So many questions
Being newly diagnosed, I have so many questions. I try to call my rheumy, but her nurse seems so agitated to have to answer my questions. Not having a support group in my area makes it hard because I have nowhere to turn. Hopefully someone in this group may be able to help me.
First question is regarding Raynauds. I have had it occasionally over the past year, but since this flare began in February, it never goes away. My feet, hands and nose hurt most of the day and night because they are so cold. Is this normal? Can I do something to make it better?
Next question. I have been having shortness of breath when I walk across a room or sometimes just sitting still. Is this something I should be concerned about or is it related to the fatigue I am experiencing?
Last question. Six weeks ago I had an UTI. It took 2 rounds of antibiotics to eliminate it. Every since then, I have had small to trace amounts of blood and 1+ protein. Since I have decreased C3 and C4, should I be concerned. My PCP does know, but he says to just monitor it. I know this is not a large amount, but if I can help prevent kindey problems please let me know.
I am sorry to bog you down with all these questions, but I don't know where else to go. If anyone has any advice, please let me know.
Thanks again for all your support and inspiration already.
Do not be concerned about "bogging" us down. We are here to answer your questions and hopefully to put your mind at ease a bit! :lol:
1) Raynaud's: Raynaud's phenomenon is a disorder that affects the blood vessels in the fingers, toes, ears, and nose. This disorder is characterized by episodic attacks, called vasospastic attacks, that cause the blood vessels in the digits (fingers and toes) to constrict (narrow). Raynaud's phenomenon can occur on its own, or it can be secondary to another condition such as scleroderma or lupus. For most people, an attack is usually triggered by exposure to cold or emotional stress (mine are generally triggered when I am stressed, which happens much too often).
When a person is exposed to cold, the body's normal response is to slow the loss of heat and preserve its core temperature. To maintain this temperature, the blood vessels that control blood flow to the skin surface move blood from arteries near the surface to veins deeper in the body. For people who have Raynaud's phenomenon, this normal body response is intensified by the sudden spasmodic contractions of the small blood vessels (arterioles) that supply blood to the fingers and toes. The arteries of the fingers and toes may also collapse. As a result, the blood supply to the extremities is greatly decreased, causing a reaction that includes skin discoloration and other changes. Once the attack begins, a person may experience three phases of skin color changes (white, blue, and red) in the fingers or toes. The order of the changes of color is not the same for all people, and not everyone has all three colors. Pallor (whiteness) may occur in response to spasm of the arterioles and the resulting collapse of the digital arteries. Cyanosis (blueness) may appear because the fingers or toes are not getting enough oxygen-rich blood. The fingers or toes may also feel cold and numb. Finally, as the arterioles dilate (relax) and blood returns to the digits, rubor (redness) may occur. As the attack ends, throbbing and tingling may occur in the fingers and toes. An attack can last from less than a minute to several hours. So, what you are experiencing is not uncommon!!
Nondrug Treatments and Self-Help Measures:
Several nondrug treatments and self-help measures can decrease the severity of Raynaud's attacks and promote overall well-being.
* Take action during an attack--An attack should not be ignored. Its length and severity can be lessened by a few simple actions. The first and most important action is to warm the hands or feet. In cold weather, people should go indoors. Running warm water over the fingers or toes or soaking them in a bowl of warm water will warm them. Taking time to relax will further help to end the attack. If a stressful situation triggers the attack, a person can help stop the attack by getting out of the stressful situation and relaxing. People who are trained in biofeedback can use this technique along with warming the hands or feet in water to help lessen the attack.
* Keep warm--It is important not only to keep the extremities warm but also to avoid chilling any part of the body. In cold weather, people with Raynaud's phenomenon must pay particular attention to dressing. Several layers of loose clothing, socks, hats, and gloves or mittens are recommended. A hat is important because a great deal of body heat is lost through the scalp. Feet should be kept dry and warm. Some people find it helpful to wear mittens and socks to bed during winter. Chemical warmers, such as small heating pouches that can be placed in pockets, mittens, boots, or shoes, can give added protection during long periods outdoors. People who have secondary Raynaud's phenomenon should talk to their doctors before exercising outdoors in cold weather.
People with Raynaud's phenomenon should also be aware that air conditioning can trigger attacks. Turning down the air conditioning or wearing a sweater may help prevent attacks. Some people find it helpful to use insulated drinking glasses and to put on gloves before handling frozen or refrigerated foods.
* Quit smoking--The nicotine in cigarettes causes the skin temperature to drop, which may lead to an attack.
