Understanding my flares

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Mkayla
Regular Member


Date Joined Sep 2009
Total Posts : 25
   Posted 11/8/2010 6:39 AM (GMT -6)   

 Hello everyone,

  I’ve been in a pretty bad flare the last 5 weeks. It all started with Migraines and a persistent UTI that would not go away. I suffer from migraines but after a few days and my regular meds that usually help didn’t I went to my family doc. She said I was in a flare my face was so swollen that for whatever reason it was giving me migraines so she gave me antibiotics and prednisone pack. The prednisone made my migraine go away and most of the swelling but my bones and joints still hurt. So then I had a flare like no other. I’ve only had 3 good days in the last 3 weeks. My joints hurt both knees, ankles elbows and shoulders and now my hips. No real swelling that I can see other then my face.  I have bone pain not just around the joints but everywhere it radiates and I feel a bit shaky inside. I have the butterfly rash almost always but mostly it’s just a rosy complexion over my cheeks and nose. Doesn’t hurt or look like a rash… The sun doesn’t affect it but it does get redder when I flare in the morning and evenings. I’ve developed these bumps all over my face feels like a baby’s rash when u touch a hive before it swells up a million ill bumps. There not red or raised much they don’t itch or anything there just there making my skin look and feel unhealthy. Does anyone know if that sounds right or is it just my skin changing.

   Today I woke up at 2 am feeling uncomfortable in my body , got hot then cold  then I got up to get a drink and oooooh the pain in my bones just kicked in to hi gear I was crying and feeling nauseous because the pain was so strong . My skin hurts to touch even to have my clothes on it hurts. I’m going to see if I can get a doc apt because my flare isn’t getting any better.  I’ve been down a lot just can’t take pain like I used to before I had lupus. I think it’s the constant pain that’s wearing me down. I sleep a lot when I can because it doesn’t hurt when I can sleep. I’m so tired of taking strong pain meds they make me feel weird sometimes but sometimes I can’t function without them.  I’ve just met with a local lupus support group. I got a lot of ideas to help with the pain and fatigue meds to try if my doc will give them to me and just to have people to talk to helps. I pray something helps soon…

  So there’s my rant I’m sure it sounds scatter brained and not well written but that’s how my brain works or doesn’t these days t I just had to get it out. I’m going to go try a hot shower see if that helps. Thanks for listening and sorry for scatter brain part.

 


Mkayla
 
 Ive had Lupus for almost a year... Thease are what bother me most.. Joint pain in knees and ankles , Swelling hands and knees, other unexplained joint pain, muscle and bone pain, pins and needles in my legs, brain fog, cant focus always distracted, insomina,and fatigue...
 
Plaqunil, baby asprin, Motrin 800, Trazadone, Loratab for pain, Fish oil, and Vitamin D

pugpuppy
Regular Member


Date Joined Nov 2010
Total Posts : 68
   Posted 11/8/2010 6:28 PM (GMT -6)   
I am so sorry you are feeling so bad, I have had some issues as well but not that bad this time round. I think the weather has to do with it, depending on where you live. I live in Or. and had to have my meds upped because the weather got cooler and it started to rain.

Hope you get to feeling better soon.
waves of hugs
pugpuppy

Canoody
New Member


Date Joined Nov 2010
Total Posts : 2
   Posted 11/9/2010 8:46 AM (GMT -6)   
I have just recently gotten over a bad flare which left nerve damage in my legs and feet.  Walking is no fun.  I refuse to take narcs for the pain and have been getting by with Neurontin and Curamin.  Curamin is an amazing herbal complex that really works.  It make me comfortable with the pain.  It's not like the feeling you get from narcs, but I want to be awake and not drugged.  I am a twelve year diagnosed BiPolar 1.  I have spent a lot of time getting back to normal and that is why I am staying away from narcs.  I am 59 and was diagnosed with Lupus at age 28.  I had many many years of remission.
 

Lupus, BiPolar 1, OCD, Seroquel, Luvox, Neurontin, Klonopin and Curamin.

