Flare and the unbelievable pain

[LucyK5821]

I got diagnosed over a year ago with UCTD even though I fit everything for LUPUS except the positive ANA's and have been on Plaquenil ever since. Life has been well. Only a flare or two since until now. About 3 weeks ago I started having shooting pains in various parts of my body, especially my right hand pinkie. No redness, swelling nothing. Just pain and it's bad. Called Rheumatologist who said it is a flare and put me on the 4mg prednisone pack that you take 6 pills on day 1 and 5 on day 2 and wean yourself off. I'm on day 3 and the pain is unbearable. I've taken Motrin 400 mg and it doesn't even take the edge off. Called the rheum. tonight and talked to the on call doc who wants to up my steroids to 40 mg (which I don't want to do) and take 800 mg of Motrin for the pain. My question is I am not a regular steroid user but when I have inflammation it works. Now nothing. Does this mean my UCTD is turning into something worse. Oh and the day before I started the steroids I got the flu shot, but I was in pain about 3 weeks prior when my flare supposedly started.

Thank you all for reading and I hope everyone is well.

xo

[whisperit]

Hello LucyKnumbers,

Sounds horrible. I have a similar diagnosis (at least, UCTD is the label most usually found at the top of my rheumy's referral letters!).

Intense shooting pains, mostly in my hands and forearms, were one of the main symptoms before I was diagnosed. It took several weeks of treatment on both hydroxychloroquine (Planquenil) and 20mg prednisolone before they subsided. Nowadays, they tend to be just a general soreness, but I do occassionally get fleeting stabbing pains in one or other of my toes(!).

So your pain sounds consistent with a flare, that could be brought under control with a week or two of steroids. My other thought is that I often have a kind of instinctive feeling for whether a symptom is important or not - do you get that? Like - my toe pain is intense enough to make me jump out of bed, but I never have the feeling that it is "important" somehow. I guess it's just about trying to work out your own body's language?

Anyway - as you can tell - my experience is very limited and I wouldn't want to tell you what to do or try and diagnose your symptoms. Hope things get better very soon x

[777dove in reply to whisperit]

Hello Lucky, I too am seronegative and have suffered from these shooting pains. I am still not sure what is wrong with me. My lip biopsy was positive but that is all. I have been labeled with Sjogrens syndrome, but I am thinking it may be something else like MS or Scleroderma.

Seems my body over reacts to just about everything! Having an actual name would sure help!

[Samaka in reply to 777dove]

same here but diagnosed Sero negative undifferentiated mixed CTD , why do u think of MS , because here in my case they think of it also !

do u have GIT , bowel ,bladder problems?

[LucyK5821]

MS did get thrown around a while ago but I chickened out on the scan. I have so much inflammation in my shoulders they actually burn. Just put in s call to rheumatologist. We shall see!

[777dove in reply to LucyK5821]

Lucy, I am sorry I got your name wrong. Me too with the severe pain. My neck froze up two years ago and hurt so bad. A neurosurgeon I went to was all ready to perform a diskectomy on me! I am glad I waited cuz it doesn't hurt-- for now.

The reason I wonder about MS is because there are no lab tests to prove or disprove the disease. As we all know an MRI is what is usually used oh and a spinal tap. Very scary!

[Joy_1]

Hi Lucy

I have UCTD. I was diagnosed in 2012. I too get pain way before a flare.

I need to take around 15 to 20mg Pred to knock it on the head. Works it's magic in 48hrs.

[dianna123]

What is UCTD ?

[Chanpreet_Walia LUPUS UK]

Hi LucyK5821,

The Lupus Encyclopaedia states that “UCTD is a common diagnosis for patients of rheumatologists. In fact, more people have UCTD than have SLE. If diagnosed with UCTD, you are not alone; 10% to 20% of all referrals to major medical centre rheumatologists initially have an undifferentiated connective tissue disease”.

An ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. Further testing would be required to accurately identify the cause of your symptoms. To find out how lupus is diagnosed, you can download our free information pack here: lupusuk.org.uk/request-info...

We published an article on our blog about pain management which I hope you will find useful: lupusuk.org.uk/pain-managem...

Please keep us updated, wishing you all the best.

[LucyK5821]

Hi everyone! So my rheumatologist says he thinks it is fibromyalgia. Put me on Gabapetin and said it should take about 4-6 weeks to see results. Anyone ever been on this medication before. Does it work? I just need some relief!!!!