I spent much of yesterday in the ER after having a low-grade fever and generalized abdominal pain for two days. I hesitated to go because I knew the pain was not intense and I could not put my finger on exactly where it hurt. . . sometimes on my side by my hips. . . sometimes in my back by my kidneys. . .sometimes on my abdomen by my gallbladder. . . but I felt like every one of my abdominal organs was inflamed, achy and sending out "twinges" from time to time. After finding traces of blood in my urine they did a CT scan without contrast looking for kidney stones (found none) but did find gallstones - none of which were blocking a bile duct and would/should be causing my discomfort - and sent me home. They only ran a CBC and metabolic panel - not even a sed rate because the doctor said he "wouldn't know what to do with the information he got". And even though I informed him that I had antiphospholipid antibodies (which makes me prone to forming blood clots) he didn't even run the simple blood test which would detect clots breaking down in my bloodstream.
I went home still in pain more-than-a-little skeptical.
After another uncomfortable night (but no fever) I started wondering about my peritoneum (the membrane which lines the abdominal cavity and covers the abdominal organs.) Low and behold I found a diagram of referred abdominal pain which showed every area which had been hurting or producing twinges - including an area on the right shoulder. Turns out I had been alternating the heating pad between my shoulder, back and hips for the last two days but assumed the shoulder pain was just one of my many joint pains and didn't mention it to the doctors because I thought that if I added it to my list of symptoms, they would think I was crazy!
I could kick myself for not being more assertive and not giving a more-complete list of my symptoms, but this is a whole new world for me and I worry about sounding like a hypochondriac.
So my question is this: Has anyone had or heard of generalized pain like this? Could my peritoneum be inflamed similar to what happens when you get pleurisy in your lungs or pericarditis around your heart?
I know I have to wait until tomorrow to follow up with my rheumatologist, but just thought some of you may be able to shed some light on what I'm experiencing.
So sorry you are going through such a rough time of it.
I'm not a medical professional, but went through 20 years of gall bladder hell, and let me tell you, it can really wreck your body, including causing shoulder pain. Please don't underestimate the discovery of those gall stones, best to get to a digestive disorders Doctor, they will sort this out in a hurry.
SK,
Thanks so much for your quick response. Perhaps I am under-estimating the finding of gall stones but I know I had a previous attack that was much more painful and more localized than what I’ve been experiencing. But maybe each episode is different in intensity.
Perhaps as a “newbie” Sjögren’s sufferer I have the tendency to attribute every ailment to the “new” me and I shouldn’t.
In any event, you’re right about getting to a digestive disorders doctor. The “old” me would have put it off until it magically disappeared, but now I know better.
I agree with SK on this. Get to a GI doc so they can narrow it down. Last month I was very ill with pancreatitis and had upper abdominal pain that sometimes sent shooting pain to my shoulder. Fortunately it was not caused by gallstones which I hear are horrid.
A competent GI will take a history and order appropriate tests. Mine acknowledges that one system affects the other. For me it was the kidney disease, Sjogren’s and pancreatitis. Before you go to your appt write a list of your symptoms related to your abdomen then give the md a list of your meds and other conditions. Can’t tell you how pleased my GI doc was when I walked in with all my info outlined. It gave her more time to focus on me.
Good luck with the doctors appt and let us know the outcome.
Hello SK. I read your comment earlier and cried. I understand your frustration. I am sorry. In my experience your symptoms are familiar.I have learned to steer the hell away from protein. Some how my body attacks my in jested protein throughout my whole system causing a raging response of inflammation! also an overload of fruitroce causes severe bloating. My current guess is because my SS antibodies go on the defense and then get carried away & get visciously offensive. Just a theory, but for me it is integral to my management of my symptoms. I can be pain free until I indulge. And I know that what I have ,& you have, may not be even close. And what works for me, may not benefit you, but for me I am manage to be less handicapped and my ability to be pain free and mobile increases under my humble plan. HUGS!
Went to my primary care office today (because the gastro doc couldn't see me until my scheduled appointment at the end of the month) and she diagnosed diverticulitis. Started me on two antibiotics and a special diet. This diagnosis makes more sense to me because I knew the pain was not as intense as a true gallbladder attack - even though I know that I'll have to deal with the gallstones in the near future. Keeping fingers crossed that this is the answer.
Good news is that my regular pcp was not in today so I saw a new female doctor in the practice who I absolutely loved, was knowledgeable about sjogren's, and made me feel very comfortable.
Just goes to show there's a silver lining in everything!
I had my GB removed about a decade ago. It hit me at work, when I was with a customer, and I headed to the ladies room. Next thing I knew, several other members of staff were in there and my husband was on the way. The customer grabbed one of my co-workers, said I just turned white, she thought I was having a heart attack!
The ER admitted me, and finally got around to a Hida scan, discovered my GB was totally dead. I had surgery within 48 hours, as they feared gangrene. My GI Doc said he would have had it done sooner, but he wanted a specific surgeon. It was a long rough surgery, my liver was adhered to my dead GB! I'm okay now, and take digestive enzymes to help break down my foods. I do watch the meat, I eat less of it, and go lean.
