not knowing...

Carolyn - posted on 11/18/2010

Considering all the symptoms i have with my diagnosis of SLE, it seems to me that much of what you're suffering from can be found under the 'umbrella' of Lupus. Lupus can take on some many forms and i understand your mental frustration in not having any real answers. I'm not a doctor, but I have learned over the years of suffering and frustration, stress and anger only makes matters way worse. So, may i suggest you take the time to focus on the more positive and enjoyable moments in your life and put it all in God's hands. NOTHING is more important than having a relationship in Jesus Christ and trusting that He is working it all out on your behalf. I truly look forward to a testimony in the near future for you! TTYL, Carolyn

Kathleen - posted on 11/16/2010

Hi,
I don't have the same symptoms, but I have Chronic Neuroapathic Pain with some other illnesses thrown in there. I have many secondary illnesses that have come on b/c of initial injury (epidural w/ second baby). I would take a journal for a month and write down all of your symptoms and then go online. You may be able to track some things down. I was able to figure out that I had Cushingoid symptoms w/out a formal diagnosis until now 3 years later and a whole whack of money later.
When pregnant your hormone balances change - maybe have an endocrinologist or another type of Dr. take a look at your progesterone and testosterone levels. Also, look into Vitamin B and D levels. You may have felt better too if you were taking your prenatal vitamins. For vitamin B you can't have toxic levels but you can with Vitamin D so you need to have your levels tested and then a prescribed amount given by a Dr. You may want to get your cortisol levels checked too - mine were elevated for more than 3 years due to pain and nobody would listen to me - and now I have a whole mess to clean up in my body.
You can see some resources on my blog http://chronicpainjournal.wordpress.com
Hope you are feeling better, K

Carolyn - posted on 08/15/2010

Hello Meg, while reading your post I was shocked at how many of your day to day symptoms I've experienced everyday as well. I have been diagnosed with Lupus in 2008 and since then, as you stated, it's been one thing after another. One thing I've learned while being sick with this disease is that it poses as an umbrella to a host of other syndromes and diseases that are considered secondary to Lupus. I am convinced that Lupus is the culprit to all of your complaints. My question is, are you seeing a Rheumatologist who specializes in most autoimmune diseases (esp. lupus)? If not, I beseech you to get a referral - if needed - and go see one. They are trained at listening to all of your symptoms and putting them together and finding syndromes and dealing with each of them. Whether it's a more aggressive medication, therapy, or preventive advice, it will be well worth your while. Now-a-days I have been experiencing more days of 'relief' than bogged down and sick. I am thankful to God for His grace in sustaining me each day as I have five children and the youngest daughter with autism (4yo). One more thing, as your doctor to check your vitamin D levels and to consider putting you on a daily regimen. Since i have been taking them, I have noticed some improvements in my severe Lupus symptoms. Also, since taking Symbicort inhaler everyday, my pneumonia and chronic coughing, bronchitis, asthma, pleurisy has been better controlled. i'm not saying that all my symptoms are gone. However, i'm sure you can relate with me on saying that even a little relief from the constant agonizing, unpredictable pain is better than none at all. I sincerely hope and ernestly pray that you will find something in this post that will help - whether it's physically or spiritually. Carolyn. Take care