Print out what you've written above and take it with you to your doc so they can read everything that you're experiencing. If the doc won't listen, get another doctor. You should not be hurting this severely, but everyone's disease course is different.

As for as the girls at work-- they should be shot. How DARE anyone make fun of someone else's pain. May they experience it someday so they can learn compassion.

Good luck and keep us posted!

Thanks! I'm trying to understand it from their prospective. It's only two girls and their childish but it still hurts. I didn't know you could get this at my age and It seems here lately like I'm always hurting. I dont say anything but I'm sure they can tell because sometimes after sitting for a while I can hardly get up. If someone barely hits my arm it really hurts bad. I know these auto immune dx can sometimes be more them one but I wonder if thats the RA or not. I really don't know. This is all new to me. I've had this for years but neverto this point. I have knots or bumps under my skin on my arms. It's all really scary to me.

I agree with renplus! You need to get a different Doctor and one who has been working with RA for a long time! People with RA can have other autoimmune disorders as well as RA. I would read as much about RA that you can. Be really informed and fight for what you need! I hope you feel better soon! My prayer is with you!

hi Liv,
Have you tried other medications? You don't mention it here- why are you not on methotrexate? The generally accepted current thinking with RA is that it's a good idea to bring out the "big guns" right away, to start aggressive treatment, to get the inflammation under control and prevent permanent joint damage. Methotrexate is the usual first choice, and many people add a biologic drug like Enbrel or Humira as a next step, if the methotrexate alone isn't enough. If you have a very old-fashioned rheumatologist who just isn't current in his thinking, it's time to get a second opinion.
You also mention cortisone shots, but not prednisone. Cortisone shots are a great way to get pain and swelling under control in a single joint, but when you're having an all-over flare, you might need to consider a short course of prednisone. Prednisone is dangerous and shouldn't be taken long-term, but sometimes the benefit is worth the risk of taking it short-term.
Your questions about whether it should be hurting this bad are totally normal! There are lots of questions on here from other people wondering if they're going crazy! You're not going crazy. RA really does suck this bad, and it does cause terrible pain when it's uncontrolled. That said, if the pain you're having is mostly in your muscles as opposed to the joints themselves, it might be something else causing that, maybe fibromyalgia, which is common to have along with RA. There can also sometimes be severe pain when a joint swells an impinges a nerve, especially in the wrist or elbow. That kind of pain feels hot, burning, or like an electric shock, and there are different medications to help with it. A good rheumatologist should be able to help you sort all this out.
I'm glad you found this board- it's a great way to connect with people who can relate. (I'm 30, and I work full time too.)
Caren

I am newly diagnosed since november but have already tried methotrextrate injections with planiquil daily. didn't touch the random swelling, redness and pain. I was put on weekly embrel injections 4 wks ago and I am feeling much better. I am still dealing with continued pain but the swelling in so much better and the fatigue has greatly improved. I would say you need different medication. My rheumy said celebrex is like taking nothing. Discuss better options with your physician. Yes, in the beginning I felt like I was going crazy. I am still dealing with the daily RA which I hope improves with embrel.

Wow! This thread brings up so much! First, Livloveslife, I am sorry that you have to deal with this; RA is a struggle for all of us. I am glad you have found this website and are posting. I understand what you are going through. When I was diagnosed, I was already on celebrex and the rheumatologist continued me on that, added plaquenil and prednisone. After 6 months of no results from the plaquenil, I was switched to methotrexate, and the doctor slowly added oral dosages, and then switched to methotrexate by injection. This took another year, and finally he added Humira (a biologic). I am about 3 months into it and am feeling better than I have in a long time. I still experience swelling and pain. My point is that my RA doc is conservative. It has been hard waiting for results from the medication to work. The medications take time for your body to show a response. I also have pain meds to use when I need it. By the way, my pain increases as the day goes on and is worse at night.

I also was diagnosed with secondary fibromyalgia and experience incredible pain if I am touched lightly. I was put on Savella with a wonderful response for several months. I have experienced an increase in blood pressure which is a common side effect. So currently I am weaning down with it, and at half strength, the blood pressure has started coming down. The Savella was not only helpful with the muscles but with the mental health part of the puzzle. I notice your feeling of fear of loss and uselessness; depression is so common with RA! I did go through the loss of my job, but was successful at getting social security disability (but I am 57). This @^&**((&%+# disease affects every aspect of our lives!

For Caren28: You mention the pain that is hot, burning and feels like an electric shock, can you add to this? I asked my RA doc about the electric shock type of pain in my feet and he did not really know much about it. He mentioned it is neurological, but had no other input.

I am so sorry your co-workers are treating you poorly! There is absolutely no excuse for this!

Hoping you have a good appointment tomorrow! -daizy8

Hope your appt goes well today. You should ask your Rheumatologist about Stills disease/ that is RA but a worse form. Also ask about adding biologics to the mix of medications?

So sorry, I remember hurting like that and unless you go thru it you don't understand.