Post Edited (Canoody) : 11/9/2010 7:59:11 AM (GMT-7)


caring
Regular Member


Date Joined May 2007
Total Posts : 26
   Posted 11/9/2010 4:16 PM (GMT -6)   
Mkayla - Sorry you are so sick, and maybe you've seen a doctor by now...hope so ! It sounds to me as though maybe the Pred. pack was not enough and it may take higher doses for a longer period of time to get you through this flare -- if that is, indeed, the problem. When I had my worst flare when first diagnosed with Lupus, I needed a Pred. i.v. and then oral Pred. for six mos. It did the trick, for sure. Am NOT at all suggesting what would or could work for you -- only what I experienced (had severe arthritis in all joints at the time and headaches). I was diagnosed with Central Nervous System Lupus and that was years ago. My first flare was the worst one I've ever had. Changes in the weather (and of course the sun) certainly affect most people with lupus, but your flare sounds serious and I hope you can get some relief soon, if you haven't already.

caring
Regular Member


Date Joined May 2007
Total Posts : 26
   Posted 11/9/2010 4:19 PM (GMT -6)   
Just realized I replied to an older post -- written in 2009 - I should've paid more attention when I posted my previous reply. Hopefully, you are feeling much better now.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 11/9/2010 6:55 PM (GMT -6)   
Hi Mkayla,

So sorry you are in a flare, I pray you come out of it soon. For me each one of my "big flares" have been different. With the first one being a constant headache that I could not get rid of. Finally the only thing that worked was a round of pred which was not part of my daily meds at that time. The others have been different and hard for me to recognize at first. If you find you seem to be in a constant flare your disease may not be under control, may need to talk to your rheumy about adjusting some meds, that's what I'm in the process of doing right now.

Please feel free to vent anytime, that's what we're here for! Take care

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/10/2010 6:28 PM (GMT -6)   
Hey Mkayla! I would deffinatly talk to your doctor about medicine adjustment as jhmom suggested! Also talk to them about trying a low dose of prednisone for a few months to help you get by until your flare passes! I am sorry you are in so much pain and hope you are able to find relief soon!!!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

Mkayla
Regular Member


Date Joined Sep 2009
Total Posts : 25
   Posted 11/11/2010 12:55 PM (GMT -6)   
Thank you everyone for your responces. I have been to the doc and they have given me some voltaren gel for the joint pain, and cymbalta for the migranes and depression.. I also have a 30 day script for prednisone but im not sure if I should take it. I cant get into to see my rhumy till the end of the month so I am in pain but at the same time I dont want my specalist to get upset for other docs treating my lupus pain. He is weird like that and im in a small town so dont have any other specalist to see.... Idk what to do see if I can last till the end of the month...

Im hopeful for tomorrow,
Mkayla
 
 Ive had Lupus for almost a year... Thease are what bother me most.. Joint pain in knees and ankles , Swelling hands and knees, other unexplained joint pain, muscle and bone pain, pins and needles in my legs, brain fog, cant focus always distracted, insomina,and fatigue...
 
Plaqunil, baby asprin, Motrin 800, Trazadone, Loratab for pain, Fish oil, and Vitamin D

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 11/11/2010 11:30 PM (GMT -6)   
I would definately take the prednisone. It can be a lifesaver with flares. Your rhumy may use that for you also. But if it's not his choice he can manage that when you see him. I don't know what I would do without it right now. Hope you feel better soon.
SLE, Discoid lupus, acute cutaneous, acute vasculitis and sjogrens

Prednisone, ultram, mobic, cellcept, plaquinel and ambien.

zolgher
New Member


Date Joined Nov 2010
Total Posts : 11
   Posted 11/12/2010 5:59 PM (GMT -6)   
mad Hi Mkayla,
                   sorry to hear things aren't going so well for you. Unfortunately I'm experiencing similar to you at the moment. I'm waiting to start on a trial with Cellcept, heard some good reports about it. Was wondering if anyone can tell me the difference between SLE and curtaneous Lupus I've been told I have both but can't understand the difference. I also have Sjogrens so was wandering if anyone has found something that can help with replacing the tears and saliva as i'm really suffering at the moment.I'm very interested in the different medications you have as I'm in Australia and my doctors don't seems to be helping at the moment would appreciate any help, Keep well
                                                                                                                 zolgher
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