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Thread: Hi I am frustrated and not sure what is going on.

  1. #11
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    Welcome Lizza;
    Think you were absolutely right in being honest with your doctor about your addiction. Even those of us without that addiction are looked at like we are drug seeking, so please do not think it is only you.
    I am also from Ohio. Where are you at? I am between Cleveland and Akron. Isn't this snow wonderful for your pain. loll.
    I have been keeping a diary of bad days. I write down the weather, my activity, my diet, work schedule, stress factors, if it is that time of the month....I have been trying to find reason for days the pain is worse than others and have found no correlation. The weather does not help. There are days I feel like every bone in my body is going to shatter with every move I make. They have become more frequent along with my legs not wanting to move and my arms and hands being numb. The swelling in my extremities is awful. It is 3+ pitting and when you push on my bones, the tissue stayes pressed in for a long time.
    If you are close to Medina, I can give you the name of a rheumatologist that is very sympathetic. She is lost when it comes to me, but she certainly has a great bedside manner and is willing to take time and listen.

    Good luck in your search.
    Kim

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    Thanks for all your replies! I am in Lexington (near Mansfield) Ohio. Yeah, the snow is GREAT *sarcasm*. My right arm has been going numb up into my neck! My hand and feet turn completely white and loose feeling - I love it. Medina is around an hour from me. I saw my addiction Dr. on Monday and he said I need to go have some other blood work done. I have an order for lab work and I am wondering if any of you can think of any other tests I need. There are only three on this sheet... CBC w/diff ... ANA titer ... ENA Battery. I thought I read that there were other needed tests and I would rather have them all done at once if possible. So anything y'all can add would be great. Oh and my addiction Dr. also put me on Ultram along with motrin. I was taking around 5,000mg of Tylenol per day and 3,200mg of Ibprophren and he said I was overdosing. The Ultram helps a little bit although my hands are still three times the normal size. It makes it easier to go about my day without just thinking of pain.

  3. #13
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    HEY... I was first tested for Reynauds (b/c of my hands & feet turning white and loosing feeling) and that was negative which is when they found my positive ANA, what else could possibly be causing that? The Rheumy I saw here told me I definetly have it even though I tested negative. Also he said the only thing that could be done it blood pressure meds. and my blood pressure is always around 110/60 so i can't lower it anymore. Besides heavy gloves and socks (which don't really cut it anyway) what else can be done??

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    Here is some information I found on the management and treatment of Raynaud's. Perhaps there is something in this article that you can find helpful to you.

    Management and treatment

    Treatment

    Most people with primary Raynaud's phenomenon don't require medical treatment, although many choose to take medication during the winter months. People with secondary Raynaud's phenomenon are at risk for fingertip ulcers and tend to have active symptoms all year long.

    The goal of treatment of Raynaud's phenomenon is to prevent episodes and, in secondary Raynaud's phenomenon, to prevent tissue damage. This can be done by protecting the body from cold and avoiding aggravating factors, such as excessive emotional stress, smoking, certain medications like nonselective beta-blockers, use of industrial tools with violent vibration, and use of narcotics. In some cases, a doctor may prescribe medication.

    Self-management

    A person with Raynaud's phenomenon can treat or manage their own condition by protecting the body from excessive cold, and by protecting the skin.

    Cold protection

    To avoid episodes a Raynaud's phenomenon, the entire body should be warm at all times. Follow these tips to avoid getting too cold:
    Dress warmly in layers of loose-fitting clothes, especially during cold weather and during changes of season.
    Wear a hat in cold weather, because body heat is lost through the scalp. Cover your face and ears with a scarf.
    Wear loose-fitting boots and shoes that won't cut off the blood circulation.
    Wear heavy socks or layers of socks.
    Wear mittens -- they are warmer than gloves.
    Always keep a sweater or jacket nearby, even during the summer. It may be cold enough to need it in air-conditioned buildings.
    Use flannel sheets or layers of blankets. Use an electric blanket to warm the sheets before getting into bed. If your hands and feet get cold while sleeping, wear mittens and socks to bed.
    Keep the rooms used most often at a comfortable temperature.
    Start running the bath or shower water well before bathing so you don't touch the cold water. Keep the bathroom door closed so steam will warm the room.
    Ask family and friends to help. For example, let someone else get the newspaper from outside or start the car on a cold day. Avoid household tasks that require putting hands in cold water.
    Wear gloves or mittens to reach into the freezer.
    Use insulated containers, gloves, or napkins to hold cold drinks or food.
    Rinse and peel vegetables with warm water.
    Use chemical heat packs to supplement mittens and warm clothing.

