Newbie with RA

Theresa, I know exactly how you feel. My last job was a lot like yours but my superiors were not as kind. I take Cymbalta for depression & it also helps my aches. I take Ambien for sleep. It took me awhile to get the RA meds. that worked for me. When your meds. are right for you, you will start feeling better. This website and the Arthritis Foundation will give you some great info. There are lots of us that are in the same situation and we will be there to help each other. My prayers are with you.

Hi Theresa,

The first year is really hard - trying to sort out what works and what doesn't.  I have to ask - are you on both Humira and Enbrel?  Or did you try one, have a bad reaction, then try the second one (that's what happened to me).  I'd kind of be surprised if you went bang!  on 2 biologics at once, it would be difficult to decipher where any side effects (or good effects for that matter) were coming from. 

I taken Enbrel and Celebrex myself... for the last four years. 

I would say, that we can't talk to everyone about all the emotions we are going through, but you have nothing to be ashamed of in having a chronic illness.  We didn't create our own genes, and they contribute to the problem!  That said, there are some things we can do to avoid certain things that may aggravate the condition.  For some people, diet can increase or decrease pain.  Certain things increase the risk of getting RA (eating red meat, and smoking) in the first place - for me, eating red meat makes me feel worse, but that may not be true for all. I just mention it as a possibility. 

     In my first year, if my right hand/wrist came within 6 inches of anything, I was paranoid, it hurt so much.  I couldn't hide what was happening to me.  But I also hesitated to go on the heavy meds because "it's only my wrist."  The rheumatologist explained to me how fast damage could occur.  I reluctantly tried Remicade (couldn't take methotrex for other reasons), didn't like it/reaction, a couple months later started Enbrel, and mostly it's been good.  Sounds like your dr. is treating you aggressively and not waiting - that's what most of them try to do now, to avoid joint damage.  I've had some to wrist & ankle, and had surgery on my ankle (also on my other wrist for carpal tunnel, but that's mild compared to this other stuff!!)

    Would love to hear more from you, and help in any way I can.

P.S.  When you start to feel comfortable sharing the info about your condition, you might be surprised to find out what others might be dealing with -even if it's not the same as you!  I've had some wonderfully surprising conversations in the oddest places... I wear a splint on my wrist 24/7, and a woman who runs a fabric shop asked me about it, and we talked for 20 minutes - she had just been tested for RA, and had gone through a long period mis-diagnosed for another serious condition!

Ellen

I too hide my fears and pain a lot. Like you I don't want to  complain to  people. I did last night to a friend and after I got off the hone thought "what is she thinking about me?" It is only RA. Her mom is dying of cancer.  Many people on this site have talked about how lonely it can be. Which is what is great about this site. You can get on and see what other people are saying and how they are feeling and know you are not alone. I take Tylemol PM for sleeping and it seems to put me in a sleep mode where I feel a lot less pain. I do know that if I don't get a good nights sleep I will pay for it in pain the next morning. I askedmy doctor the affects of taking it every night and she ( and a couple other doctors) have told me it is fine. Plus she tests my blood often so she would be able to see any effects from it from that. hope you find this site and emotionally helpful as I do.

Hi Theresa,

My name is Laura and I seem to be in a similar situation.  I have been dealing with my pain for over 4 years, but was only recently diagnosed with RA and all at once I have one joint that is wore out.  I am still in shock.  How did this happen so quickly.  I have been hurting for a while, but didn't realize it was this bad.  So now I am faced with the decision of finger joint replacement or joint fusion.

I am terrible depressed about it, cry when I am alone and also don't really want to share with family and friends.  Don't want others to look at me as an invalid.....

Hi, I certainly understand your issues. I also was working full time until a recent firing (Thats a whole different story but very interesting).

The pain I feel from RA is unbearable at times. My Mom has it, minor compared to me. And she will laugh as I roll on the couch in pain cause it is difficult for her to process that not all RA is the same.

