Rheumatoid Arthritis Community

Dear earth_honey,

I'm going to give you some information that I hope will help. First of all, check out RAtv which is an excellent resource to learn more about Rheumatoid Arthritis. You can learn not only about getting diagnosed and working with your doctor, but about diet, exercise, and even RA in children. You can also meet real people like an exercise director, beauty queen, state representative, and even a black-belt winning grandmother—all dealing with RA and its challenges.

Since you mentioned work, take a look at this article on RA, Work and Disability . Also, this RA FAQ is often helpful for newly diagnosed people. This article talks about Rheumatoid Nodules , and also check out this article on Six Common Mistakes with RA.

Best wishes,

Byroney

Hi Earth_Honey,

I can definitely relate with you. Recently I was extremely down, frustrated and sad about dealing with the medications and their side effects. I was diagnosed six months ago and I'm now on my 3rd medication. I have found that almost all of the medications have scary side effects but I tell myself I have to keep trying. One of them is bound to work eventually, right?

Being patient and waiting for the results is hard, but I'm looking forward to the day when I will start feeling better and back to normal.

I hear a lot of people say "one day at a time" and I think they are right...it just takes time.

Take care,
LC

Have hope! I moved and had to switch Rheumatologists. My new one tested me for Vitamin D and I was very deficient - she added 50,000 IU weekly and 1200 mg. daily of Calcium and my exhaustion improved dramatically. Ask your Doctor to test for this. I know this is overwhelming but you will get through it. Once they get you on the right regimen, you will get your life back. The mtx can wipe you out as well, I take it at night instead of morning because it would tire me out. Night worked much better for me.

There is light at the end of the tunnel and it is not a train. It is the happy, healthy life you remember before RA - sometimes it takes a while for the mtx and meds to work, but once they do, you can live a pretty normal life. Most important, have a rheumatologist that answers your questions and concerns. I had one that wanted to put me on humira and I refused because the side effects were so bad. I didn't feel I needed to move to the DMARDS unless I had joint damage, which I don't. You have the right to control your treatment.

I grieved for the person I was before RA because it affected every aspect of my life. I was so angry and in denial that I just wanted to ignore all the meds and wish it all away. I think that is a normal response as is your distress. Once you feel in control of your treatment plan, your distress should lessen, I know mine did. I wish I didn't have RA but since I do, I've decided that I control it, it doesn't control me. I know reading the discussions can be scary but I learned a great deal about treatment that way.

Dear earth_honey, I was diagnosed in 1998, and have gone through 12 rough years, but I am still here at 59 yrs old, and doing better than ever. I hope that encourages you. You can get through this rough period. Just hang in there. I was so bad at first, I couldn't open a door, shake anyone's hand, pick up objects,etc. I just gave up and became very week. I became dependent on medications that had horrible side effects and damaged my liver. I became severely depressed and got on several anti depressents. I was a mess, and no one wanted to be around me. I felt like I had lost all control of my life, and I was helpless, and nobody cared. But after many years of this, I finally decided to take control of my life. I have stopped all medications because of the damage it was doing to my liver. Be advised, I am not recommending my actions to anyone, you should work with your doctor. But my rheumatologist is very pleased with how I am doing, though. I decided to handle my disease my way, finally. I have become a strict vegetarian, take vitamins and supplements, and exercise three days a week for atleast two hours. It's hard to get started, but once you get into the routine, it is not so hard, especially when you start seeing the great results. I am now medically retired and live alone with my dogs, so I know it is easier for me than someone who is working. But I did work hard for many years, and found I just couldn't do it anymore. I do volunteer a lot now, as long as I don't have to stand for long periods. I still tire easily and fight depression, but am handling it without medication, and my blood tests are finally coming back normal. I still let my doctors monitor me and advise me, but I make my own decisions about my health, and I am pleased with the results. I know that since you are new at this, you will go through many days of depression, fatigue, and pain before you find your routine, and find how best to deal with your diagnosis. Just try to remember that you are not alone, and there are many of us out there who understand exactly what you are going through. But it is not a death sentence. YOU CAN MAKE IT. I try to be thankful I am not dealing with cancer or alzheimers. At first, I just wanted to give up. I lost my career, my husband divorced me, my children grew up and moved away, and I lost my home and medical insurance. After a childhood of sexual and emotional abuse, and domestic violence, then this hit me. I can't tell you the times I just wanted to give up. But you have to reach down deep inside and find that little girl who needs you, (the now grown adult) to take care of her. You can't let her down, because everyone else has. You have to do it for her. If you can't do it for yourself, do it for that defenseless child inside you. They can't make it without your adult strength and fortitude. That's what gets me up everyday and gets me going. I have to do it for her..... So I'm thankful I can still keep going, and I make my body face what it has to deal with every day, and I stay thankful I can still move, even when it is painful. I vow to NEVER GIVE UP, and NEVER END UP IN A WHEELCHAIR. I WILL KEEP GOING!

I was diagnosed with RA in 2002 and have been on many different meds, had surgeries, shots, etc. So I understand your fatigue and distress. Based on my experiences, you need to get as much rest/sleep as possible. Pace yourself - i.e. at home I will work for awhile then rest awhile. I plan my activities around a rest/activity cycle. Working retail is a challenge, so my recommendation is buy the most comfortable pair of shoes you can afford - soak your feet when you get home. You will learn with time "how" to take care of your body.

All medicines have side effects; whether you will have side effects is up to your body. Everyone tolerates these meds differently. Once again, you will learn how your body responds. Don't get discouraged by reading all the information out there. The meds will take time to work too - you have to be patient. Work closely with your Dr.

