I am begging for some advice and insight... Let me tell you a bit of my history first.
I'm 28 years old, and last winter I started getting some weird pains. They started out as a fleeting pain, that would jump from joint to joint throughout the day. It wasn't a severe pain, it was about a 3 or 4 on a scale of 1- 10. However I had never felt that before, and it bothered me. Some things became hard to do, like opening jars, because my fingers were the joints that hurt the most. I also had a pain in my neck and spine on some days, and i had chills and fever a couple of times, in the beggining of the illness. however, no swelling and no redness! Went to emergency room one day with chest pains, [ found out it was coming from my spine]. No x rays were done, but they did some blood tests, and the only abnormal thing on that was an elevated sed rate of 35.
Then, summer came! and I was cured! No more pains. I was enjoiyng my life again.
Then, in the fall, they came back, slowly. Here is where I am now:
Since the fall I have been having constant pain on my knees, aching in my finger joints, all of them. the fingers hurt more when I strain them, like when trying to open a heavy door or opening jars. Constant ache in my lower back, I can no longer dance , run, jump or exercise. My lower back pain is weird. i cant explain it, it hurts constantly, even when lying down. it's worse if i lie on my stomach, and it gets aggravated with physical activity. I feels like something is out of place...on of my knees has a bony growth the size of a big grape. that's the knee that hurts the most. also my wrists will hurt if I strain them, with any repetitive wrist motion or even while trying to brush my hair, otherwise if i'm still they don't bother me.
And then there are the other pains... each week I have a new pain in a different place, besides my regular knees lower back and fingers pain. These pains last about 5 to 10 days, then disappear. Most of the time they come one joint at a time, sometimes I'll get 2 joints together. It feels like I have injured them. For example, one week my shoulder will start hurting, badly. I can't lift my arm or do anything, severe pain, no swelling, though. I'll rest the joint and take some motrin 800, and it slowly starts to heal, then it's gone. a couple of days later, I'll wake up with the same pain in my elbow, severe pain that shoots down into my fingers, next it'll be a neck pain, cant turn my head, that usually comes with spine pain, right behind my chest. when that comes I can barely move. it fells like my spine is out of place. and so it goes on...the same cycle again, any joint can be affected even my jaw, in fact my jaw is startin to ache constantly too. there can be a break of up to a couple of weeks between these pains. and they always repeat. right now this is how I feel to give you an idea: my fingers ache with occasional more severe shooting pain in any finger joint throughout the day [ i forgot to mention, my middle finger joints seem to have small little bumps on both sides of the joints, it makes my fingers look enlarged on the midde joint, i got these last winter but they seems to get a little bigger when my finger pains get more severeand they never go back to normal]ok, my knees hurt, it's hard to go up stairs. my wrists and elbowls ache slightly, in fact I only feel the elbow pain when i rest my elbows on the table.and for the past ten days, my right heel has been hurting so badly, it hurts to even touch it to the ground. so I've been walking on my tippy toes. 4 days ago my spine and neck was attacked but it only lasted 3 days. I'm also getting some shooting jaw pain throughout the day, for like a week now.
Ok , so, I finally got healthy insurance, quickly made a dr. appt. surely she would find out that something was wrong with me, i thought...
She sent me for an x ray of my knees, because she saw i limped. and ordered some blood tests. one of them was called lupus panel.
she calls me 2 days later and says she is sending me to an ortho doctor because my x rays showed, bilateral moderate degenerative joint disease. I say ok.
then her nurse calls yesterday, and says the blood resultes were, "completely normal, no evidence of inflammation or autoimmune diseases". thens she tells me follow up with the ortho about my knees and wishes me a good life!
WHAT????????????
so now here I am! depressed and confused! how could that be? there is NOTHING wrong with me? My pains are very real! that is physical proof of them, the x rays and my enlarged middle finger joints for example...Am I supposed to just live with them, without even knowing why i have them, if I was older I might just accept that, but I'm only 28!
I haven't even told my husband and family that the doc called because they will think that I have been making all this up. I'll have to suffer in silent from now on, no one will believe I hurt.
by the way, she did some exam at her office where she touched some parts of my body and asked if it hurt. none of them did. she said I don't have fibromyalgia.
THEN WHAT DO I HAVE?????????????
I know you guys arent doctors, but you know enough about arthritis to help me. you are all I've got! plese help me! tell me if you have ever seen or heard of a similar case. what should I do now? i don't even have any meds for my pain, just some old motrin 800 that I take sometimes. btw, it's like i'm drinking a sugar pill, no pain relief!
