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I am 41 and was diagnosed with lupus about seven years ago Sept. of 2001 and once they got my meds straight, I have done pretty well. I also have fibro, Sjogren's and Raynouds. Most of my past probs have been related to joint and muscle pain. This has thrown me for a loop..

I have been beyond tired for a few months and had a sleep study done that showed nothing much. One of my docs ran my iron level and when it came back low about a week and a half ago, I was relieved that it was something so simple. I had a 6mo appointment set up with my rheumetologist and they always run the labs immediately prior to my appointment and amazingly they have them done by the time I see the doc. (I don't even wait long to see him.) Anyway, he looked at my labs and said that he thought the low iron levels aren't really the cause of my fatigue. I didn't quite know what he was talking about, but he said that it has something to do with the red blood cells when your autoimmune activity goes way up. He then immediately asked me if I'd been having any shortness off breath and I told him that I'd been writing in off as being really out of shape. I didn't want to tell him that I'd quit doing the warm water PT at the hospital. He pinned me down and asked how bad it was and I had to admit that I'd gotten winded just walking to my appointment which wasn't very far at all. I get short of breath walking the length of the hall at my school as well, but haven't felt wheezy or anything so didn't think it was asthma probs etc. Well, he seems to think that my lupus activity is way up and I'm having cardiopulminary involvement. Just this week, I started having weird spells where I feel like I'm going to pass out if I stand long. Right after that happened today, I looked down and my fingers had a bluish tint... The nails weren't any more blue than the tops of my fingers... It was strange. The other rather new thing is that several of my fingers sort of pop or catch when I bend them. The left hand little finger is the worst and I am not sure if there is anything I can do about it. He didn't say much about that since he seemed concerned about getting the heart and lung tests set up ASAP. At first I was more surprised and almost happy to know that I am not just a totally lazy out of shape slug.

Amy
 

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Amy, Has your doctor mentioned hemolytic anemia?
Before I was diagnosed, I was very fatigued, short of breath, and felt very out of shape after walking 20 feet. Part of my main diagnosis with lupus was hemolytic anemia.....distruction of red blood cells. Shortness of breath and fatigue is partly because of lack of red blood cells circulating oxygen through out your body. I did have some yellowing of my eyes and skin, and my urine was orange, but my red blood cells were very low at that time. For 2 years prior to my lupus diagnosis I was being treated for the hemolytic anemia, but the doctor(a hemotologist) never mentioned lupus....at all. He said it was idiopathic(unexplained)Prednisone was my treatment. 40mg daily. Any time I lowered the pred., my rbc dropped. Then I had my spleen taken out, which is another alternative.
Since my initial hospitalization when I was diagnosed in 2005 I have not had any problems with it. I did have Rituxan treatments, which is known for treating severe hemolytic anemia.
I hope this helps.
Kim
 

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Amy,
If you are a teacher you are in no way out of shape, keeping up with kids is a workout in it's self. I do know what you are talking about we often push things to the most easiest and hope we are right rather than think it might be the lupus sneaking up on us. I am glad to hear your doctor is looking more closely at the problem for you and that you sleep study was fine. I do have to admit that I really like my cpap machine as most of the time I get better rest. I hope your up coming tests give you some answers and that you feel better soon. I am 41 also and was thinking that the shortness of breath was my smoking ( which has really never bothered me before or my age ) it seems that I am getting old from what I have been told anyway lol. What do our kids know anyway? Keep us posted as I am very interested to know what they find out.
 

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Amy,

I fought exhaustion amd shortness of breath for years, even prior to my Lupus coming out of remission. At the time I was working as an RN, so I wasn't exactly out of shape. I was a smoker, but I had recently started back up so I guess that is what I contributed it to. Even after being diagnosed with the fact that my Lupus was out of remission, I continued to smoke and my shortness of breath was minimal depending on my activites. I could function fairly easily, it would just take a little longer for to to complete what I was doing. Finally, when my Rheumy asked what my number one complaint was, I said my breathing. With that he had a blood gas test ran and sure enough, my oxygen saturation was low, extremely low. It bought me a hospitalization and home oxygen 365 24/7. Do I feel better, yeah for the most part. I still have trouble every now and then, I just pay attention to how I feel. Looking back now, I remember seeing the signs that even as a nurse, I ignored what my body was telling me. If you are feeling that bad, ask your doc to have some blood gases drawn and see your body is up to. It may be nothing, but it's easy to check and have some reassurance.


