Hello all. I sure hope someone can help me! My hands hurt so bad it is hard to type this. The hand pain started about 3 months ago. It got a bit better when I had my Rheumy appt a couple weeks ago. The space between my knuckles (both hands) is very swollen and tender. It feels like the bones are growing together when I feel it. It is a very obvious swelling. I still have my "knuckle bumps" but not very much. If I spread my fingers to open jars etc., the reaction is similar to touching a very hot pan. The pain is very intense and I can't do it. My hand strength is very very limited now. I am lucky to pick up 1 lb without pain. I do have OA and take Naproxen 500 mg 2x's daily. Have for several years.I do not have it in my hands though. Doesn't touch this stuff!
Some history:
My paternal aunt has RA
My maternal great aunt had Lupus
My sis has some kind of autoimmune disease (just tested and on plaqenil?) and has had Raynauds for years.
My tests:
Hand x-rays show nothing
ANA positive
RF-negative
1st titre- 1:80 Homogeneous
2nd titre- 1:80 Nucleolar
ANTINUCLEAR AB
0.1
Reference range: <=1.0
Unit: U
Tests for antibodies to dsDNA and ENA antigens are not
performed automatically unless the ANA result is
> or =3.0 U. Studies performed at Mayo Clinic indicate that
positive ANA results <3.0 U are rarely accompanied by
positive second order tests.
ANTI-CCP
<2.0
Reference range: < or =5.0
Unit: U/mL
Performed at Mayo Medical Laboratory Rochester,MN
Also, both wrists are swollen on the outside and have been for years. no pain tho.
I just wrote to my Rheumy again and told her I need some help figuring out what is causing this pain.
What do you all think? I don't have any copies of my bloodwork other than this.
Please help me before I go crazy!
I have a digi camera and san post pic links if you want me too. :)
No one even has an opinion?
Gosh, I read your post earlier and I wished I could say something useful to you, but I'm new to this myself. Check back though, because their are a lot of very knowledgable people that I know will offer you whatever help they can. In the mean time, I am really sorry that you have all this pain, everyone here knows what that's like and it sucks. I'm sero negative ( their, are quite a few of us who are) and the RD says I have RA and I guess he's right because the RA meds work well for me. I think their are also quite a few who have family memebers who have RA, but I don't, to my knowledge. Anyway, please come back and check your post, people who know way more than I do are sure to respond. And please keep us posted on what happens.
Linda
Give us a minute sweetie, its the middle of the day and most people are at work! See what I meanOkay, I feel better now.What you're describing sounds like RA to me. Were you seeing the rheumy for OA, or did you just start seeing him/her when you started these symptoms? What did they say a couple of weeks ago? Did they give you anything besides the naproxen? Are you scheduled for a follow-up visit?
It sounds like you need to see the dr again, and although your RA factor is negative, so is mine and many others with RA. Two blood tests to help give an indication of the inflammation are the sed rate (ESR) and C-reactive protein (CRP). Also my dr used a nuclear bone scan to help diagnose as it showed activity symmetrically through my body.
No one should have to go day after day without relief from symptoms like this. And if it is RA, it is very important to treat it before lasting damage can set in. If your rheumy doesn't take your symptoms seriously, you may need to find a new doctor.
Hi, my stiff fingers is my number one complaint! I'm on so much medciation I can't believe I still have this problem! Remicade is one of the new super drugs and is suppose to help me lots, and the 20mgs' of mtx (methotrexate) would seem to have worked for me by now (3 months). But, no, I now have to add 15mgs. of prednisone. You could talk to your doctor about trying pred, for a short period of time. 3 wks!, good luck, LyndaHi, I am still very new to this and unfortunately it started in my toes "YUCK".... then moved to my fingers. But, now with the meds I am doing much better. My doc said that the prednisone is for instant relief but the other meds have to build up in my system. I agree with everyone else, get to the RD and hopefully he can get you some relief. Good luck!!!It very well could be RA, for not all people with RA will test RA positive. A good source of figuring out what labs mean can be found at http://www.labtestsonline.com A very handy site.
