Hi there.
I am 30 yrs old. For over two years now I have been running low grade fevers with no known cause, I also would get this horrible stabbing pain in my right upper abdomen (kind of where the gallbladder is) they ran numerous tests on me and took out my gallbladder yet I would still get this pain in that area. Well eventually I gave up and stopped trying to figure out what it was.
Well 3 months ago I started getting what I thought was trigger thumb in my right hand. It really hurt but I didn't pay it any attention. Then 2 weeks ago I woke up and both hands were KILLING me! Mainly the bases of my thumbs as well as pains in my joints along my middle fingers. I also experienced the same horrible pain in both of my feet - in the big toes and little ones. Over the past two weeks whenever I wake up I can guarantee that my joints in both hands will hurt as well as various joints in my body (either my elbows, knees, toes etc). It is so painful I can't begin to explain it. My hands are even swelling up and are very stiff.
I went to my doctor and he thinks it's RA. He told me to make an appt. with a RD and right now I'm waiting on them to call me to set one up. I have been getting worse, everyday I just want to cry I hurt and it's never the same joints - each day it changes. Like one morning it will be the thumbs and the index fingers, then the next day it will be my toes and my pinkie fingers, wrists etc. Yesterday I was so scared and running a 100.00 temp so I went to the ER. The dr thinks it's RA or Lupus and was kind enough to order tests not normally done in the ER such as a test for Lupus, Parvo etc. I will not know those results until next week though. He said that my blood work looked perfect - no infection or anything like that. So he ruled out it being an infection and highly believes it's autoimmune, especially with the fevers and the sudden onset. When you touch the joints in my fingers/wrists it hurts and you can see redness.
I don't know what else it could be and I'm really scared. i'm always tired and feeling run down as well.
Also I don't know if this means anything but - I was in the hospital once and a dr came in and talked with me about my pain in the abdomen. She said that maybe I have RA. She said this because my pancreas has numerous calcifications in it, as well as some in my liver, and in other places in my abdomen. I also have a nodule in my right lung.
I apologize for this being so long - I'm just scared. I'm even dealing with a lot of pain just typing this :(
hi wonderstruck sorry to see you have this going on.. i hope your bloodwork
can shed some light on it. and you can start some treatment.. Boney
Don't be scared. It's good you've already had bloodwork started, and I'm assuming that you are going to see the rheumetologist soon. I think the most important thing you can do is educate yourself. Some doctors are more thorough than others and aggressive than others. If you are armed with knowledge you can push them when they are being complacent.
Usually the first blood test for lupus is the ANA, and the first one for RA is the RF. If either comes back positive, the rheumetologist should then order more disease specific tests such as the CCP for RA.
The rheumetologist will take your history, examine for swellings, fever etc. Some of us have been diagnosed quickly, some not. The most important thing is to start meds. You don't necessarily have to have the RA dx for that. They will many times start the meds anyway. Try not to be afraid of the meds. I felt relief within 2 weeks of starting methotrexate (I had been on plaquinel for a month as well).
Good luck.
Welcome Wonderstruck,
Try not to be scared- things will get better. We are all here for you
Hi and Welcome Wonder to the forum. So sorry that you had to seek us out, but am glad you're here. You should have some answers soon. The first thing we learn with any auto-immune disease is patience. Did your primary doctor prescribe anything for inflammation or pain? LindyHi. Well yes, my doctor did prescribe me 50 10mg hydrocodone pills. He did this so that I could manage the pain while waiting for the appt with the RD. But the RD hasn't contacted me yet. I was told that he will review my chart and if he DECIDES he wants to see me, the office will contact me to set up an appt. That scares me a bit because what if he decides he doesn't want to see me? :(
Also I'm scared that my regular Dr wont prescribe me anymore. The problem is that the pain is *so* bad that even a 10 mg vidcodin doesn't help all that much. He prescribed me them on Friday and that weekend my hands swelled up so bad I had to take my wedding ring off and my pain was so bad I was curled up in bed crying all weekend. I couldn't understand why such a strong pain pill wasn't helping. I was scared. Well I went to see him Monday due to the hand swelling and the pain being so bad and he said his clinic doesn't prescribe anything higher than vicodin 10 so he said he would also have me take tramadol with it. And that has definitely helped. I'm just scared that what if on friday (that's when I run out) he doesn't write me anymore? It's scary to actually have to fear that but that is how bad I'm hurting!! It's every day.
