first symptoms of RA -- swollen, stiff fingers in morning?

Hi, Katie,

I have seronegative RA. My bloodwork was normal for almost ten years. I still am not positive for RF, but my CRP and Sed rate go up if I am not on a biologic. A 7 CRP is nothing to dismiss, btw. I didn't get treatment for many years because I am seronegative. Now I have permanent damage in many joints. If I were you, I would seek a second opinion from a different rheumatologist. My RA first started in my big joints...knees and elbows, then moved to my hands, and eventually almost everywhere. I stopped complaining to the docs because they never did anything. When I saw my current RD, she shook her head at the lack of treatment I had received. She spent an hour with me and Dx seronegative RA. Does your RD check all your joints when you go in? You may have joints that are inflammed that you don't even know about. I hope you can see another doc and get the help you need. BTW, are you fatigued? That is part of RA.

Best Wishes,
Vannie

Okay, this is simply not right! I saw two bad RD's before I found the one I see now, and she Dx me on the very first visit! A good RD treats symptoms, not blood tests. There are six criteria they look at to make a Dx, and positive blood tests are just one of the criteria. You can find that by goggling it or going to the Academy Of Rheumatology's website. One of them is stiffness that lasts more than 30 minutes, swollen joints for more than six months, at least one swollen joint in the hands/feet or something like that. I meet all of those criteria except the blood test. Truth is, seronegative RA patients get the run around from a lot of docs. That is why we end up w/such severe damage before anyone helps us. BTW, when my RD Dx me, she ordered xrays and when they came back she stated I have "typical RA erosions" in my hands. That does not come on overnight. I had RA for ten years before it was treated. Please, please, please find an RD who knows how to diagnose seronegative RA. Seronegative is difficult to monitor because they cannot go by blood tests, they have to go by clinical symptoms. You are not crazy. Don't let them make you think you are. I did that, and I am now paying for it. Advocate for yourself, sweetie!

I have sero negative r.a. My blood work was negative but the p.a. and my physician immediately stated this could still be sero negative r.a. They see it in women many times after they have an estrogen drop, i.e. menopause. Did you happen to start with the symptoms after your hysterectomy? Might be worth looking into.

My physician started me on prednisone and methotrexate. The prednisone helped with the swelling and pain and the mtx is supposed to stop the progression of the disease. I think it was caught early in the process which is good news. I will be starting the hormone replacement in a few weeks. (I had to have some gyn stuff done and have to wait)

I've just recently noticed a difference when I wake up with my hands. They are not stiff. My feet still give me probs. Very stiff when I first get out of bed. Even my fatigue is starting to feel a bit less. (I'm afraid to say it's all gone and jinx myself)

Keep on trying to find a physician who will treat the symptoms. Even if just a trial to see if it makes a difference. If it does, you'll know you are on the right path.

Good luck !

I have sero negative RA. Drs still scratch their heads though. My symptoms are all present when I'm idle for 20 minutes or more. Once I'm moving I'm either pain free, or just feel that way because the pain is so diminished. I just started menopause last spring, and I've heard that this is also a triggering factor. I have other autoimmune diseases, more risk factors for RA; thyroid disease (both Graves and Hasimoto) and vitalago. I recently changed rheumy's because my first dr could not be bothered to give me information. But he said that the fact that prednisone takes away ALL my pain is a significant reinforcing factor for RA. I can't stay on it, or don't want to anyway. Now my new doctor thinks I may have polymayalsia even though most of the symptoms do not fit. Just went through a barrage of tests and have an appointment later this month to review. I was on Methotrexate and had no relief, then on Enbrel with no relief there either after 4 months. Newest dr. took me off Enbrel but said don't throw it away yet.
I mostly notice my hands are semi closed when I wake up and it hurts to open them at first, then most of the day they are off and on stiff, but I can do normal tasks like typing with no problem;

Here's my biggest concern. I can live with pain, for now, since it's mostly when I first stand and walk or when idle then move, but I don't want to just ignore this and then one day wake up with deformities and useless joints. I just started a garden nursery and am very active outside of work. I am 58 and want to enjoy my retirement not be disabled.

