View Full Version : Surviving With Lupus
09-25-2008, 08:40 PM
Just wanted to introduce myself. In June 2007 I was diagnosed with SLE and Lupus Nephritis (4.5 on the WHO scale). I have been battling severe and crippling joint pains a couple of years prior to my diagnosis. The pain was so excruciating that I could not extend my leg/knee, arms, wrists, fingers, and it would just radiate from one area to the next. It was a tough battle prior to my diagnosis. Several doctors wrote me off as having pains from aging. Get this... I'm a 34 year old male. The blood tests that they took all came back negative, even from a rheumatologist.
It wasn't until last year that my uncle recommended that I see his rheumy. This doctor was such a blessing. After bringing all my medical records to him, he noticed that the prior doctors were only testing for RA and not Lupus. Once diagnosed, I underwent a barrage of treatments, from medicine, infusions, to a kidney biopsy (not favorable at all). Aside from joint kidney problems, I have developed anxiety and depression to the point where it is severe. I have never felt this way, only until a couple of years ago when I began experiencing my severe and crippling joint pains. There are no skeletons in my "closet" so I cannot understand why I have been feeling this way from a mental state.
I used to be on a laundry list of medicines, and now, I am currently taking the following:
Cellcept, hydroxychloroquine, prednisone (down to 2.5 mgs every other day)
Abilify, Sertraline, Alprazolam - For my severe depression and anxiety
I am hoping that there are other individuals going through similar times, especially from the depression, anxiety, kidney, joint pains, and a mental state. My goal is to make friends and gain a better understanding what others are experiencing.
Sure hope you all can help.
09-25-2008, 10:28 PM
Welcoming you with open arms...
Similarities between me and you....I have SLE , suffered years without a diagnose. When it finally came, I too could barely walk or hold a toothbrush to clean my bucks.
I was taking Lorazepam quite frequently when I felt overwhelmed with fear. Afraid to live afraid to die...wondering who I will be if I wasn't who I use to be, before all this. I learned to grow, to change quickly...find answers instead of waiting for them. Answers to the spirit, to the mind and what causes the depression.
I am a work in progress..I still fall into the stupid hole, but now I know how to get our quicker....with what progress I have accomplish within, anti-depressants are off my list and anxiety pills far and few...
My progress is more of a spiritual one...not a religious one. To feel whole despite my limitations because of the pain, because of the sun sensitivities. Not to mourn who I was. Welcome who I am becoming.
SLE is life changing. It feeds off our stress, off our depression and anxieties. All emotions that could bring on a flare...
Life doesn't stop for those with a disease. We can get back on, just on a different ride...Instead of the roller coaster, maybe the water slide...
You've been through alot...alot of uncertainties, pain, tests, feeling unsure, undiagnosed, feeling unvalidated because doctors wrote you off....I can understand the mental state and I don't think it has to with skeletons, but from all what you have been through. That wreaks havoc on us...
Hope you are sleeping well, tomorrow is a new day. Hopefully our words will help you to alleviate you mental, emotional feelings you are having..
Again welcome...chat up, post often, read about...
09-26-2008, 01:48 AM
Welcome to the board humble74
Yes there are many who can identify with you on many levels.
If you have done so already, cruise the different area's on the board and read the titles of some of the posts. If something interests you feel free to comment.
The folks here are very warm and caring. There is a lot of information we can all share with each other.
I suffer from joint pain. It took a good year and a half to get my legs to the point where I can walk with out a cane. I still keep it handy as I have bad days. I'm now 48 yrs old but I have the body of an 80 yr old :lol:
My family doctor is very thoughtful...too thoughtful...she likes to think things over VERY carefully and "watch". It took her a loooong time to get moving on medications (which I dont disagree with).
It was a hard road to find which medication was going to work for me. I take a combination of Arthrotec75 and plaquenil along with a handful of goodies like omega three fish oil, glucosamine, vietamine D and C and calcium.
I wear tensor soft wrap around knee braces when I work out, go for long walks, do house work or drive. They really do help quite a bit.
Took me a long time to find a work out routine that "helped" not hurt. Mostly it keeps my joints moving well. If I don't work out then my legs and feet swell up like crazy and as you mentioned, I can not straighten my legs out. So I keep myself moving.
I am not diagnosed as yet, my rhuemy is an idiot and feels that lupus is a diagnose doctors give when they have no idea what else to call it. :shock:
My sister has lupus and my mother had lupus. I've had one possitive ANA test, a boarderline ANA and two negative. I have the facial rashes and other goodies that go with lupus.
The folks here are kind enough to welcome me, and frankly if it wasn't for this board I think I would have slid into a very deep depression.
Here, I feel welcomed and I have had alot of my personal questions answered and feel comfortable with where I am in regard to understanding my health issues. I hope you have the same experiance here.
