Ever since I was so sick and in the hospital in 2013 I have slept sitting up. My husband finally bought me this cool chair/cushion kind of thing so I can at least be in a bed. Like most of you I am in constant pain and work full time, but lately the pain is worse. The pain is best actually when I stand up, which I do mostly at work. However, I get so exhausted and have the joint pain and enjoy sitting down at home.
My pain is in the middle of my chest, but worse on the right and going into my back/neck and is pretty sharp, but also feel pressure. It hurts worse when I breathe deep and worse when I walk through the big parking deck at work (hospital campus) and sadly that is the most exercise I get. And forget lying flat. I feel like I can’t breath and have horrible chest pain. Last time I even tried it made my chest pain worse for over a week.
Now I am not sure what to do. Do I go to my rheum who will either A) Put me on high dose prednisone and assume it is “just” the serositis, or B) Send me to Pulmonologist for pleuritis,etc or C) Send me to Cardiologist for the pericarditits. And of course all this time I am working my 45hours a week in health care where somehow they have gotten around the law that you must have a break/lunch etc. But I digress.
My point is that it is hard to get away from work, but I have to do something. I told my rheumie that if I ever did have a heart attack I was afraid I would not realize it because my check hurts all the time. But now it is worse that usual. Which doc should I go to? I have all the specialists. I will put in a call to my rheumie but it takes days to get a return call.
Sorry for rambling. Thanks for “listening” to me rant about my pain and frustration. Dont want to trouble my family and I know you all understand.
It sounds like pericarditis. If you need to be on prednisone, you NEED to be on prednisone. This is the first rule of how to live with autoimmune diseases: bite the bullet and take the meds that you need to take to control the inflammation so you can function. Yes, you may gain weight. So what? You can lose it again later. Trust me, you can.
I assume you are in the US? If so, you need to sign up for FMLA at work. This will force your employer to allow you to go to doctors appts, legally they will not be able to anything about it. And it will not count against you in any way on your record. Ask your doctor for a note saying that you have to be allowed to have a lunch break. There is no state in the union where an employer can order you to work through lunch unless you are in certain specialized jobs that deal with emergency situations, like a fire fighter, and even then they relieve one another so they can take a break.
Please see your doctor as soon as possible, and ask to be referred to a cardiologist too.
I noticed you mentioned all the specialists - do you have a primary care doc? An internal med or family practice doc? I’ve found that sometimes the specialists can’t see beyond their specialty, where the Internal Med doc will look at the whole picture and determine if a specialist is necessary - and tell you which one. They can be easier to get in to see as well.
I agree with JoAnn about prednisone, if I started having bad pains I’d get right back on prednisone. The relief it gives from the pain outweighs any side effects even if my face does turn into a pumpkin).
Regarding chest pain, that’s nothing to mess around with. Usually, when docs (or their staff ) hear “chest pain” - they’ll send you to the ER. As much as I hate going to the ER, I’m afraid if I was having acute chest pain, that’s where I’d go. At least there they’ll monitor you, do an EKG and labs and X-rays to see what’s going on.
good luck!
I know how you feel. I get really bad chest pains all the time. I would honestly suggest slowly upping the prednisone and also checking to see if there's any fluid in your lungs. The worst pain that I've ever had was when I had a liter of fluid in my lungs. Once that was drained, the prednisone helped a lot. Every now and then the pain does come back and it can be debilitating, but def go to your rheumy and/or pulmonologist. You shouldn't have to suffer so much:/ Bless you and be well!
I am amazed that you are still working! I had costchronditis and it hurt like crazy. I went through the pulminary testing and all the cardio tests, they came out fine. I was glad that it wasn't my heart or lungs. See if sleeping in the chair and extra prednisone helps first. Everyone here has great advice.
Thanks everyone. I started my own taper but I am wondering how long one can have pericarditis before you can have other problems? I have decided to see the cadiologist again. (I had to cancel my last follow up appt with her) I am pretty sure it is the pericarditis. The prednisone has decreased the sharp chest pain at least. Oh and Ann, my husband got me this :Contour Living® BackMax Plus Enhanced Wedge at bed, bath and beyond. My adult daughter said it is the most “unromantic” thing she has ever seen, lol! But I thought it was sweet since it allow me to be in bed but still sit upright. It was a splurge but I have used it now for about 7 months and don’t see it ending any time soon. I prop even more pillows on it and I combine it with my favorite neck pillow, “the total pillow” and I can be at a almost a 90 degree angle, but in a soft and comfy cocoon. And no, I don’t sell any of these. They are just products that have worked for me.
