Hello all,
My name is Brenda and I was just diagnosed with Sjogrens, Lupus and Psoriasis the beginning of April. I have been doing as much research as I can on both. I am so glad to find this site with actual people that discuss their experiences. For so long I thought I was crazy because I knew there was something wrong but all the other tests would come back normal. I have had dry mouth for a while and was tested for diabetes but not this. I was not tested until my joints were so swollen.
I am on methotrexate and prednisone. I think it's starting to help because I don't have the joint pain everyday that I was having. However, I don't sleep and totally exhausted. I am now having indigestion even when I don't eat. I have never had indigestion before and now it's all the time. Also, I have been having bouts of pain under my right ribs. I have had this off and on for almost a year and have been tested for gall bladder problems which come back negative. Could the pain under my ribs and the indigestion be something from all this or problems from another disorder? I have another appt in 2 weeks and will bring this up but wondering in the meantime if anyone else has experienced this.
Thank you for your help and I look forward to learning more from everyone. ;)
Hi BKM0117,
Let me welcome you to the SJS World and family! Please look around the board as there are a lot of topics that you might find interesting and informative by using the search engine located in the upper left side of this page.
I'm sorry that I can't give you an answer as I'm not in the medical field, but I sure can sympathize with what you're going through, especially the lack of sleep. I've been battling that for years, and if it wasn't for the rheumy, I'd still only get a couple or three broken hours of sleep a night.
I'm glad to hear that you have a doctor on top of things, and there are several members here that it took several years and many doctors before they finally got an answer.
Come often, and I hope to chat with you soon.
Take care of yourself -
Patze
Welcome Brenda. There is a lot of information on this forum that can help you. Some of us have put what we are taking in our signature to help others. I am not able to take MTX and Plaq so I use alternative therapies.
1. Don?t Panic ? Stress can make our flairs and AI diseases much worse. Cognitive behavior therapy (CBT) can help with the depression and anxiety related to chronic pain and AI diseases.
2. Breathe ? When we are in pain we tend to hold our breath and that makes the pain worse. I use a simple meditation: Breathe in and think? ?I am?, Breathe out and think? ?calm?, Repeat.
3. Be kind to yourself ? Do not over do. Understand ?Spoon Theory?. Bring an advocate with you to every Doctor, Hospital and therapy appointment.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
4. Find what works for you. Everyone is different and what works for one person may not work for another. Remember you are at war with AI disease and all treatments that do no harm should be considered weapons that you have to use against your AI diseases.
www.chakraforce.com
Brenda:
I am relatively new here too. My rheumy prescribed an old antidepressant (elavil) in a very small dose at night for my sleep and it has worked wonders! As for the rib pain, I get that too. Don't know what it is or what cause it either. We all have mystery pains/lumps/bumps/swellings, so just keep reading and you may run across someone who can give you information to take to your own dr. for treatment. Welcome to the forum!
Brenda,
Welcome aboard. The people here are terrific!! I hope you get some good rest. It makes a difference. Even to this day(11 years after dx) there are times when sleep evades me. I have found at what time I take certain meds sometimes affects this. Hopefully your Dr. will be able to correct the situation.
Catilee 2
Welcome Brenda!
I'm glad you found us, but sad you had to!
That's quite an array of diagnoses to get all at once. You're probably feeling overwhelmed, but is there also a sense of relief to have labels for all the odd symptoms you've got? Did you wait a long time in 'limboland' before getting a diagnosis?
I'd get that pain under your right ribs checked out, even though your gall bladder is clear. Joe's advice for coping with AIs is really useful, and one aspect of 'find what works for you' is 'discover that symptoms come and go'. I had the pain you're describing for two periods of about 5-6 months. It was really acute and then disappeared, only to return a few months later. I had scans and blood tests, but nothing definite emerged. Soon after I developed gastroparesis (sort of a freezing up of the digestive system) and that too ebbs and flows. Have you kept a symptom diary to see if there are any connections between pain and what you eat, when you eat etc? Or if other symptoms like joint pain increase when the abdominal pain is worse?
Are you on Plaquenil as well as Methotrexate and Prednisone? It's helpful for SjS and Lupus, and takes a few weeks to adjust to but most people here find it really effective. You need to protect your stomach by taking it with food, especially yogurt. It's best to take a few weeks to adjust to it by increasing the dose very gradually. You'll find lots of useful information here.