If this dr says "you have polymyalsia and there is no concern of permanent damage", and wants to put me on prednisone, long term for pain, I'm inclined to say no. As long as the pain does not keep me from doing what I love to do, I can deal with that.

I agree that we have to be our own advocate for our health, but how do you know to trust diagnosis when you have no tests that match? I don't want to change doctors until I find one that sounds right, how do I know? Oh, and I do have other sypmtoms besides my hands.... hips mostly, have had foot problems for years then depending on the day, knees, back, shoulders.

Post Edited (wlcash) : 10/4/2012 3:27:48 PM (GMT-6)

Hi Katie,

I found your thread after goggling for solutions for my own similar condition.

Mine came on after a break of four months off my antibiotics for Lyme Disease. The disease basically relapsed and went into my hands and other sites but hands are worst. When you said:

"I see a rheumatologist every so often, but he's stumped. All bloodwork shows up normal"

This is very common for Lyme Disease (LD).

LD is usually the transfer of mouse blood (which is infected with a 'soup of parasites' from the vermin - the ticks first blood meal) via a tick insect (blood sucking insect) to human blood via a bite. Do you recall a tick bite or a traumer close to the time of the problem outbreak? The latter can allow the contained disease to breakout - contained from possibly some years earlier.

Read Jo BURRASCANO JR MD Lyme Guidelines 16th edition (free download) from the ILADS.org website. LD is a multi symptom disease and can imitates RA.

Get a test from the best LD test lab in the USA iGeneX should you think you may have this after reading the guidelines.

Let me know how you go.
Take care

Kent

I had those symptoms you mentioned except the burning sensation. Unless you mean, "hot to the touch"??

I am also sero-negative, and have also got a diagnosis of "inflamatory" arthritis. My first symptoms were a catch in my hip joint. I also had a lot of leg pain, all of which I ignored, for years. My first problem that I could not ignore was indeed pain and stiffness in my fingers. Now they hurt so bad that sometimes I feel that I have paws instead of hands. The pain was often worse in my thumb joint, nearest to my hand. Its hard to do anything when your thumbs aren't working correctly!

Thanks, everyone. How does a person get a serotonin negative diagnosis??.

Boatswife, thanks for telling me you have that frozen stuck feeling when the fingers are in the same position for very long. I'm so used to this problem now with no diagnosis, going on 4 years this month. (It started all of a sudden one morning and has never ever stopped). I quit going to the rheum who said I could take hydroxychloroquine, but that it may/ may not do anything good, may cause stomach cramping, Hair loss, blindness, etc. so I didn't do it. ( already have on/ off hair loss and don't want to risk it, already have chronic cystitis, don't want more risk of abdominal pain) I didn't feel like he had a clue and was just prescribing just to satisfy my frustration. I want somebody to know what this is.

Daffy doodles, the burning is the sensation but not hot to the touch. It's like I'm burning from the inside out and it goes from the fingertips into the palm down to the wrist-- all on the inside of the hands. and I notice it in the morning after I wash my hands with cold water or after I hold a cold glass.

Kentyork,, thanks for the info about Lyme disease. I'll check out your link. Yes I did have a tick bite about 8 months prior to this finger issue. The itch and small bite mark would come and go suddenly for a couple years afterwards. No doctors seemed to care because they did a test of some sort and concluded it was irrelevant. I also had a small knot at the back of my neck and the craziest shoulder pain ( pain like a pulled muscle, super sensitive with creepy crawly feeling, horrible feeling to have shoulder in seat belt strap)- resolvd after dr prescribed antibiotics for hit or miss treatment-- this was a month befor the fingers suddenly went bad.

Since my last post, I've been running and feeling a million times better than before. RArunner, running is hard because I feel like stopping the first mile, but the next two miles are much easier! I 've dropped extra pounds and feel 10 years younger.