Nancy
 

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My rheumetologist did say that I'm not anemic. I'm having a echocardiogram and lung functioning tests on monday so hopefully they will give some answers one way or the other.

Last night I kept feeling like I'd pass out if I stood up (standing still) for more than a minute or so which I know isn't normal. I am afraid they will find something major, but also afraid that they won't fnd anything because I know this isn't right.

A
 

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Good luck with your tests on Monday. I hope you get some concrete answers. Let us know how everything turns out.

Lazylegs
 

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I had a tough night tonight... I was trying to enlist my kids' help in cleaning the absolutely horrific mess they'd made this weekend while I was hidden away in my room. I found myself really losing my cool with them. I guess partly because I felt taken advantage of. They are 15 and 12 and know the house rules and kept blatently breaking them just because I wasn't right there. I am also pretty short-fused tonight because I realized that I feel cornered by all of this. I'm scared to death that they will find something and almost as scared they won't. I feel like I can't keep up with all that is on my plate because I feel plain rotten. Sometimes being a single mom is scary because I know if anything happens to me, they go to their abusive dad. I also know that everything is riding on me so I have to keep my kids protected from all of my fears. My 12yod is very clingy and freaks out if she thinks there is something wrong with me. She drives me nuts with it and so I try to keep going even when it's tough. This weekend, I just caved to feeling rotten and slept as long as I could sleep and then just lay there watching t.v. until I couldn't lie there anymore and got up to face a house of food everywhere and filth beyond belief. Part of me wanted to go back to bed and send them off to their dads because I knew they wouldn't do that there. It made me mad that they would do that at my house just because I wouldn't slap the **** out of them for doing it.

A
 

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I had my pulminary functioning tests and echocardiogram today. The echocardiogram tech wouldn't tell me anything, but the puliminary woman did say that my functioning tests were down around the 70% point. She said she has seen people walk in at about a 30% point and often sees lower than me, but I reminded her that I'm 41 and it sure looked like the others in the waiting room were quite elderly. She did admit that I was right. The thing that I thought was telling was that albuterol was of no change at all. She said that with asthma it typically helps about 25+% and the general population it helps about 8% and there are a few people that it doesn't make a difference. I was one of the "it didn't help" people. I guess we'll have to see what my rheumetolgist thinks is the next step.

Amy
 

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Amy,
What did he say about your red blood cells?:rolleyes:
I hope you will find some relief soon. I know exactly how you feel with teens in the house, I have 19, 15, 12....ALL GIRLS! I do talk to them about my lupus, and they are pretty good about helping out, most of the time. But sometimes, they are out of control!
Kim
 

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O.k. I know I get myself into trouble when I start searching the internet about health stuff, but I feel like the test results may just take too long to come back and that I'm going down hill rather fast. I keep feeling like I'm going to pass out. Tonight I was reading about congestive heart failure and there were a number of things that I've been experiencing that I've written off. One thing is that I've gained about ten pounds recently dispite eating better. I've pretty much quit eating fast food and had been eating on the road too much. Part of it is that I've just been too exhausted to run the kids around all of the time and I was hoping to feel better by eating more fruits and veggies etc. I knew I'd had shortness of breath with very mild exercise, but the whole lying down thing sort of threw me off. I've gotten to the point where I have to lie on my left side propped with a bunch of pillows. The other thing that happened is that my fingers turned blue during one of the times when I felt faint. I also didn't think chest pain related to stomach stuff could be related at all. I do find that if I lean forward my chest pain/stomach pain feels better, but I thought it really had to do with the reflux not "going up".

I did call the rheumetologist late this afternoon and he basically said that if anything comes up before he gets results back, that I should see my gp or go straight to the ER. I thought that was "comforting"... well, not really.

