Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

2,179 Members

16,355 Posts

0 Online

ReeDee43 09/11/2011

Hi, all. I'm new to RA and this group. I was dx April 13, 2011 and immediately put on MTX. It seems like I had a new joint pain after each weekly dose to a point of needing ankle surgery the following month. Well it all went downhill from there. I could no longer walk, put my clothes on, shower, etc. I eventually moved back in with my parents because my spouse worked long hours. I started getting better after I resumed the MTX but lost like 50lbs from dx to July. When I returned to my rheumy he said my ESR was up 20 points so he put me on Humira (I'm on my 4th injection). I feel better but both ankles and knees are in constant pain. I can get around but not nearly as much as I used to. I find myself depressed because I was a very active person until this happened. I traveled all over the US for my company now I can barely travel to the restroom. I was also a voluptious woman all of my life so I'm not too happy with all of the weight loss. BTW, I have iron defiency anemia and currently on 5 weekly injections of iron to get it under control. My questions are; Will my anemia get better with RA? Will I regain at least some weight? Will i ever reach a point that I can at least work again?

I'm so depressed and this is devasting to my family. I was the life of the party and always full of laughter. My parents keep coming by to check on me and my siblings keep crying thinking I'm going to die. I try to stay positive but this such a burden. And my mom (bless her heart) tells me after 43 years that her sister and one of her cousin's has Lupus and RA so I guess its in the genes. Please give me some encouraging words...I feel so hopeless right now. Thanks and god bless you all.

anitamaria12 09/11/2011

ReeDee43,

So sorry that you are going through this. When i was dx that was the worst I ever felt with the RA. I could barely walk, dress myself, use the bathroom, get in and out the car, turn the key to the ignition!- it was sooo rough. As soon as I started the biologic I began to gradually get better.I remember feeling like it couldn't get better, like what the hell is happening to me. But it does get better. We were just discussing on another thread that it is cyclical as well as the stages of grief for this disease. So yes it will get better, then it will be bad again, then good, and so on. Just focus on taking care of yourself. Also, I did lose weight as well but gained it back after prolonged use of prednisone. When you feel down just get on this site, it has helped me so much. Just the fact that people can relate to what I am going through helps so much.

deleted_user 09/11/2011

ReeDee,

I am sorry you need to be here, but don't think you are alone by any means. This disease attacks you on many levels and so you have a lot of work to do to straighten things out but you can see improvement once you can get to a place where the medication has had enough time to work and you can take it consistently.

I will give you my brief story as it is similar to yours. I have been dealing with RA for 11 months now and mine kept increasing in the joints affected after I started taking the medicine. I also was depressed by the extreme changes that happened in my life. I use to run 6miles a day and lifted weights. I lost a good bit of weight and had struggles with anemia as well. Once my doctor increased my mthx the anemia started improving although Idid continue to have problems with my joints. I am now taking mthx, Humira, plaquenil for the RA and Welbutrin for the depression, and Ambien for the sleep deprivation issues caused by the RA. I really resisted those last two, but I have to say I am able to function so much better most days. I am not yet ready to return to work as I am not certain anyone could rely on me and I don't know if I will ever be so active again, but i am coming to a place where I can accept me and I still have a lot to contribute.

So do you. Things have changed for certain, but just hang in there and take the meds you need and keep pushing for the best you you can have and find other ways to accomplish the things that are the most important to you and the rest let go of. This is the first day of the rest of your life and there is hope for healing. Hugs, Elizabeth

deleted_user 09/11/2011

So sorry you're going through this, glad you found this site, it's been a real lifeline for so many of us. The chronic pain and the massive changes this disease forces on us causes many of us to suffer from depression, please talk to your doctor, keep talking to us, and hang in there. Ree Dee and OT are right, you'll find that your feelings of depression come and go. God bless!

deleted_user 09/11/2011

Hi, ReeDee,

I'm sorry you are hurting so much right now. Please do not give up hope. I have been where you are and it is a dark place and lonely place. Try to think of getting better. There is light at the end of the tunnel. I know it is frustrating, but it takes a while for RA meds to work. Usually doctors prescribe prednisone as a "bridge" drug until the DMARDs start working. I just started Humira myself...Sept 6th. I will take my second shot on the 20th. So far, I can tell that my fatigue level is not quite as bad. Not a huge change, but a welcome one, and one that I definitely notice. I have a friend who was confined to bed until she started taking Humira. She is now working and enjoying her life. She still has some bad times, but overall, it has been a miracle drug for her. And if one biologic doesn't work, there are others to try. Hang in there, sweetie. We underdstand, so come here and vent or share whatever you want to whenever you want to.

