliated. By this time I was no longer able to use my vacuum my floors and my vacuum is self propelled all my strength was just consumed by just moving from one sitting place to another.

    That week on a Saturday night my husband again took me to the ER; another breathing treatment and ex-ray, got another antibiotic. This time the doctor prescribed Doxcycline and in three days I was again able to vacuum my floor. But things were different, at time I have to yawn or cough to take a deep breath and oddly enough I noticed I am having trouble swallowing. Suffering with the incredible weakness in my legs and hips when I climb my stair steps pain so bad I could scream and being so whipped from just walking from one room to another; I got a new Doctor who is wonderful.

    I asked my old doctor to send my medical records and signed a release form. My new doctor said; “ he never relied on another doctors, reports he wanted his own blood testing done.” That was 2 months ago in the mean time; I have had an MRI to check for spinal stenois and ex-rays of my back, neck, hips, etc. I ALSO have osteoarthritis which the doctor said came from strep snd also caused the disease that I do have.

    Blood work came back negative for Lupus, Lyme, and RA.

    Then the doctor told me about a bunch of other results. The only one that I could remember was my sed rate 134, so he doubled my pain medication ultrum, increased my Strattera for the ADHA told me to take Tylenol for arthritis and added a thyroid medication come back in three months. He said he was concerned about my blood work and if he didn’t see a change he was going to send me to Pittsburgh.

    Last week I noticed that the rash on my chest was up to my chin line and didn’t even notice it happening. Then I asked the question on this site and one of you told me to google Dermatlas. I found my rash and also found how very sick I am. Thank you for this board.

    I have Dermatomyositis which is supposed to be rare I immediately called my doctor who ordered the blood test, but we are both sure because I have the Shawl rash and the other blood work that he had done was now making sense.

    Ironically when I went to have my blood test done the tech that took my blood was telling me she and her sister both had FMS and her sister was almost bed ridden with CFS. She was surprised by the test that were being order and one them I have to go back for because they couldn’t figure it out. I told her about my rash on my chest and neck. She also has the same rash exactly like mind like the picture on Dermatlas, she copied my blood order to take to her doctor. Now I am wondering just how rare is this disease and are our doctors doing the right test or just dumping us in the FMS bucket.

    If anyone might be curious google Dermatomyositis. Ask your doctor to order the tests if he won’t go to someone else who will.

    I am so afraid that the treatment for me might be to late.

    Wishing everyone wellness,
    Lillie

  2. phelp

    phelp New Member

    lillie, what you have gone through must seem like a never ending nightmare.. i am so sorry for your pain. hopefully with your new doctor things will improve... it is such a shame that we put our lives and trust in doctors hands, only to be let down....prayers are coming to you...please let us know your progress..phyllis
    [This Message was Edited on 05/21/2004]
  3. fllfibro2003

    fllfibro2003 New Member

    for a while now, but I don't have the artritis that you have.

    Is this rash always there and get worse when you get hot?

    Also, does it itch?

    The reason I'm asking is mine is there24/7 and it doesn't itch.

    I also have the problems with bronchitis and sinus infections.

    I'm going right now to check this out.

    Thanks for the info.

    FLlfibro
  4. lillie8

    lillie8 New Member

    Yes, the rash is always there and it never itches or bothers me at all just is ugly.

    Lillie
  5. 30feeling80

    30feeling80 New Member

    I am so happy you found answers! You can't fight if you don't know what you're fighting!

    It pays to be our own advocates. You were the detective in this one. Thanks to the help of the board and finding a cooperative doctor, you are able to get well.

    My prayers go out to you (and praise God, too!)
    Darlene
  6. lillie8

    lillie8 New Member

    I think this is so important. Please keep bumped.
    Maybe, this will help someone else.

    Thanks,
    Lillie
  7. catsgalore

    catsgalore New Member

    Lillie-

    I don't know what the rash looks like yet- I'm on my way to the googlo search- but I have looked like I'm wearing a red turtle-neck "dickie" for about as long as my symptoms have become unbearable. (for the young ones- I don't know if dickies even exist anymore-I'll decribe them if you want but I won't take up more space here.

