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Sjogren's Syndrome.... I need your help with treatment and Pain Management

By Expert HERWriter April 9, 2009 - 4:09am
 
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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

Add a Comment62 Comments

EmpowHER Guest
Anonymous

I am 32 years old and diagnosed with Lupus and Sjogrens disease. Wow it took me about six years before being diagnosed and the only reason, I was diagnosed, was because I am a nurse and I'm also in med school trying to be a doctor and had to self diagnosed myself. at first the doctor thought I was making the whole thing up, even the labs until he checked my labs, and even before seeing him I was put on pain management about 5 years ago, around 25 or 26 years old, I have been through a lot of people thinking very bad things about me thoughts like I was a drug addicted and I was way to young for prescription drugs but if you have ever had lupus and sjogrens disease, let's just say it feels like cancer everyday and ms all rolled into one disease and your suppose to function and act normal and try to work and you don't even have enough energy to even brush your teeth. It's funny because doctors help write books and see people in pain and read these symptoms of people in a lot of pain but don't want to help relieve the pain or give something strong enough to stop the pain, would you not give a cancer patient pain medication? Would you even have to ask are you in pain ? Stupid! I'm so serious it's not even funny. Not only do you have pain, but you have pain in all your muscles my heart and liver, my brain my bowls my neverous system my penis etc. are being attacked in my body as we speak and my eyes are dry and feel like rocks and I'm not sure if it's just me but I hear a sound like a kinck or a fluid sound in the middle of my head and my mouth no matter how much I floss or brush it bleeds and my breath stinks And if I don't brush early in the day I'm so tired I don't have enough energy to brush before bed. I can't move for hours when first getting up and I get so stressed out, I have to go to bed early or you feel so dizzy like your going to pass out and oh and don't stand up to fast or you will pass out. I was first diagnosed with anxiety depression and bipolar, its funny now but at that point then I almost jumpt off the building, ok I didn't but it was that bad, I was hallucinating and seeing things and very low and depressed. I also was diagnosed with ibs/ibd fibromyalgia devics ,migraines oh god everything. I haven't started treatment yet so that's probably why my comments are all negative and oh also I tell the truth and I try to explain it so that everyone can understand me and maybe it's the nurse in me. I have to say one word that sums it all up, I would say the one word would be HELLLLLLLLL. Lucky for me I found it early, so treatment can prevent further damage to my organs and my Lupus and sjogrens loves my liver right now and so I'm at risk for liver cancer or cirrhosis of the liver. I believe your at risk for cancer anywhere your also at risk for heart attacks and cirrhosis of the liver and strokes and I also seen something about it all turning into MS later down the road. I consider this to be cancer, cancer it does Almost the same thing, just randomly attacks an organ and can spread to other organs if that makes sense. It feels just like ms but probably won't be hospitalized, unless you have a rare or more severe case and in my case, I have both lupus and sojgrens which makes my condition 50 times worse, than just having Lupus or sojgrens by itsself. I think there are 3 really bad disease one is MS two is Lupus and 3 is sjogrens disease. I read something that said if you have sjogrens disease the your 60% chance of having an overlapping disease or autoimmune disease the other two are lupus SLE or MS. In my case it's lupus and Sjogrens. Also wanted to tell everyone and give them hope becuase even though you may not test positive on some test but have the clinical symptoms you can still have and be diagnosed with that autoimmune disease there is no one kind or type of disease it's not like your average disease like cancer or diabetes etc. so don't give up but don't be a hypochondriac or make up symptoms or continue with something if you don't have at least 4 5 or even 6 of the 11 or 12 symptoms also your body is unique so for me I just got a small patch on my face I didn't get the whole butterfly rash thing so I was almost mis diagnosed again until i remembered the rash I had 3 times. Anyways on a positive note I would be willing to offer support for people that are newly diagnosed or not sure if they have it or confused or where to go get labs and what labs to do or where they can do cheap blood lab work, I have done it all I am not a doctor but I am close and give good information and love to help. I would be willing to help people that have love ones or that don't have a medical background and are unfamiliar or confused with this disease particular disease. I am familiar with most diseases and if I'm not I can look it up and have an answer in a couple of days, it's fun and I feel like I'm helping while I'm sick in the bed

March 11, 2018 - 5:23am
EmpowHER Guest
Anonymous

I became symptomatic in 2007 it's been an educational journey that's for sure. I currently take plaquinil/Carbamazaphine/Nadalol/
Cymbalta and have IVIG treatments every two weeks. Also just started medical Marjaauana.

With all levels this I am able to control my pain so much better. I will never be pain free this I know but at least I'm much better then I was and can function so much better. I have Sjogrens with cranial and perifrial nerve involvement with small nerve neuropathy and trigeminal neuralgia. You need to have a doctor that is a Reumetoid Immunologist. I went through a variety of different medications before finding what works for me. Some meds the side effects were worse then the disease. You need a doctor that works with you to find the right combination. It's a long journey but keep fighting

July 15, 2017 - 1:05pm
EmpowHER Guest
Anonymous

I take morphine 3x/day. They had me on hydrocodone, but eventually I couldn't take the pain and ended up in the ER. Sometimes you have to advocate for yourself by pushing and not taking no for an answer. Protest! Cry in front of strangers! Tell them if the pain is TOOOO much. I was admitted and they could see that my pain was real, but I had to let all my frustrations out and be an emotional mess for a bit, which I do NOT usually do to strangers. Also, for those with mouth pain, there is a prescription mouthwash in a little brown medicine bottle called Magic Mouthwash, and it truly works! Rinsing a few times starts mending the worst sores. You have to have your dr prescribe it. Another thing, IVIG is not a drug. It's the result of 1000-1500 blood donations, which are then used to extract immunoglobulins that are part of and a boost to the immune system. That's why it's so expensive.