    Skin protection

    Poor blood flow may make skin dry. It may also cause cuts, cracks, or sores to heal more slowly than usual. These tips can help protect skin:
    Use lotion with lanolin on hands and feet every day to keep the skin from chapping or cracking.
    Wash with a mild, creamy soap. Clean between fingers and toes, but don't soak them.
    Examine feet and hands daily to check for ulcers. If a ulcer develops, keep it clean and covered. See a doctor right away.
    Protect fingernails and toenails. Use a lotion to keep the cuticles soft. Don't cut the cuticles with scissors or use sharp instruments to push them back. Instead, gently push them back with a cotton swab soaked in cuticle remover. Carefully cut hangnails and file your nails in a rounded fashion to the tips of your fingers.
    Wear rubber gloves while washing dishes.
    Take care when doing activities that put pressure on the fingertips, such as using a manual typewriter or playing the guitar or piano. This kind of pressure may cause your blood vessels to narrow, thus triggering an episode.
    Wear clothes made of natural fibers, such as cotton and wool. These draw moisture away from the skin.

    Other tips
    Don't smoke. Chronic smoking causes blood to narrow. Medications to treat Raynaud's may not be as effective in smokers.
    Try to avoid emotional stress. Ask a doctor about relaxation techniques and other stress reduction methods.
    Because certain drugs may cause blood vessels to narrow, all the doctors that work with a person with Raynaud's phenomenon should be told about the condition, and medications should be discussed. Working in partnership with a doctor may help determine which drugs and treatment are most suitable for each person.
    A warmer climate will not cure Raynaud's phenomenon, but it may cut down on the occurrence of episodes and reduce the risk of developing ulcers on fingers. If you consider moving to a warmer climate, you'll need to decide if the benefits outweigh the expenses and complications of relocating.
    Look into biofeedback training. It may help control Raynaud's phenomenon. Biofeedback may also help reduce pain and promote relaxation. A doctor should be able to discuss if it would be helpful and where to find training.

    Handling an episode

    If an episode a Raynaud's phenomenon occurs, stay calm and get your whole body warm by going indoors or by putting on warm clothing. Then follow these steps:
    Gently warm the fingers and toes as soon as possible. Placing hands under the armpits often helps.
    Wiggle the fingers and toes. Move or walk around to help blood flow freely.
    When hands start to feel cold, held them above the head. They swing them around as in throwing a softball.
    Run warm--not hot--water over the fingers or toes until normal skin color returns. Do not use a hot water bottle or heating pad, which may damage the skin.

    Exercise and therapy
    Exercise may have some benefit to people with Raynaud's phenomenon. A doctor may be able to advise if an aerobic exercise program would be helpful.

    Medications

    No drugs are specifically approved by them U.S. Food and Drug Administration for treatment of Raynaud's. However, many drugs used to treat high blood pressure or angina pectoris have been shown effective and safe in treating Raynaud's phenomenon. These include calcium channel blockers such as nifedipine, amlodipine, isradipine, and others.

    Some of these medications may have side effects, such as headache, palpitations, lightheadedness or dizziness, or fluid retention. Contact a doctor if questions arise about side effects from medications or questions about their use.

    Surgery
    In rare cases, a doctor may recommend sympathectomy to treat Raynaud's phenomenon. This operation involves cutting the nerves that may be making the narrowing of the blood vessels worse. The procedure is done mainly for secondary Raynaud's phenomenon and usually is not necessary.

    Peace and Blessings
    Saysusie
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    Thanks saysusie! I will definitely try some more of those things. I already layer up really well but there are a lot of helpful tips for me in there. I appreciate it very much. Thanks again and take care

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    You are very welcome. I, too, suffer from Raynaud's and I found some of these suggestions helpful to me! :lol:

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Thank you for being so honest with us about your past! You are very brave and I am so sorry you are going through all of this. It is very frustrating when you feel so yucky and yet your lab work does not lead to any answers. Hang in there and know that we are all here for you! I am also new and have found so much love and support here, it sure makes what we are going through a little less lonely
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    I appreciate all your answers and support already! I am very glad to have stumbled upon this site!! Thanks again

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    We are happy that you are here also. This is a great group filled with the most caring and supportive people and you are a very welcome member of our group :lol:

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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