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View Full Version : Locking up...can't stop thinking about this illness



Larz77
11-20-2008, 08:34 AM
It's funny, I have had this desease for probably 14-19 years. It was misdiagnosed at first as vasculitis and three years ago, it changes to Lupus. I suppose because I was able to acheive a remission two years ago and am in (right now) a self proclaimed flare, I'm suddenly scared. Add to it the fact that I've had these heard palps (skips) and feel awful, I'm struggling right now.

In looking at my website for my area (Minnesota Lupus Society) for a possibly new Rheumatologist and I ran across articles about the disease. Good lord, if I wasn't scared before, I'm scared now. I read articles that indicate that properly treated, a lupie can live a "normal" lifespan. But when I read on the MN website about so of the inevitabilities of the disease, like hardening of the artieries and heart issues, etc., it sure reads differently to me. So, as my anxiety is alreay up (usually an indication of the disease) it's like dumping dry leaves on a fire...zoom! Panic!

I'm sitting here at work feeling very down. Just 6 months ago, I was feeling great. Now, I'm scared about my prospects. Is all of this normal? I had my heart thoroughly checked out 6 months ago and all looked well. Sigh. Any words of comfort? I can't believe I keep reaching out, I feel like a guy out in the middle of the sea treading water....trying to get my head "back in the game"....

KathyW1958
11-20-2008, 09:40 AM
Hi Larry,
I just read your post. I try not to read the sites that describe this illness, because they always put the worst possible scenario in there. The fact is that there are few people that die young from this illness. I mean realistically there are some, but that is not the norm. I do definitely think that you need to go to a different Rheumatologist. I hope that you can see a Rheumatologist that does research into Lupus and really knows what they are doing. Some Rheumatologists specialize in the treatment of Lupus. My doctor does and thank heavens for that. It is not always a given that a person with Lupus will have athlorosclerosis or things like that. Some of the info on the internet is outdated as well. You have to be careful with the internet. There are also fools out there that say that they have a cure and that is pure bull big time. You have to be careful to watch out for those sites too. I do hope that you can see a different Rheumatologist as soon as possible.

Hugs,
Kathy

Larz77
11-20-2008, 11:10 AM
Kathy to my comfort again! After reading your post, I'm curious, what is considered young? I'm 45 and feeling older right now. I agree with you for the most part on web-sites, but this was a Lupus foundation website. You can check it out searching for Lupus Minnesota! I guess that is what ultimately threw me.

I also like the studies that say life expetancy of 15 years is good. Great, I'm beyond that...now what does that mean? Does the chart look like a drop off area of a lake \ ?

Good news, I may have found a new Reumatologist. It's so funny, I'm switching health plans at the end of this year. When I asked what they accepted, they accept my new insurance, not my old one. No problem, if I set up an appointment with my current Rheumo, I wouldn't see her until January anyway. He had an opening next week! I'm paying out of pocket just to sit down with him and meet. Expensive, but I'm happy to at least talk with him and get his understanding of the illness. I got his name from the Minnesota Lupus web site and the best of all, he's just down the street....Yeah!

Larry

KathyW1958
11-20-2008, 11:48 AM
Hi Larry,
Wow that is fast to get in to be seen. I am serious. I am happy for you and just maybe this man will be more patient friendly and help you.

I read some sites from the Lupus Foundation that say pretty much the same thing, but I don't believe it. Shoot, I have had this illness for over 40 years and if they were right well I should be dead at least 3 times over you think? You know you have had it for several years and it has not done you in, so I don't think you need to worry about those grim statistics. I am wondering if you are possibly RO positive. Did the Rheumatologist test to see if you have the SSA and SSB antibodies. The reason that I ask this is from what my doctor told me that folks that are RO positive have a better outcome in the longevity department. I and RO and LA positive. This is also seen in Sjogrens. It would be interesting if you could find that out. I also want to add that those statistics tend to be more towards the folks that have kidney failure and or embolisms and things serious like that. Try not to dwell on those dreary statistics, because that is all they are. Everyone's Lupus illness is different. You have survived with it this long and so I don't think you have to much to worry about.

I hope that this new Rheumatologist will be better for you. Maybe he will put you back on the Imuran and off of the Prednisone. I sent you a website that clearly states that one of the side affects of Prednisone does affect the heart, ie, palpatations, heart rate etc. You need to let him know that this is happening with you. Please post and let us know how your visit goes and please don't dwell on those dismal statistics hon.

Hugs,
Kathy

SandraC1983
11-20-2008, 04:31 PM
HEY BUDDY JUST CHECKING UP ON YOU HOPING YOU ARE FEELING A LITTLE BETTER TODAY. KEEP YOUR HEAD UP AND STAY STRONG. IF YOU NEED ANYTHING LET ME KNOW OK

sick n tired
11-20-2008, 09:57 PM
Hey Lars,

How are you feeling? I hope better...

