Determined to improve

[Gorn]

I had a pretty good day today, after surviving a just horrendous summer ... thought about suicide more than I care to admit.

Woke up not feeling shitty (!)
Put in a pretty full day of work, ran an errand at lunch. Did some grocery shopping after work. Mowed the lawn. (Ok, only the front lawn.) Made dinner for myself and my son. 
And here I am with energy left over to do a post on this here forum. 

This is how it used to feel.  This is what normal people do every day.   

So ... I am trying a Paleo diet, making anti inflammatory exclusions (no eggs, nightshade plants, most nuts, beans).  I exercise at least every other day, although sometimes this requires what feels like superhuman effort.

I had an appointment earlier this week and tried acupuncture. The acupuncture provider put me on some Chinese herbs which I'm taking daily. I have no friggin' idea what they are. I suppose I could look them up, but honestly I don't care if they are 99% arsenic as long as they help me feel better.

What are you doing to try and feel better?

[WhatYouSjo]

Hi Gorn,

I understand how you feel. While I have more or less accepted that I have Sjogren's Syndrome, I do everything in my power to treat it. That generally means medications, diet, exercise, supplements, and alternative therapies. It sounds like you are already pursuing them and seeing some positive results. Two alternative treatments that you might be interested in are low-dose Naltrexone and helminthic therapy. Both have helped me, though I've experienced a side effect that has forced me to stop taking LDN for the time being (vertigo). That being said, a number of SS patients have found it helpful.

For prescription medications, I take Plaquenil and Restasis. I also take a variety of supplements, including vitamin C, D, K, Ubiquinol, and more, which I've described in the treatment regimen section of my blog, which is linked in my signature.

Some people have had luck with biologic drugs, particularly Orencia (currently in phase 3 trials for SS) and Rituxin (mixed trial results). Both of these drugs dampen your immune system, can have dangerous side effects, and are very expensive. Some people use disease-modifying antirheumatic drugs like Methotrexate and Cellcept, which also can have serious side effects, but are less expensive. All are also off-label and not generally prescribed for patients unless they have serious complications from SS. While it sounds like your symptoms vary, you may want to ask your rheumatologist, especially if you have serious arthritic symptoms.

I wish you the best of luck. It always feels good to have a good day. I hope you can have many more.

[Carolina]

Dear Gorn:

If you have an autoimmune or Immune system disorder, the attacks on your body cause Inflammation.

The three major effects of Inflammation are:  PAIN, PROFOUND FATIGUE, AND DEPRESSION.

DEPRESSION is the most insidious for me because I think it is ME, not my Immune Disorder.

I take Cymbalta, an antidepressant also on label for pain.  But when I am in a flare of my Immune Disorder, depression sets in like a black fog.

Please let us know what conditions and treatments you are currently doing.   Ask questions and give us information.

Regards,  Elaine