RA is an awful chronic disease and I hate it, but I am realistic too. I have learned over the years how to take care of my body and work with my RA Dr. and the medicines. Has my life changed? Absolutely - there are things I can't do anymore, but I find other activities that I can do.

Take care, you are not alone. Thank goodness that RA Drs. have more medicines to choose from today.

Dearest earth_honey, I can completely understand where you are right now in your mental and physical state. I was diagnosed in Aug, 2010 (one day before my 32nd bday). Everything that you are reading is scary. The situation is scary, the unknown is scary. Surround yourself with people who support you. Rid yourself of stress because it just makes it worse.

There is a book called "Rheumatoid Arthritis: the first year. An essential guide for the newly diagnosed" Its written by a patient of RA. Its a very good read. Its good for people like us who are trying to find our way through the beginnin gof the storm.

As for working retail. Get some orthodics. They may help. They definitely helped me, but I don't work in retail.

Also, talk to a chronic illness therapist. A counselor. This is a big change to our lives. And believe me, its been a roller coaster for me. I've been mad, scared, sad, depression, and felt sorry for myself. I'm still fighting those things. But I do know that I am a fighter, and I will fight this along with my friends and family supporting me. And make sure you trust your dr. Its ok to get a 2nd opinion. This is your body, your life. Be your own medical advocate.

Stay strong earth_honey... we can do this.

I am also recently diagnosed with Rheumatoid Arthritis.
I am on the third medication..ieMethotrexate. I had to stop sulfasalazine and Hydroxycholoroquin because of Side effects.
I am also reading alot about the disease.
How I am fighting the disease is as follows:
I am taking time off from work, completely at present time.
I am resting almost ten to twelve hours a day.
I am taking two hours of bubble bath and doing all the range of motion exercises while I am in the Tub.
Then one hour of exercises after the bath...range of motion..if disease is very active and aerobic exercises....,walks,..while disease is little bit better.
I am drinking two to three litres of fluids a day...ie water, fruit juices, tea/coffee...more fruits/vegetables every day.
One should be taking foic acid the day after the Methotrexate for one day or it can be 5 days, depends, how your Doctor prescribes it.
Using almonds and walnuts in my daily routine as they are anti inflammotry.
Using Turmeric and ginger alot in my diet for the same reason.
Meditation at night as it releases endorphins in your system to give you positive strength to fight against the disease.

And thanking God that I did have normal Healthy 48yrs ad many of us dont have eother this much....
Take Cae of yourself the way one takes care of ones child....
Hajjra

I've had RA since 2003. Shots of methratrexate - one each week - helped me the most. Took Humira for a few years but stopped due to sinus problems. Had to quit work in 2005. Any side effects you may have from medicines are monitored by your doctor . This disease must be treated agressivly and early to help the most. Good luck. I only take mobic now and there is a lot of things I cannot do. Not the picture that I painted on retirement but I learned what I can and cannot do.

Officially I was diagnost 4 years ago, but can say Ive had the syptom for many years before then. Yes all the flare ups, the worst pain Ive ever had, the meds, etc.etc. For me though what I have faced most is infections. The immune system gets weaken and I get infections. Have dealt with 3 serious issues already. The 3rd one currently now, got a cold I cant get rid of. My ears are infected as well. I am on my 2nd antibiotic now, You have to stop all the RA drugs to allow the immune system to build back up while the others med cure the infections. So the story begins, while off the RA drug and the infection starts to clear up, all the symtoms of RA return. I havent seen to many people speak about this in these forum to much. As I read in these forums just take the pills and youll get better statements.

I am so glad to read your information, I have just started on this site and finding much help. I have been diagnosed with RA for 17yrs. Luckily I have done ok. Have been through all the meds. now on Methratrexate (five years) this winter I have had the worst time with colds, ended up with ear problems, lost my hearing just coming back now after 2mths, although still an irritant, had antibiotics (from GP) accupunture all over the counter meds. Steaming etc. etc. You are the second person I have read that ear problems are an issue. I shall now mention it to my rheumatologist maybe I need another change of medication.Hopefully there is some left for me to try. I have now learnt not to be so dismissive when I visit my Dr. I saw her just recently and casually said I had a cold, otherwise ok.

Henson12 you sound so incharge and in control of your life and your determination is to be admired. i was diagnosed with ra in the summer of 2010 and he added 7 meds to prevent progression of the disease. Not only that i also have rls and between all the drugs i take i feel like my life is no quality since im only 59. please tell me what you eat and what vitamins you take to replace the meds. EG.

It takes awhile for the drugs to work. I used Celebrex with great results. I've had RA since 2002 and initially had the exact same troubles that you are having. As the drs try different drugs you will eventually find something that works well. I ended up on Remicade. It is discouraging at first but IT WILL GET BETTER!!

I am a 55 year old female who was diagnosed about 3 years ago after having major swelling and pain in my knuckle joints of my hands, right more so than left (I am right handed). I work also and would make it through the day, come home, take something for pain and lay down with my hands hanging so that nothing touched them. Today I am on methotrexate and humira, folic acid (for the mouth and nose sores). I do not think about the side affects of the meds because it is not something under my control. I am FINALLY able to do activities in the evening (yoga really helps my major back and neck problems). I must wear shoes because of the foot problems that I have but if I am in the class I have already conquered half the battle. It's very important TO KEEP moving when you finally get to a level where fatigue is not as much of an issue (THAT DAY WILL COME FOR YOU ALSO). Good luck and keep on forging forward. Don't let this disease get the best of you.