You are so right! Looks like this ordeal was the way to finding 'your Doctor'! Sounds like she'll keep a close eye on you! This is really good news! Hope those antibiotics do the trick for you! I'm glad your worries were eased, it's about time!
I had 2.5 years of right-sided abdominal pain - it was getting so severe that I was having to take morphine... They scanned and didn't find gallstones. I had all the GI scans as well, and found nothing... In the end I found a surgeon willing to do the gall bladder removal (it was not really warranted, but I was DESPERATE). Sweet relief - that pain has been gone for a year now. I still have some very low grade pain in the kidney region, but that intense stuff higher up... gone.
Likewise, I would not dismiss the importance of those gallstones! The gallbladder pain can refer to the right shoulder - it sounds like that issue should not be dismissed.
Hi there! I have been rather snowed under with some volunteer work I took on (which is sure making it hard to find a new day job LOL). I have also been training to become a yoga teacher, because I wanted to be able to help chronically ill folk find a practice that they could actually do, rather than what they teach in most yoga studios. Unfortunately the training is conventional (aka not designed for gimpy ill people) and takes a hell of a lot out of me, so until it's done I am going to probably spend more time resting than being vertical! :) The neat thing is after that, I will be able to modify modify modify and hopefully teach a practice that we ill folk can do. One of my teaching classes was a chair yoga class and I loved it, so I hope to do more of that in future!
I do read a lot here as I can though, and would love to be more engaged as soon as I get more of that elusive time! I do hope all are doing as well as they can, and my thoughts are with you all. This Sjogren's is sure an underrated disease - for something that is supposed to be benign, we sure suffer a lot!
I know it Jane! My GP keeps telling me that Sjogren's is being underestimated! I believe him, but also don't know where the arthritis leaves off and the Sjogren's begins, but I guess that is after the joint damage xrays that it takes over...
Yoga in a chair sounds more doable to me. I have several supposed Yoga and stretching CDs, (designed for either the old or sick) and the first thing they do is want to put me on the floor, when I have so much trouble getting up off the floor!
Hi SK. I have had joint pain in my fingers and toes for at least 10 years, but the bone scans show nothing, so I guess where Sjogren's ends and something like RA begins is all a blur!
I too have those CDs (I am also very overweight, so I have CDs for larger people too) and was pretty discouraged when I had difficulty doing those practices too. One of the difficult things about starting out as a teacher I think is forgetting how hard it is to be a beginner (lots of pain, sweat and tears), so I hope to never forget that (even though I'm not fit yet by any means). The chair practice makes it very accessible for that reason (being hard to get up and down from the floor), and you'd be amazed how much you can do in a chair. Hopefully I will soon be one of the relatively few who specialize in yoga for chronically ill people... lots more training to do yet.
Blackbird, I love that you are working towards that. Yoga really is amazing. It helps me immensely- when I can do it. Some days even that is too much so having a geared won version would be wonderful. Its sure not redly available.
In response to you and SK…I just had ultra sounds done on a bunch of body parts, lol….the good news for me too was that the joints so no sign of RA, the fluid between the joints are good, etc, BUT I have had horrible pain in my fingers and wrists for many years. I believe that is the difference between RA & SS. The pain is the same, the cause is what you have to get to the bottom of.
Hi there, EnjoyLife (what a good user name!) Thank you. There is some yoga out there geared to specific physical and invisible illnesses. I've found quite a bit for Rheumatoid Arthritis and Depression/Anxiety. I think a lot of the work is being done by teachers within their own communities so there's perhaps not as much out there for autoimmune disease. I've just been doing a practicum for a yoga therapist at our studio and so it was very cool to be able to explain to her about Sjogren's and similarities/differences with RA and Lupus, especially the non-swelling arthritis-like pain. I am really looking forward to developing more credentials and teaching this, including some free videos through my website, although that might take a while to do. Like you, I find the benefits are amazing, but there are good days and bad days and sometimes the practice is awesome and other times it's too much. I really look forward to developing a range of practices, just starting with breathing and finding as many practices as I can do in a chair. I am finding lots of good stuff already on YouTube. I don't know if it's okay to link to it, but I could share the links I'm collecting there and on Pinterest for chair yoga. You may see things you could do on those difficult days.
It's so frustrating isn't it having symptoms that can't be seen. Recently I convinced myself (having endured a couple of constant years of abdominal pain from 7 to 9) that maybe I was being a baby about constant joint pain from 3-5. I now realize that you can't diminish or dismiss the psychological effect of constant, even if only mild to moderate pain. It shades everything you do. Now the abdominal pain is "mostly" dealt with, I still find the finger joint pain very difficult - even typing this I just have to accept pain as the cost of getting things done.
Like you, I will be thrilled when there is a much better understanding of the underlying causes of things. That's why it's so important for us to keep raising the profile of Sjogren's on the good days.