A
 

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I'm sorry you are feeling so yucky. Youre right about looking things up and reading about similar symptoms. I do it too. I didnt mention that I suffer from pericarditis. It can cause shortness of breath, pain on inhaling and chest pain, and some people do get relief by leaning forward.
I hope you get some answers soon and feel better........Do you take prednisone?
Kim
 

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Well, the echo showed some thickening of the lower part of the heart, but she didn't think it should be severe enough to cause all of the problems I'm having. I have to have a stress echo next week to see what my heart looks like after excersize.

I am thinking that it must be more related to inflamation than anything. A few months ago my rheumetologist told me he really only wanted me to take Relafen when I REALLY needed it due to the risks. I've had some on an off high blood pressure so I think that made him a tad more leary. He told me that he'd rather I take Vicodin at night rather than the NSAIDs. I don't like the idea of being hooked so I'm pretty careful about that and have gone more often with untreated pain than in the past. Well, the other morning I was feeling REALLY crummy... pain and major shortness of breath. I had to go to work so there was no way I was going to take Vicodin so I took two 500mg Relafen. I used to take that much at once, but the rheumetologist has been pretty nervous about it so I haven't in a long time. It took about 30 minutes and the pain was down. By the time I got to work, I could breath after walking down the hall! (I have been winded by doing this for months.) I'm trying to be cautious, but I'm taking the Relafen more now. My blood pressure has been fine for months so I don't see a huge risk.

Amy
 

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Amy,
Sounds like you are starting to get a few answers. I too have had the thickening of the lining of my heart. My cardiologist says it is from my recurring pericarditis. Now I take colchicine twice a day for the pericarditis/chest thing. I was having to increase my pred. every time I had chest pain, but now, once in a while I will only have to take 600-800 mg Advil.
Im glad you have found some relief. Doesnt it feel good, when you feel good?:wink2:
Kim
 

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Hi Amy,
I just had a thought as to whether you had had thyroid function test done?

I actually started out being investigated for endocarditis before they picked up my thyroid problem.

I did have terrible breathlessness before it was diagnosed and unbeleivable fatigue. Yes I would get out of breath just walking for the living room to the kitchen!!

It was just and idea and might be worth looking into. :) Hypothyroid or undreactive thyroid can cause chest pains aswell.

Take Care, hope you feel better soon and get to the bottom of things

Good Luck

cassie :)
 

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I'm so frustrated because today I went for my stress echo. I got on the treadmill and my heart rate went up very quickly to the "target number". Right before it hit that number, I started feeling incredibly dizzy. In less than a minute, everything started to look dark and sparkly and then I was so close to passing out and they got me off right away. They couldn't explain why... just that it wasn't heart related. They said when it goes up quickly, it can be conditioning... Yeah, just what I needed them to say, I'm out of shape. The thing is that even I know I'm not THAT out of shape to pass out after walking less than five minutes.

A
 

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Sometimes it can be related to the nervous system, like the vasovagal response is off among other things. Hope you get some answers soon, what a very frustrating position to be in. The thyroid suggestion is a great one too...

Good luck - keep us posted!
 

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Hi Amy,
well I can tell you that I could necer have done a treadmill test when my thyroid went. Yes I used to feel dizzy, like passing out, I could not even hold my arm up in fron of me for more than a few seconds. If I had a shower and had to stand I would feel so weak like I was juat going to fall on the floor.
Thyroid disorders are quite common in people with other autoimmune disorders.

The test for thyroid is a very simple and inexpensive and could easily illiminate it. The other thing that really does become very obvious with underctive thyroid is a severe sensitivity to the cold. Overactive thyroid can also cause breathlessness and severe fatigue.


Good luck

Take Care

Cassie :)
 

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Amy,
You mentioned something about your red blood cells...are they low? That will cause a lot of fatigue, shortness of breath, muscle weakness and when I had really low rbc, I could barely walk 10 feet without feeling like I was going to fall down. Check into your lab work.
Kim
 
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