    Namaste- cats
  8. sunshine8957

    sunshine8957 New Member

    the problems you've had with what sounds too be an enormous rash. It is so important to be our own advocate.

    I have had a strange kind of discoloration on the back of both my upper arms. It looks like 'motteling' which is a med term for a patient who is close to death. My sister is an RN; although she is no longer practicing due to umpteem medical problems with her neck and left shoulder and she is the one who told me that she had never seen rhat kind
    of rash except on patients that were getting ready to die!

    I have had it checked by a number of doctors and medical staff and they all have told me that it's nothing to worry about. And now I just found out (in the last week or so) that I hsve an over-active Thyroid, it will be an intersting venture trying to find out if that mottled rash was a first sign that was missed tnat there was something wrong with my Thyroid.

    All this is very interesting snd will definitely keep my
    mind busy while waiting for my ALJ Hearing on the 18th.

    I'll keep you in my prayers, Lillir.

    God Bless You,
    sunshine8957 (Eve)
  9. mbofov

    mbofov Member

    I don't have a rash, it just seems to be the blood vessels, I don't really know what it is, but it sounds similar to what FlIfibro and Namaste-cats have - just my neck is always red. I put make-up on it to cover it and I look at other people's necks, they are never like mine. But it doesn't extend to my chest, it's not v-shaped, it's really not a rash, just the skin is reddened. Hmmm. I've wondered about it for awhile, if it was linked to my CFS. Maybe it is. I'll do some more searching. Thank you for the post. I've never looked into this before.

    Mary
  10. tandy

    tandy New Member

    I'm so glad you found help thru asking questions and being persistant!!! I've learned we need to like bulls looking for a DX!! I was tested for the exact same thing....acually minus the rash is polymyositis,its in the same family of illnesses as dermo-myositis~
    They are pretty rare conditions to my knowledge~
    Hope your feeling better soon. maybe now you can get the right treatment!!! Best of luck!!
    Warm regards,
    Tandy
  11. lillie8

    lillie8 New Member

    Thanks for the prayers. My redness on my neck and chest aren't what I would call a rash as it give me no problems,no itching, etc. It just seems to be red and growing up my neck. I also cover mine with make up and I never wear a dress that is cut away form the neck.

    I have been put on every NSAID and noe have done anything for me. Now I know why.

    I also wanted to mention that when I start writing my hand wrist and arm become tired quickly. My jaws have also started to become tired when chewing. I don't know if this will help anyone else; but just want to help if I can.

    Hugs,
    Lillie
  12. mogal

    mogal New Member

    Bumping...important info.

  13. mammothclan

    mammothclan New Member

    I have a rash on my neck and down my chest in a v formation. I had an unpaid dermatologist (she worked in the same building I did and just glanced at it) say it was rosacea. So I've never worried about it. I've had it for several, several years. My doctor that diagnosed me for fibro never mentioned dermatomyositis, and my rash is very obvious. Also, I've had several opinions from different types of doctors.
  14. sunshine8957

    sunshine8957 New Member

    Prayers going up!
  15. lillie8

    lillie8 New Member

    · Patients often present with skin disease as one of the initial manifestations. In as many as 40% of patients, the skin disease may be the sole manifestation at the onset. Muscle disease may occur concurrently, it may precede the skin disease, or it may follow the skin disease by weeks to years.
    · Patients often notice an eruption on exposed surfaces. The disease is often pruritic, and, sometimes, intense pruritus may disturb sleep patterns. Patients may also complain of a scaly scalp or diffuse hair loss (see Image 5).
    · Muscle involvement manifests as proximal muscle weakness. Patients often begin to note fatigue of their muscles or weakness when climbing stairs, walking, rising from a sitting position, combing their hair, or reaching for items in cabinets that are above their shoulders. Muscle tenderness may occur, but it is not a regular feature of the disease.
    · Poikiloderma may occur on exposed skin, such as the extensor surfaces of the arm, the V of the neck (see Image 6), or the upper part of the back (Shawl sign).
    · With the exception of the heliotrope rash, the eruption of DM is photodistributed and photoexacerbated. Patients rarely complain of photosensitivity, despite the prominent photodistribution of the rash.
    · Facial erythema may also occur in DM. This change must be differentiated from lupus erythematosus, rosacea, seborrheic dermatitis, or atopic dermatitis.
    · Scalp involvement in DM is relatively common and manifests as an erythematous to violaceous, psoriasiform dermatitis. Clinical distinction from seborrheic dermatitis or psoriasis is occasionally difficult. In some patients, nonscarring alopecia may occur and often follows a flare of systemic disease.