It sound like you have a severe case, I did and my rheumy said putting me on Celebrex and Plaquinel was like giving baby aspirin to an adult with a migraine, it won't touch it. He put me right on MTX and prednisone and Enbrel shortly after that, this has given me blessed relief and while I still can't stand or walk long and my hands get achey I am so much better than I was. I appreciate a rheumy being conservative and not starting you off on the "big guns" right off the bat, but sometimes it's necessary. I went thru 3 rheumys so don't be afraid to switch although sometimes the thought of the energy needed to do that will stop you in your tracks.
suera

I am so sorry that you are in such pain. We all know what you are going through and our compassion knows no boundaries. I pray the pain starts to abate for you. I also hope your children are able to help in small ways.... I can't imagine having to deal with raising children (mine are all grown).. with RA. God bless you!
As for those poor excuses of co-workers... as Johnny Carson used to say; "May the fleas of a thousand camels infest their amrpits!"

*armpits... lol

Thnak you all sooo much for all your responses! It's so much better talking to people that KNOW what your going through! everyone helps out sooo much with their replys! I feel better know I have people to talk to! I also feel guilty because my grandmother and mother both have it and I use to think to myself...are they insane? You'd barely touch them and they'd cry out. Now I know myself. Some of these responses sound very familiar! I have been having flares for years but never knew what it was. I never knew you could be yound and have this. I had a positive ANA 3 times when I was sent to my first Rheumatologist. He treated me like a dog (first though it was Lupus because nothing else really showed up at that point)He blew me off and told me everything was normal. I work for a group of 52 doctors and one time I was having a flare and i had huge sores in my mouth and a low grade fever. I asked one of the ENT's to look in my mouth at this huge mouth sore because his specialty is head and neck CA. He looked at me and said, do you have an auto immune dx? I said, I have no idea I got blown off. He told me to go to another doctor but didn't know any in that field. Years later, I went to a different one...same thing but worse. This guy actually laughed at the idea that anything was wrong and said, no ffense to your doctors but they hve no idea what their talking about. I went to the car and cried. I never thought about it again until this flare in October got so bad by November that I could barely get out of bed. Thats when they put my in the hospital and I have the doctor I have now. I have only been seeing him since November. He just keeps telling me it takes time. He did tell me that he thinks I have Fibro along with the RA. He gave me a new medicine to take along with the other two(in answer to the other question no these meds are all they've given me) He told me that he wanted to put me on Cymbalta because they made it for muscluar and bone pain along with fibromyalgia and they determined after making it that it helps depression but that he wasn't giving it to me for that only for the pain. I took the first pill of the new medicine yesterday and had a HORRIBLE reaction. LOL! I have never been allergic or had problems with medicine before but this was tramatic! I was one of the rare few that had this! Figures...my luck! I took the pill at about 9:30 and went to work after my appt. with in an hour or so, I had the shakes, gitters, and had like a panicky feeling. My friend told me that it would pass after a few days and to eat something. It passed for a bit until about 7:30 last night and it started again! I was literally having like a manic type panic attack. I remand calm because I have to with children but I tried everything. Eating, drinking water...finally I called poison control and They said that was a rare side effect but that two other ppl had had the same thing. My heart rate was 140! I was like is there anything I can do? She said it was 14-24 hrs to get out of my system but that I showed start getting better and to drink water. I prayed every prayer I knew and in about 45 mins it passed and I was finally able to sleep. I still feel funny today but better. I will NEVER take that again...EVER! That was the scarest thing ever! I'm going to stick to praying and hopefully this flare will pass! It's been going on since October so it has to let up soon! They told me that I also have mono so I'm assuming that's playing a huge part. Thank you again for everyones support! It means the world!

also, Does anyone know what Vit D has to do with this? Mine has been critically low twice now that I know of and he put me on 50,000 units of Vitamin D that can only be taken for 6 weeks then back to normal dose. I asked him does this come from the RA and he said no but it can cause severe bod pain to be this low. He's very dry. Does anyone know why Vitamin D is low or what its caused from? I know the obvious but to be critically low? I'm lost on that one

My rheumy has never checked my Vit D. My GP asked if he did and I said no, she couldn't believe that. I don't know if it's from RA or the meds but mine was very low and she put me o the 50M supplement too, not that I feel any different one way or the other.

I'm going to have to do some checking on this Vitamin D thing. I wonder how it correlates.

Vitamin D is very complicated. You can get it from food, and your body can also manufacture it tiself if you get enough sunshine. Most people don't eat enough of the foods its in (mostly dark leafy greens), so most of us should take a supplement unless you live in a really sunny area. I live in Seattle and almost everyone I know takes a supplement. I take 2000IU per day, and my blood level of it has slowly risen. It was so low it was undetectable the first time I was checked.

For daizy- Nerve pain happens most often when a nerve is being pinched. That can happen either in your spine or down in a joint. Carpal tunnel syndrome is a type of nerve pain. There are other things that can cause nerve pain too, like diabetic neuropathy. It's a hot, burning, tingling, electrical kind of pain. Opiate drugs like vicodin usually don't help much, but newer drugs like Neurontin or Lyrica sometimes do. I know all about this because I had a spinal injury that left me with severe nerve pain, and I take a high dose of Lyrica to manage it. I have also had some nerve pain in my arm, caused by swelling in my elbow.