My 28 yr old daughter was diagnosed with lupus and given medication. She has a flare up every other week and the pain is mostly in her chest area. She was sent to the hospital several times from the ER and was admitted for tests but all was negative as to heart disease etc. I was wondering if anyone out there with Lupus have the same chest pains as my daughter has and what she can do to releif the pain . She does not have any other lupus pains in her body, only her chest area.
My 28 yr old daughter was diagnosed with lupus and given medication. She has a flare up every other week and the pain is mostly in her chest area. She was sent to the hospital several times from the ER and was admitted for tests but all was negative as to heart disease etc. I was wondering if anyone out there with Lupus have the same chest pains as my daughter has and what she can do to releif the pain . She does not have any other lupus pains in her body, only her chest area.
Hello,
Sorry I lost my place, I have had lupus sle for 3 years, and alot of pains, I just switched to a new rhumy doc, and was with him for a few mins, he said I have fibromyalgia also, I have had chest pain that has taken me to the ER, the pain was caused from costochondritis look it up, it might help you out. It makes you feel like a heart attack. I never heard of it untill I got it.
I'm not a doc, but it will be something to help you.
Good luck,
Robin
I can only reply to your post as a patient with SLE, and not in a medical capacity.
It does indeed sound like it "might" be costochondritis. It would have to be diagnosed by a doctor. To help in the meantime, if you go to the top of this page and type in "costochondritis" in the "search" section, you will come across lots and lots of information on it. It has been discussed a lot on this forum.
I personally have had it for years and have a rather drastic treatment for it. My treatment is the only thing that works for me, but there seem to be a lot of different options when treating it.
As I said only a doctor can you a definiate diagnosis, but having a name of what it "might" be will give you the chance to research it and go armed with the information when visitng him/her.
Take care.
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
I am mid-30s and have been dx with SLE for a few years. I infrequently get chest pains but I also get leg and feet swelling at the same time, and hand swelling, Raynauds (cold/blue hands and feet) and Livedo Reticularis - webbed looking blue vein patterns over large areas of my skin. I've gone to the ER as well and they just send me home with Tylenol 4's (yeah, they do exist!). I've never heard of the other costochondritis dx before - I'll have to look it up too. But I do know that the swelling of extremities is an indicator of cardio and/or pulmonary problems, so see if that is the case with your daughter.
In the meantime, to ease my own mind, I bought a blood pressure monitor from the local drugstore - one that also senses irregular rhythms. You might want to get one for your daughter so that she can check her own blood pressure from home to make sure she's not hypertensive; she can also then see if her heart is beating irregularly. For me at least it eases my fears to be able to check for myself. You're a good mom!
I am mid-30s and have been dx with SLE for a few years. I infrequently get chest pains but I also get leg and feet swelling at the same time, and hand swelling, Raynauds (cold/blue hands and feet) and Livedo Reticularis - webbed looking blue vein patterns over large areas of my skin. I've gone to the ER as well and they just send me home with Tylenol 4's (yeah, they do exist!). I've never heard of the other costochondritis dx before - I'll have to look it up too. But I do know that the swelling of extremities is an indicator of cardio and/or pulmonary problems, so see if that is the case with your daughter.
In the meantime, to ease my own mind, I bought a blood pressure monitor from the local drugstore - one that also senses irregular rhythms. You might want to get one for your daughter so that she can check her own blood pressure from home to make sure she's not hypertensive; she can also then see if her heart is beating irregularly. For me at least it eases my fears to be able to check for myself. You're a good mom!
JJ
Thanks guys for giving me your input. I did give her the information on Costochondritis . She will also switch to a new rhemy doctor this week. Hopefully she/he will help her manage her pain better.
I will also check on any swelling, I do remember she did have swelling of her big toe at one point but she says it did not hurt. She also had minor swelling on her fingers. I thought that would be arthritis..since there is arthritis in our family.
So tylenol works for you?? Anyone out there that uses other pain meds that work for them or anything else ?? My daughter was given morphine this past week in the ER and it helped her she said but I sure hate to think that she needs that all the time or steroids to control the pain. All those strong meds are not good for anyone.
