Hello, I'm learning about Sjogren's. AGAIN lol. Little background....I was never sick growing up, athletic and very fit for years. Had odd little symptoms here and there, just enough to think - hmm, that's odd- then it would disappear. Started a family at 25, toxemia problems with both pregnancies, then became very very ill after my second child. Thyroiditis, allergies, asthma, fatigue, horrible brain fog, aches, pains, painful intercourse for a time, etc etc. Maintained exercise routines til 36 when I had to have a kidney removed due to a birth defect (left kidney malformed & dying in my right pelvis).
Anyway, a rheumatologist diagnosed me with fibromylagia & sjogren's. Put me on plaquenil in the autumn of 1999. Fall 1999 to Fall 2000 are very clear. I felt normal, had energy again, weight was falling off a pound every other week, pain was gone,sex was good again. Then things started slipping here and there.
I never went back or mentioned sjogren's again because I didn't understand it and no one told me to be concerned about it. So I went on my merry way. I stay busy so I have no time for doctor visits.
I had a surprise pregnancy at the end of 2005. Things went well, DR took me off thyroid medicine. Baby was born healthy. About 4-5 months later Jan/2007, I thought I was having panic attacks and DR said it was post partum depression. very high blood pressure, couldn't sleep, then exhaustion for weeks. Nothing worked. Long story short....it was thyroiditis again. I eventually started repeating the same process as in 1996. But this time I have very dry skin and my elbows and knees feel like they are becoming dislocated.
Superbowl Sunday, Feb 3, 2009, I had the flu. I was oddly sick about every 6 weeks since October 2007 and kept having a deep dry cough sounding like a seal. But this flu was extremely painful from the hips down. Even prescription painkillers didn't work (vicodin & darvacet). Then off and on kidney/flank pressure. I only have one kidney so of course I was concerned. I ended up in the hospital August 28, 2009. The pain was so painful all over, my kidney pressure was horrible, blood pressure all over the place (and my normal BP is 110/70 or 100/60). Worst of all, I felt like passing out and tried lying down only to have my heart race where I was having trouble breathing and became scared with pain & tightness in my chest.
March 3, 2009, misery took me to my old family physician. I paid out of pocket instead of using my HMO PCP. Bloodwork is indicative of Sjogren's again. HMO PCP won't refer me so I'm working with my old DR. (Great lady by the way.) I'm back on plaquenil now. First week, no side effects and hoping it will work like last time.
In retrospect, I feel I may need a maintenance dose after I settle things down. I'm 42.
I don't know of anything to relieve pain. Would suggest a massage therapist and soaking in a tub along with a sleep aid. Rest has done me more good. Even if it is just 4 hours......but its 4 straight hours of steady sleep. Moving around, walk.
as for diet.....I can only suggest eating the way your mother made you eat when you were little lol. Fresh fresh fresh. eggs, toast, bacon, fruit, yogurt......real meat, not processed, salads, milk.......lately studies have shown blueberries to be a wonder fruit. i do remember one recent summer being very happy and healthy and ironically was eating blueberries all summer because my mother didn't want to waste them. So I bought a 4 lb bag of frozen berries. Great half frozen on yogurt in hot weather.
This is my experience, sorry I could not help your friend in such great pain. You may want to enquire about a hyperbaric chamber. Maybe spinal blocks or cortizone shots. Morphine? They gave me morphine in the hospital for fear of a heart attack since enzymes showed up in the bloodwork. Took all my pain away.
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Hello, I'm learning about Sjogren's. AGAIN lol. Little background....I was never sick growing up, athletic and very fit for years. Had odd little symptoms here and there, just enough to think - hmm, that's odd- then it would disappear. Started a family at 25, toxemia problems with both pregnancies, then became very very ill after my second child. Thyroiditis, allergies, asthma, fatigue, horrible brain fog, aches, pains, painful intercourse for a time, etc etc. Maintained exercise routines til 36 when I had to have a kidney removed due to a birth defect (left kidney malformed & dying in my right pelvis).
Anyway, a rheumatologist diagnosed me with fibromylagia & sjogren's. Put me on plaquenil in the autumn of 1999. Fall 1999 to Fall 2000 are very clear. I felt normal, had energy again, weight was falling off a pound every other week, pain was gone,sex was good again. Then things started slipping here and there.
I never went back or mentioned sjogren's again because I didn't understand it and no one told me to be concerned about it. So I went on my merry way. I stay busy so I have no time for doctor visits.
I had a surprise pregnancy at the end of 2005. Things went well, DR took me off thyroid medicine. Baby was born healthy. About 4-5 months later Jan/2007, I thought I was having panic attacks and DR said it was post partum depression. very high blood pressure, couldn't sleep, then exhaustion for weeks. Nothing worked. Long story short....it was thyroiditis again. I eventually started repeating the same process as in 1996. But this time I have very dry skin and my elbows and knees feel like they are becoming dislocated.
Superbowl Sunday, Feb 3, 2009, I had the flu. I was oddly sick about every 6 weeks since October 2007 and kept having a deep dry cough sounding like a seal. But this flu was extremely painful from the hips down. Even prescription painkillers didn't work (vicodin & darvacet). Then off and on kidney/flank pressure. I only have one kidney so of course I was concerned. I ended up in the hospital August 28, 2009. The pain was so painful all over, my kidney pressure was horrible, blood pressure all over the place (and my normal BP is 110/70 or 100/60). Worst of all, I felt like passing out and tried lying down only to have my heart race where I was having trouble breathing and became scared with pain & tightness in my chest.
March 3, 2009, misery took me to my old family physician. I paid out of pocket instead of using my HMO PCP. Bloodwork is indicative of Sjogren's again. HMO PCP won't refer me so I'm working with my old DR. (Great lady by the way.) I'm back on plaquenil now. First week, no side effects and hoping it will work like last time.
In retrospect, I feel I may need a maintenance dose after I settle things down. I'm 42.
I don't know of anything to relieve pain. Would suggest a massage therapist and soaking in a tub along with a sleep aid. Rest has done me more good. Even if it is just 4 hours......but its 4 straight hours of steady sleep. Moving around, walk.
as for diet.....I can only suggest eating the way your mother made you eat when you were little lol. Fresh fresh fresh. eggs, toast, bacon, fruit, yogurt......real meat, not processed, salads, milk.......lately studies have shown blueberries to be a wonder fruit. i do remember one recent summer being very happy and healthy and ironically was eating blueberries all summer because my mother didn't want to waste them. So I bought a 4 lb bag of frozen berries. Great half frozen on yogurt in hot weather.
This is my experience, sorry I could not help your friend in such great pain. You may want to enquire about a hyperbaric chamber. Maybe spinal blocks or cortizone shots. Morphine? They gave me morphine in the hospital for fear of a heart attack since enzymes showed up in the bloodwork. Took all my pain away.
April 26, 2009 - 9:50pmThis Comment
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