lupus flare question

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domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 7/27/2008 12:03 AM (GMT -7)   
i have a question on lupus flares.  i am in limbo right now but i know that whatever this is i have comes in flares, i used to call them episodes.  the last one i had was the worst ever.  i went through bad pain throughout my joints that lasted 12 hrs straight then after i was left with things i had nevr experienced before.  twitching, my fingers would jump on thier own, non painful muscle spasms, memory problems, poor concentration, loss of grip, loss of balance, week knees, i even had this thing where my throat felt tight.  i had those things last for almost 2 mths.  now most have gone but i fear they will come back.  i still have some twitching, a vibration feeling in my legs at times, the tightness in my throat comes and goes and i've also noticed when it does i my voice gets a little hoarse, i still get week knees, and have issues with balance but its not as bad as those 2 mths were.  can lupus flares do this to you?  i was tested for ms and the neuro said my mri cae back negative so now we're looking at other things. 
 
can it effect you neurologically, your muscles, and all that? 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/27/2008 10:12 AM (GMT -7)   
Oh Absolutely.  Lupus can affect the body in any way it pleases.  The symptoms you described are very much what we all deal with from time to time.  Lupus can definitely affect you neurologically and your muscles, tendons, ligaments, anything it wants to attack, it can.  That's one of the reasons why this disease can be a bear to manage and keep under control.
 
When was your last visit to your rheumy?  Sounds like you need to touch base with them. Never let symptoms like this go untreated.  When you notice or feel a change, get to your rheumy right away. The faster you can catch a flare up, the healthier you'll be.
 
Which medications are you on?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 7/27/2008 9:53 PM (GMT -7)   
i haven't seen a rhumy yet.  i have an appt in sept.  i have been to a nuro though.  he checked for ms and said the mri was negative for lesions.  then they brought this up.  thanks for the info.

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/28/2008 9:14 AM (GMT -7)   
Do you have a good primary doctor you can see since you don't see your rheumy until the fall? I agree with ginny that you don't want to let some of this go for too long without seeing someone.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/28/2008 10:36 AM (GMT -7)   
 I agree with Ginny and Hippi that you need to be seen before Sept. with the symptoms your having. I hope you can see someone soon and get some relief. Let us know what you find out and take care. You will be in my thoughts and prayers.
                                                             Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


domanique
Regular Member


Date Joined May 2008
Total Posts : 156
   Posted 7/28/2008 8:29 PM (GMT -7)   

i am in the midst of trying to find a new pcp.  i started going to one when we moved here andi gave her my whole history which also included the fact that when i went through a very painful divorce about 6 yrs ago i was put on welbutrin for depression.  i guess i shouldn't have given her that info cuz when she sent the referral to my nuro it stated that i'd had depression before. 

he acted like i was lying about everything and in his report he states he believes i have depression, the only depression i have is caused by the fact i can't get any help or dx.  its so frustrating.  so, i quit seeing my nuro and my pcp due to this.

i want to go to a dr and not be automaticaly labeled depressed cuz of a past situation, or look at me and say its my weight.  i've been heavy for my whole life. 

anyway thanks for the advice.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/28/2008 8:43 PM (GMT -7)   
Oh, you have one of those docs too eh..... I think every single one of us has been told we're crazy or that we're making things up.  No kidding.  Nothing makes me more angry than hearing that.  I'm glad you're looking for another doctor.  You don't need that crap. 
 
I just hope you can find someone soon.  Keep pluggin' along.  It'll work itself out!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 7/29/2008 3:11 PM (GMT -7)   

Hi,

I've experienced a lot of what you've described.. perhaps not the to the degree that you've experienced but as the other poster said.. Lupus pretty much affects you in all different ways.

I understand about the long wait for the doctor too. Isn't it terrible that one has to wait so long to see a specialist? I would keep calling to see if they can get you in sooner. They told me on my first visit that it would be 8 weeks or so but then when I described what was going on, the doc took me the following week.

Hope you get some answers soon.


Diagnosed with Lupus in January 2008.
Currently taking Hydroxychloroquine (Plaquinel), Lisinopril and Hydrochlorothiazide.
 
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