I woke up this morning and started to cry because the minute I opened my eyes I felt new pains in my joints - they were different then the pains I had yesterday (they were in different spots). It's like I can't get a break and it has me so worried. I don't know if this is going to go away but so far it isn't and it's just getting worse. So this is generating quite a bit of fear in me about whether the doc will give me more medicine this coming Friday.
Hi Wonderstruck...welcome!Wonderstruck,
I understand your fear and know that the pain can really make it all the more difficult.
I would suggest you call the RD, tell him you are in considerable pain and ask if he could make an appointment for you soon.
If you can tolerate it, try some naproxen (Aleve) after you eat something. Keep the dose to standard for now. It can help ease the inflammation. Hydrocodone doesn't do anything for that. Or call the doctor and ask for something for the inflammation.
Welcome to the board. I hope RA isn't the case for you, but if it is, you are in the right place for advice! These guys and gals are great.
Pain stinks anyway you look at it. I find heat helps relieve some of that "end of the day" pain I get...at the end of the day!! I have a heated throw that is wonderful. I'm wrapped in it now! Taking a hot bath/shower is helpful to loosten up those stiff joints.
I hope you get some answers soon. And don't wait for that RD to call you...call his office first thing tomorrow morning and tell them you need to see someone soon. It took me 6 weeks to get an appointment with a RD and he cancelled on me. I had to wait another 6 weeks to see another. (I'm not trying to scare you, I'm just warning you that they aren't always easy to get into their offices.)
Good luck to you
Hi Wonderstruck -
Sorry to disagree with the ER docs - but I believe ALL these AI diseases are infections. If you felt you had an infection via the fever etc. check out
www.roadback.org for info on treating these diseases with antibiotics. A few of on on AI use Minocin and are quite happy with the result.
Hugs,
Pip
Wonder, you need an appt. immediately with an RD. Call your primary on Monday and ask to speak or have your primary call you back. Tell him you want him or his office nurse to call the RD and set up an appt. for you. The pain is too bad for you to wait. How long has it been since you requested the appt. with the RD's office? Call them. You have to push to be seen and it's ok to do that. You're the one in pain and can't do your daily activities. You may not have RA but you're already 3 months plus into being symptomatic. Also, ask you primary about a steroid dose pack. Lindy. I have sever rheumatoid arthritis, and am still living the good life, good luck with yours. Enjoy.
LEV
P.S.
It will be even better if I find the "fountain of youth". I have found a help for the skin, but need the "fountain of youth" for my inside, if you know what I mean and if you are old enough you do know what I mean.
LEV
Welcome to the forum. Sorry you are scared and hurting. I hope you get relief soon. It may not seem like it now but hopefully help is just around the corner. Remember we are here for you. I wish you the best of luck and hope your pain gets under control soon.Hi Wonder, I am new to this forum as well. I was dx with RA last year when I was 33. I wanted to reply because my mouth fell open as I was reading your post....you sound a lot like me. Mine began in my feet but I was dx with mortons neuroma and they almost did surgery. shorly after that my hands (mainly middle fingers) began swelling and hurting and I had to remove my wedding ring. I went to my family doctor and he mentioned RA but then dismissed it without any tests.....said he didn't want to go there just yet. I went home and a few months later I began hurting in most of my joints. I lived with the worsening pain for six months trying to convince myself that it was going to go away. I got to the point that I could no longer stand in the bathroom and get ready in the morning without taking several breaks because of the pain and exaustion. My elbows hurt so bad throught the day that I was in tears. My ankles and feet would hurt so bad when I got out of bed in the morning it was all I could do to stand up. I finally went back to my same family doctor and showed him my hands....he couldn't deny they swelling and nodules on my fingers. He did the blood tests for RA and sent me home with no information for several days. I finally got the call that all of my blood tests were VERY positive for RA and he sent me to my rheumy. I love my rheumy. Make sure you get a good one because you will be with him/her for the rest of your life. I had to wait a few weeks to get in and I was scared to death because I didn't know ANYTHING about this. My rheumy calmed my fears and started me on Arava. He told me that my RA factor was VERY VERY high and the test that indicated progression was very strong so my disease will likely progress strongly even with treatment. The arava worked for a while but is no longer working so next month we will re-evalute. I'm sorry for the long post but I wanted to let you know your not alone and don't be scared. If you find the right dr and treatment you will will begin to feel better.
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