adjustments are necesssary

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New Member

Date Joined Oct 2013
Total Posts : 1
   Posted 10/11/2013 8:21 PM (GMT -6)   
redface  I was just diagnosed with lupus 2 weeks ago, for me it was a relief. I have had cronic pain, suffered the arthritis including gout along with nerve damage, difficulty sleeping because of the pain, being tired, confused and feeling quilty because of not being able to socialize or take care of my home at the paced I use too. All my doctors said was I was getting older and slowing down. So I adjusted, I started listening to my body, sleep when I want, clean when I had the energy and take pain meds when I hurt, changed my diet. Very depressing for me, Oh took those too. Right now I am angry with my doctors, it took the third doctor to test me because I had a gout attack, however the inflamation was so bad it burn skin on my feet, that caught her attention. I had complained for 6 yrs, and was told I was just getting older, I m 65. My spriit is good and I will adjust whenever I have too. Durring the last 6yrs others have faded from my social circle, I was the one who got tired of explaining how I felt. At first I felt abandoned, but now I feel ok, they werent people who cared anyway. I take lots of meds none for lupus, but for the symtoms that I do have. I know what I can and can not do, I have adjusted my house to keep me safe because I live alone. I still work, my job allows me to sit and stand when I need too. I have told the staff of my diagnosis they are trying to adjust now:) I work with some good people. I will continue to adjust.  

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 10/11/2013 9:12 PM (GMT -6)   
Hello rosem:

I'm so sorry to hear that you've been basically ignored by your Doctors for the past 6 years (((hugs))). You should be angry at your Doctors for not listening. However, lupus is a tough disease to get a diagnosis with. It can present itself as so many different diseases. What you experienced can be very common with getting our lupus diagnosis. It took my doctors 13 years before the finally committed to saying yes I do indeed have lupus.

I noticed you said that you're not taking any medication for your lupus but medications for your symptoms, can you please share what you're taking? I'm not sure if you know that lupus isn't curable, but it is treatable and you need to take specific medications to keep under control IF NEEDED. Your Doctor will be the best person to make that decision. Most lupus patients take plaquenil at a minimum with their lupus. Others take a bunch of medications.

Lupus varies from patient to patient. It can be mild in one person and severe and life threatening in another. We have a member here who is waiting for a kidney for a kidney transplant. Yet, we have another who had a severe case where he was paralyzed and is now medication free. I'm hoping Bill will be along to give his story to you.

Are you seeing a Rheumy to treat your lupus? If not I would make sure that you get one that knows how to treat lupus and auto immune disorders. They are the ones who are best qualified in prescribing medications that will keep your lupus quite.

I'm sorry about your friends, lupus can really take a lot away from us. Once your pain and symptoms get better you'll begin to feel and may make new friends. If you have any questions please ask away. This is a great bunch of folks and there is bound to be someone who can answer any questions you may have.

Again welcome to the lupus forum, looking forward to getting to know you better. Please let us know how you're doing.

DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 10/11/2013 9:13 PM (GMT -6)   
I'm glad you have found what works for you. Lupus is a life changer.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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