01-20-2007, 10:30 PM
Hi. I'm so depressed about my possible Lupus diagnosis. I had a hemorrhoidectomy in December and about three weeks later, I started running 104 fever....I ran high fever for about two days, then it started getting much better. I thought it was just a virus....I knew I wasn't infected down there from my surgery.
The day that I thought I was well, I got up and ran errands, I felt so good this day....we went out to eat....but before I could get up from the table....I could feel low grade fever coming back. The back of my neck started hurting really badly. That night in bed, my joints hurt so bad, I couldn't even turn over. I couldn't even hardly walk to the bathroom....my joints felt ravaged. Never felt such pain in my life! I started self dosing myself on prednisone until I could get in to see the doctor. After taking 20 mgs of prednisone, the next day, I could walk, but I still hurt.
The doctor ran test and it showed my ANA levels at 204.....normal is 0-99. So this is quite high. The doc said it didn't prove that I had lupus, but he wanted to run more test. I don't have the results back from my latest test. I was also anemic on my first blood test. Basically, all I can do is lay around and sleep. My joint pain is gone now, except for this horrible pain in my lower back......I'm very depressed about this possible diagnosis.
Can someone please tell me how you're disease started. I feel like my autoimmune system got turned on because of my surgery. I feel if I didn't have my surgery, none of this would have happened. I would like to know more about the disease from one's own personal perspective. I'm working on my degree right now , actually almost finished, and really don't want to let this disease stop me from my dreams.
Please, tell me more about this disease. I've weaned down on my prednisone now and just about thru taking it.....my back still hurts really bad, and the calfs of my legs seem kinda sore. Have an appt for a rheumatologist next month. Thanks to anyone that can give me advice.
01-21-2007, 08:33 AM
Hi Carolyn; :lol:
My Lupus was probably with me from the time that I was in High School (when I look back on some of the symptoms I felt then). I was not diagnosed until I was in my thirties and my serious symptoms appeared after years of unrelenting stress!
I would not say that your surgery caused your lupus. However, perhaps the stress before, during and after the surgery may have contributed to the onset of symptoms. The precise reason for the abnormal autoimmunity that causes lupus is not known. It is widely speculated that inherited genes, viruses, ultraviolet light, and drugs may all play some role in bringing about the onset of symptoms. It is also believed that genetic factors increase the tendency of developing autoimmune diseases, such as lupus, and these diseases (rheumatoid arthritis , and immune thyroid disorders, etc.) are more common among relatives of patients with lupus than the general population. Some scientists believe that the immune system in lupus is more easily stimulated by external factors like viruses or ultraviolet light. Sometimes, symptoms of lupus can be precipitated or aggravated by only a brief period of sun exposure.
Also, there are many medications that have been reported to trigger SLE; however, more than 90% of this "drug-induced lupus" occurs as a side effect of one of the following six drugs: hydralazine (used for high blood pressure), quinidine and procainamide (used for abnormal heart rhythm), phenytoin (used for epilepsy), isoniazide (used for tuberculosis),
d- penicillamine (used for rheumatoid arthritis). These drugs are known to stimulate the immune system and cause SLE. Fortunately, drug-induced SLE does not occur frequently (accounting for less than 5% of SLE among all patients with SLE) and usually resolves when the medications are discontinued.
It also is known that some women with SLE can experience worsening of their symptoms prior to their menstrual periods. This phenomenon, together with the female predominance of SLE, suggest that female hormones play an important role in the expression of SLE. This hormonal relationship is an active area of ongoing study by scientists.
Recent research provides direct evidence that a key enzyme's failure to dispose of dying cells also contributes to SLE. The enzyme, DNase1, normally eliminates what is called "garbage DNA" and other cellular debris by chopping them into tiny fragments for easier disposal. The researchers turned off the DNase1 gene in mice. The mice appeared healthy at birth but after 6-8 months, the majority of mice without DNase1 showed signs of SLE. Thus, a genetic mutation that disrupts the body's cellular waste disposal may be involved in the beginning of SLE.
There are several risk factors for Lupus. Risk factors for Lupus are factors that do not seem to be a direct cause of the disease, but seem to be associated in some way. Having a risk factor for Lupus makes the chances of getting the condition higher but does not always lead to Lupus. Also, the absence of any risk factors or having a protective factor does not necessarily guard you against getting Lupus. Some of the risk factors are race ( African Americans and Hispanics/Latinos tend to develop lupus at a younger age and have more symptoms at diagnosis (including kidney problems), age (Lupus is most common in women between the ages of 15 and 44. These are roughly the years when most women are able to have babies), smoking, extended periods of high stress, the environment.
The problem is that we don't know what causes lupus and it is precisely for this reason that there is no cure. However, in most cases, lupus can be managed. As I've said, the environment, sunlight, stress, and certain medicines may trigger symptoms in some people.
Remember that each person with Lupus has different symptoms. Your treatment will depend upon your particular symptoms. Your doctor may give you aspirin or a similar medicine to treat swollen joints and fever. Creams may be prescribed for a rash. For more serious problems, stronger medicines, such as antimalaria drugs, corticosteroids, and chemotherapy drugs are used. You and Your doctor will choose a treatment based on your symptoms and your needs.
I understand your fear at having a life-long disease. But, as I've mentioned, I have lived with Lupus for over twenty years (almost 40 if you count my high-school years) and have managed my disease so that I can live a relatively normal life. You can do that also! You need to find out what works best for you. You should find that a rheumatologist with whom you can have a good patient/doctor relationship so that you both can come up with the best treatment plan for you. Other health professionals can help you deal with different aspects of lupus, including psychologists/counselors (to help you with the emotional ups and downs that you will undoubtedly experience), occupational therapists, dermatologists, and dietitians. Also, it is very important that you find a non-jarring exercises program and/or work with a physical therapist to maintain body strength and to help boost your immune system. Exercising will actually make you feel better. The important thing is to follow up with your health care team on a regular basis, become pro-active in your health care and maintain communication with your doctors,even when your lupus is quiet and all seems well. People with lupus have limited energy (in fact, we usually have debilitating fatigue) and we must manage our time and energy wisely. Ask your health care team about ways to cope with fatigue, also, there are many posts on this forum which give advice about dealing with fatigue. You will find that you will feel better if you manage your rest and work times and take your medications as prescibed. Always let your doctors know how your medications are affecting you so that adjustments may be made, if need be. You may become depressed, that is normal. Do not hesitate to seek help for your emotional health and to ask for medication if you feel that you need it.
Dealing with a long-lasting disease like lupus can be hard on your emotions and everyone here understands that. You might think that your friends, family, and coworkers do not understand how you feel. Sadness and anger are common reactions. But, we want you to know that we understand, we are here to help you, to answer your questions, to give you support and to let you know that you are not alone.
I wish you the best
Peace and Blessings
01-21-2007, 10:48 AM
thank you for the reply. I was in tears as I was reading it. I'm so depressed...I've never been this way before and my family is just making it worse. My husband was calling me retarded last night....just being plain mean to me. I don't know how to deal with this pain except for using pain pills right now, and I don't want to be addicted to these things. Been there done that.....not fun. I'm just trying to deal with the pain the best I can without taking anything. My rheum appt isn't for another month.
I still can't help to think my surgery started all of this. I was so healthy before. My theory is that my immune system was fighting my surgery and just turned on extra hard and started attacking my own tissues. It has to be the surgery.....what else could it have been ? Oh, I also had a UTI after my surgery. I hate all of this. I dont' want this disease and if I do have it, I want people to understand me in stead of being mean to me. I am very moody here lately, I'll admit, but it's not bad enough to be called retarded.