So were you just reading about Ms or do you have it? I guess there could be a third possibility and that the doc is testing you for it, too.
If you have a concern about MS then Rob is the man to talk to.

Glad to hear that you can get into see the new rheumy soon...that is how fast it was for me with my present one. He was great...here's hoping yours is both knowlegable and compassionate.

Oluwa
11-20-2008, 10:52 PM
Hi Larry..

Welcoming you with a hug..I am Oluwa.

The waves of feeling elated, when in remission and then overwhelmed when in a flare is normal with anyone who has this disease. One that seems unpredictable, seemingly it dictates our mentally well being, our spirit....ugh, it does.

Going from feeling great to flare mode is like being diagnosed again..reality...

With Lupus it is not a road that isn't traveled. And no matter how many times we walk the road it doesn't seem to get easier..but it does. We learn from each flare.

Some of us are in a continually flare, mild or severe and manage through this maze. You can too.

I fall into the hole, just came out of one last week. I regrouped, I manage to walk around many holes, then I loose my footings...oops there I go..in. Gloom, doom...worry about things that have yet to come, to be...

I would encourage you to read all you can about the disease and never take a back seat. I find knowledge is our weapon, to prevent, to manage the disease. Have you read The Lupus Book by Daniel J. Wallace. A very informative read. He breaks down the good and the ugly of the disease.

If we do not know the possibilities, the potential of the life altering disease how can we be our own advocate in our care then. Having Lupus means being aware of yourself, your surrounding, your eats, following doctors instruction..taking medication. All helps in managing the disease..

I find when I manage the disease, I feel more in control of my destiny. I try to be positive as I believe if I am the opposite, it incites or aggravate the flare. No always successful, time I am negative...and ensure I am receiving proper care. Sometimes we have to nudge the doctors. I hope you and your new doctor will have a great rapport together.

A good doctor is a hard find...

Fear is a normal emotion, use that emotion to be in control and not to instill feeling out of control within.

Addressing your heart palpitations...are you on Prednisone? If not, had you stopped abruptly?

Excess caffeine?

Did you have an ECG and did palpitations occur while on the ECG equipment?

Depression can cause palpitations...anxiety. Unknowingly you maybe increasing them with depression and anxiety. When you feel this way, breathe in deep and exhale slowly through your nose...again...

I have a heart palpitations, a few here and there. Times I worry, times I just worry a second after the flutter, depending on the mood...

This recent flare..have you change anything in your routine? Medicine, food, physical activity, fluorescent lights....life changes?

Bring all your test results to your new doctor..at least be able to give all the names, dates so they can request the records...

Till then, worry not...try to enjoy this coming weekend...

Keep looking for your wellnes..be well.
Hugs,
Oluwa

Larz77
11-21-2008, 11:51 AM
Oluwa, thanks for your reply. In regards to what had changed that brought on these palps, let me say that there was three things. First, I noted in my journal that I first felt them 4 days after I started taking Prednisone. I dosed down once off of them but didn't quite go three weeks and I was put back on a 10mg dose. I now dosed down very slowely and have been off prednisone since last Thursday (over 1 week now). They have been pretty much the same all along, but accelerated recently when I was given this Levaquin. I'm thinking I'll take the last dose of that today, that was nine days of hell...enough.

The other thing that is different is that I started riding my exercise bike and have road it daily (at a good pace, I work up a great sweat). I haven't missed a day since they gave me the "all clear" with my heart in April (April 3rd). Through thick and thin, I road. Never before have i done this, but the palps started and stayed during this time. Isn't that a kicker, best exercise I've ever done and this happens.

Finally, because my pulse got so low riding that bike, it would drop in the 50's, I asked my Cardiologist if I could cut back on my Atenonal from 50 to 25. I did this at some point close to June, but I don't recall the date.

Oddly, the only break from them was when I was on Zithromax for this non-stop cold and the Zithromax made everything feel better. This is my main suspicion that treating the lupus would figure it all out.

You have to read my roller coaster post about my Rheumy.

Larry

Oluwa
11-21-2008, 12:50 PM
Larry,

It could be the Levaquin. Though there site says a few people will experience abnormal heart rhythms..you maybe one of the few. Today is you last day, see what evolves over the weekend...

Do you have these palpitations daily, all day?

If the palpitations started and stayed while biking, have you considered stopping to see if this was aggravating it?

Stop all activity since today was the last day of Levaquin then resume your activity, biking on Monday and see where that takes your symptoms. Rule in, rule out...

This is my main suspicion that treating the lupus would figure it all out.


Does this statement mean, if you treat your Lupus you think the palpitations would stop? If so, there is no one drug that treats Lupus symptoms. We are more susceptible to symptoms, viral infection, bacterial, diseases and etc than most. So, the symptoms should get treated.

Be well..hugs,
Oluwa