It could also be osteoarthritis. Some folks think OA doesn't "hurt," but believe you me, those people are wrong. The best thing you could do is find a good doctor to work with you -- and understand that it's not always easy to get a diagnosis at first. In the meantime, keep a journal of your symptoms and symptomology. Take pictures of your joints when they are really swollen and "bad." For some reason, when we have a rheumy appt, a lot of times this stinking disease will choose to hide!
It's not OA per the Rheumy. She has no idea and only says after the Mayo clinic results "Well, that is good news".Hello & Welcome to AI
It certainly sounds like it could be RA. I'd make an appointment with your RD. Perhaps they could even write a script for a low dose of prednisone to see if that helps. Keeping a log is always helpful for appointments and taking pictures is great. My hands are swollen and hurt on a daily basis. Most days it's not debilitating though and I've found relief by wrapping them in a heating pad.
Peace & Love...Neasy
Are you having any symptoms other than your hands? What were the results of the your sed rate and crp tests. Have you had any thyroid testing done. The pain you describe will also show up with undertreated or undiagnosed hypothyroidism
You do need to get back to the doctor. No one here can diagnose you but we do know that pain is not normal
I know no one can dx me. I was just hoping to see if it actually sounded like RA or not. I did have Thyroid testing done...normal (I think it was 122? but cant remember) I honestly don't know if I had the other testing done (sed rate crp test) All I know is I went through 6 mos of blood tests and the only ones on my online chart is the ones posted in my first post. ANA, RF, and I think dsDNA?It sure sounds like it could be seronegative RA. BUT I am not a doc. Your ANA test measures the amount of inflammation going on in your body.
The best thing I can tell you is to get back into the rheumy ASAP. Also...call for some pain control until your appt. You do not need to live like this.
I agree grammaskittles...It does sound like seronegative. It seems like you have good communication with your RD. Perhaps they could treat you symptomatically. If not, at least script something so that you're not miserable until they can figure it out...sheesh!
I really feel for those of you that are seronegative. My RA may not be under control but at least my diagnosis was easy.
Take care GrammaKathy & let us know how you do.
Peace & Love...Neasy
It could be RA - I am a very weird RA patient. My bloodwork looks like a normal persons, even my sed rate never goes very high. I started to think it was all in my head. My xrays look great too. I think thats why my 1st rheumy blew me off all the time. But my hands have been extremly painful & swollen for years, and now of couse it's everywhere. But the 1 thing with me is you can feel the heat radiating off me. I think I could cook an egg with my bare hands sometimes. None of the meds have helped at all, maybe the pred. alittle. I finally had an MRI of my hands & and thank God for erosions (sick huh) but now it's RA for sure, after 15 yrs of suffering!! So with sero neg RA you have to be patient & have a rheumy who cares, Good luck. CherylHi, don't you have a high 'inflamation' showing on your blood test? My dermatologist read my latest blood test (because I thought I had an infection on my arm) and he said there was an inflamation that was high, but my arm wasn't infected! That was a great relief as it was very red and yukky looking. It is fine now.LyndaWelcome to AI Kathy.
My earliest symptoms of RA were in my hands. My first indications were that I would wake from a dead sleep in horrible pain in my hands. When I would move then I thought they would break! When I'd get up in the mornings they would be swollen; but not horrible. Do you find your pain to be worse upon waking? Does it get better after being up a while? That's a good indication of RA....but not a sure thing. We all seem to have different symptoms. My blood work test negative for RA but I often have an elevated SEDS rate and my x-rays do show erriosions even early on. There has been progression over the years and I've been fortunate to have RD's that have dx'ed RA without the typical blood work being positive. Thank goodness for that because after 13 years without treatment I would be in horrible shape other wise.
Good Luck to you. Hope to see you here in the future. Welcome again to AI.
