Yet another newb. :-)

Dinosaur

Regular Member

Joined : Jan 2010

Posts : 25

Posted 1/25/2010 9:52 PM (GMT -6)

Hello there, all. I am a 22 year old female, and I was diagnosed with Lupus 4 months ago. I had really bad hand pain and recurring bursitis prior to that which led my doctor to do the ANA testing and it was as high as it could get. He put me on a strong anti-inflammatory (Relafen) and that worked wonders for my hands, but it hasn't been doing much for my shoulder joints, and now lately my hips have been killing me. I have another doctor's appointment scheduled for Wednesday to talk about the recent hip pain.

I joined this forum looking for ideas for pain relief mainly, as most days are pretty uncomfortable (especially at work). I've tried heating pads, Icy Hot, massages, and I had a cortisone shot in my back/shoulder area last week. Does anyone know of ways to relieve hip pain specifically? It even hurts to sit down, and I have to do that for 7 hours a day, and then it hurts worse to get up and walk haha.

It seems like I'm doomed no matter what, and I'm tired of taking Vicodin every other day. I would appreciate any responses. Thank you!

-Misty

22/F/FL

jhmom

Veteran Member

Joined : Oct 2004

Posts : 2244

Posted 1/25/2010 10:05 PM (GMT -6)

Hi Misty,

Welcome! This is a great place filled with wonderful, caring people! I hope you like it here!

I too have hip pain from lupus. As you can see by the info in my signature I am on just a couple of meds

I think the plaquenil, piroxicam, flexeril and Mtx all help my joint pain in general but I think MTX works better on my hip and lower back pain as they both improved some after starting it almost 2 years ago. It sometimes takes time to get the right "cocktail" of meds and sometimes they still need to be adjusted from time to time. I sure hope you find some relief soon! Take care and keep us posted on how you are doing.

Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)

Bsime

Veteran Member

Joined : Apr 2006

Posts : 1344

Posted 1/25/2010 10:12 PM (GMT -6)

Misty,

The key is to find controlling meds that keep your immune system under control...not take pain meds.

What are you taking is an antiinflammatory med not one that will control the immune system which is what is probably causing the pain. You are just treating the symptoms. Suggest you get a second opinion from a rheumy experienced in treating lupus.

Bill

MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.

Remain optimistic and you can overcome the odds.

Lynnwood

Veteran Member

Joined : May 2005

Posts : 7743

Posted 1/25/2010 11:19 PM (GMT -6)

Welcome to the forum,

Is your doctor a lupus-aware rheumatologist? They are the doctors that are aware of the options in treating lupus --

One way to find the right dr is to check out www.lupus.org. Search for the local group in your area, then contact that group and ask which local docotrs are on their advisory boards or are otherwise working for them. Often this info is on the local groups' website.

Hope you get the right treatment soon,

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

lucysgd

Veteran Member

Joined : Jun 2008

Posts : 675

Posted 1/26/2010 2:24 PM (GMT -6)

Hi Misty -

Welcome. Thanks for bringing this up. I hope you get some answers. I've been dx'd with UCTD - and deal with hip, and back pain daily - which inhibits my activity, fitness and wellbeing immensely, as I'm sure you understand. I get sudden bouts of what feels like bursitis in my hip and recently an intense spasm with significant pain in my shoulder and neck - it's been 10days and I can finally sleep at night - but I can't get rid of it. I don't tolerate pain meds well, so I rely on moist heat, alternating ice/heat, bioflex ointment and advil. It's not enough. The shoulder problem just showed up along with a UTI.

Stacie and Bill - it sounds like you're familiar with this type of pain/problem being related to CTDs. My rheumy and pcp tend to lump it all in with fibro - but it feels different than that to me. I never know when to make an appointment or just tough it out....again.

Good luck Misty - keep us posted.

Lucy

_{diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009}

_{meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins}

Dinosaur

Regular Member

Joined : Jan 2010

Posts : 25

Posted 1/26/2010 6:33 PM (GMT -6)

I felt like I was doing fine on the anti-inflammatory when I first started taking it, so I didn't pursue going to the doctor again to see about getting medication to suppress my immune system (because I'm silly like that). I'm also fairly nervous about taking such a medication since it might limit my ability to fight off infections, but I guess it's come to that, so I'll talk to the doctor about that tomorrow. I had to leave work early today after being there for only 3 hours... I sure hope I can find some medication that really works for me so I don't have to get on disability!

22/F/FL

aimsgirl16

Veteran Member

Joined : Jun 2008

Posts : 1470

Posted 1/26/2010 6:50 PM (GMT -6)

Hey Misty! Welcome to HW! Sorry to hear of your diagnosis. Have you seen a rhuematologist? With the lupus diagnosis, its kind of odd they didnt put you on a immunosuppressent or plaquenil. I would seriously ask your doctor about it, you don't want to fool around with Lupus and let it get out of hand. Sorry you are having to deal with this at your age, I complelty understand how hard it is and pray you will get some answers and relief you are looking for!!!

Dinosaur

Regular Member

Joined : Jan 2010

Posts : 25

Posted 1/27/2010 6:42 PM (GMT -6)

Went to the doctor this morning for the joint pain in my hip and shoulders. He said my shoulders have been inflamed for so long (from Lupus) that the muscles and tendons around the joint have become weakened and can't support the joint properly, which is why it now wiggles around so much and sorta dislocates on its own. He said if I don't get treated for it, soon my shoulder will just totally dislocate and I'll have to go to the hospital. So I have to go to an orthopedic doctor. I also have to go to a rheumatologist to see about getting on meds to suppress my immune system. Hooray! He also gave me an EKG when I said I have pain when I breathe in (to check for a pulmonary embolism), and that turned out normal, so I had to have a chest x-ray and bloodwork done. I hope it's something simple, and that my lungs aren't inflamed. It's been hurting to breathe for about 2 months now, 50% of the day, every day. It's like a sharp stabbing pain and it prevents me from being able to take a deep breath sometimes.

22/F/FL

German Lady

New Member

Joined : Jan 2010

Posts : 5

Posted 1/28/2010 10:34 AM (GMT -6)

Hello Misty,

I feel for you... hang in there. I have Shoulder pain so bad sometimes that I can't even reach up to get a cup for coffee. I also experience bad Hip pain at times and when that is the case my Rheumy up's the Prednisone for a few day's.and that seems to do the trick.

Best Regards
Christine

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