Newly diagnosed, still trying to figure all this out

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imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/9/2013 7:52 AM (GMT -6)   
I was recently diagnosed with Lupus.  I'm struggling with finding a balance in my life that will not make me feel horrible.  I  had one flare in April that I chalked up as the flu, however I have not felt 100% since the first day I got sick.  If I go on a trip or do much physical activity I end up feeling terrible with severe joint pain, however at times, the feeling of exhaustion and pain may only last for a week then I wake up feeling better. This is what happened yesterday.  I woke up feeling amazing, went for a run, worked all day, then swam and today I was barely able to get out of bed and go to work.  My body is aching all over, my ankles and feet are swollen and painful and my hands, wrists and shoulders are now starting too.  Since I am so new to this, is this considered a flare?  I'm able to physically get out bed, however it took a couple hours to get my body to work with me.  I'm feeling muscle weakness and exhaustion everywhere and just want to lay down and sleep but know I have to keep pushing through it.  I'm not on any meds yet since I can't get in to see my rheumy for another month.
 
Any insight you can provide is welcome.  I'm a mentally strong person, however the feeling of helplessness, loss of control over my body and pain has been more than challenging.  I really enjoy running and doing triathlons so accepting this and finding a balance that works is beyond challenging.

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 7/9/2013 9:33 AM (GMT -6)   
A tip: When you feel good (and strong) do only about 1/3 of what you think you can. That way your energy may stretch over several days. Otherwise we do too much (and too much is tricky to define when we first become ill) and are exhausted for about 3x as long as when we did the same thing with normal health.

As a former marathoner I had a really hard time with this, so I know exactly where you are at. It's hard to learn, but imperative, take it slowly esp. until you get things under control.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/9/2013 10:30 AM (GMT -6)   
Thank you so much, that's a great tip and I will start doing just that. I have been doing the opposite, I feel good and end up pushing too hard trying to get myself physically where
I used to be.

Are you currently able to run and do marathons? One of my biggest fears is that I will no longer be able to do the physical things that I so love. I was recently notified that i got into a marathon in October of this year, and I'm really starting to worry that I won't be able
To do it since running 6 miles takes everything I have anymore. Any tips or advice would be greatly appreciated.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/9/2013 10:51 AM (GMT -6)   
Do you have the photsensitivity? about 60% of us have to deal with it. The sunlight will drain my energy quicker than anything and cause me more pain.
If you do have photosensitivity you need to get you some protective clothing and strong sunscreen. You'll have to watch your vitamin D levels too. If the D levels are low it can cause more joint pains.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

MostlyBode
New Member


Date Joined Jun 2013
Total Posts : 3
   Posted 7/9/2013 11:16 AM (GMT -6)   
I am a triathlete competing at a high level with lupus. It is challenging to be sure but it is possible. One thing I have that has really helped is a GP who supports my triathlon habit. Without his help I couldn't do it. Before my "A" race this season I had a flare and he gave me a steroid injection. I ended up having a great race and placing in my age group at the toughest race of the year. I've had other doctors tell me I would never do another triathlon so the attitude of doctors about this really varies. But triathlon is what keeps me going and my GP understands that.

I actually have a blog about racing with lupus: triathlonwithlupus.wordpress.com

Everyone is welcome so check it out if you are interested. I write a lot about how I manage to train through the pain and fatigue of lupus. I haven't updated the blog in a long time but this is a good reminder to do it so thank you for that. I have so much to write about since half the season is over already.

I noticed you wrote you aren't on any medications yet. You will probably be put on Plaquenil. That medication takes a while to work but when it does it should help with the weakness and fatigue you are feeling. As an athlete the weakness is what bothers me the most about this disease so I totally empathize with what you wrote. Once you begin treatment and learn to dose your training properly to avoid crashes things will improve!

I'm actually about to go on a bike ride so I'll stop before I write a novel. I hope you feel better !

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/9/2013 11:44 AM (GMT -6)   
No, I'm not running any marathons! My lupus has affected my muscles and joints, and I don't have the endurance or ability to recover that I used to have. Plus I had several years with major cognitive issues and running was totally out of the picture during that time.

Last year I was able to do a 10K in a not-so-bad time, but it took a lot of training and was quite difficult. I expect a good portion of that is the Lupus/Med-related weight gain (40 lbs) and age (42 vs 54). This spring my hips kept me from training - bursitis/tendonitis, definitely from Lupus - a cortisone shot, 6 wks of total rest & PT, and now I can walk about 10 minutes before fatigue kicks in. Hoping for a 10K in Nov...

For me, if I do too much I can count on being out of it for 2-3 days, if not longer, so I am cautious. I would rather have a slow/short run & be okay than a fast run with a week of inactively to follow.

