Hello, Im new here just got diagnoses with Lupus wanted to talk

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Mkayla
Regular Member


Date Joined Sep 2009
Total Posts : 25
   Posted 9/24/2009 8:06 PM (GMT -7)   
Hi,
   I just wanted to talk to others who have Lupus and get a idea of what is espected.
Heres my story. about Mid June I started getting strange pains in my ankles and calf. Then really bad stiffness and pain in both knees. I couldnt hardly move. I went to the doc and she did some blood tests and gave me a 10 day dose of pretizone, and Ibprofen it did the trick. After 2 days all pain and stiffness went away. Then the very next day after I had finnished the meds it all came back even worse then before. My sholder, elbow, wrists, fingers, knees, ankles,and toes stated to swell and some days were better them other for pain but with a family to take care of and working I was so frusterated becuse even the easiest of things seemed so hard.
  Finally Yesterday I was diagnosed with Lupus. 4 Blood tests they did came back with high numbers. He said my blood was clotting.. Since the onset of pain I have moved from Colorado to Arizona. It is either the change in weather or im in remission. I have almost no pain and mild fatigue and depression. I have researched Lupus and it seems im ok and it wont get any worse. But on the other hand ive herd Horror stories so I thought I would look for some real anwsers here. Please tell me your stories. How it started. How it is coping. What meds are good/bad. Anything would be helpful...
 Thanks for listening......
 
 

Mkayla


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/24/2009 8:30 PM (GMT -7)   
Hi Mkayla and welcome. I'm sorry to hear about your diagnosis but glad to hear that your symptoms seem under control for right now - I hope they stay that way.

My symptoms started with some very vague symptoms. I felt like I had a flu that I never got over with lots of fatigue and just a weird feeling that something wasn't right. THen the pain started. I had some abnormal labs and was sent to a rheumatologist, but it took 3 years and my third rheumy to get an accurate diagnosis and treatment.

I have taken prednisone and plaquenil for years and for a while I functioned okay but still had plenty of flares. For the last 6-9 months I've been doing worse again so now I've started methotrexate which is a chemo drug but it's used at a very low dose for lupus and RA. I do think it is already starting to help with the pain. One of the bad things about lupus is that a lot of the drugs used to treat it are really harsh meds.

Lupus is pretty unpredictable, but it sounds like your doc caught it early and hopefully your disease won't progress anymore (everyone is different)

Finding this website is one of the best ways I've had to be able to cope with lupus. It's so nice to come here and be among other people who really understand what it is like to live with lupus everyday. I hope you keep posting and I know you'll find plenty of support here. Take care
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 9/25/2009 6:02 AM (GMT -7)   
Dx.sle ra, after birth of 2nd son,1986.Left 1st husband in hurry due to some pretty horrid things.Oldest still in wheelchair,other little and acting out,me ready to jump off cliff.MY experience is sle is a complete rollercoaster ride. I am glad to hear you are doing better,My best advice is learn your body well,your triggers, and know when to slow down and rest.(easier said then done,I know after all this time I still ignore it sometimes,and pay a pretty price.)Read,stay informed about your dx.read the spoon theory,just google it.Try and have a rest period each day, like in kindergarten with your little rug,if possible,Be really honest about what you can do and can't each day,believe me the housework will wait.some days you won't be able to type and can't participate in this forum. It's all okay. Hope this helps. God Bless,Namaste Raven1954.
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, joining this has been a big step.Husband and son wonderful,but can't step inside,you guys are there.


sandys mom
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/26/2009 8:19 PM (GMT -7)   
I remember being really scared when I first found out I had lupus. It was back in the late 80's and I had a new baby. It took years for the doctors to give it a name, my flares are years long and years in between. My worse symtom is joint pain. When I am in a flare I am "fall on my face" tired. I would get up, get the kids to school and come home and back to bed, get up, get the kids home and rest until my husband came home and then go back to bed. I did this for years. I have had several great years, my new Rhem. said that I didnt have lupus. So I played along for a few years now, ignoring the pain and being drop dead tired and sun sensitive, etc. But about 3 months ago I noticed a lump just under my right ear, it was growing. So I went to my GP, he sent me to a ENT, he said it was a tumor and I went for a second opinion. Turns out it is a "reactive lymph node". Dont know what that means, but I am pretty sure it is related to Lupus.
Will learn more from the ENT doctor next week. When he saw me he asked me lots of questions, I never mentioned lupus or wrote anything about it on my paperwork. But when he was examing me and asking questions he asked me if I had any autoimmune disorders.
I thought that was interesting. He thought that several of my "issues" could be related to lupus and suggested I start seeing a rhem. again.
So, the person that told you it is like a roller coaster was right on the money. It can change everyday, learn your body. I have very good luck when I do not consume sugar. It is very bad for my lupus. I eat very healty and exercise at least 3x a week with weights and cardio.
I wish you well, I am new to the group too. we will learn this forum together.

bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 9/26/2009 10:31 PM (GMT -7)   
yeah  hello I am new here.  I have systemic lupus and have for much of my life got a firm dx this month when I went into a severe flare up.   two months on predisone and 9 weeks on antibiotics.  Kidney, liver, heart, lung,involvement plus RA and light sensitive ,muslce spasms and trouble sleeping    lupus will realease awake chemicals at betime for reason known only to lupus (the great imitator)  I also experiencing lupus haze  so I get confused very easily and depression, lonliness and a feeling of isolation.  Grateful for each day and remember I am 72 so it took a long time for things to get this way.  I look forward to to tomorrow and I believe I will go into remission once again.  i think sharing is good as you have hope and that is important to gaining stabillity.  wish all a speedky remission.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/27/2009 6:28 AM (GMT -7)   
Hi Bird lady and welcome to Healing Well.
dx: UCTD (lupus), sjogrens, reynauds,
meds: prednisone, plaquenil, methotrexate, tramadol, neurontin,
doxepin, folic acid   


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/27/2009 8:28 AM (GMT -7)   
Mkayla,

It's good to hear another story of someone whose lupus has gone into remission. My story is similar to yours. After a long 2 year flare where I couldn't get out of bed, I slowly began to improve, and now, 5 years later, am nearly my old self again. I've had to slow down and listen to my body so I don't overdo it, but life is so much better. You asked about meds. I've tried so many-methotrexate, imuran, cellcept- and now leflunomide seems to be the one that has helped the most. I'm also on plaquenil and prednisone. We all react differently to meds and have to find our own combination that works for us. I'm happy to hear that your move to Arizona has been beneficial to your health. I hope you're still under the close watch of a good rheumatologist. You don't want to flare without being under the care of a rheumy. Stick around. We need to hear from folks like you who give hope to others who aren't doing so well.

Birdlady, your post saddened me. Do you have a support system? Lupus can be so isolating and I hope this forum can become a safe haven for you. Don't give up.....many of us have improved, and I suppose we older folks have the luxury of taking better care of ourselves since we aren't working and running after little ones. Do you have good doctors? My depression has been helped immensely by an antidepressant. I ran out a couple of weeks ago and didn't take one for a week, and suddenly started crying at the drop of a hat and having real negative thoughts. Soon after I got back on it, my mood improved. I hope you'll join us here. It's such a safe place to say anything you want, to talk about loneliness, and to make friends who understand exactly what you're going through. Hang in there.

Sandys mom and Raven, I'd also like to welcome both of you to the forum. Have to run. Will write more later & hope to hear from you both. Please start your own threads and tell the group your stories so we can get to know you better.

It's nice to welcome new people to the forum.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/27/2009 9:48 AM (GMT -7)   
Hi Mkayla,
 
Welcome to the forum.  When I was in highschool I started getting joint pain and had a very big sensitivity to fluorescent lighting.  As I got into my 20's I had horrible periods and the joint pain and fatigue got bad.  I was 26 when I got my diagnosis.  My symptoms had grown into severe pleurisy and an inflammed heart valve that was causing palpitations and shortness of breath.  Once I was admitted to the hospital, I was diagnosed 5 days later.  I had a stroke 2 years after my diagnosis.  This was caused by the antiphospholipid syndrome (APS).  The stroke left me with a simple partial seizure disorder.  My Lupus was fairly quiet until a month ago.  It attacked my blood and has caused a fairly serious case of thrombocytopenia.   I'm still dealing with it right now.  I've been fortunate enough to never have any kidney involvement, which is rare!  The disease seems to like to attack my blood.
 
Lupus is very unpredictable.  it can be quiet for a long time and then all of a sudden cause a lot of problems. I take Prednisone, Imuran, Plaquenil, blood thinners and a bunch of other stuff.  I"ve had good reactions from all these medications.  Sometimes it take some playing around with various combinations of everything to find the combo that will work best for you.
 
I hope your Lupus is one that is well controlled.  You can ask us anything here!  We'll do our best to help you along.
 
