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Thursday, August 16, 2012

What you should know about invisible illnesses – Part II

Updated August 17, 2015

Click here for Part I

I used to look like this when the pain wasn't as bad.
I think this was taken January 2012.
Yesterday I mainly talked about fibromyalgia so I’m going to finish up with that then explain some of the other stuff that’s going on with me. Fibromyalgia [fahy-broh-mahy-al-juh] is considered by some to be a neurological disorder. “The prefix "fibro" means fiber or fibrous tissue, the term "myo" refers to muscle and "algia" relates to pain. The condition fibromyalgia involves systemic pain, particularly soreness in the joints, soft tissues and tendons. The cause of the disorder remains unknown, but it primarily affects females between 20 and 50.” All of what is described in that quote, (which I believe I pulled from is what I deal with and as the HSS experts go on to say, associated symptoms can include anxiety, insomnia, headache, fatigue and depression. Yes, I have suffered – and still do suffer – from those symptoms. Before I began receiving treatment, the pain, fatigue, anxiety and depression were so intense it would leave me too incapacitated to move.

According to HSS, “if physical therapy, stress relieving activities and regular exercise fail to produce results, physicians resort to prescription of muscle relaxers or antidepressants to reduce pain and help improve the sleep patterns of patients.” The medicines do help - off and on - but there are bad days when nothing seems to help.

About Sjogren's Syndrome

(c) 2015 A lot has changed since that picture above. My
illness is invisible is still invisible and now I feel invisible.
Sjogren’s (show-grins – Can you tell that’s my pronunciation?) syndrome. It’s “a chronic, systemic autoimmune disease that predominantly affects women and targets the salivary glands (in the mouth) and lachrymal glands (in the eye). The involvement of these two glands results in dry mouth and dry eyes (also known as sicca complex). The damage to salivary glands in Sjogren's syndrome cannot be reversed, but the symptoms can be controlled and, rarely, the disease goes into remission.” 
There are two forms of Sjogren's syndrome:
  • The primary disease occurs when you experience dry eyes and a dry mouth. Fatigue and joint pain can also accompany the sicca symptoms.
  • The secondary disease occurs when you experience dry eyes, a dry mouth, and another associated autoimmune disease**. Sjogren's syndrome may precede lupus by many years; however, it more often occurs late in the course of lupus. Sjogren's syndrome occurs in about two people of the general population, but in 20 to 30 people who have lupus. Rheumatoid arthritis and scleroderma can also be associated with Sjogren’s syndrome.

**My other associated autoimmune diseases are fibromyalgia AND multiple myeloma. You can read more about that in a health update.

Sjogren’s syndrome is difficult to diagnose, which often means one goes years after symptoms have begun before receiving a correct diagnosis. That is what happened to me and also one of the Williams’ sisters. Environmental contributors like viruses and stress in conjunction with other factors are believed to result in the disease development and can effect the management of it.
It’s these types of diseases and conditions that prompted the development of National Invisible Illness Week (a free virtual conference), which is scheduled for September 10th through the 16th this year (2012. It's September 28th to October 4th in 2015). About two years ago, I participated in the meme 30 Things About My Invisible Illness You May Not Know. At the time I didn’t understand everything about sjogren’s, which is considered a form of lupus, and I wasn’t being treated for multiple myeloma. When you get a moment, take a peek at my 30 things.

In reviewing my list, I noticed there are some things that need to be changed, but it’s still relatively accurate two years later. I don’t feel as bad as I used to on some mornings and evenings because of the medications, and that’s a good thing!

Over the next couple of months, I’ll talk about invisible illnesses some more. I hope this post, albeit long, educated you on something that affects more people than you probably know. When you find out someone suffers from an invisible illness please don’t tell them to let you know if they need something; simply offer a helping hand. Ideas for things to do:

  • “I’m going to the store, can I pick you up something?” 
  • If you stop by and a trashcan is overflowing or dishes need to be washed, just say, “Where are your trash bags?” or “Let me wash these dishes (or clothes!) real quick.” 
  • If the person has young children offer to drop off a pizza or take the kids out to lunch or something. 

Believe it or not, every little bit helps and you’ll never know how much of a blessing you can be to someone who suffers in silence every single day.
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