Everyone is different. I imagine that if I were better with my diet, and could get my sleep more regular, then I could do more -- I think Lupus is most difficult for us who were most active.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/10/2013 8:07 AM (GMT -6)   
I'm not sure if I have photosensitivity since I haven't been to a rheumatologist yet, however when I am in the sun for a few hours my hands, wrists and ankles swell up and start hurting and my energy level is zapped. Are those some of the symptoms of it?

Last week I had severe pain in my hands and wrists, so much so that I couldn't sleep and if I did manage to fall asleep I would dream about how much my hands/wrists hurt. I was still able to get out of bed and function, however I couldn't hold anything, not even a pen so I was very thankful it was a holiday weekend and I wasn't at work. I was tired but not exhausted and extremely weak. Over the weekend I felt a little better, which only lasted a few days then I went back to having ankle/knee pain and muscle fatigue and pain. Is this considered a flare? Sorry for the questions, but being so new to it I'm still trying to figure everything out. I'm not on any meds yet and luckily I have a very understanding boss, however there are days I make myself come to work just to sit at my desk and cry because my body hurts so bad. Is this normal and again, considered a flare or just part of having lupus? From what I've read it sounds like flares last weeks/months which is what my first one was because I was in bed for two weeks barely able to move, however since then I've had the pain, fatigue, muscle weakness and pain but am usually able to make myself get out of bed and function.

Lynnwood - I'm so sorry that you are no longer able to run in marathons, that is one of my biggest fears with this disease, no longer being able to do what I love which I know is very tasking on my mental and emotional state.

MostlyBode - thank you SO much for your post. Your encouraging words have given me faith that I will still be able to do the things that I love. I have started reading your blog, it is very inspiring. Please continue to update it, it gives me hope.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/10/2013 9:21 AM (GMT -6)   
"Flares" are subjective, there is not list of symptoms or anything that clearly states "this is a flare". For me, I don't count a few days here and there, but if something changes for the worse, and stays changed long enough that I seek a doctor's appt (rheumy) or a medication change, I'd call that a flare. Others call a bad day a flare. Eventually you will come to know what constitutes a flare for you, we are all different.

Photo sensitivity doesn't have a measurable definition, either. But if you are reacting to sun or fluorescent light exposure as you state, you are photosensitive. Best idea is to stay out of the sun, esp. during peak hours, use good sunscreen or sunscreen clothing, also some of us it's the heat that we're sensitive to.

Take care of yourself and try to take it easy till you see your rheumy. Maybe you can call and ask to be put on the cancellation list in hopes of being seen sooner?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/10/2013 9:33 AM (GMT -6)   
I actually called this morning and was lucky enough that there was a cancellation for next Friday so thankfully I will be seen sooner. Thank you for all of your insight and advice, it is extremely helpful. I'm coming in to this not knowing anything about the disease and feeling quite helpless at times. It's nice to be able to "talk" to others who have been and are experiencing the same thing.

I'm still trying to remain confident that I will be able to train for and run a marathon in October as well as three triathlons this summer. I just hope my body holds up to what my mind is thinking/wanting.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/10/2013 3:38 PM (GMT -6)   
Your sun reaction sounds just like mine, but I also turn very red and feel burnt.
The best test to see if you are photosensitive is to go sit in the sun unprotective for about an hour. If you feel worse then your probably need to avoid all sources of UV rays (sunlight, fluorescent lighting, CF bulbs, and halogen bulbs).
A halogen light bulb will make me ill within 2 minutes.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/10/2013 4:32 PM (GMT -6)   
I typically feel worse after I have been at work, not sure if it is the stress or the lighting but my whole office/building has fluorescent lighting.

Another question I have - do any of you have trouble breathing? I've been getting shortness of breath, increased heart rate and tightness in my chest/throat at times, mainly when I lay down to go to sleep. Could this be related to lupus? If so, when do you know when to go to the doctor? I've had a couple instances where I was nervous about going to sleep because of how hard my heart was pounding but thought it was just stress related and mainly due to anxiety rather than the disease. It typically happens on days when my joints have swollen and I have increased pain.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/10/2013 9:23 PM (GMT -6)   
You might want to discuss this with your doctor.
I have breathing issues but mine is asthma related.

Even if it's anxiety related lupus can affect your emotions too. I have to take a mild anxiety drug to help me.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/10/2013 11:25 PM (GMT -6)   
I would recommend you discuss this with your Doctor. It may be anxiety related or may not be. Lupus patients can have issues with pleurisy and pericarditis. Both of these conditions can cause shortness of breath and chest pain. You could also have acid reflux, that can cause some of the type of symptoms you are describing.