Anyone with shoulder pain (both sides-- worse after getting 2 puppies and trying to train them on leashes)to match the finger swelling? It's probable rotator cuff deterioration or something, going on for years but never made the connection. It's gotten to where I ca't easily try to rehabilitate it with weights because of the crackly pain. I just work on range of motion with no weights.

It's nice to know that I'm not alone with the negative blood work and the "oh, it might be nothing" when I truly know that it is *something*....however I wish that there weren't so many of us in limbo with this.

I've been to countless appointments since December and I've seen a variety of doctors and have had tons of different tests. The only thing that comes back high is my ANA, but they keep telling me that it's notorious for being high even in people who don't exhibit autoimmune disease symptoms.

When I first went in, I had a super long list of symptoms and felt awful. My Dad has MS so that's initially what I thought I was dealing with. As the symptoms began to stack up even higher, I started thinking it was SLE or RA.

Most of my symptoms have diminished [so thankful for that] but I am left with pain around my heart from time to time [pleurisy? it was much, much worse before- so bad that i went to Urgent Care because I was so freaked out by it] but the one thing that stands out the most, day to day, is the pain and stiffness in both ring fingers, which I've had since January.

The knuckles on both ring fingers have bumps and look rather deformed, and even the my Rheumatologist says that they're "small", they feel huge to me. I can't get my wedding ring on and off [you guys know how that goes...fun, yeah?] and when I accidentally bend my finger more than what's comfortable [like if I catch it wrong during gardening or something] it is truly the most excruciating pain I've ever experienced. It's brought me to tears on a couple occasions, and the best I can describe it is that it feels like a small tree branch splitting in half.

My other symptom that doesn't go away is that when I lift heavy objects, it hurts in my bones when I set it down as the pressure of the weight is released. It's kind of a radiating pain, all up and down my lower arms. That's not normal. I'm a volunteer firefighter and I enjoy being active...and while I have gotten more used to it, it's still rather scary.

Yesterday was my last appt with my Rheumatologist. He is baffled by my symptoms but thrilled that my tests are all good. I had a glimmer of excitement knowing it was the last appt since I've been through so many, but when it comes down to it, I'm still pretty nervous. This doesn't just *happen* for no reason to someone who's 27. He told me to continue to monitor it, but that for now maybe it will go away on its own.

I feel like I'm whining by going to more doctors, and honestly I'm a little burnt out on all the visits.

Do those of you with stiff fingers get splitting pains in your knuckles if they bend too far? How often do you go in to get the next round of tests/opinion/see a different specialist?

Wlcash & katie, that's how I feel too- if there's no test that backs this up, I'm a bit apprehensive about taking meds when I do finally get dx'd, but at the same time- I don't want to just do nothing for years and years.

Pain does get my attention, however after 2 years of diagnosis I have gotten used to it, sort of.  My grip has gone to heck, I have enough finger movement in my right hand to still type and my left hand is a little better.  I haven't worn my wedding ring in 6 months, previous to this I had no noticable swelling.  Now my hands, knees, ankles and feet have swelling that won't go away.  My knees, hands and feet have been warm to hot for the past 2 months.  The worst hot joints I experienced was while taking prednisone and over doing it because I felt good for taking the prednisone.  It poofs me up horribly but I also love what it does for me.  I am too young to be this useless.  In reality I think I have had RA since I was in elementry school with serious foot and knee pain along with morning stiffness in my hands that I didn't know what it was at the time and ignored it.  I also had bouts of exhaustion that my parents took for possible mono and had me tested for, always came back negative.  I have been going to a rhuematologist for 2 years but suspect I have been dealing with this for closer to 26 years to a lesser degree.

I thought I was going crazy or just had a very low pain threshold.  I was tired of going to doctors who just give up or think I was just complaining. 

I went to a new primary md when my left arm was hurting, going cold, turning purple.  Pain in my right hand, base of all my digits hurt, base of my toes hurt and both knees felt like they were swelling.  This md told me at the first visit, I see what you are seeing, but I think you need to accept that we probably will never know what the problem is and you will have to find a way to live with it.