Ginny
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
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, PTSD. Prednisone, Imuran, Plaqunil, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6,
 Moderator for the Lupus and Fibromyalgia forums


bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 9/27/2009 2:41 PM (GMT -7)   
cool  Hi hippumom2, Patty Latty, and the rest of you lovely ladies.  I am so thankful I foound this site.  Now I know that I am not alone [nor are any of us].  This is all so amazing to me as I really knew nothing of systemic lupus.  I believe that this will subside soon.  I have horrendous muscle spasms to the point I have fallen.  I hope that those abate soon.  Sleep is a problem have you had that problem?  I am obviousy getting some sleep or I would not be here.  I guess I get 20 to 30 minutes every 2or 3 hours at night and I am awakend by the muscle spasms.  I have a very high threshold for pain but these are really severe.  I had the pleurisy attack and that is clearing up Dr. is sending me for chest x ray Monday then after a few days possible follow testing for histoplasmosis.  I try to stay active I have a aviary of about 30 cockatoos and amazon parrots puls a few conures.  Plus I live on 1.3+acres in Florida [not complaining] have fallen behind on the yard work [fences to mend overgrowth to remove etc]  Always been very active at home but not so much anymore.  I also look after my brother [lives in another city] who is a schizohranic that can be challenging.  My support system is {here on the computer, my Dr. his nurse and staff and I am a very religous person, plus my best friend and her daughter who sadly face challenges of their own but when my beloved Doberman Salsa died they were here in the hour and (her daughter) buried her on the property next to the fish pond.  Few people know of my illness .... just that sadlly when they would ask if I could help I woud preface it with If I can.  I am sure you all know how that one feels.  So people drift.  However this forum is a blessing.  I do not know what treatments I will receive due to the condition of mly heart, liver, kidneys, etc  he will be cautious. I have faith in him as he has treated me for close to 20 years now.  He was just a young single Dr. when we started and he and his staff call my their Mrsxxxxx. So yes I guess I do have a support system if I take into accord all the things I have written .  Be happy. and Thank you for being here.

Weleetka
Regular Member


Date Joined Oct 2007
Total Posts : 184
   Posted 9/28/2009 10:26 AM (GMT -7)   
Welcome to both of the new ones... BL and MK....

Coming to this board is a huge help... and I am glad I found it too...

My symptoms started about 2 years before I got my DX... swelling of my joints... my fingers would pull down at the end of the day.. they hurt so bad to try to raise them to the correct position... my knees were the worst.. terrible pain.. if just went from joint to joint all over my body... then, I got this terrible pain that moved around in my chest, that lasted for six weeks... it hurt terribly bad... I went to the Dr. but nothing helped... then I was told my ANA was high.. go to a rheumy... I did in Little Rock for about two years but never got the DX.... had some surgery and at the time.. decided to stop working... I had been working all along this time with all the pain... never missing work... just toughing it out... at night I would just be a wreck but with rest and hot water, somehow, I could go back to work the next day... and the tops of my feet hurt so bad... I could hardly raise them to walk....while recooping from surgery...found out we were moving back to Oklahoma and when I got there, the first thing I did was find a Rheumy... He DX me immediately.... have been taking med's since Dec. 2005.... I have no organ involvement of which I am terribly happy... I do rest.. and I know my limits... stay out of the sun....and still love my hot water......oh and I also got a terrible eye infection... that was the last thing that happened to me before I got the DX...

Post Edited (Weleetka) : 9/28/2009 12:35:13 PM (GMT-6)


Mkayla
Regular Member


Date Joined Sep 2009
Total Posts : 25
   Posted 9/28/2009 11:36 AM (GMT -7)   
 

OMG,

  Thank you to everyone who replied to my post. I am so thankful for your advice. My doc said it was ok but not the best because I thought I was going to have RA, We were both shocked when it came back Lupus... I researched it online and still I felt like it was not so bad especially since the pain is almost I was taking strong pain med till I moved and a month later im almost myself.. I fear that if I don’t get my weight and all over health under control it will give the lupus ammunition to use against me in a flare form... so im really trying hard to focus. I need to be my best for my family and future.

  Now I have a place to come where I can let my guard down and understand what is going on with my body I feel a lot of relief. It’s not all ok and it can be worse so I will just have to live everyday the best I can. So thank you all for your support, advice and for sharing your stories...


Mkayla


bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 9/28/2009 11:47 AM (GMT -7)   
Weeleetha and Mkkkayla, so good to know you are here.  It seems that no matter who you are or where you are or who you see;...lupus remains a mystery.  It is my fervernt wish that the medical providers accept and treat accordingly.  So sorry about muscle spasms I too have them and now I know I am not alone.  None of us are alone. take care

bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 10/6/2009 8:26 PM (GMT -7)   
Well some time has passed since I last posted.  I hope this finds all feeling better or holding their own.  The recent flare has still not lef but is abating.  Weak as a newborn kitten, my body is so sore from all the muscle spasms it is hard to walk.  I use a cane when I am out but here at home I just hang onto the firniture.  My Dr. said to sleep whenever you can....a privelage that younger people whao are employed or raising children do not have.  I do not envy you.  When I was younger and working the flares would lead to unemployment  and marital problems.....but I am 72 and things were so different then.  I try not to be angry as that is not a nourishing emotion unless it gets one moving again.  Anger can be a motivator as long as it does not dominate ones' outlook on life.  My best to one and all. yeah
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