HELP ME PLEASE! What do you think is wrong wih me?
mom-to-5, you need to see a Rheumatologist. You are really describing what sounds like RA with possible spine involvement or even a disc problem from Osteoarthritis or something else.
Do not let this rest. The nurse was WRONG in blowing you off. Bloodwork is only one indicator and many of us have problems with getting doctors to see it. Find a Rheumatologist that is willing to do films on you. You also want to see you can get somebody to do xrays and MRIs on your spine. You could have a bulging disc, Osteoarthritis or a variation of othe problems which can and must be treated.
This not all in your head no matter how they make you feel. You might also consider trying to get into see a back specialist or a neurologist.
The bony growth sounds like it might be a rheumatoid nodule. However, if it is not that, it needs to be fully investigated. The problem is that most General Practioners are really unfamilar with RA. They just mostly screen you with bloodwork and for FM. The real expert is the Rheumatologist. You have to get to one.
Go back into the office with your doctor and tell them that you want referrals to a good Rheumatologist. If you can't get that, then you need a different doctor. But I think from what you said that you can push for what you need with this doctor. That nurse was out of line. And, I would mention how that made you feel to the doctor. Some nurses are like that unfortunately. But it is the exception rather than the rule. But I always consider the quality of the doctor's staff as well as the doctor in choosing who is going to be good for me.
Give it another try.
I think you need to push your doctor a little more. Just because your blood tests don't show it, doesn't mean it's not there. I've had JRA all my life, and I have yet to test positive.
It sounds like more than just OA to me, but I'm not a doctor. Keep pushing, and keep asking question. Go ahead and see the ortho, because he may actually say "I think you need to go back to your doctor" Which would be a good thing.
Just don't give up. It's hard to say what you have, but I do understand where you're coming from. You hurt and you know it. It's trying to make your doctor understand that's the hard part!
Good luck, and let us know how it goes.
ok, sed rates can fluctuate. Most GP's don't know much about rheumatic diseases. Blood tests aren't positive in everyone. You've been in pain and have some damage already.
You need to get to a rheumatologist. There are many types of problems that a rheumy helps with and he/she can figure out what is wrong. It may not be RA, there are other's that your symptoms could fall into. Only a rheumatologist can figure this out.
Remember, damage is not fixable. You can only try to prevent it. You aren't doing yourself any favors by not looking into this further.
And not all Rhuematologists are the same. Some are good, some are bad. If you don't like the one you see, try another. And good luck.
I would say push for a Rhummy or maybe even get another opinion blood work does not mean You don't have something RA can be blood work negative for years for some it will never show positive.
If your in pain keep pressing with the doc they are supposed to work for you and even tho I am justa nursing student and not a nurse... do not let the nurse blow ya off some docs use the nurse as there shield to see how committed the pt is I quess I just don't get it with docs?
I was just diagnosed with RA in Nov. I could have written your story though! You need to get to a rheumatologist. I haven't had any swelling yet in my joints either, just pain. My rheumy wasn't very nice to me til she did the blookwork and confirmed it was RA. Don't let them scare you off though. This is your body and you need help.
If you need a referal, march right back to your gp and tell her you want to see a rheumatologist. Just because your tests came back normal doesn't mean it isn't there. My tests from my gp were borderline. But, with the rheumy they were definitely positive. She did more blood tests as well. They can xray yours hands and check for joint damage as well. Just like is in your knees.
Good luck and please keep us posted.
Laura
You just wrote MY RA story. Make sure your GP did RA Latex Trubid as well as antiCCP. The anti CCP is 95 accurate for RA. See a rheumatologist ASAP.
Sorry - My typing is horrible today. Should be RA Latex Turbid. AntiCCP is 95% accurate.
It sure sounds like RA to me with joint involvement and at least a sunovial cyst. I don't know why it is that we with RA get conflicting results. Some say a certain number you have it, others say another number you have it. They forget to look and listen to the complaints I think.
THis is where you have to self advocate, although you shouldn;t have to ,you have to. Keep pushing onward and keep asking and asking for an answer. Keep telling them about your pain, ect.
I know it is hard to do and the frustration is unbelieveable and you often think of giving up, I know I have many times since 1991 when I was initially DX after 4 hand surgeries. It is sometimes a brutal road to take and often time almost torturing.
You have us here ot help you, you will be ok..........we have been there odne that or are doing it now.
jode
keep pushing your dr or seel another one. in for years i was in alot of pain and the acted like i was making this up (they can be so insensitive) in 2001 i finally was sent to have an emg, yet the dr did nothing. i went to another dr in2003 had another emg and told me that i had carpal tunnel both hands in 2001 and since nothing was done it had advanced. so keep pushing don't let anyone tell you that you imagining this.Yep that sounds like my story as well. Also consider Spondylitis since your spine has a lot of pain. Spondylitis is just another AI disease. I also have never tested positive so far but have obvious RA. Early on the RA was not so obvious but a great doc figured it out from an exam. A rheumatologist familiar with sero-negative RA would be in order.