Thinking of you - Chickpea
Welcome to the group!!! :D
For the indigestion, can you take probiotics (acidolpolus pills) or eat yogurt?
I ask because I 've been having tummy problems the last few months and my dr said it was from the durn maintenance antibiotics they had me on. It was "killing off my good tummy germs" and causing me the stomach problems. Just something you might want to look into that might help.
Welcome...I am also new here and found it to very helpful...I too have severn rib pain...it really hurts to breath...my lungs are clear...I have not really been told why they hurt...if anyone has possible answer please help...is this common?
Hi Brenda. Nice to meet you. I don't have the pain under my ribs so I don't know what could be going on with you.
Hope you find an answer soon.
Hi Brenda,
Sorry you are having to join us here, but welcome! I think you will find that GI problems are common with Sjs and Lupus. Many people here relate to that feeling crazy because the tests come back normal. I had horrible chest pain for years that never showed up anything on any test, never really had indigestion but knew it was related to the esophagus somehow. From what I have read, and experienced for years, is that reflux can irritate nerves in the throat and feel like crushing pain in my ribcage. It is definitely something to bring up with your doc, although it may generate a referral to a gastroenterologist. I manage my pain with stress reduction, diet and zantac, in that order. The first two are important and might be the cure for most people, but I have to take the zantac daily. I thought I had tried stomach meds in the past, but it wasn't until things started to show on test results that I felt I was being heard, at least a little bit. Plus I was only taking meds AFTER the pain started, kind of like closing the barn door after the animals escaped. So many of these syndrome problems require maintenance.
Sleep is the same, if you haven't already I would do a search on sleep here at this site, there is lots of recommendations and we each have to experiment to find what works best for us.
Good luck!
Knees
Hello everyone,
Sorry I am just getting back to you all. I wanted to say thank you for all your warm welcomes and sharing your experience with me. It is horrible that everyone has these terrible things but I am glad there are people that understand. My family is great but as you know you don't really understand unless you are going through it. I will go through more of the posts here to see what others have used or done to get through. It seems that almost every day there is some new pain or weird thing going on. The other day my nose kept bleeding and I haven't had a nose bleed in like 20 years. Now my feet are hurting that some days I can hardly walk. My dr put me out for about 2 months now and I have an appointment to see him in a week. I don't think I can go back to work yet so it will be interesting to see if he will put me out a little bit longer. I have always been a workaholic and been at my job for almost 13 yrs. I feel like if I ask for more time off I will seem like someone trying to get out of work. It is sad that you have to worry about such a thing but I can't help it since I am someone that loved to work.
Anyway, thank you all for your kind words and encouragement and for listening to me babble on. I hope that I can pay it forward by helping someone that is new with my experience.
Peace and blessings to all,
Brenda
Since you mentioned nose bleeds ---- do you have a dry nose or dry sinuses?
I do sinus flushes twice daily with distilled water and sea salt recommended by my immunologist and it really cut down on my sinus dryness. Plus I don't get the severity and # of sinus infections like I used to.
Yeah, it's funny how we hear so often about the dry eyes and mouth but not so much about the nose. I was having nose bleeds almost weekly before I realized it was related to the sjogrens, I use a neti pot but it doesn't carry me through the day. Now I use a saline nasal spray as well and use it many times a day. Nose bleeds are now rare.
Brenda,
Welcome to the forum! :D
As you will read here from previous posts - with some people, the symptoms happen all of a sudden, out of the blue. With others, it is a gradual thing and we don't really notice it until years later and we start putting all the pieces of the puzzle together.
I've had the rib pain too. I had my gallbladder removed in 1996 - years before I was dx'd with Sjogren's (but, believe I had it back then, just didn't know it). I also have chest wall pain that comes and goes and have read that others here on the forum have this too.
Having Sjogren's - it causes inflammation - which can cause us pain in areas all over our bodies. Chickpea has a good suggestion for you - to keep a symptom diary or log of what pain you are having, when it started, if anything helps with the pain (medicine, rest, food, etc.), how long the pain lasts, etc. Many times a person thinks they will remember all this - but, I know I sure don't remember if it's been a couple hours, a couple days or a couple weeks.
I hope your doctor appointment in a week will bring you some answers. Good Luck.
Bucky