For me it actually feels like sharp stabbing during a flare, and all other times I feel like a rusty tin man with a constant and nagging level 5 pain each time I move. I even have noticed that I'm developing OCD like symptoms b.c I count out all the movements I need to make  in order to complete a task so that I make as few position changes as possible. 

Now don't get me wrong. I look like a sexy 25 yr old even though Im well past that age. I give credit to my youthful figure to my RA.. The pain keeps my stomach in knots so that I barely have an appetite. I have notice that I have fewer flares with a blander diet. So I eat oatmeal for breakfast lunch and dinner. I stay away from salt cause it causes more severe flare-ups for me. Tomatoes are off limits when I eat those I need to use my cane to walk. I love potatoes which are not recommended but I for some reason don't feel they affect me too much.

As far as pain management because I have allergies to aspirin and extreme side effects to most pain killers like I could never drive after taking one I'm a zombie I just stay away from them. And I'm too scared to take any of those "new fangled" drugs. My grandmother quickly developed some type of "water" on the lung disorder after a short time on one of them subsequently dieing from water on the lungs only 1 year later.

So.. My issue of being 30 something attractive and single is.... I'm usually in too much pain to naturally socialize. I'll go but, I can't hold a cup of wine b.c my wrists are achey or Im affraid I'll get a sharp pain in my chest and look like a goldfish drowning on the air at the table. All my woes are meger compared to many more serious issues facing the people you deal with on a daily basis however.. Thanks for listening

I understand how you feel. My name is Sheila and I have had RA for about 11 years now. I hate it. Some nights I sit by myself on the couch and wonder why in the world I have this horrible disease. I am currently on an iv and also give myself injections once a week. I still hurt though. Not as bad as I used to without the medicine. I am also on a pain medication. I also have fibromyalgia(spelling). So I feel a double wammy. Sometimes I can't even be touched by my sweet little grandkids. It breaks my heart that I don't feel like playing or even visiting them because I am in the bed not feeling well. Seems like I stay in the bed a lot. It is hard for people who don't have the disease to understand. My husband is wonderful. He takes good care of me and gets me the things I need. My children do the household work for me. I don't work anymore because of missing so much time. I was finally approved for disability. Well, thanks for listening and hope you feel better. God Bless you.

Especially with the keeping it to yourself part.  I do that as well- sure I will tell my Mom or Grandmother that i have hurt, but most other people just don't get it.  Some people are nice and tell me things like i can't imagine how you feel and some of them I believe and others I think are just saying it to shut me up.  I feel like if I really express myself that they will think I am just complainng or whining-which is what my boyfriend does.  He tells me he understands but then if I ask him to go to a doctor with me and he can't I get basically an anxiety attack, because I really don't want to go by myself and he had the nerve one time to tell me-it's just a stupid doctor's appt.  Yea-you can think it-he is a jerk but can also be loving if he wants to.  I just don't think people get that RA is so much more than pain from time to time-it has so man other side effects.I love to talk and vent, so this website has been helpful to at least read that I am really NOT alone in the way I feel and act at times.  Feel free to shoot me a msg anytime.  Hang in there-it's scary no doubt, but what choice do we have :)

Especially with the keeping it to yourself part.  I do that as well- sure I will tell my Mom or Grandmother that i have hurt, but most other people just don't get it.  Some people are nice and tell me things like i can't imagine how you feel and some of them I believe and others I think are just saying it to shut me up.  I feel like if I really express myself that they will think I am just complainng or whining-which is what my boyfriend does.  He tells me he understands but then if I ask him to go to a doctor with me and he can't I get basically an anxiety attack, because I really don't want to go by myself and he had the nerve one time to tell me-it's just a stupid doctor's appt.  Yea-you can think it-he is a jerk but can also be loving if he wants to.  I just don't think people get that RA is so much more than pain from time to time-it has so man other side effects.I love to talk and vent, so this website has been helpful to at least read that I am really NOT alone in the way I feel and act at times.  Feel free to shoot me a msg anytime.  Hang in there-it's scary no doubt, but what choice do we have :)