I suffer from this stuff chronically. I can't tell you how many times I've had pericarditis. With both pleurisy and pericarditis the lining of the lung or the pericardium become inflamed and rub whenever you take a deep breath. Laying flat is very difficult to do, when I have it I sleep on 4 or 5 pillows. If it's bad enough I'm in the hospital I sleep with my hospital bed in a sitting position. Normally to treat it you need a treatment of steroids. One of the signs I know I have one or the other is when I'm having chest pain and SOB if I'm sitting and lean forward it makes me feel better.

That's a sign I've got inflammation in the area and leaning forward takes the pressure off my chest wall. So when you see your Doctor mention it to them. The Doctors can normally also hear a rub when you have one of these conditions.

I also have a fast heart rate and I'm on medication for that. I also have pulmonary hypertension which causes me shortness of breath too. It sure can be complicated to figure out whats what when I have pain, SOB and such stuff. If I can answer anymore questions, please feel free to ask away. If I don't have an answer someone most likely will.

If your SOB gets worse or your chest pain gets bad or goes into your left shoulder and arm, seek the ER ASAP.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

raqame
New Member


Date Joined Jul 2013
Total Posts : 7
   Posted 7/11/2013 2:33 PM (GMT -6)   
Since you've been recently diagnosed its best to not push yourself too much. Sometimes I feel fine and energized and on top of the world but I end up feeling like crap in a matter of hours. I've learned to take it easy instead of exhausting myself.
And the tightness in your chest? I've felt the same exact thing. Not really in the daytime but only when I would try to go to bed. I was on a low dose of prednisone for a while and then I had a kidney scare so I was put on 1000mg of pred for 3 days. It was after that when I started feeling it. Once I tapered down to my regular low dose I didn't feel it anymore, so it could be due to the prednisone. I would check to your doctor just to be sure though :)

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/11/2013 2:45 PM (GMT -6)   
I've been having a tightness in my chest and difficulty breathing for 24 hours now and it seems to be getting worse. It's more painful when I take deep breaths in. I'm not on any meds yet and don't see a rheumy until next week. I'm starting to get pain and weakness in my shoulders. I'm wondering if I could be having an anxiety attack or if it could be something more serious. I don't want to go to the dr if its something that'll likely pass. I know it sounds crazy but I'm starting to feel like a hypochondriac! I never used to go to the doctor and now it seems every time I turn around its something else.

From your experience, should I get this checked out? I've read on pleurisy and seem to have some of the symptoms but am not 100% sure. I also have a tightness in my throat/upper chest area when breathing.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/11/2013 3:57 PM (GMT -6)   
With Lupus you spend a lot of time in the doctor's office. It's best to be safe than sorry.
I have a lupus friend who will wake up in the morning with sniffles and be in the hospital by evening with something major.

You're not a hypochondriac, your body is at war with itself. Things change quickly. I'd get it checked out to be safe.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/11/2013 5:24 PM (GMT -6)   
I would say that if you've had the pain for 24 hours and don't seem to be getting better, then yes, I would go to the ER or an urgent care center.

As Joy said with lupus depending how sick your are with it, you spend a lot of time in the Doctors office. I'm very sick with my lupus plus I have RA, Fibro, and just found out leukemia that is common with RA and auto immune disease. Just this week alone I've had 4 Doctor Appts and did pulmonary rehab 2 times this week.

I hope that you can be seen quickly and they can figure out what's going on. Please let us know what the Doctor has to say.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Cateracts, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

EricLupus
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/12/2013 2:55 PM (GMT -6)   
Listen.. I know it is hard. It nearly killed me and it hurts me every day, But know this..

You will be fine.
Listen to your doctors, you will need a team of them now..
Stay positive
Keep moving
Don't skip a dose
Try to wean off pain meds..

If your pain is ever so severe that your in tears, goto ER. I do all the time and I do not care what anyone thinks about it. Your pain is YOUR PAIN, not anyone else's to interpret.


E

raqame
New Member


Date Joined Jul 2013
Total Posts : 7
   Posted 7/12/2013 11:44 PM (GMT -6)   
I would get it checked out. I would feel tightness in my chest and throat but it wasn't painful just kinda scary. And I definitely wouldn't have it for 24 hrs I would only feel it when trying to fall asleep.
Don't be afraid to go to the doctor. I never had health problems either so I would never go but now having lupus the doctor is like my second home. Its just something that I had to get used to.

And since you said you've been recently diagnosed I wouldn't hesitate to go. That's when you're still learning about your lupus and how to control it. So its best to have a doctors input

imarunner78
New Member


Date Joined Jul 2013
Total Posts : 12
   Posted 7/15/2013 11:09 AM (GMT -6)   
Thank you all so much, your insight, experience and advice is greatly appreciated. I will keep you posted!
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