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I was talking to a dear friend of mine yesterday and she was telling me about one of her best friends, who has been diagnosed with Sjogren's Syndrome.
Her friend has been to multiple doctors (25!) and was treated for MS for 6 years before they discovered she actually had Sjogren's Syndrome.
This poor woman needs your help.......If you have Sjogren's and can help answer some questions below, it would be so helpful to her and to everyone who's trying to advocate for her.
She is simply not able to get her pain under control. I don't know the whole story, but it's something about the doctors not wanting to give her pain medication??? She is clearly suffering and needs pain management.
These are the questions I was wondering about:
-What is typically prescribed for severe pain for Sjogren's patients?
-Is there a diet she can follow that will help her?
-Ever heard of IVIG?? It's a drug to treat Sjogren's.
-Anyone being infused with IVIG? She has to have infusions every two weeks and it costs $8,000. Per treatment.
-Any other drugs you or someone you know is taking for Sjogren's?
Ladies, this woman is one of us. This was a woman who was on top of the world. Then she got sick, couldn't work anymore and is now in a very serious situation, physically and mentally. She may have to move, give up her place and a city she's loved. And on top of all of that, she continues to battle with her insurance company every single day over her infusions.
Honestly, we all think this could never happen to us.... But guess what-- it does.
If you have any advice, tips or can share your own story about Sjogren's Syndrome, please feel free to post back to me. I know my girl friend would be most appreciative, since she's trying to advocate for her friend. There is nothing worse than having a dear friend who's sick. I know all too well as I lost my best friend to lung cancer. And trying to advocate for her was one of the toughest things I've ever done.
Any information you can offer will be greatly appreciated. It sounds like she's in desperate need to get her pain controlled and to try and keep her life from totally unraveling.
Big hugs,
Michelle
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I was recently diagnosed with Sjogren's type B that affects connective joint tissue and internal organs. I perspire, cry and salivate just firn, but my insides are eating themselves up. The pain in my joints is excruciating. You have to live it to know it. Sometimes I think the doctors lack compassion when it comes time to prescribe pain medication. I feel awkward asking for pain meds, but the pain is intolerable. I pray for your friend and wish her the best of luck.
May 25, 2012 - 11:17pmThis Comment
Oh My..so many suffering. Me..Breast Cancer, Mycosis fungoides ( non Hodgkins lyphoma)...low thyroid and polps, RA., Sjogrens.. I have had every RA drug without results...now I am doing pain clinic..double hip injections, double shoulder injections, neck epidurals, spinal epidurals. It helps...but wish I could have all over relief at once. My big question today is WHY is'nt there an eyedrop that can help the eye pain??? It is unbearable. Pain meds tha i take for my RA do not help my eye pain...it feels like glass in my eye. Usually one eye at a time. I have many rituals..specifically for my eyes..lubricated eye drops all day..maybe as much as 15 times a day. Johnsons baby Shampoo to wash my face and eyes..then right before bed time I use the eye gel in both eyes faithfully...Also for the dry mouth I use biotene toothpaste, mouthwash, spray ( by bedside and in my purse)...it helps. The cost of these medical supplies is really tough. Listen, Girls, I am praying for all of you!! Hugs and Chin up! MJ
June 13, 2012 - 11:44amThis Comment
I too had hoped that the tennis star would come forward with her illness yet she has not---Julian Lennon (yes johns son)-google him he does a lot of work for Lupus etc..seems it is all for a friend of his he watched suffer so bad--she is the LUCY in "LUCY in the sky with Diamond" other than him-I think most career actors are afraid to come out about their illness as it may affect their jobs status-all of us would be out there too and boy they wouldnt want that.I think when someone gets it bad enough-when all choices are gone and the Lupus /sjogrens chooses for them then they will come forward..I cannot make appointments ahead of time-I cannot tell you if next week on tuesday I will be able to get up and make it to where ever..people used to tell me ""i have it too but I won't let it beat me" BS sorry but sooner or later you have no option of choice-then you stop worrying about tests and diagnosis and start to just deal with one day at a time and whatever symptoms you are having.I don't want you to loose faith but face reality-listen to your body..
April 21, 2012 - 6:47pmThis Comment
Absolutely listen to your body. If you feel yourself going down, get into bed and rest. Start building your body back so the flare up isn't that bad. I am out of my flare up. I was able to do a wedding photo shoot that was from 1:30 pm - 10:30 pm and I was fine. Still depending on good vitamins and good natural food and God. Put good in and get better out of your life! Live to the fullest every day that you can!