After putting up with him for about 2 months, I went back to my old primary NP ( I had moved, but not far).  She referred me to a rheumatologist, who put me on prednisone for a week to see what would happen.  Of course I had no visible swelling so he was unsure what to make of all my complaints.  Had a lot of blood work done - come back in 8 weeks.  I felt great after the prednisone.  No pain!  (with the first dose of prednisone my knees sure hurt and felt week, but went away after the first day).  Went back to see him.  All lab work normal.  His question to me, "why do you think the prednisone worked?"  "Maybe it was a change in weather".  He said since I'm feeling better, come back if I start to hurt again. Ok, off I went..... little frustrated that he chalked it up to a change in weather, but whatever.

Pain started again approx. 1 month after seeing him.  I didn't go back.  Thought, He doesn't know or believe me, so I am tired of paying all of this money to go to md after md and thinking I'm crazy. 

about 3 weeks ago, pain so bad, especially at night in my elbow - burning pain, in my shoulders - horrible deep piercing pain, that when I touched it, I was immediately nauseas.  Couldn't hug my children without crying out, couldn't pull up my blankets in bed without stabbing pain, couldn't take off my shirts due to the pain.

I decided to go back to the rheumy.  He again put me on a week of prednisone.  Same pain in knees for the first day, then noticed pain was gone.  He said if the pain was gone at the end of the week, fill the rx of Piroxicam - made my reflux worse and gave me mouth sores.  Tried Daypro, currently on that, hurting coming back - with burning in my elbows, sharp pains in both shoulder, knees feeling swollen again and hands swelling slightly for approx. 2 hours.  Going to give the Daypro a little more time, if pain still there, going to next rx of Diclofenec.  Rheumy said if they don't work he will put me on Plaqenil or Methotrexate.  No diagnosis, but at least he is trying stuff. 

I should add, that I saw a md in 2010 due to pain in both hands and feet - took x-rays that said I have some joint erosions in my right hand and unable to rule out early RA.  The rheumy doesn't address that and hasn't ordered any newer x-rays.  He is the specialist right?  Wait and see.......

Well Hello people with stiff hands and fingers (in common with my scary symptoms). I am so glad to know that others out there have experienced what I've been experiencing for the last month or two. Wow!! And even if no one reads this post, since the last post was over a year ago, I just have to tell you what I just found in my search to explain my strange morning stiffness, in especially my left hand and wrist. Just in case it fits your situation and helps you diagnose your own problem. My morning stiffness feels like my veins are filled with concrete when I wake up, and if I don't start moving them, the concrete will set and I will never be able to move them again! It feels heavy and stiff and I worried that I had gotten some bug spray on me from years ago and this feeling was from insecticide doing to me what what bug spray does to bugs, stiffens them until they're paralyzed. and can't move? Scary sensation...
I tried to imagine all sorts of things this could be, but none eased my mind.

But Because it's my left wrist and heart problems show up on the left side usually, I just had to do some googling to what this was. In one place I found that the RA symptoms are usually mirrored on both sides of the body. If the left had does it the right hand should have the same symptoms. For a few nights I did get the same sensation in my right hand, but now it's back, just on my left, so I worried that it could be heart related and not Arithritis.

I'm glad I found this forum, but I had opened a bunch of search items in a bunch of tabs and after I read all your posts, I truly believed that my problem was RA, something I never thought I'd get, since no one in my family has had it. But the one who mentioned Lime Disease also got me wondering if it could be that, instead.

Anyway, right after I read all the posts and closed the tab with this thread on it, I clicked my next tab and read another article about the Ulna nerve, and I DO BELIEVE that THIS could possibly be the culprit in some of our situations. So I reopened the tab with this thread, subscribed, so that I could post and now I want to pass this on to all you sufferers out there.

I don't trust the drugs the doctors hand out like candy. Especially since the latest drug from last year or year before last is now on commercials with lawyers wanting to sue. I am not here to be anyone's guinea pig, so I do not trust drugs or Drs who can't tell you what's wrong but issue drugs to try them out anyway. I got my little common sense wisdom from simply seeing the commercials on TV. And so, if the Drs don't even know what you have, why are they giving drugs... and what about the side effects? So as soon as possible, if I were you, I'd try to get off those pills. Who knows what they're doing to the other organs in your body. OK off my soap box now...

