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This syndrome affects alot of people that have fibromyalgia too. Maybe with a superstar being affected it will bring a spotlight to these disorders now.
Sjogren's Syndrome: Venus Williams withdraws from US Open | Mail Online
Seeded on Fri Sep 2, 2011 12:55 AM EDT
Article Source: the Mail online- Enjoy this article? Help vote it up the 'Vine.
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I hope this will bring some interest from researchers and pharmaceutical companies now that someone well known has been diagnosed.
I have suffered from the illness for over 10 yrs and the treatments options are pretty much useless at the moment.
#1 - Fri Sep 2, 2011 12:58 AM EDTHey Virginia! It's estimated that between 35-50% of people with Fibromyalgia additionally suffer from Sjogren's. I believe I may also have Sjogren's (on top of the Fibro) because I have many of the symptoms - but I have only been officially diagnosed with Fibromyalgia, Endometriosis, Psoriatic Arthritis and 2 herniated discs (and two other lesser health issues). We do suspect there might be more wrong.....however, I do not have insurance and can't afford more testing/MRI's and with Sjogren's there is no single test to confirm the diagnosis. Ugh. My doctor and I are also suspicious that I may have Degenerative Disc Disease, but again, without insurance, I'm out of luck. I'm really a medical mess. I'm sorry that you have suffered with Sjogren's and let's hope that they soon find a cure for Sjogren's, Fibro and all the other conditions that people are suffering from. Be well.
Actually there is an easy test to confirm this illness. A simple biopsy of the saliva gland is done. I had it done by my rheumatologist and my son had it done by our family doc. They just take a small sample of a saliva gland from the lower lip for the biopsy. Both of our tests were positive for sjogrens. Also if you have severe dry eyes it may be due to sjogrens and is usually the first symptom. That can be confirmed with a simple test at any eye doctor.
So far the treatment I have received has been to alleviate the symptoms i.e. dry mouth with no treatment mentioned of the severe pain in my joints or the problems associated with digestion due to the illness affecting the mucus membranes of the stomach. Every doctor I have seen other than the rheumatologist acts like having a dry mouth is no big deal but I have lost all my teeth, can barely eat and what I do eat I barely digest so that I am currently 45lbs underweight.
The rheumatologist also told me that sjogrens will affect ALL the mucus membranes in the body so everything from internal organs to brain to vagina and joints are going to no longer be 'normal'.
The list of my illnesses since I was diagnosed with fibro has grown to include sjogrens, reynauds, osteoporosis, degenerative discs, lung cancer and arthritis but when I mention to my doctors that I am in pain they say they have be careful that I don't become too reliant on pain meds. Not one of them has said anything about treating the illnesses b/c there are no treatments just what they call pain management. And their idea of managing pain doesn't come close to cutting it. I am very lucky if my pain is below 5 on a 1-10 scale :(
We seem to have a lot in common, Virginia. My Rheumy always says she doesn't want to put me on strong pain killers because "I'm young" and she doesn't want me to "get too reliant on them or get addicted". It has been shown that people with Fibromyalgia do not get high or get "buzzed" from pain meds, unless of course, they are abused. I'm not addicted to anything (except ice cream) and I wouldn't abuse pain killers either. I am not getting the treatment or care I really deserve but without insurance, I basically do not have options. I am considering pain management but to be honest, that won't really work for me. I hate taking pills or medicine as it is and I know taking stronger or more pills won't really help or solve the issue, although I would at least have some relief and feel better. Everyone I've ever met or spoken to with Fibromyalgia is on much stronger medicine than me and now with the Psoriatic Arthritis on top of it, I should be on some kind of strong pain killer but I'm not because my doctor doesn't "believe in them". Because there is no real helpful treatment or cure, I live in constant, chronic pain that is at about an 8 to 10 every single day. It's getting harder and harder to live in this horrific pain but I don't know what else to do. I've tried everything and anything and nothing has helped. I'm out of options and that's pretty scary. So, I definitely understand what you are going through. Wish we had more options and help.
It's pretty sad that it takes a celebrity to come down with an illness before researchers take serious notice.
Regardless, I hope you're right and they find some help for you and others who suffer from this condition.
#2 - Fri Sep 2, 2011 1:40 AM EDTsorry to hear this ms. williams. i consider u,and sis great representatives of the u.s.,tennis icons men's or women's,and great american beauties. adore u both. good luck,and iwill keep u in my rosary.
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