I would urge you to all your rheumatologist and tell the office your situation is urgent. You need to have a Ct scan to rule out a pleural effusion and cardiac tests to rule out pericarditis. Don’t wait . Your MD needs to listen to your heart and lungs . Sandy
Hello, sorry that u r having theSe situation’s , But dealing with Lupus is hard . Never knowing what is going to take place , in our daily lives. I have the standing , sitting, holding thing’s, joint pain’s, and nerve pain (which stick me like pins when my body get’s cold). There is more but for the most part that’s the brief . Again sorry that you’re going through this and my prayers go out and try to stay in good spirits.
I agree with sandy you are in need of more test and I know your jobs important, work and lupus has to be minimize. Your health comes first so your able to do your every day job. If symptoms are getting more difficult something has to be done until you feel better, your doctor do not have your symptoms and if they can’t help you, look into more solutions on your condition, you can try resting more I know it’s difficult and drinking more water, and taking slow breathes when your resting, you will surely be in my prayers. Barbara
I know many people who sleep sitting up. I read all the responses and they are good. Is there a doctor you trust most and you can get in to see? I have a good primary care doctor that I can see fairly fast and I usually start there. Also, the ER is a good place if you think there is a cardiac issue...they take your problem very seriously. I am so sorry you are having so many issues....I have them too but right now not as bad. Take care and come to this site when you need feedback....we understand here... LupanCatwoman
I used to have pains like that before I started sleeping in my recliner. I have severe GERD which has destroyed some of the lower section of my esophagus. Sleeping at an angle has cured most of that. Is this maybe at least a part of your problem? Just a thought....
Thank goodness I don't have the GERD issue often, but I know many of you on this site have a major problem with it. When looking at which doctor to call, I always wonder why many do not list their primary care doctors, who in my opinion, can be your "anchor." I do use Alkamax/PH Balance drops (from the health food store) when I do have GERD. It helps to balance the PH in your body, and you can use urine strips to see what the acidity level is in your body. Hope you get better soon! All the best! LupanCatwoman
Thanks so much everyone. I had an endoscopy done about a year ago and they said I did not have Gerd. I will let you know what the dr says. I really appreciate all the feedback and great ideas!
Ann, how is your back? Mine is killing me at the moment! I think the sinus infection has caused a little flare. I hurt all over! I am taking a stronger antibiotic now. I don't think that I have had one in 3 years (a sinus infection).
It's great that you have a system that works when you need help.
I agree with Ann--if you are having a problem (like a fall or possible pneumonia) that needs immediate care that is where you go. I believe in this system of care as it is quick, involves several doctors and all the medical equipment is there for diagnostic purposes. The last time I was there (ER) was for adrenal failure after trying to get off steroids too fast. I was given steroids via IV, then put on 60 mg a day then after two months 10 mg and after six months I am down to 8 mg a day. Rheumy says the last 5 mg of steriod (i.e. prednisome) are the hardest because your adrenal glands are trying to start working again. When you start to drop below 10 mg they start to crank up their own! BUT it can take a few years to get off them completely. My present game plan is rhemy is hoping Benlysta will eventually take the place of steroids---but we will see! Benlysta infusions are every month. I talk to all the IV infusion nurses to hear what is up with other lupus patients. She asked if my 1 hour 15 minutes drip was slow enough...I said yes. I asked why she asked me that question. She told me several Benlysta patients ask for 3-5 hours for infusion as it makes them feel better to receive it slowly. Hope for the best; prepare for the worst, and roll with the punches. Rhemy and PCP want me to go to the ER when necessary and they have supported every action taken there. I just see the PCP as the "leader of the pack" if possible...This is all my experience and opinion---I am not a medical expert...just a grizzled old LupanGeeze!
When your writing goes "off the track" it is even more powerful and poignant. So old LupanCat says I THOROUGHLY enjoy your perspective whatever track you are on. Wow, what experiences you have had, and how well you tell the stories. Thanks much!