feeling crap with lupus/SLE

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big jase
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 3/17/2010 7:51 AM (GMT -6)   
hi my name is jason im 37yr old with wife and 4 kids,i was told i had lupus 2yrs ago after a stay in hosy wen my heart swelld up,and my joints kept swelling up and doctors kept tellin me i had tennis bloody elbow,ive had the injections in knees,elbows,hips etc.only lasted 4 or  5 days.i was very active before this thing cloberd me i would like any advice on wat foods to eat and does anyone no of any alteritive medicens to help with pain and flare ups.my knees and feet and elbows are in pain perminently they just get worse wen they flare up like rite  now i woke up and i can only lift my right arm up and down just a bit,i carnt twist it or turn it as it sends such pain up my  arm  in to  my neck the pain is unreal,and i carnt walk today without my aid,doctor says take tramerdol,why?????????they dont do nowt.as you  can proberly tell im feelin prety down,with good reason though i carnt even play games with me kids,just picking up me 18mth old baby girl gives me such pain in me  arms but i try to do it wat ever the pain,my wife is finding it difficult to handle as i carnt do as much around the house  as i used to,im going on abit now,i will be happy if anyone could give me any tips to make life better.thanks jase.

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1434
   Posted 3/17/2010 8:06 AM (GMT -6)   
Hey Jase. Sorry you are having so much pain. After reading your post my question is, are you seeing a rhuematologist? Are you on any other meds besides tramadol? If I am reading your post right, you arn't getttin any relief from tramadol? i didnt either. It didnt do anything except make me feel drugged up to begin with and then once my body got used to it, did absolutly nothing. I got more relief from aleve than tramadol.

Things that maybe helped the pain a little was a hot bath with epson salt and then keeping a heating blanket on my joints.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1389
   Posted 3/18/2010 9:54 AM (GMT -6)   
Hi Jase. Welcome to our forum. I hope you're seeing an interal medicine doctor as your primary care, but I agree with Amy that you must see a rheumatologist. Ask your internist for a referral. If you need to, search on the net to find a rheumy.  The lupus organizations can usually help you. Pile your kids in the car and have your wife drive you even if it's a long drive.
Virtually all lupus patients are on plaquenil. It takes a few months to work, but it has few side effects. There are several other prescriptions meds that lupies can take and it's trial and error to find the right combination of meds.
 
My favorite over the counter pain killer is Tylenol Arthritis. I'm having a flare and can hardly walk in the morning so I take the tylenol first thing in the morn. I also take hot baths with lots of epsom salt and use an electric blanket. Regardless, find a good rheumatologist and get on the prescription meds that work for you. One last thing, many of us take antidepressants. I know men think they're strong and don't need them, but you are not most men: you have lupus.  Your primary care doc can prescribe them, but keep in mind that it takes time to find the right ones for you. Please let us know how you're doing OK? Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


big jase
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 3/18/2010 4:46 PM (GMT -6)   
yes i do have a roomy at hosy ive been seeing him for the 2yrs ive nown,heres me meds list
PLAQUENIL 200MG 3PER DAY
OMEPRASOLE 20MG 3 PER DAY
MEBEVERINE 135MG PER DAY
PRENDNISOLONE was on 60mg but got them down to 5mg per day.{put 3 stone on cos of these}
AZATHIOPRINE 50MG 3 PER DAY
ADCAL-D3 2 PER DAY
LYRICA 50MG 6 PER DAY {other pain in rh side}
TRAMERDOL
COCODAMOL
CODYDROMOL
NUROFEN etc lots of pain killrs which dont touch it.
 
 
me arm is still no better today,i been in touch with hosy  and doc aint there till tomorow they are callin me back tomorow.
i will try epsom salt bath tomorow,thanks jase

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 3/18/2010 9:00 PM (GMT -6)   
Hi Jase,

How did you feel on 60mg of Prednisolone? I know it's a begger with weight gain, but did it help you?

Pred is really the only thing that will help me with my joint pain. I've tried Tramadol as well and reacted the same way you did. Getting the disease under control is the best pain relief you can get. It's hard to manage the pain when the disease is so active.

Amy's suggestion of Epsom salts in a hot bath is a good one. I know this is easier said than done, but lowering your amount of stress will help too. That's a tough one to accomplish.

Talk soon,
Ginny

big jase
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 3/19/2010 4:53 PM (GMT -6)   
yes the prednislone did help,but after 12mths on them i needed to lower the amount,quwak said not good for organs and i got other side efects.its me knees and wrists and elbows,and ankcles there the worst.the best thing ive had for pain is a injection in my hip and it was brill but only lasted for 5 or 6 days,ive askd for doc to sort me another one and been told no.
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