I can really relate to your daughter. I too am 28. I am not diagnosed with Lupus, but there is a chance I have it. My pain started out in my chest. It is pretty much like chostochondritis. My rheumatologists seems to think it may be pleurisy, but several regular doctors think is is chosto. Regardless of what is it, I take methylprenisalone (spell). It is a medrol dose pack (spell). It is a steroid, only you don't get the side affects because you only take them for a few days. After I take them for a few days it eases the extremely severe pain in my chest and I don't have to worry about being on prednisone for a long extended time. I hope this helps. I take mobic which is an anti inflammatory every day. I take the steroid dose pack when it gets severe. I do not take pain pills. I hope your daughter gets better. That chest pain hurts to breath, it hurts to move, and it hurts to sit there. No one understands!
Aspen26 - I totally understand how you feel. I haven't been diagnosed with Lupus either but have had a positive ANA and SSA. Chest pain is by far my worse symptom and it's hard for me to get people to understand why I'm so paranoid about it. I've had this for about 3 years now. I've had all heart tests (exept cath), pulmonary tests, chest CT and everything is always normal. Yet I can't get the heart thing out of my head. A couple of Dr's told me I have Fibromyalgia but who knows. Mine hurts same as you - when I move, breathe, do nothing....
Do you ever push on your chest under your collar bone and feel the pain and try to find a trigger point area? One time I received a steroid shot in my chest, but the medrol dose pack helps better than anything and it's only temporary. The pain also goes from side to side and is usually not on both side at the same time. What lets me know it's not my heart is because it's been on my right side and my left side before. It's been on my right side before without having any pain on my left side. If it weren't for that I would have been scared it were my heart. This inflammation thing affects people in different areas though. Isn't it weird, I bet we could list some random symptoms and we would all have some of the same ones. Just a few: Irritable bowel (sometimes), chest pain, migraines, fatigue, hypothryoidism, allegry to sulfa. Most of my problems started back in 2002, but I haven't really been the same since I got mono back in 1999 or 2000. Before I got mono I was never really even sick or felt bad.
Good morning, Laura. I just did a search & realized how long it's been since you first reported being positive for ANA & anti-Ro.
I was Ro-positive, but no doctor in my suburban area "got" that I had what some call "Ro-lupus". I recently went to a new GP---and she virtually screamed at me that people with lupus HAVE TO be positive for anti-DNA or anti-Sm.
This is just not so! In his lupus hardcover, Dr. Wallace lists SIXTEEN antibodies & complement problems seen in lupus. That should make it pretty clear that anti-DNA & anti-Sm are NOT the only two possible. Yes, these are the only two autoantibodies considered "diagnostic". But these are NOT the ONLY two.
Are you on medication? Did your rheumie ever decide what you have? Have you ever browsed Dr. Wallace's book, or looked up "Ro-lupus"? Sincerely, Vee
Hi VeeJ - I know my Rhuemy ran tests for several of the other antibodies, Rhuematoid Factor, complements, sed rate, crp, etc. All came back normal - my sed rate has never been elevated nor has my crp. I know that doesn't mean I couldn't have Lupus but it makes the diagnosis harder since I also don't have enough of the clinical symptoms at this time. I have a lot of muscle pain throughout my body - that's my worst symptom. I also feel very fatigued all the time. I could have the Ro-Lupus but I don't have any skin manifestations either. I'm not sensitive to the sun at all. At this point the Rhuemy has diagnosed me with UCTD. I am hoping that maybe I will be able to keep this from developing into a full blown disease but if it does Rhuemy thinks Lupus will be the most likely. I feel like I'm in diagnostic limbo right now. I was offered Plaquenil but haven't taken it yet.
Two other Dr's had diagnosed me with Fibromyalgia. I was diagnosed as having a Vitamin D deficiency which is almost back at a normal level now. I am also anemic but this is improving as well with supplementation.
It's so much harder to deal with all of this when Dr's really aren't sure what it going on. I did get Dr. Wallace's book from the library and have started reading it.
Hi, Laura. I *think* the majority of those with Ro-lupus eventually have rashes but that some may not ever. (But I'm NOT a professional, obviously.)
I had anemia, vitamin deficiency, fatigue, muscle pain, joint pain, headaches, urinary & irritable bowel problems, rashes, hair loss, weight loss, sciatica, ETC. These ARE all "clinical symptoms" of lupus, by the way---as the teaching hospital rheumie I went to see stated, and right off the bat. (But he called for more tests, of course, before making the Dx.)
