feeling scared and confused
Hi... I am new to this site, but hoping to find someone out there that can help me or at least understand what I'm going through. I was going to pain management for about 10 years..between headaches, bad muscles spasms in neck and shoulders. He was treating me for a herniated disc in neck and 4 buldging discs in back. My pain wasn't getting any better and he started thinking I might have lupus. (I was diagonsed with discoid lupus around 6 years ago.) So in March I had bloodwork and results came back positive for SLE and in April I was also diagoned with Sjorgren's Syndrome. I also found out that my bad chlorestrol is very high 207, so on Crestor for that...I just feel like I'm falling apart...I have bald spots from the lupus...and the ugly red rash marks on my face....and I have soooo much pain in my elbows and wrists....it's unbelievable. And still have the back pain and neck pain. I feel runned down and not myself anymore. I now stopped pain management dr. because my rhemotory dr. said she would take over.... but she cut all my meds. almost in half....that I was taking for over 6 years... including my percocet, fioricet, and klonpin for muscle spasms. I know these drugs are not the answer to cure my lupus, but I honestly can say that the pain is still there but tolerable. Sorry for rambling..and misspelling....I noticed lately that my memory isn't as well as it was. I don't even know if this will make sense to anyone out there...I 'm just looking for information and help. And FEEL SO DEPRESSED AND SCARED!
Everything that you've said makes perfect sense. You are not alone in the symptoms that you've described or in the fear that you've expressed. Most of us with Lupus have felt exactly the same things!
Lupus pain is generally caused by inflammation. Your doctor may have reduced your drugs because they do not address the issue of inflammation and may not have been as effective for Lupus as some other treatments could be. For inflammation, doctors prescribe anti-inflammatory drugs to relieve the symptoms of lupus by reducing the inflammation responsible for the pain and discomfort. Anti-inflammatory medications are the most commonly used drugs for lupus treatment, particularly for symptoms such as: fever, arthritis, or pleurisy. Anti-inflammatory drugs fall into two categories
1. non-steroidal anti-inflammatory drugs - used for musculoskeletal symptoms, such as arthritis, arthralgia, joint stiffness or pain
fever and chest pain from mild pleurisy (inflammation of the lining of the lung), pericarditis (inflammation of the sac around the heart).
2. corticosteriods - used if a person with symptoms such as fever, arthritis, or pleurisy that has not responded to non-steroidal drugs. Doctors then might treated them with low doses of an oral corticosteroid, such as prednisone or methylprednisolone (brand name: prednisolone).
Individuals with more severe or serious lupus symptoms, such as kidney disease, seizures, anemia, or low platelets (thrombocytopenia) may require high doses of corticosteroids.
Also, Drugs used for the treatment of malaria are widely used in the management of lupus symptoms. The drug hydroxychloroquine (brand name: Plaquenil) is the most commonly used of the anti-malarial agents.
Anti-malarials are particularly effective in the treatment of: lupus arthritis,
skin rashes, and mouth ulcers.
Other drugs used are immunosuppressive drugs. These are used to suppress the immune system in people with lupus. The most commonly used drugs of this type are azathioprine (Imuran), cyclophosphamide (Cytoxan), and methotrexate (Rheumatrex), and cyclosporine (Sandimmune, Neoral) . These drugs are generally reserved for people with more serious manifestations of lupus such as — lupus kidney disease ( nephritis ), or or acute neurologic complications of the disease who have failed m treatment with corticosteroids.
Your memory loss and confusion are also symptoms of Lupus. Lupus patients often experience accelerated declines in thinking and memory. An immune system antibody that lingers in especially high concentrations in lupus patients appears to attack and kill brain cells. The majority of people with lupus develop nerve-related problems, such as headaches and memory loss, ranging from mild to severe.
Depression in Lupus is clinical. Clinical depressive illness is a very disabling, unpleasant and prolonged state. The physical symptoms of Lupus are similar to those that you've described:headache, heart palpitations, diminished sexual interest and/or performance, body aches and pains, indigestion, constipation, diarrhea. Clinical depression in people with Lupus generally responds well to standard psychiatric treatments and that patients treated only for their physical illness can suffer needlessly from clinical depression. The most common cause of depression in lupus patients is the emotional drain from the continuous series of stresses and strains associated with coping with the chronic illness and medical condition. Also, the many sacrifices and losses required by the continuous life adjustments that we have to make with this disease can make us depressed. Today, effective treatment is available for depression and usually consists of a combination of anti-depressant medication aand psychotherapy/counseling. I firmly believe that depression should be treated with the same aggressiveness and persistence that is used to treat a lupus flares, pain, or any other lupus complaint.
Please know that you are not alone and that all of us can understand and identify with what you are going through. We are always here and want to give you information, support and understanding. You Are Not Alone
Peace and Blessings