09-26-2008, 02:02 AM
Hello and welcome Humble;
I can't add much more to what Oluwa has stated so eloquently. I just wanted to let you know that depression and anxiety are also symptoms of Lupus. For us, It can be particularly hard at times to know whether our depression is related to lupus, to mood swings, to the side effects of medicines, to the emotional impact of coping with a potentially severe and unpredictable illness, or to a separate, unrelated, clinical depression. There are two major forms of depression: clinical and reactive. Lupus can cause chemical changes in the brain and some of these chemical changes can trigger clinical depression. This clinical depression can trigger reactive depression ( depression that stems from an emotional response to something that has occurred in one's life, e.g., personal loss, death, illness or a variety of stressors that can trigger a sense of sadness and that does not go away for weeks or months). Also, some of the symptoms of clinical depression can be directly attributed to active Lupus (such as lack of motivation; Trouble sleeping or sleeping too much;
Lack of concentration; Low energy or fatigue). It can be challenging to differentiate between the emotional and physical factors that may be contributing to our feelings of depression.
So, do not beat yourself up about your feelings of depression. Continue to treat your depression as well as your Lupus symptoms. Often, when our Lupus becomes manageable, our depression becomes a bit more manageable also.
You are not alone and will never be alone when you are here with us. I'm glad that you found us and that you decided to join our family.
Peace and Blessings
09-26-2008, 02:03 AM
Welcome to the site. I think we with Lupus can all relate to a lot of what you are going through. I have terrible bouts of joint pain from time to time. I also have a problem with depression at times. I think that it goes along with the illness more then anything else. Is the medication helping you out a lot yet? I hope that you keep posting and I hope that you get to feeling ok.
My name is Rob, and I'm a 40 y.o. male diagnosed with SLE when I was 36. Joint pain was one of the first symptoms I experienced. I always figured, as did my doctors, that it was a result of my lifestyle and various outdoor activities. I spent a few years in the Army climbing into and out of a tank, and I used to hike/climb/skydive so it never occured to me that the pain was from anything else. I got up one morning and had two patches of hair just fall out on the back of my head. That got me doing a little research, and to make a long story short, I put together the puzzle and was diagnosed with SLE.
Looking back, I had alot of seemingly unrelated problems that now make sense. Pleurisy, costochondritis, and all sorts of other connective tissue inflammation were a constant thing. I too have been dealing with depression, sometimes severe. Anxiety that caused me to lock myself in my house and isolate myself from the world was a huge problem until I sought help form a counselor, and opened up to people here to talk about it. I don't take any anti-anxiety meds on a regular basis. I've tried various anti-depressants over the years, and I don't react well to the ones I've tried. This is a personal issue though, and many people do take anti-depressants with excellent results.
Much of my depression was in reaction to all the emotional upheaval, and stress/fear of being diagnosed with SLE. I lost most of what I had in my life. Most of my friends, my fiancee, and my business. Who wouldn't be depressed? Today, the depression comes from mostly internal factors. This is considered clinical depression caused by chemical changes in the brain. It helps me to not isolate, and to talk to others here who have similar problems.
So, welcome to our group. You'll find a bunch of people who understand how you feel, and you will also find a wealth of good, accurate information.
09-26-2008, 03:31 PM
I would like to thank everyone that replied back to my introduction email. Each and every message that was left inspires me knowing that there is hope, not only from a SLE perspective, but from a depressive, and anxious state. It's strange because I always felt like my depression stemmed from my joint pains. I've always been "happy go-lucky", someday that will this feeling will return in full force.
Oluwa, thanks for your message regarding the spiritual connection. I have been thinking about attacking my symptoms this way and it's nice to know that there are ways to connect with your body without focusing on religious beliefs (though this would probably help too).
Sits - thanks for your reply. My plan is to read various message threads. One thing that I found out from going through all of this is that you have to take care of yourself. You know when something isn't right with your body. At times, one may even need to get second and third opinions. It's good to know about the supplements too...
SaySusie, your reply is definitely much appreciated. Thanks for your welcome message!. I would like to give kudos to you because this site is spectacular. I'm glad that I have found your community and I do plan on contributing quite a bit. Regarding the depression, I think it has stemmed from both a clinical and a chemical perspective, though mostly chemical. I noticed that I feel most depressed and stressed when I am dealing with pains.
Hello KathyW1958 - thanks for your reply and your warm welcome. The mediciation that I'm on does seem to be helping me out, however, the depression and anxiety meds seem to have me in a "funk" quite a bit. Soon, I plan on coming off the depression pills, as I do have many more days when I'm feeling happy an energetic, which is a good thing
Hello Rob - thanks for your message. Sorry to hear about all the things that you have been going through. One thing that I have learned that happenings in life are just challenges that we have to overcome. I wish you nothing about the best regarding your recovery. I too had pleurisy and some off the wall symptoms finally has made some sense. Regarding the depression meds, they seem to be helping, though I plan on coming off of them soon. Thanks again for your post.
09-27-2008, 01:17 AM
You are most welcome Tony,
This board has been a wonderful support. I felt isolated with no place to turn for good information and there was the added bonus of people who really do understand the symptoms.
I've been surprised on quite a few occations to find something being discussed that I thought was just a quirk of mine. Usually the doctors just shrug their shoulders and say they don't know why something is happening.
But I've found good explenations here. It helps to understand what is happening to your body and share ideas about how to deal with it, or at least the empathy of those who are sharing the same path.
10-06-2008, 12:42 AM
You are very welcome Tony. Just know that you are never alone when you are with us. Also, there is always someone here who has been through what you are experiencing or who has good advice about what you're dealing with.
Most important....we are all here to help each other to understand, manage, and live with this illness!
Peace and Blessings