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sjogren's and pain management
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chunhua posted:
I was diagnoised (with blood test) with sjogrens about 2 years ago.I deal with severe dry eye, bursitis in my hips and arthritis in my fingers. I recently found out that I have a disk problem, spurs and degenerative arthritis in the middle of my back. I went to a back specialist who didn't feel I needed any follow up help. I deal with pain every day which gets much worse while proforming daily activities. My rumatologist doesn't seem to take my seriously. She acts like all I'm trying to do is get pain medication. Luckily my Doctor believes me and treats me with compassion. I have read alot about sjogrens and the pain that can be associated with it but most docs don't seem to make that connection. My Doctor has recommended a pain management center. Is there anyone out there who deals with sjogrens who can share info with me?
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greg8846 responded:
Hi ;
I don't have that medical problem but several others but i wanted to say one thing since your Family Doctor is so good
to you maybe he could find a really good Pain Managment Doctor. You need someone that will treat you with empathy. Also be careful about the injections for DDD because they can cause additonal pain and swelling, so please be very careful and good luck. Please let me know how your doing.


Greg Armstrong
 
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seminolearnp responded:
Hi Chunhua,
I was diagnosed with Sjogrens syndrome a few months ago, and have done alot of research on it. There are two types: Primary which occurs by itself and is usually less severe, and Secondary which usually is secondary to another autoimmune disorder and can cause you more health problems. My rheumatologist says that he's seen either of the two cause severe or minor complications. Just depends on the person, no matter which type you have. I think it's a universal condition that docs have to simply ignore complaints of pain. It is a hassel to manage pain patients, and they are at risk for being audited, held accountable, etc. I'm not saying I agree with this tactic but I've found you have to be very pushy and complain alot in order to get what you need. I'm probably on my 8th - 9th different doc at this point. Not in search of pain meds but answers. I understand the frustration your feeling, and I feel that way too all the time. I'm glad you've got a good Primary Doc that understands and prescribes for you. If you haven't had it done have your Vit D level checked. There are some interventional/alternative docs that check other things like cortisyn stimulatiing levels, and look at lab work differently then the more conservative docs. On the other hand, going to so many docs can be exhausting, as you may already know. Let me know if you have any specific questions. Take care and post often.

cj
 
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carrotoper replied to seminolearnp's response:
I just wanted to ask whoever is reading this discussion "Do all of you feel that your doctor(s) are just patching problems with meds? I never went to doctors when I was growing up unless it I was extremely sick. Now as adult I hate going in and having to repeat everything that I feel. I was on Morphine and now methadone and now the doctor wanted to put me on Fental patch. The patch would not stay on and as I was lowering my dose of methadone I was in extreme pain with nausea and vomitting. My doctor has never menioned a Pain Management Clinic? I am with Kaiser and although my present Dr is nice, it is as if he is looking politely through me. There must be something out there that is not in the opide family that helps one with pain. Does anyone have a suggestion so I can go in and bore my doctor a little more so I can get help? Because I really need help.
 
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_swank_ replied to carrotoper's response:
The sad fact is that sometimes all a doctor can do is give you pain meds. Some conditions have no cure and most of us in here will be in pain for the rest of our lives. Pain management doctors "manage" pain, they don't cure it. I'm happy to have a pain level that is tolerable and allows me to live my life. I think if I wake up and I'm not in pain then I'll most likely be dead. Opiates work for me and they are just another medication I need to take every day along with meds for other conditions. Pain control is not an exact science, everyone is different and it takes a lot of trial and error to get someone to a tolerable level.
 
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sexykain responded:
i know what you are going throw i have the same thing . i have lupus with it to other auto problem too . i had the same problem with the rumatolgist not listent .my family dr did . need some one to talk to i am here here is my email sexykain@hotmail.com
 
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Caprice_WebMD_Staff replied to sexykain's response:
Hi Kain and welcome to WebMD,

I hope you'll post on the forum here and give others a chance to get to know you. (We discourage members soliciting email, particularly when there's not been time yet for friendships to form.)

I'm sorry you're dealing with this painful conditions too. Thanks for reaching out to help another here.
 
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seminolearnp replied to carrotoper's response:
Hi Carrotoper,
There are other pain meds besides opiods but, you usually would have tried those long before you would be put on drugs like your on. It also depends on your condition and the conditions that are associated with it. What meds have you been on so-far? How severe is your situation? What other things have you tried? Not trying to be insensitive but trying to get a handle on your situation so as to offer help appropriately. Swank is right in saying that pain management is simply that, pain management. They do not usually diagnose or treat diseases in and of themselves but treat pain only. Be grateful you have a doc so willing to give you meds that relieve your pain. Not all of us are so lucky. Let us know what's up, and maybe we can help. I hope so. Take care.
cj
 
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chunhua replied to seminolearnp's response:
Hi cj, I think the tricky thing about sjogrens is that the aches and pain move around. For example, I had a period of time that my hands were so stiff and sore that I could hardly turn the key to start my car. I did get a cortisone shot in my thumb which really helped. Then my feet decided to get in on the act and I could hardly stand for any length of time. my rheumatologist suggested certain inserts for my shoes which helped. I can no longer walk bare foot and have to have really comfortable shoes to stand in. My bursitis is an on going thing that gets inflamed if I bend at the waist or sit on hard surfaces.I was taking advil for a long time which really does help but now my stomach is messed up and I know its the advil. I have been using a pain med very sparingly when needed. I know my Doc knows I don't abuse it and is willing togive it to me. I have to say that I am 53 years old with two daughters who are 10 and 12. I am trying to keep myself as close to my old normal as possible.
Thank you for suggesting the vit d test. Do you deal with the dry eye? My eyes do not product tears at all. I had the ducts plugged about two years ago. My dentist also watches for dental decay because the dryness can cause decay.
I think the worst thing about this is that your life gets so screwed up but certain people don't believe you or the degree in which you say you deal with pain. I guess I am just learning that this is chronic and try to live one day at a time.
Chunhua
 
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chunhua replied to greg8846's response:
Hi Greg, Sorry it's taken so long to reply but I wanted to ask, What is DDD? I think I am just as interested in finding out what not to do as what to do.
Chunhua
 
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annette030 replied to chunhua's response:
DDD is the medical abbreviation for degenerative disc disease.

Take care, Annette
 
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badgenes2009 replied to carrotoper's response:
Have you ever thought about gluten/wheat/rye/barley being the cause of your nausea? I have had gut issues all my life leading to many health problems. I have migraine,sjogrens, raynauds, joint swelling and pain. I discovered over time I also have Celiac Disease, not uncommon with other autoimmune disease's. It took months to feel better and only one time of ingesting wheat again to make me very ill. The longer I stay away from it the better I feel. Check out this site it might help you:http://glutenfreeworks.com/gluten-disorders/celiac-disease/
 
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chunhua replied to badgenes2009's response:
I looked at the site and found it very interesting. I want to start paying attention to when I have flair-ups and what I have been eating. Thanks for the info. Sherry


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