November 25, 2014 - 7:51am
EmpowHER Guest
Anonymous

I got some relief from a butrans patch (10 mcg) but also use nuycenta, hydrocone, and oxycodone on occasion. An alprazalam with the pills will help, the mildest. And still the pain can just be grinding. You cannot think of two things at one time, so watch a movie, do needlework, anything to concentrate on something beyond the pain. It is a challenge. My pain has gotten much more severe, and Dr.s act like you are making it up. Mine is in nerves. It is miserable, and dictates what I can do every day.

November 21, 2014 - 9:38pm
EmpowHER Guest
Anonymous

Hello there! I hope this finds your friend suffering from Sjogrens doing well. I was diagnosed with Sjogrens almost 4 years ago. I do take pain medication as my joint and muscle pain are a serious problem. However, I also have issues with skin rashes, failing eyesight and my teeth are falling out. I believe that this disease is very misunderstood and one that someone must experience to understand. The doctor's are not compassionate to the pain associated with this disease. Much more research needs to be done. Hang in there. don't give up your search for a competant doctor. Best of luck.

August 22, 2014 - 12:30am
EmpowHER Guest
Anonymous

I am like your friend. Live in Australia. Noone can help me-please help. PAIN IS UNBEARABLE. dry eyes and dry pleurisy out of control. i see no point in going on.

August 15, 2014 - 10:17pm
EmpowHER Guest
Anonymous (reply to Anonymous)

And i am just like you!!, so I know how you are suffering. And quite frankly, if it weren't for having to care for my 92 yr. old mother, who has dementia, and my two beloved Siamese cats, I would be considering something drastic----as you are, I hate to say. So I must tell you about something that may very well help you, though I don't know if you can get this treatment in Australia. I live in Utah, USA, and my doctor is an MD, a DO, and a Naturopath too. He is the only doctor in my area who can get the therapy, which is one injection per month, but because it is not a drug or pharmaceutical, and from Europe, it costs us a bomb---$300 per injection!, as our insurance won't cover it. The serum comes from Spain, but at least he can get it. It is called a SAM Peptides therapy (Sequential Amino Acids Modulator), and you can get a general serum that helps pain so much with things like arthritis, most auto-immune diseases, Hashimotos Thyroid, fibromyalgia (of which I have all!)etc., even diabetes. But it can also be for particular problems only, like Sjogrens, of which I have a particularly vicious case of now. For one year, which is usually the duration of treatment for good and or permanent results, I had much pain relief and was feeling on the mend----until I had a severe dental abscess which necessitated surgeries, drugs, anti-biotics, etc. which totally ruined my progress, caused bowel and gut problems, weight gain, diverticulosis, and then the Sjogrens kicked in worse than ever. My eyes started to fail, hurt terribly, could barely see, and the nerve pain (peripheral neuropathy, bursitis, spinal syringomyelia, crushed vertebrae) became absolutely intolerable, as did the dry eyes and dry mouth. I was at the end of my rope, and in total misery! The doctor then told me I could get that serum specifically for Sjogren's, and I just had my second injection a few days ago. I am truly astounded at how much better already my eyes feel, etc.!! The grittiness, burning, pain and tearing are so much better, and I felt the relief the very next day. I use Homeopathic eye drops with no preservatives, as well. I purchase them online from Natural Opthalmics RX and choose the Womens drops for Dry Eye, Sjogren's problems, and hormonal imbalances. So far I am having good luck. So----please do not give up!, and I hope you can find a special sympathetic doctor who can get this wonderful serum for you. But it requires that you cease all medications (drugs), particularly steroids, and in my case the Thyroid meds (which made me so ill!), as they will inhibit the success of the SAM injections.
I wish you well from the bottom of my heart, and hope you can find this treatment where you live. Also, for pain in bones, joints, nerves, muscles, skin, etc., I have recently found out about something called OptiMSM (pure Methylsulphonylmethane), a natural sulphur compound. I ordered mine online from the Kala Health company, via Amazon, but it only arrived today, so have not tried it yet. But do look it up, and perhaps it will help with the severe pain caused by this horrible Sjogren's disease!
I hope this helps you, and I wish you well----
God Bless and Good Luck!!!

February 9, 2018 - 6:43pm
EmpowHER Guest
Anonymous (reply to Anonymous)

U need 2 find a good dr that will listen to your needs and help u treate your symptoms. I'm a 27 year old mother of five kids. I was a NAC/medtech at a retirement home I worked 75 hr a week . I was in nursing school . I got diagnosed when I was 24 years old with RA . Now I'm being told I have sjogrens and fibromyalgia . I'm also diabetic . Since I'm dealing with disease I'm not working anymore I'm on tons of meds . I feel fateged ever day no matter how much I rest . My had and feet swell up like ball ones in terrebel pain all day long . i don't know ur family situation or ur capabilities . But plz don't give up . You have 2 be strong . I know it might seen like u jest want to let go but plz plz be the strong beautiful person u were ment to be .

September 28, 2014 - 11:20pm

My poor mother was diagnosed yesterday with this awful syndrome. She went to 10 doctors who told her she had Lichen Planus, and finally one took the time to figure out what was going on.
She does not want to live, given her mouth sores, pain and general diminished quality of life.
Her mouth sores are ongoing and painful, has anyone found anything that can help? She goes through a tube of Orabase daily and nips on gin to take the sting out of her sores so she can eat. Not a great solution. Thanks in advance for any and all suggestions as to how we might find relief!

July 12, 2013 - 7:48am
EmpowHER Guest
Anonymous

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 - 11:17pm
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