Does this sound like RA to you? | Arthritis Information

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I've read a lot of the things everyone posts here, I do not have the same symptoms that many of you have. Mt doctor diagnosed me with sero-neg RA via symptoms, mainly pain, and an MRI of my hands. Ankylosing spondylitis too, but I am not sure if he did the genetic testing or if he is basing this on symtoms.

I am a little stiff in the morning. I usually feel worse in the evening. It feels like more than my joints hurt. My muscles ache. I feel so fatigued. When I hurt like I am today, I am nauseated. It's not sharp pain, it's like aching, throbbing pain.

I am so tired of this, it seems nothing helps and I can't get my doctors to listen to me. I think I have something else going on, I'm a nurse but I'm ER. I know arthritis when I see it but it's usually seropositive, high sed rate, high everything. Patients will come in with hot, swollen joints. I have swollen finger joints but none of my other joints swell.

You guys are the experts, diagnose me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I would never presume to diagnose you Wendy, but just so you know....RA can affect tendons, tendon sheaths and muscles.  When I am at my worst, my pain is always extended beyond just the joints (as if that weren't enough).  Fatigue, morning stiffness are classic symptoms or RA.  Also, when I flare the pain always is worse at night, especially overnight.  I haven't felt nauseous but I know that extremem pain can affect people that way.

What meds are you on?

Yuuup. It sure could be. If you're not happy with your doc though, you can always get a second opinion. There's nothing wrong with that, especially if it gives you piece of mind.

I don't always swell either. Like at the moment. If you didn't know me, you'd think I was crazy, me saying my hands are "puffy" they look normal. But I know me, and this isn't right.

My blood work comes back as that of a healthy person. Even IF I'm actually swollen. So labs don't always mean a whole lot.

I had my first humira injection on Tuesday (tried enbrel before, didn't work), I take Mobic, Sulafalazine and I have prednisone to take when I need it. I took 20 mg early this morning but it hasn't phased me. I have Talwin NX to take for pain, Zanaflex for muscle relaxer. I am just so tired of being sick and tired, I know you know what I mean.Wendy, katie's right.  Go get a second opinion, it'll put your mind at ease.  Or maybe it'll get you on the right track if you're right about a misdiagnosis.Well...not a doctor so I couldn't possibly diagnose you.  I do agree with Katie and the 2nd opinion thing if you are not satisfied with the dx your doc has given to you.  The only thing I can really say to you is that it really does sound like you have something auto-immune going on.  You don't necessarily need to have hugely swollen joints in a flare or even normally when you have RA.  And as Link pointed out...RA does affect other parts of your body. My fingers can swell but my feet may not be swollen.  It doesn't necessarily have to be if one joint is swollen they all are.  It just depends on where the inflammation decides to play. 

Has your doc ever gone over the results of the MRI with you? Has he told you why he is basing his dx off of the MRI results?  Did he see inflammation or damage? 

There was just another post about lab work and I am going to say the same thing here.  Lab work is not the end all be all for diagnosing this disease.   Good docs really look at how the patient is presenting to them also.  I am sero negative...always have been and most likely always be.  Doesn't mean I don't have a raging case of RA.  Even when I flare HARD and end up in the hospital for 3-4 days my labs always come back only slightly elevated.  20% of RA'ers are just like that. They do not know why.  It just IS. 

To me hunny...it really sounds like you are going thru some denial.  Perfectly typical and perfectly normal.  We all go thru the 7 stages of grief when we have a chronic illness and so do our partners and close family.  Check out this link for info and help with that. http://www.arthritis.ca/tips%20for%20living/dealing%20with%2 0emotions/arthritis%20and%20cycle%20of%20grief/default.asp?s =1

Let us know if you decide on the 2nd opinion or not and how it goes!


Seems a lot of drs can't recognize RA when they see it!  Stand your ground and demand more tests--if you suspect something more or different--you are probably right.  This is where I have problems with the med. community--when we do complain something is wrong--they dismiss it.  They want you to come in for tons of routine physicals but when you actually complain about a problem --they dismiss it.  You are your own advocate and the only one in control of your well being.

In a round about way he went over the results with me... via my primary care physician who called me and told me I had joint damage consistent with RA. When all of this started I had a rash on my shin, my PCP said it was erythema nodosum. It's associated with rheumatic stuff. I have aunts that have RA and my poor Mammaw had it so bad she was crippled by the time she was 30. Given all that, I can see why they diagnosed me with RA. I don't understand however, why none of my lab work and I do mean NONE ever changes and why none of the medications with the exception of prednisone have ever worked. I suppose I am just at my wits end and maybe I am wishing this away, trying to convince myself that I don't have it.

I had a friend who is a doctor, she told me that she thought it was all in my head. Since she was at the time a very dear friend, I believed her. It took the rash to take me to the doctor's office. I am sure that many of you have had well intentioned friends and family members try to tell you that you aren't really unwell, that you are faking it, that you're just lazy and you would feel MUCH better if you just got up and did something. I swear I wouldn't wish this disease on anyone but I do wish that the disbelievers could have what we feel almost daily for just a few minutes.

I'm sorry for this tirade, I am just feeling bad and feeling very depressed about all of this at the same time. It makes me feel kinda nutty trying to be a nurse and a patient at the same time. Thanks for letting me whine.

sweety, its ok to whine, we all do!! Its a hard illness, if it runs in your family, its quite likely you have it.. What did the test , specifially for RA say? Is it both sides?  What kind of rash, was it like the Lupus rash, on the face, they call it the wolf rash? Is it possible you may that? Do KEEP on going to drs, they are NOT God's!!! It took me 18 yrs, for them to figure out i was Deaf.. (hard of hearing, ) DUH..and many more yrs, to figure out i was bipolar.. I'm glad the steroids help, that does say something. About meds, I think, that its like w/ the bipolar, you have to try a lot of different ones out and different doses and esp being a women, w/ all our homones, makes things even more difficult, but darlin don't give up... keep fighting and keep looking.

Its great that you can work, the chronic exhaustion totally gets me!

Hugs~ Whispered~

 

Oh man there are times I wish the disbelievers could gimp a mile in my slippers!!! 

As whispered said,sometimes it just takes the right combo of meds to figure out which works best for you.  Frustrating..yes...incredibly frustrating.  Is it worth it in the end to keep on trying new meds and new combos of meds?  YES...totally worth it.

Your labs may not change because your RA is still basically untreated if it has not so far responded to any of the meds (except the pred).  Once you hit the right combo of meds and your RA starts to get itself under control, THEN your labs might change.  I can tell you if you are sero-negative that *might* not ever change.  Some of us never switch over to sero positive and show and RF.  I have been sero negative for 15 years now!!! 


Hang in there.  I know this is incredibly frustrating as I am going thru the same thing right now.  Trying to find that one med that is going to give me my life back.  It is ok to go on tirades and whine and scream and moan about this.  All part of having a chronic illness. 

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