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[cat]

I was diagnosed with sjs about 15 yrs ago and I have only just found this forum. I also have interstitial cystitis, fibromyalgia, type 2 diabetes (inherited), and serious disc disease in neck and spine. I have spent the past 5 months pretty much in bed due to the persistent agonizing pain and the overwhelming fatigue. Every time I try to get going I am thrust back into bed. Recently I had a hydrodistension of my bladder to try and cut the 15 min 24/7 trips to the bathroom and reduce the pain there. It has given me quite a bit of relieve for now. My gastro problems are awful and every so often I go through all of the scopes and other tests and other than chronic and acute inflammation of the stomach and twice h pylori nothing is wrong. So why am I unable to eat ???haha. My gasto guy doesn't think it is related to sjs but my rheumy does. So I cancelled my next appointment with the gastro guy. Am now searching for a new one. I have a very supportive GP, family and friends for which I am grateful. Saying that though, they do not really know what I am living with and so I was glad to find others out there who are experiencing what I am. I have every symptom on the sjs society's list except a problem with dentures (yet). Still have my teeth because of excellent dental care. My symptoms are severe and right now I am feeling very down about it all. My rheumy recently told me sjs patients are at a high risk of getting lymphoma but I am at an extreme risk because my mother died of non hodgkin's lymphoma. I think that is what has put me down the most at this time. The thought of probably having to deal with anything else is just to much. At least he is checking me every 6 months now for cancer. I would just like to hear from someone else who has the same things to deal with in their daily life and I hope also I can share something good with others as time goes by. 

[Linda196]

Hello, Cat, welcome to Sjogren's World.

You've certainly been dealt a rotten hand, but you do have a good GP on your side, and that helps a lot! I think a new GI sounds like a good idea...you don't go into detail about your eating problems, but chronic inflammation is quite enough to cause any GERD /heartburn/nausea problems, and if its a matter of non-digestion of food, chronic constipation or diarrhea, these could be put down to alterations in the peristalsis (movement) of the stomach and bowel wall which can be caused by neuropathy of the stomach/intestines, which could be an effect of SjS.

Do you take any DMARDS or immunosuppressants for your SjS? Plaquenil has been very helpful for many people for pain control, and newer drugs for neuralgia like Lyrica, have been helpful for a number of people with fibro.

Get to know us by reading earlier posts, and you may find some very helpful hints here. For sure you've found friendly understanding people willing to share their experience, strategies and (hopefully) successes with SjS.

[Scottietottie]

Hi Cat 

Welcome to Sjogren's world. Wow - sounds as though you're contending with a lot. I had to stop taking any kind of NSAIDs because of stomach inflammation and I also take Omeprazole every day now. Some people find that certain foods can add to irriation too. Did you urologist tell you to stop eating citrus fruits and tomatoes and not to drink orange juice, grapefruit juice, tomato juice, tea or coffee to try to slow down urinary frequency?  I tried it and decided I'd rather go more often than deny myself all of those things!!

I think your rheumy was laying on the lymphoma bit a bit heavy handedly. Checking for it regularly is great but although sjoggies run a higher risk of getting it than the population at large it is still a tiny percentage who actually do get it. Most of us are far more likely to have an auto accident than to develop lymphoma but we don't sit wondering whether its going to happen or not. Obviously it must be a worry with what happened to your Mom, but its not inevitable and its good you're being closely monitored.

I'm glad you found the site and I hope you find it useful.

Take care - Scottie 

[cat]

thanks for the encouragement.

I am on omeprazole and domperidone for my stomach and have been for years. I follow a low acid bland diet for both the gerd and the IC problems. I have to use a lot of meal replacements as I have severe vise grip like pain in my stomach, along with what feels like a huge lump in my esophagus along with constant nausea. Also have been diagnosed with IBS which I know is just a term for we don't know the cause.

Recently was put on Cymbalta which has been approved for fibromyalgia. Am hoping it will help. I tried lyrica this past year with no improvement. Had to stop it because of side effects, re: dizziness, sweating and headaches. Same with neurontin. Tried Plaquenil many years ago and am thinking of trying it again. I take 5 oxycocets a day for pain. Does nothing I don't know why I'm taking it. But that is one of the things I hope to learn here. Is what works or doesn't work for others. I know we are all different so it's a lot of trial and error.

I am slowly reading past comments.

[JannaLee]

Kitty Cat,

I have nausea and digestion problems too, however not to the extent you do.  My experience of Plaquenil has been beneficial.  Nausea has been greatly reduced and I gained back about 15 pounds.

It can be tough to adjust to in the beginning, but I consider it a good idea for you.

Welcome from me too!

Janna

[Dolly Dimples]

  Just wanted to welcome you  too Cat..
                Sounds as tho youv'e got rather a lot on your plate, so it's not surprising you cannot eat..
       










                  Try not to think that you will get every symptom that can go with SS,




  Like Scottie said , some things may never occur, such as your remark of possible Denture trouble. many people here have severe symptoms of bone and joint

pain with other issues and  illnesses,  but  may never be affected with as much dryness, such as myself who has  a lot milder pain and complaints than others, but suffer really bad dryness.. It really is a case of swings & roundabouts..

           Keep at the older threads ,and you will soon realize what we mean...
                                                                                                                  Cheers Dolly x
                         

[Chickpea]

Hi Cat

Welcome to SjS World!  As Dolly says, some people here have severe dryness symptoms, some have few but have other issues, and some have the whole range of what SjS can offer.  I'm really sorry to hear about the digestive problems you have.  They sound quite overwhelming and, coupled with the exhaustion and pain, obviously dominate your life.  I don't have severe dryness issues or digestive problems but I do have central nervous system involvement and, like you, my life has been turned upside-down by SjS.

It sounds as though Plaquenil might be worth another try for you.  You probably found that it took a few months to show much effect, which is what most of us here experience.  But when it does start working it can help with exhaustion, brain fog and dryness.  I wonder why your doctors haven't suggested using immunosuppressants/chemo?  I've been on Plaquenil and Prednisolone for 8 months, and CellCept (an immunosuppressant) for 7 months.  This hasn't worked as well as my neuro/rheumy had hoped so they're starting me on Cytoxan soon.  If you'd like to know more about the options available there are a few of us here who could help with questions on Imuran, Rituxan, Methotrexate, CellCept and Cytoxan.  (I think that's about it!)

Finding the right combination of pain meds is my long term project.  At the moment I'm trying a combination of anti-inflammatories (slow release Voltarol) with morphine, paracetamol, aspirin and very low dose nortriptyline for neuropathic pain.  I also use a TENS machine, and lots of warm baths, aromatherapy massage when I can get it etc.  I'm still in constant pain and rest at home most of the time, but I'm able to have some sort of life despite mobility and speech problems. 

How do you spend your days?  It's wonderful that you have supportive family and friends but are you alone a lot?  Are you able to read or listen to the radio? These message boards and the chatroom can become quite addictive; for me SjS World has been the best thing I've found since my diagnosis.  As you say, it's a place to share worries and also the good times that will come eventually.  Let's be optimistic!

Thinking of you - Chickpea

[eyeamdry]

Hi Cat-
Welcome to Sjogrens World.  I just want to make a comment about your fear of lymphoma.  I think Scottie is right about your doc being a little overboard about it.  As a side note, I was diagnosed with breast cancer just six months after the diagnosis of Sjogrens!  I had both for some time and the discovery timing was just chance.  So, I never worry about lymphoma, just the breast cancer coming back.  I have so many other things to keep track of though, it's not foremost on my worries. 

You will find just loads of good info in this forum.  I hope you think so too.  Lucy