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Living Life In Spite of Sjogren's / Re: Anybody from Perth, Australia
« Last post by Bigleyj on Today at 01:06:57 AM »
Really no-one??!!
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Living With Sjogren's / Re: angular chelitis relief...finally!
« Last post by trc1962 on March 26, 2017, 09:25:16 PM »
I have dealt with histamine inflammation for years, I just didn't know what it was. It was definitely made worse  by things I ate and all I could find online was candida. Then in 2011-2012 I had to be on prednisone and it was fully in remission and didn't return for a couple of years. When it did return I was determined to figure it out and realized that after benedryl I felt better and thus more research and ding...histamine intolerance. I asked my rheumy about a mast cell disorder and he said it isn't autoimmune in nature...but it runs along with my flares. Mine causes a red face, oily skin, hair loss, muscus in nose and throat, gerd, ear ringing and sensitive ears to noise and so much more. I hope the rheumy in seattle will have an open mind and actually check it out. In 2005 I took some probiotics and wow the pain and inflammation was very bad. I guess from the live cultures. I need to see a naturopath as some probiotics don't flare the histamine? Crazy, I know, but these things aren't imaginary at all.
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Living With Sjogren's / Re: About 4 months without chest/shoulder/stomach pain flare
« Last post by irish on March 26, 2017, 09:14:03 PM »
It is true that our stomach can cause a lot of issues. Many times people go to ER thinking that they could be having a heart attack and it turns out after a ton of heart testing, that they are having reflux.

It is scary cause stomach and back, shoulder pain can also be a sign of gallbladder issues. Glad you are having relief. Irish
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Living With Sjogren's / Re: Still having digestion issues
« Last post by irish on March 26, 2017, 09:11:06 PM »
Let me tell you what I have just gone though with my colon. I have been having issues for over 3 years and have done all that I could think of. I did ask my internist for an antibiotic that is for anerobic bacteria in the colon--several years ago I did this. It did help, but she ordered it for 7 days and I could only take it for about 5 days as I got such a gut ache from it. But I was a lot better--for a while.

Well it has gotten worse and the past year or so it has been bad. Interfered with my life also, shopping, etc. Finally got a referral to a new GI who is really good. She questioned me up and down and asked the questions that needed to be asked. She also calls poop---poop. I got a kick out of her.

She decided that it sounded like a had an infection in my small bowel and treated me with this same antibiotic I had years ago only for 10 days and for 2 times a day instead of 3 times a day. This hasw knocked the problem down about 9 % but I still feel like there is something going on only at a smaller level.

Then she also had be do the stool testing that checks for pancreatic enzyme insufficiency. This results in colon issues related to lack of pancreatic enzymes. These enzymes help in absorption of nutrients in the bowel. Without enough of these enzymes one has malabsorption of our food with resultant health issues. I had negative tests but I don't see her until the 1st of May and I will see how things go. I sometimes wonder if a small dose of enzymes would help me some.

The sjogrens affects secreting glands and the pancreas secretes these enzymes. Soooo, it is entirely possible that a lot of us with these issues could have a low grade malabsorption issue. At least with all the research I have done this does seem like a possible scenario. Good luck and hope you can get this figured out. Irish
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Living With Sjogren's / Re: Pain Management Clinic, Guilt, Thoughts?
« Last post by irish on March 26, 2017, 08:57:01 PM »
There has been a lot of good info here for you to ponder over. The one thing I will say is that Pain nanagement clinics have been around for a long time and I think there has been more negative feelings about them in the last few years because of the epidemic of people being addicted to these meds.

The other thing that is disturbing is that they have not come up with pain meds that do not cause addiction. My hubby was put on Percoan for terrible back pain plus the fracture of 5 ribs (seen on cat scan) following a fall. He was beyond miserable and it took 3 trips to the doctor to get him some pain control. He was on it for several months as he was older and osteoporatic and healed slowly.

When it came time to taper off he had a terrible time. I am a nurse so I knew how to do it and we did 1/4 tab taper a day and it took us months to get him off. He said never again would he take the med. That is the way it is. He did not know it would be so hard. Vicodin didn't bother him plus it didn't do much for pain either.

Pain control is individual and hard to assess so that is why it makes it hard to deal with. The sad thing is that the family docs don't know a whole lot about pain control and also don't know much about using antidepressants in pain control. It takes sometimes 3-4 different medications taken alternately to maintain pain control. This way the dosage of each individual med doesn't have to be so high. Tylenol is often used as are thhe NSAIDS.

I would tell you to hold your head high and make sure people are aware of where your pain is and what it is doing to you. Do not let the medical community get to you. If they are making you feel like you have done something wrong, confront them in an aggressive but not threatening way. Let them know that you need help with your pain so you can work and enjoy life.

 Shame on the medical community or any of our friends and family for making us feel guilty. Chronic pain is devastating and until one has experienced it they have not cause to place blame. I hope that you can get some help. Good luck. Irish
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Living With Sjogren's / Re: Symptoms relieved when sick?
« Last post by irish on March 26, 2017, 08:39:37 PM »
It could have been just luck or a coincidence. But with the autoimmune world who knows. I do not know the answer and have to admit that decades of sjogrens and other autoimmune diseases plus many viruses and infections I have never seen my symptoms be relieved.

Some things that happen with autoimmune disease have no apparent answers at the time. Just write this down in your book of things that occur and see if down through the years the issue has an  answer. That is the best I can do for you. Sorry. Irish
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Living With Sjogren's / Re: Aversion to Kissing
« Last post by AnneNeville on March 26, 2017, 05:26:26 PM »
Until I started the Prednisone and plaquenil, I was so anxious and keyed up all the time . . . kissing could be unpleasant because I felt trapped/smothered. It was very awkward because there was nothing objectively wrong. It's improving now. I'm also taking Wellbutrin and Prozac for the anxiety, but until the Sjogren's treatment, it wasn't enough.
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Living With Sjogren's / Re: Embarrasing incontinence question
« Last post by trc1962 on March 26, 2017, 04:50:05 PM »
I am  a bit incontinent with urine, but not the other. I do think mine is related to the neuropathy and possibly could be some CNS involvement as well. I am okay if I wear a mini pad, but a hard sneeze or cough and I have leakage. Hopefully it doesn't transition to my colon and I develop issues there. I wish you well and hope you can get answers to try and stop this as it must be quite distressing.
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Living With Sjogren's / Re: Gabapentin/Neurotin Alternatives?
« Last post by Jasper on March 26, 2017, 04:42:03 PM »
Rituxan infusions vastly improved my neuropathy.
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Living With Sjogren's / Re: Gabapentin/Neurotin Alternatives?
« Last post by trc1962 on March 26, 2017, 04:31:30 PM »
It is hard to find stuff that relieves nerve pain besides the 2 drugs you mentioned. I just can't function on even 200 mg of gabapentin - makes me feel out of it, tunnel vision and anxiety. As a teacher I have to be on my toes and so I just live with the wierd stuff of neuropathy when it happens. I should add that my neuropathy is weird in that it doesn't always show up and also presents with some weakness too, which is not supposed to be part of SFN. Anyhow, hope you can get some relief!
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