Blessings,
V

Christine26 09/13/2011

Hi ReeDee, sorry you are having a difficult time. Hopefully you will get better. Are you on disability at this point? I think it was high time you started a biologic. Hope it helps. That was the first one I started and quickly went through several as they stopped working for me. I am on Cimzia now. I still have pain even though I am on DMards and pain meds too (Tramadol). I was anemic all my life, but then got RA and now my anemia is no longer an issue. The weight gain will come. Are you eating or does the pain take your appetite away? Are you avoiding foods that can trigger not feeling well such as tomatoes, white potatoes, white flour, white rice? Foods play a part in this RA thing. I have noticed less inflammation since the nutritionist doctor has put me on a revite diet to clean out my gut. Try eating small frequent meal or have a sha ke in between meals or ensure.

Try not to think about dying, think about living and everything you have to live for. Hopelessness is for the weak. You are strong. Try to keep your chin up and a positive attitude. Always know things could be worse. Many hugs to you. Christine

AdrianaIna 09/13/2011

Other than waiting for the drugs to work, see what you can do with diet. I am reading a book called "Conquering Arthritis" and the author has a lot to say about food, lifestyle, etc. Her name is Barbara Allan. Not everyone can link their illness to diet or food sensitivities, or have a clear-cut path to health, but what she says makes a lot of sense. The good news about using diet and vitamin supplements is that you have nothing to lose. I have found that certain food exacerbate my symptoms. I have also found acupuncture to help with sleep and pain. Try different things; see what works. It will take time and patience. I am working on it myself!

ReeDee43 09/13/2011

Thank all of you for your support and encouraging words. It's good to know that I won't be in this place forever. I know so little about this disease so I'm willing to follow any advise to make it better.
Also, my rheumy kind of creeps me out as he has a folder on his computer labeled "deceased". Not encouraging at all. My PD asked me to take a liver panel for her today. I thought my rheumy was checking on this but apparently not. I'm seriously considering a new rheumy since he is not the one that dx the RA. I've been seeing him since 2009 and never once has he checked the RA factor. He just kept scheduling me to see him and I often wondered why I was there. I've been having severe knee problems since 09 and that is why my PD referred me to him. I can't help but to think he almost waited for the damage to occur. He was slow in adding the biologic too, he now claims my RA is agressive and I have to take Humira once a week versus biweekly. Should I look into another rheumy or wait him out?

deleted_user 09/13/2011

Hello and welcome. I hope you find this group as encouraging as I have. Hang in there for there r many ups n downs to RA but life van get better once u get your RA under control if you aren't comfortable with your Rheumy you should look into changing. It's important to have one you have confidence in. Does he have that folder on desk all the time or maybe it was there because of family request of records while yes RA can affect areas of the body that are dangerous n at times deadly RA it's self to my knowledge deadly so get on meds as soon as u can hang in there put a smile on your face n know there are people from all over the world in this group who care n who can understand because we r also going thru these symptoms God Bless. Ann

deleted_user 09/13/2011

Reedee, Welcome! Yes eventually things should quiet down. But first you need to get your RA under control and that will take time and patience because it is thru trial and error with drugs. When I was diagnosed back in 1997 I couldn't dress myself, bearly could walk etc ( like you) and today I lead a fairly active life which includes 5 days of excercise a week. So yes, there is hope! I am not sure if the anemia has to do with the RA or not, something either someone else can answer, but best to talk to your doctor. I cherish weight lss so can't help you on that front either. I can tell you though that many RA drugs cause weight gain. Good luck!

Lifeis2short 09/13/2011

ReeDee,
Hi! Just saw your post and wanted to say I hope that your feeling better today! I would check out a new Rheumy too. I was just diagnosed a little over a year ago and am up to infusions (Remicade). This site offers a lot of support for us struggling with pain, frustration, anger and people who just don't understand. Be blessed and hang in there!

Join the Conversation