Good luck and take care.
Definitely, defintely, get to see a Rheumy!!
Because of the nature of the disease, we book our next appt. before leaving the surgery, so all rheumies' appointment books are filled up about 3 months ahead - therefore you might have to wait; but it is worth it. I think many of us have had some bad experiences - young folk being told it is just "growing pains" - those in their 20's told they are too young to have arthritis; and we haven't even started on friends and family yet! Like being told "But you look ok .. "
I was fortunate - soon after being treated in an off-hand manner by my then PCP, I movd to another area and the new PCP told me straight away that he thought I had RA - after a wait I got to see a rheumy, fortunately a v. good one, and have been told later on that I was lucky to be dx'd so quickly. The sooner you can start some medication the better - some RA is very agressive.
Hope you can find a good doc soon. Keep us posted - we are here to help and hand out (((hugs)) and understanding - most times, families just don't "get it" until the RA has progressed so much that it is v. evident that something IS wrong with us!
Lorraine
In cautious defense of docs - sometimes it does take a while to dx. I have a great RD and I knew that RA runs in our family. I had similar difficulties as you and still it took time for it to show up in my blood work. I think some docs are cautious about dxing RA too quickly. My wife had a case of viral arthritis and couldn't move her knees or head or ankles - it scared the daylights out of us. Doc put her on pred and Celebrex and two weeks later it was gone and she's been great since then. Point being that it looked like RA but wasn't. I don't mean to ramble, but it is difficult. I guess you have to listen to the docs sometimes, but more importantly, listen to your body over time. Your symptoms never lie. Best wishes.Your inflammatory markers can all be normal and you can still have RA. Call
As though it needs to be said again, see a rheumy. You probably won't get anywhere until you do. Outside of rheumatology few doctors or nurses seem to have a clue about these things.
With back involvement, yes, you should look at ankylosing spondylitis. Also palindromic arthritis and reactive arthritis. There are other possibilities too, as others have named, all of them under the heading of rheumatology.
I have early RA, actually not officially diagnosed yet though the doc says we've ruled out everything else he can think of and is just waiting a while longer before giving it the label. But I'm taking the RA meds, which is the point. The thing is, none of my lab tests show anything pointing to RA or anything else. And I've had all the bloodwork. My doc says that's not uncommon. And that's the experience of many others on this board.
Don't let any doc, even a rheumy (and there are some bad ones out there as in any field) tell you that RA is diagnosed or managed based on blood tests. Blood tests, or "labs" are useful, but it's considered improper practice to use them as the final word.
A rheumatologist may use MRI, ultrasound, bone scan, or other diagnostics to help in the diagnosis since there's so much of your body involved.
It's frustrating to know, see, and feel that you're sick and have the appointed blood tests lie about it. Frustrating, but common.
Also, lab work tends to go from negative to positive for many people with rheumatoid disease. It may take months or a couple of years, but many who start out "negative" turn to "postive" with time. It's a marker of progressing disease, so it's not really something to look forward to even though you crave the validation.
And for quite a few, the blood work is always negative. It doesn't matter. It's not like a preganancy test, where that blood test tells it all. With RA-type disesase, with any autoimmune or complex long-term disease, a blood test is just one clue of many in the complicated mystery of diagnosis.
So try to forget about the blood work and make sure you're working with a doctor who doesn't believe solely in blood work either but who does all the appropriate other work up to find out what really is wrong. Any responsible rheumy--and most are, of course--will do that.
It will take time, but you will get to the bottom of this.
Like Hermsi85, your symptoms also remind me of Lyme disease.
I grew up in Connecticut not far from the town of Lyme - the diseases namesake - so we grew up with a greater awareness of it. In the Fall especially, we had to go thru "tick check" before we were allowed back in the house. LOL
A rheumatologist can diagnose Lyme Disease. Here's a Fact Sheet on Lyme from the American College Of Rheumatology: http://www.rheumatology.org/public/factsheets/lyme_new.asp?a ud=pat
Here's a link to the "Find A Rheumatologist" page from ACR: http://www.rheumatology.org/directory/geo.asp?aud=pat
Hang in there!
You need to get to a good rheumy and if that one tells you you don't have an auto-immune disease, go to another one. I am sorry to say - you have classic symptoms. Let us know what happens. You really need to be on N Saids. Good luck.
I had good success with OmegaXL