Why did you turn down Plaquenil if you are still hurting? Not that you have to explain yourself in any way! Anyway, best wishes, from Vee
Honestly, I think I may be in a bit of denial. I guess the fear of having an illness and being on medication daily just freaks me out. I am starting to think I am going to have no other choice as there is no point in being miserable if I don't have to. I also seem to always be sensitive to medications so I am nervous about having side effects. I go back to the Rhuemy on 7/24. At this point I just want to get back to somewhat of a normal life and get some relief. I know things may never be the same again but there has got to be a way to feel better. I used to go to the gym 5 days a week and sometimes would work out for 2 hours and now I get fatigued grocery shopping - it's just depressing and hard to accept. Enough of my whining now...lol.
Hi, Laura. I understand how you feel about starting medication. It means that the problem is "real", doesn't it? I adjusted very quickly & had no side effects, except for a little nausea & some "halo" effect when driving at night. Both dissipated quickly. Actually, you may become pretty much "yourself" again! Plaquenil has helped me more than I'd ever have believed possible!
As they say in the movies, "Courage!" (That's with the French pronunciation. ) Thinking of you, Vee
Thanks VeeJ. I know Plaquenil takes a while to kick in but if I decide to try it I will keep you posted on how I do. Like I said, I would just like to get back to somewhat of a normal existence. My mind is so active and I crave physical activity but it's like my body just doesn't cooperate....lol. That's the worst thing about this disease for me - not feeling good enough to be active.
I was sent to hospital last fall with chest pain so bad I was SURE I was having a heart attack. I will often get this (couple times/month). I am going through the diagnosis process now, and so far things are looking like SLE.
I was sent to hospital last fall with chest pain so bad I was SURE I was having a heart attack. I will often get this (couple times/month). I am going through the diagnosis process now, and so far things are looking like SLE.
Hope this helps.
Cheryl
After reading this post I had to respond. I have been getting this chest pain off and on for the last 10-12 years. It started in the middle of the night and would wake me up out of a dead sleep. It starts in the center of my chest and feels as if someone is squeezing the life out of me or sitting on my chest. Gradually it radiates to encompass my entire chest almost from the shoulders down to my bra line. It will last anywhere from 3-20 minutes, then disappears and I may not have another spell for another week, month, or year. There is never any warning and when it is all over, i feel just fine and continue on with whatever I was doing before it started. Does this sound like Costrochondritis that everyone is talking about or something different? I also have had all the heart testing done and nothing shows up....everything is normal. Thanks for all your input.
Felt I had to respond to your question. This is only my personal opinion of your post, not a medical opionion.
The thing is when we have lupus or are being tested for it, there is a tendecency both by the patient and the medical world to put most thing down to this. Be very careful and go deeper into it. Make sure what is going on. I have had SLE for well over 30 years and have found this out by going through some really bad times because I took the word of the doctor that it was 'probably' lupus connected. I now do my own thing if I am not happy with the diagnosis, look further into it and take it from there.
I have had costochondritis for a number of years and it doesn't come and go in the way you describe in this way, not with me anyway. As you said it comes in the middle of the night, I am taking it you mean when you are laid down. I honestly think it sounds like a gastric problem, a hiaitus hernia, inflammation of the gullet or even a small ulcer. You don't always get reflux with this type of thing, so it may be worth your while looking into this.
I have had heart attacks and heart surgery and my symptoms weren't anything ike this. Just trying to put your mind at rest with this one.
Check your OTC medications, sometimes we can go to the pharmacy and buy things and they can cause us to have problems like this, as they can interact with our doctor prescribed medications.
Take care,
goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 07-26-2007 at 07:17 AM.
Thanks Goldenwings. You are so helpful having had Lupus for so long. I do feel like I am having a heart attack when this chest pain comes on me. I read the MS boards and feel like I am having a MS hug as the squeezing sensation or like someone is sitting on my chest sounds very similar, but I think in retrospect it could sound like so many things if I were to read about different things. I do know that it isn't my heart after going through chemical stress test, regular stress tests, ekg, ect. I also know that whatever it is it isn't life threatening as I have had it come and go for many years so i have learned to live with it. I am due for a check up with my Gastro. doc so will mention it to him.
Re: Chest pain from Lupus?? 
Re: Chest pain from Lupus?? 
) Thinking of you, Vee