My dad is 91 years old and doesn't take a single pill, though they've told him to for years. He doesn't wear glasses, no hearing aid, no cane, just moves slower, sleeps longer hours and naps a bit during the day, when he's not stair climbing or talking his walks or eating healthy meals. We try to do everything naturally and only recently have I learned all about how soy bean oil and soy products destroy the thyroid. How High fructose corn syrup destroys the brain and how hydrogenated ingredients are so bad for you. So since March I've read every ingredient in the foods I buy for Dad and I've found that I had to learn to make my own mayonnaise, salad dressings and peanut butter (main ingredient=soybean oil - in all of them) Had to start making cole slaw, bread, (or just go without it) and oatmeal cookies.... because all these products in the grocery store are filled with soy products, high fructose and hydrogenated ingredients! Dang! It was so much easier to buy already made cole slaw for Dad, and those sweet oatmeal cookies he loves. No more! Home made fresh now! Now, I'm juicing for whatever his blood work report says is low. Look it up and find what veggies and fruits are good for each thing, like low hemoglobin, low thyroid, etc... go out and buy the beets, radishes, carrots, etc. and juice them, he drinks it right down and we're hoping his next report will show all improvements.

I'm posting the link here that I just learned from. http://orthoinfo.aaos.org/topic.cfm?topic=a00069
It's very informative. And after reading that some of you also have shoulder pain and such, this seems to be the path of the ulna nerve. I sleep on my side in the fetal position and my elbow is probably bent all night. But now that this article told me what the ulna nerve is and how to try and not sleep with my arm bent at the elbow, where the ulna nerve runs, I'm going to try this first before thinking that it's any sort of arthritis. Oh Please, God... Let it just be the ulna nerve entrapment which I can make well.

This info also describes exactly what I've been doing for the last few months that could be causing my ulna nerve to make my stiff wrist and fingers. I moved my laptop to a shorter desk space and have been reading every night, for months, stooped over with my elbows propped on my legs. The article suggests I don't do that, gives some good home remedies before seeing a doctor, and good illustrations of the path of the ulna nerve from the neck, shoulder, elbow, wrist to fingers and how we could be aggravating it at some crucial points as it winds it's way down to the fingers. I plan to see if this helps me by changing what I'm doing wrong right now, and I pray it will help some of you too. God Bless you all and make you well!
~*~*~*~*~*~*~*~*~*~*~*~*~*~
Home Remedies
There are many things you can do at home to help relieve symptoms.
Avoid activities that require you to keep your arm bent for long periods of time.
If you use a computer frequently, make sure that your chair is not too low. Do not rest your elbow on the armrest.
Avoid leaning on your elbow or putting pressure on the inside of your arm. For example, do not drive with your arm resting on the open window.
Keep your elbow straight at night when you are sleeping. This can be done by wrapping a towel around your straight elbow or wearing an elbow pad backwards.

Loosely wrapping a towel around your arm with tape can help you remember not to bend your elbow during the night.
~*~*~*~*~*~*~*~*~*~*~

Also, THis information I found in 2010 changed my life, so I'm passing it on as well.
Just Google castor oil packs or castol oil cures. Rub castor oil on whatever area of the body may have pain or inflammation, knees, elbows, and after 3 days to a week of rubbing it on the area, you will find the pain goes away. Apparently it goes into the skin and draws out toxins that are causing inflammation, which is causing pain, and after a few days of applying it topically to the area, or adding heat with it, it will help you to take up your bed and walk. It ain't called Palma Christi for nothin.

However, castor oil was the first thing I tried on my stiff wrist and fingers, and since it didn't seem to make the stiffness stop visiting me each morning, I had to get back online and find the solution. If it's the ulna nerve, that's why the castor oil didn't work by applying it to the wrist and hand. I've probably trapped the nerve in the elbow or another point so I'm trying the ulna nerve solution next.