    Cutaneous Disease
    The most important diagnostic feature of the cutaneous eruption of
    dermatomyositis is poikiloderma. This feature occurs both in patients
    with dermatomyositis, where it is characterized by a violaceous color,
    and in patients with lupus erythematosus, where the poikiloderma is
    red. Poikiloderma includes features of hyperpigmentation, hypopigmentation,
    telangiectasias and epidermal atrophy, and these features
    are common to both diseases. If the clinician misses the poikiloderma,
    the eruption of dermatomyositis can occasionally be misdiagnosed as
    psoriasis because the lesions can present as well-marginated plaques
    on the elbows and knees and can be covered with fine silvery scale.
    The next most striking feature of the eruption of dermatomyositis is
    the photodistribution
    LythaMarie likes this.
  16. foxglove9922

    foxglove9922 New Member

    I too have had a rash on my neck and v of the chest since the onset of this illness. It seemed rather benign compared to the rest of my symptoms but after a year I asked the doctor to look into it. A biopsy revealed Sub Acute Cutaneous Lupus Erythmatosis,,,,,,,not Systemic Lupus! I was sent to a dermatologist who did yet another biopsy with the same diagnosis. Has your rash been biopsied? Debi
  17. mogal

    mogal New Member

    I also have a chronic reddish-brown discoloration on my neck, the sides. Under chin it is normal color. My chest has a little redness too.

    I asked my derm. about it and he said it's Poikiloderma of Civatte. Checked it out on the internet. Showed these names under title "Differentials."

    Berloque Dermatitis
    Bloom Syndrome
    Cutaneous T Cell Lymphoma
    Dermatomyositis
    Dyskeratosis Congenita
    Lupus Erythematosus, Acute
    Parapsoriasis
    Riehl Melanosis
    Rothmund-Thomson Syndrome

    Chronic exposure to ultraviolet light appears to a primary
    etiologic factor also.

    Hormonal changes related to menopause or low estrogen levels may be a factor.

    Genetic predisposition may exist.

    Antinuclear and Anti-Ro (SS-A) antibody levels may be ordered to exclude connective tissue disease.

    I am going to ask my doctor about this.
    I hope this helps everyone.

  18. lillie8

    lillie8 New Member

    bumping for others input.

    Thanks,
    Wishing everyone wellness,
    Lillie

  19. bjdd6069

    bjdd6069 New Member

    Sorry to read all the pain you have been in...but, glad you did some surfing around the net, and have a positive answer. Where can I find a good picture of this rash type thingie? I have had a reddish thingie on both sides of my neck for a couple of years now, and was wanting to take a good look at hopefully what you are talking about.Hope you start feeling better soon.
    BJ
  20. QuietMoments

    QuietMoments New Member

    You have beend own a long and painful road. Struggling, trying to find answers, having difficulty finding them for such a long period of time. I truly hope and pray it is not too late for treatment for you. You have done a wonderful thing to share this with us all, and I hope and pray you will be able to survive all of this. I'm so very sorry it took so long to get the answers you deserved so much earlier on.

    I do hope this stays bumped. For those that may not have it now that could have it in the future, it would be so crucial to keep this information handy.

    Thanks just doesn't seem enough to offer to you.

    Warmest hugs...
    Judy