Is it RA? My hands are KILLING me!
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.
Hand x-rays show nothing
1st titre- 1:80 Homogeneous
2nd titre- 1:80 Nucleolar
Reference range: <=1.0
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.
Reference range: < or =5.0
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.
LindaGive us a minute sweetie, its the middle of the day and most people are at work!
The pain and swelling you are describing is EXACTLY how my hands and wrists are. How we can have such visible swelling and pain and very little lab response is beyond me but its not uncommon. Ice helps a bit to relieve some of the swelling. What helps me the most are cheap, cotton gloves. I get mine at CVS pharmacy for $3.99. They sell them as moisture gloves to be used after putting on a moisturizing cream. Just the soft, constant touch of the gloves helps to stimulate the lymph system to move some of the fluid out. Massage therapy works wonders, again, helps to stimulate the lymph system. You can try the over the counter rub on creams light icy hot and emu cream. I even put those under my gloves but some manufacturers say not to cover after using their product but I have never had a problem. You can also ask you doctor for a script for lidoderm patches, I cut them into strips and put my gloves over those every night! Try getting a hot wax spa, you can get them at bed, Bath and Beyond or K-Mart for $30 or so. You can also get smaller keyboards that allow your hands to move around less and that helps me a LOT with the typing! Hope this helps a bit!
See what I meanI am sorry for being so impatient. I get so frustrated with all this crap! I never really had any health problems (other than OA since I was 25 due to a severe lower spine injury) an in the last 2 years have just fallen apart! It's one thing after another. Now, I'm "legally" deaf (on SSDI) depression, anxiety, chemical sensitivities, menopause, etc. NOW THIS pain.
Okay, I feel better now.
Kathy, of course you're impatient, because all this stuff robs us of our patience. But I hope you will find some answers with all the good people on here.
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".
She said if the pain persisted, to take 440mg of Naproxen (I take 500 mg 2x's a day for my OA and she KNEW that...it's in my charts, AND I told her when I was there also.)
And yes, OA does hurt! I have had it in my lower spine and both knees for about 20 yrs. now.
I plan to make sure I get an answer one way or another SOON! If I do have Seronegative RA, I want drugs NOW to help prevent damage.
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 normalI 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?
As far as pain, ya. The problem is I have OA also, so that causes pain too. My xrays showed nothing in the hands/wrists, OA in both knees. Of course my hands were no where near as swollen as they are now.
Went to therapy for a year for depression and anxiety. My GP thought I was faking everything and basically got me fired from my job. (LONG story). Dumped him.
EVERYTHING started back in Jan 2006, but the hand pain and swelling in about the last 3 months or so. Also, the fatique is new. I ache everywhere and that is new. I have "a lump in the throat" feeling, and sometimes I seem to have scabby sores on my scalp. Never had that before in my life!
Gotta get supper. Be back later.
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...NeasyIt 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.Lynda
Welcome 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.
I will check on the hand clinic and see what I can find out. At least its not as bad as my sister. She is in severe pain daily, no sleep, and is FINALLY getting some help. She is Seropositive.
Thanks to all who have answered and helped me so far. I will update as I find things out.
Well, she decided I need to come in for a follow up. I have another appt for the 25th.
That's good news Kathy! I hope she is able to help you...let us know how it goes.
Peace & Love...NeasyKathy,
You obviously need to be thoroughly checked and tested and OA can be very painful which you already have.
I am seronegative and my ESR has been as high as 82 and C reactive 65.
The problem with RA is it manifests differently and in different places for different people. And the same with bloodwork, one RA patient can be seropositive and the other seronegative but they both have RA, symptoms are similar and also some people's blood work shows normal but they are sick.
Seronegative with me just meant it took longer to diagnose as the Ra factor thing didn't show up.
I completely relate to what you are saying about your hands. Loss of use can be worse than pain. And frequently with my feet I will describe them as if they feel like they are standing in fire as literally that is the only way I can put it.
Didn't you know impatient is another word for RA? So is frustration.