* Control stress--Because stress and emotional upsets may trigger an attack, particularly for people who have primary Raynaud's phenomenon, learning to recognize and avoid stressful situations may help control the number of attacks. Many people have found that relaxation or biofeedback training can help decrease the number and severity of attacks. Biofeedback training teaches people to bring the temperature of their fingers under voluntary control. Local hospitals and other community organizations, such as schools, often offer programs in stress management.
* Exercise--Many doctors encourage patients who have Raynaud's phenomenon, particularly the primary form, to exercise regularly. Most people find that exercise promotes overall well-being, increases energy level, helps control weight, and promotes restful sleep. Patients with Raynaud's phenomenon should talk to their doctors before starting an exercise program.
* See a doctor--People with Raynaud's phenomenon should see their doctors if they are worried or frightened about attacks or if they have questions about caring for themselves. They should always see their doctors if attacks occur only on one side of the body (one hand or one foot) and any time an attack results in sores or ulcers on the fingers or toes.
Treatment With Medications
People with secondary Raynaud's phenomenon are more likely than those with the primary form to be treated with medications. Many doctors believe that the most effective and safest drugs are calcium-channel blockers, which relax smooth muscle and dilate the small blood vessels. These drugs decrease the frequency and severity of attacks in about two-thirds of patients who have primary and secondary Raynaud's phenomenon. These drugs also can help heal skin ulcers on the fingers or toes.
Other patients have found relief with drugs called alpha blockers that counteract the actions of norepinephrine, a hormone that constricts blood vessels. Some doctors prescribe a nonspecific vasodilator (drug that relaxes blood vessels), such as nitroglycerine paste, which is applied to the fingers, to help heal skin ulcers. Patients should keep in mind that the treatment for Raynaud's phenomenon is not always successful. Often, patients with the secondary form will not respond as well to treatment as those with the primary form of the disorder.
Patients may find that one drug works better than another. Some people may experience side effects that require stopping the medication. For other people, a drug may become less effective over time. Women of childbearing age should know that the medications used to treat Raynaud's phenomenon may affect the growing fetus. Therefore, women who are pregnant or are trying to become pregnant should avoid taking these medications if possible.
2) Shortness of Breath: You may be having some lung involvement with your Lupus. Lupus commonly affects the lungs and has been reported in half of all patients with lupus. Its seriousness varies from the very worrying to the totally and wholly asymptomatic, not requiring any treatment at all. It is, in general, picked up by symptoms of lung involvement such as chest pain, shortness of breath, coughing up blood, or by evidence of lung involvement on clinical examination and sometimes by special tests. Diagnosis may be simple or difficult depending on the type of lung involvement.
The most common lung involvement in lupus is Pleural Disease (Inflammation of the lung lining). Inflammation gives rise to pleurisy, a type of chest pain characterised by sharpness, which is worsened by breathing in. The pain has a knife-like quality. this sort of problem has been recorded in about half of all patients with lupus.
There are other ways in which your lungs could be involved, but I think that you should bring this up with your doctor and get tested before worrying about the others right now.
3) Lupus patients are likely to have UTI, usually manifesting in the lower tract. Patients with lupus are more susceptible to infections because they have altered immune systems, and also because many patients are on treatment (steroids & cytotoxics) that suppresses immune system function, leaving them more prone to infection. The most common bacterial infections seen in lupus affect the respiratory tract and the urinary tract.
However, protein loss and blood in the urine can sometimes indicate kidney involvement (Lupus Nephritis). It is estimated that about a third of patients with lupus will develop nephritis which requires medical evaluation and treatment. I am not a doctor and so cannot diagnose you. But, your doctor should continue to monitor your levels closely to make sure that your kidneys are not involved.
Please learn as much as you can about the above possibilities so that you can be informed when you next see your doctor!
I hope that I've been helpful...I wish you the best!
Peace and Blessings
Saysusie, thank you so much for your reply. It does help me to better understand my disease, and everything keeps leading back to the stress in my life. Also, I didn't relate the air conditioning to the Raynauds until now. At work they keep it so cold and the Raynauds stays active most of the day. Each day I am realizing more and more that I need to make changes in my life so that one day I will feel better. Thanks again for sharing your knowledge and your support. It is much needed at this time.
God bless you!!!!
Yes, making some life-style changes has become necessary for almost all of us. But, doing so does, as you said, make living with Lupus a bit easier. Our daily life is all about doing what we need to do to avoid flares or to lessen their frequency and severity.
Stress is one of our biggest enemies...I always suggest that we take just as much care of our emotional health as we do our physical health and that it is not only ok to put our needs first...it is absolutely necessary sometimes!
We are always here and will always understand what you are going through
Peace and Blessings