Ask your rheumy if there is a hand clinic he could refer you to. I went to one this year for similar problems to those you are describing. I was having difficulty using my hands especially typing and twisting motions. I had some sswelling but mostly throbbing at night which turned out to be carpel tunnel syndrome. Some of the things the clinic did was have me put my hands in alternating tubs of hot and cold water for 1 minute each for a total of 10 minutes. They also dipped my hand in hot wax and had me do exercises to increase flexability. I wore splints at night. The hands are much better now. I also incorporated many of the clinic suggestions: padded stearing wheel, liquid jell pens, a different computer mouse,etc. There are lots of things you can do in the middle of a flair to reduce discomfort and prevent disability. You may feel much better later. My hands initially hurt a lot in my first 2 years oif RA. They bother me less now.
Actually, the pain is not the worst thing! I am losing use of my hands. I can barely open jars, I have to cut open all bags, I can't stir thick stuff (like cookie dough) Heavy things have to be "cradled" in both hands, etc. The swelling actually looks a bit purple now, but I think that is viens in my hands. I forgot both ankles are weak too. Feels sort of like walking on a twisted ankle.That's good news Kathy! I hope she is able to help you...let us know how it goes.
Peace & Love...Neasy
Kathy,Oh sweetie your hands look like my hands. Dig up the thread What A Day that I started. Pics of my hands are posted there.
That almost looks like a nodule on that pinky finger.
Geeeze can you get some pred before the appt? What about some pain meds? That just looks so very painful and so very uncomfy.
Once that swelling goes down you will prolly gain some use of your hands back. That happens with me when I flare up. My hands will be crud during the flare but then I will get some better usage with them once the swelling is gone.
Maybe get a paraffin wax bath for your hands. They are awesome. They have them at Walmart for like bucks. Also rice in a cloth bag that you heat up in the microwave is great too. I have something similar to that my husband bought for me and it works wonders.
Oh man hunny I hope you feel better soon. ((((hugs to you)))
Hi Kathy,
Just found this thread and wanted to respond. I am another seronegative RA who was blessed to have caring doctors follow me for the past 9 years. Yup, it was that long ago when I had the first inkling of stiff joints and fingers that wouldn't bend if I clutched a shopping bag handle for any length of time At first they all said they didn't know what I had...but that they would treat the symptoms. So they did. And over time I had to keep ramping up the meds to handle the pain, swelling and stiffness.
Did I give up shopping? Gosh, no! But nowadays my RA is under control. There was a time prior to good meds to handle this disease where the pain limited my mobility. I can still recall how painful my middle knuckles were...I eyed the papercutter in our office and thought briefly that a quick amputation would give me relief. That's when I knew I had to do SOMETHING to ease the pain.
MTX and Remicade have been my salvation! I truly believe this. Sometimes I forget that my RA used to cause unrelenting fatigue, fevers, and stiff joints. (Your hand photos resembled mine, too.)
Wishing you better days ahead!!
One week to go for my next appt. I cant wait! LOLYep what you described sounds pretty typical of RA. go to bed feeling miserable and wake up the next day feeling fine. Or vice versa.
I'm not sure on the nodules question but I think they can pop up that quickly.
WOW...well, I really feel it is, so HOPEFULLY with my family history, symptoms, etc she can confirm whether it is or not.Ok...I'm a little eh on what your doc said about not putting you on anything for the RA/Lupus since it is in the early stage. I really have to voice my strong disagreement with that. NOW is the time to get treatment going. NOW is the time to slow down or hopefully stop the progression of RA. Not when it is in its moderate stage or severe stage and there is damage done already. The name of the game here is PREVENTION!! The earlier you can get a firm dx of this crud THE BETTER!!! The EARLIER you can get treatment THE BETTER!!! The fact that you have any flares AT ALL is a sign that it is not under control. Ya think if it was under control with Naproxen you would be having these issues??
I strongly urge you to get a 2nd opinion. Please.
What kind of info are you looking for toshow your doubting Thomas of a family? Point me in a direction and I'm sure I can come up with something for you.
Altho the circumstances really bite that we had to meet you, you are a great addition to this board and I look forward to hearing more from you.
I have to agree with grammaskittles on this - get a second opinion (that is what they are for).
Oh, and welcome!
Your RD said no meds cause it's too early?? That makes no sense. Everyone knows that most of the damage occurs in the early stage. Get another opinion. Soon.Thanks all! I thought it was a bit strange also.