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Question - New Member w/ rheumatic/connective tissue disease

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Rheumatoid Arthritis
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Posted 5/12/2006 5:49 PM (GMT 0)
I was hoping that someone may have had a similar situation with their joints. My hip and knee joints keep popping in and out, and the right hip makes large cracking noises when I move it right or left. Dr. prescribed 1200-1800 mg Ibruprofen and pain meds, all is well pain wise except the hip which is still very painful, hot and swollen even when resting. Weight bearing hurts more and walking causes a limp.

I'm curious as to whether or not I should be concerned about the hip cracking. It already feels unstable, but this is my first time going through this and have nothing to go by experience wise. Doctor thought it was rheumatory arthritis but no elevation of SED rate. Rheumy thinks I have Lupus. How long do I wait to see an expert? Would I go to an Orthopedic doctor or someone else? What causes cracking and poping? This is a very loud crack and it scares me.

I appreciate any response. This way I have some avenue to look into. Thanks. Kris
Posted 5/12/2006 6:25 PM (GMT 0)

Hi Kris,

Your situation sounds remarkably similar to mine.  I have an official dx of RA, but my rheumatologist doesn't think I actually have that.  But he does feel I have something rheumatoid going on, possibly early lupus/mctd.  I also have the same problems with my hips.  I've been a bit confused lately, though.  I do have the morning pain and stiffness that goes along with any kind of inflammatory arthritis, but my hips and shoulders tend to get worse with walking or even standing for extended periods of time.  One thing my rheumatologist (who is, by the way, the right type of doctor to work with lupus) is looking into is mild myositis, which goes along with lupus/mctd.  With myositis, your larger joints are affected (usually the ones closer to your trunk as your hips and shoulders and neck), and they will get a lot more stiff and painful upon walking and standing for long periods of time. 

I'm not sure about the hip cracking, but my knees will crack every once in a while.  My rheumatologist told me that's a very nonspecific and vague symptom, and might not mean anything at all?  Yet, when he examines my shoulders, my right shoulder will often pop and he seems a bit concerned about that.  I say ask your rheumy about that.  In any case I hope you get some relief and answers soon.

Elcamino

Posted 5/16/2006 4:48 PM (GMT 0)
Elcamino:

The rheumatologist would be who you would need to see for Lupus, Polymyositis, RA, etc. Has he given you any ANA, ENA tests to see if you have a connective tissue disease. Your symptoms sound similar to mine. The joints, muscles, etc. do get worse when moving or standing for long periods of time. It continues to get worse and I am slowly losing muscle strength and tone. I hope both of us find out what is going on. Lupus usually has several symptoms. You may want to research it to find out whether or not you meet the criteria and to help the doctor acknowledge possible symptoms you may have for Lupus. For example, I didn't think my rashes, organ inflamation and lip ulcers were anything to bring to my rheumatologists attention. Later I found out that this information helps them to diagnose me and can be symptoms of Lupus. Mixed Connective has a variety of diseases that mix together. Although the doctors say Lupus for me (My family carries the disease; grandfather, cousin and recently my daughter), I am starting to think it is Mixed Connective (MCTD). I now have signs of Lupus, Polymyositis and Scleroderma but not much has been life-threatening for 10 years, just this past year I had with blood clots and pericarditis. However, the symptoms have been debilitating off and on for years. It has been one thing after another and very difficult to adjust to. Please let me know how you are doing. My e-mail is "[email protected]". Best wishes - Kris
Posted 5/16/2006 5:02 PM (GMT 0)

Kris,

thanks for responding.  From what you've described about your current situation, it sounds like you most definitely have a CTD of some kind.  My rheumatologist originally tested me (3 years ago) for ANA, RF, and a host of other things.  Not sure what ENA is, though, or if he tested me for it?  At the time, I only test positive for RF--negative ANA.  Because the ANA was negative, he did not test for any more specific antibodies, but said that it is possible (albeit rare) to test positive for specific antibodies (e.g., the ones for polymyositis) but have an overall negative ANA.  As far as the specific antibodies for lupus, individuals with MCTD normally never test positive for those antibodies, but only test positive for the specific antibodies for MCTD (anti-rnp).  It all gets so very confusing to me, but every single case is different.  My mother had MCTD, and she started out with exactly the same symptoms as me--positive rf, symmetrical joint pain, raynaud's.  I don't think she ever tested positive for lupus, and it was years before she developed the antibodies specific to mctd.  She was left without a diagnoses for a very long time.  This is such a grey diagnostic area, and really a bad space for a patient to be in.  NOt having a specific dx, regardless of the lack of a cure, can really take its toll in the long run.  I hope you find your answers soon as well.

Elcamino

Posted 5/16/2006 5:33 PM (GMT 0)
Elcamino,
My ANA seems to go positive to negative to postive and always all over the board. My specific antibody to Sjogren's (SSA) came up positive on a test where my ANA was negative. My RF has been negative every time but despite that my doc is not ruling RA out completely (mostly because lately I have been getting the inflammation on the outside of my joints on the skin). I agree with you, its all very confusing.
Posted 5/16/2006 7:06 PM (GMT 0)

I guess numbers are only numbers after all.   I'm a researcher by trade, so I rely heavily on numbers, but when it comes to my own health, I'd rather a doctor treat me for symptoms despite what numbers come back from labs.  Numbers do lie.

Elcamino

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