April 30, 2012 - 7:32amThis Comment
Hello, I too have Sjogrens. The only thing that manages my pain is Prednisone. If I miss a dose my body figuratively, but almost literally screams out in pain. The pain is worse the higher the inflammation is. So, I have blood work done regularly to keep an eye on it. Outside of that I take plain old Aleve (yellow and white capsule). Best of luck, Kim( a fellow sufferer).
February 24, 2017 - 4:42pmThis Comment
Thanks for your post on alfalfa. I have such a myriad of annoying problems, maybe it will help. Not out anything but a few dollars. So going to give it a try and see if I get any energy back.
April 20, 2012 - 5:28amThis Comment
Finally, feeling relief again. Still in the flare up (BUT seeing my way out!) Pain is starting to subside, strength coming back, the tunnel is getting brighter! Taking 20 alfalfa's right now, so glad I found this natural anti-inflamatory! Making myself eat really good foods! It's worth it! Hope everyone has a great day today!
April 20, 2012 - 5:12amMelanie
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Hello. I spent almost an hour today writing in this 'reply' box, and I gave explanations pertinent to the questions I then asked - which were very important to me. When I tried to submit it, the whole thing disappeared. How discouraging. I was SO in need of connecting to anyone who might have information on the treatment I am considering. Let's see if this works. Maybe I'll have the heart to try again tomorrow.
April 17, 2012 - 6:04pmThis Comment
Keep trying, don't give up. We all at least have each other to write to. I have been up since 4 am b/c I can't sleep... I hate flare ups! I have been living normal for 6-8 months and now I feel slammed, exhausted, weary, mouth sores, dry eyes, headaches, just want to put the covers over my head... but we can't! I have started my strict diet again... eat as much fresh fruits and veggies as possible, no meat! Try alfalfa, I'm telling you it is a miracle for me. (I stopped taking it for a week or so and I know that is why my entire body feels like it is swollen) PLUS, I am dealing with some stress right now that is really hard for me. STRESS I am convinced causes flare ups. I take omega oils for my joints too.
April 18, 2012 - 2:14amI know that recently someone in Hollywood was diagnosed with Sjogrens... as bad as I feel for her, I thought through this, she may be a tool to bring more information and research to Sjogrens. OR those young doctors coming out of University that want to make a name for themselves might start researching. Until then, we need to keep posting and helping each other.
(make sure you click the save bottom on the bottom so your post will show up.... I'm not sure otherwise what you could have done wrong, maybe a computer glich!) Take heart!
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Hi it is me Lynn I have posted here a few times in the past few years.
An Update-I had to have all my teeth pulled because of the Sjogrens-it was awful and considering I am on disability and medicare doesn't cover anything with teeth unless it is 'out of the ordinary"ah HELLO?
One of the best oral surgeons in our area did not know what sjogrens was/is'oh just dry eyes and mouth"
HOW could he not know?
I have run into so many MDs who know nothing about this horrible disease.
I ended up walking around for a year with no teeth-and I had to be hospitalised to have the teeth pulled because I just had Bypass Cardiac Surgery.
1,600.00$ by the time all was done and I had false teeth.A relative felt sorry for me and paid this. I even wrote the President of the USA.
How can Medicare not pay for eyeglasses or dental issues with sjogrens patients as it is a disease process.I am only 54 but what about someone more elderly?
If you can't see-you fall
if you cannot eat-you lose weight and become unhealthy.
Needless to say Mr Obamas office wrote back asking for a contribution-which means no one looked at it.
I have no recovered well from the cardiac surgery.
Just the way it goes.
My pain remains under control with the Kadian.
I have never had to increase the dose.
I notice I grow weaker every year-age and illness.
I still meditate -do stretching yoga-music therapy...
April 16, 2012 - 6:37pmI have given up meat completely
I no longer smoke
I walk daily...
Chronic illness is so hard on the Brain and Emotions
it remains a constant battle to stay afloat.
I now talk to people online and I mail-information about the illness to every MDs address I can get..it seems less threatening to them I think--most MDs I have appraoched feel very uncomfortable because they have no clue about sjogrens..
If I ask them if they want info they say no so this way it just ends up hopefully in their box somewhere and they take the time to read it all.
Hang in there everyone.
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