This thread is like a perfect description for my symptoms. And this:
[QUOTE=daiharleygirl] 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. Cheryl[/QUOTE]
dear? are we related? hehehehe...seriously if I had not been dx'd about 37 years ago at 9, your description could be me!
To this day some doc's I have been to have refused to accept I have RA simply because the labs do not show anything. But try to get health insurance on that basis...HA, fat chance.
Anyway, for the OP. You might try finding a gel cream called Blue Relief or if you cannot find that Blue Emu or even pure Emu Oil. I find my Blue Relief online and can easily find the Blue Emu at Walgreen's or WallyWorld. I keep the Blue Relief on the night stand and when I am woken by joint pain (hand, knee, elbow, ankle, feet...there I think I got them ALL...good times!!) anyway, I use the blue crap and it usually gives me enough relief to relax enough to get back to sleep...I KNOW, it's not a fix, but we all have to find all the work arounds we can just to get by.
Hang in there and keep after them...btw, there are other possibilities which include peripheral circulation issues. So make sure to get the doc to eliminate these too. Problem is we all need "House" but end up with Barney Phief with a MD degree.
Okay...Here is a quick shot of my hands. They have been like this for about 3-4 months now. It's hard to see, but the "lumps" are the swelling, not my knuckles. I NORMALLY have VERY small petite hands. I wear a size 4 3/4 wedding ring. :)
Right hand is the worst; I am left handed.
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 $25 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)))
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! LOL
Best wishes. My hands are the reason I am having to switch meds. Although mine don't tend to swell like that (just slight swelling in the knuckles), and they have never been red and inflamed. Just major pain like you are describing. Am praying the doc will get you some pain meds. It took 3 months to diagnose my RA because the "numbers" weren't high enough until one time they went off the charts. New problem or ?...I don't know!
I was feeling around my knuckles. I SWEAR I can feel a "growth" between the index and middle finger knuckles on both hands. My RD checked them when I went in June!
Can or do nodules show up/grow/form that fast? Now I am really starting to worry.
Well, most of my hand swelling and pain were gone when I woke up today! I was in shock that my fingers worked again! There is still some swelling and pain, but mild in comparson.
So, is that normal if this is RA? do you one day wake up and actually feel alot better but not perfect? Also, now my big toes hurt mostly when walking/bending them. There is pain starting in my feet, my feet and ankles are VERY swollen, and my granddaughter laid on my Shin bone and it was VERY painful.
Any of this sound like typical RA stuff?
My Dr appt is Wednesday......thank God!
Yep 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.
It does run in the family (auto-immune in general, not JUST RA).
Wish me luck for on Wednesday that she has enough info to decide.
My RD basically confirmed RA or Lupus.
She said it appears that I am in the early stages and does not want to put me on anything besides my 500mg Naproxen I take 2x's a day for OA unless It is needed. My flare has subsided and I just have mild pain now.
So where do I find the best info to share with my doubting Thomas's family, and the best to help me understand the things I need to do/change etc.
Thanks for all your help already, and I guess this means I am staying.
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.
She said, "I don't see any reason to start you on long term meds yet.
Schedule a 3 month follow up and see how things are then."
I thought to myself that by then, my hands could be a mess! My toes are hurting now also, but mild.
IMy sister who has RA, Raynauds, and Lupus wants me to go to her Dr, which is my Dr's associate. My RD is going to talk to him and review my sisters records. I don't know if thats going to make any difference, but maybe it will. If not, I may go to him. My sis says he is the most caring and concerned Dr there is!
As far as my family. Well, they just think there is nothing wrong with me. I have been struggling with med issues since Jan. 06. To this day they think everything is in my head, and now I THINK I have this cause my sis has it! I wasn't aware I could cause my hands to swell on command. :) I want them to understand RA as an illness/disease; not oh, you have arthritis.
Thanks to all for your help and kind words. I will continue to visit and offer support to others.
I guess it's frustrating that your family is blowing you off, especially when RA is in your history. Still, I wouldn't wait another day to schedule an appointment with another RD. Seriously, go make the call. 3 months? If she thinks you have RA or Lupus, what could possibly be the point in waiting to treat it? That makes no sense.