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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/26/2008 1:41 PM (GMT -7)   
Hi sheshe, welcome to the forum,
I started a new topic for you to post your question,etc.  We try to keep existing threads to their original subject matter, and to address the person who started the topic.  So this one is for you!  You can start a new topic by clicking the link at the top left side of the page.
 
Have you had any nerve conduction tests done to see where the pain is originating from?  Have you had an MRI of your neck or arm?  It's probably a good idea to see if there is anything wrong with those areas first.  Then if they come back normal, you can continue to investigate other possibilities. 
 
Blessings,
Ginny
 
 
Here is sheshe's first posting......
 
hi, i am sheshe i just joined and am not yet very good with a computer so please be patient with me my story is in 2004 i was told a biospy of a spot on my forehead was lupus my blood test have all been normal, even though i have had alot of pain and tiredness. im not sure what is wrong with me i have good days and bad days i have realy gotten upset with going to my doc. it seems like one visit im told i have corpultunnel the next time he thinks its a nerve in my neck causing my pain in my arms i have really gotten confused     sheshe 
 
 
 
 
                                                      
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

33 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, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/26/2008 3:55 PM (GMT -7)   
Welcome to the forum sheshe!!

Sorry you are having such a hard time. It really IS hard when you don't know exactly what's wrong.

Ginny gave you some good advice and you can certainly hang out here and gather as much info as possible. I'm guessing that the biopsy on your forehead showed Discoid Lupus. I'm so sorry about that . . have you had a lot of problems with lesions on your face and head?? Body?? That is so hard to deal with.

You can click on the links at the end of my signature for more information. And feel free to ask any additional questions as you they come up.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 1/26/2008 8:11 PM (GMT -7)   

Hi Sheshe,

    Welcome to the forum. Sometimes it takes awhile for the labwork to show anything even though you feel bad. I hope you find the answers soon and get on a good treatment plan to help you feel better. Please keep us updated and take care.

                                                            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.


lifesworth living
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/27/2008 4:28 PM (GMT -7)   
hi, ginny thanks for your help im just learning how to use a computer.yes, i had a nerve study done 2 yrs. ago. it showed some mild inflamanation.the nueroligist didnt feel like it was corpultunnel, he felt like it was muscle and joint pain. but he gave me a clinical dignois of c.tunnel. which is why i get confused. my rumy treats me for mild c tunnel . the pain comes and goes and most of the time i deal with it with antinflamitoy meds and by the time i decide to go to the doc. its getting better. sheshe

lifesworth living
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/27/2008 4:38 PM (GMT -7)   
hi, babs thank you for responding, i only have one spot on my face and most of the time it doesnt bother me. some times it swells up and itches. but it is fairly small. my scalp does get sore at times but so far no problems there. i do worry about what i may look like someday, but for the most part i just live everyday like its not there. sheshe

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/27/2008 7:28 PM (GMT -7)   
Sheshe,

Make sure you shield yourself from the sun. The sun will cause flares, especially to the skin. Just in case you didn't know.

I wear sunscreen, a long sleeved man's shirt (so it covers my hands) AND I use an umbrella. Some of us are WAY sensitive. I cover myself even in the car. Since I've been on plaquenil for a few of years, I am dramatically better and was able to have a much more normal summer last year, but I'm still very careful . . . I just don't need another flare.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lifesworth living
Regular Member


Date Joined Jan 2008
Total Posts : 28
   Posted 1/27/2008 8:32 PM (GMT -7)   
hi,alwaysrosie thanks for the advice. itry not to get much sun, its hard i always have loved to be outside. i have been told not to get sunburn and to use sunsreen. i use to spend alot of time in the sun sometimes i think maybe that is what started this thing with me.sometimes my family just cant understand, i have 2 children they are grown now . both are getting married this year. ihave trouble keeping up with all the things i need to do to help them get married. yet i want to be a part of all of it.my son gets married in may and my daughter in september. my husband doesnt like to even hear the word lupus, sometimes i think its all in my head and theres nothing wrong with me. i dont understand how the pain i feel comes and goes.i guess i have alot to learn . my family has been my life ,i keep thinking one morning i will wake up and feel the way i once did. but i am determined to have a full life, i have been blessed and am very thankful for the joys in my life,my family. sheshe

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/29/2008 6:54 AM (GMT -7)   
Check out the "Spoon Theory" on www.butyoudontlooksick.com

That may belp your hubby understand.

Blessings!

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