Any advice from people that have had RA for a while?

By Vicky Gordon Saturday, January 09, 2010

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Hello, I am 24 years old and Diagnosed with RA 6-7 months ago. I have been a member of this group for about a month and have found it SOOO helpful, but I figured I would create a sharepost to get extra information about this "devil" disease! I am a nurse so luckily I have some medical knowledge but I work in GI so we do not see a lot of RA. I was diagnosed with sero-negative RA except I have a positive ANA, but all other labs were negative. My Rheumatologist is wonderful though and when I went to her she said I definetly have RA. I would have severe swelling,pain and redness in my hands and feet and she started me on treatment. Initially just plaquenil and prednisone and diclofenac, I had some response but not a lot. She then started me on Methotrexate orally 4 tabs a week but I could not handle it, I was getting very nauseated so she switched me to the injections and have done much better, but have only taken 2 injections and have not really seen much of a diffrence with my RA. BUT the hardest thing for me is I just got married a year and a half ago and my husband does not understand the pain and fatigue I have, he asks me to go do things and I tell him I don't feel good(especially after working a 9 hour day and keeping up the house) and he says I never feel good and I can't always use that as an excuse and it really upsets me because he doesn't understand and of course either all the meds or the RA has made me have zero sex drive and that has put a HUGE strain on our relationship. I just don't know how to handle this. I would really like some advice from some of you who have had RA and have gone through this.

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~Suzanne~

1/ 9/10 6:35pm

I'm so sorry to hear that you're going through this. I know exactly what your talking about. When I was married, my husband didn't understand anything about why I was always so tired and worse yet; why I never had a sex drive. I was always wiped out. I worked a very stressful job, kept the house immaculent, had supper ready every night, and spent time with my son and homework, etc.

The fatigue just kept getting worse, and my relationship really started to suffer. I can say for sure that my husband started to think the grass was greener on the other side, and I suspected he was finding other more energetic woman more appealing than the "old ragged out one" he had at home.

At that time, I had no idea it would end up being Sero-negative RA. I knew my grandmother (my dad's mom) had it pretty bad, but it never dawned on me that this was the beginning of my disease and symptoms.

That being said, our relationship finally fizzled out. I had to let him go. I had to let him find happiness somewhere else. I just couldn't keep up with the constant stress of being made to feel as if I should be pretending to "NOT" be exhausted. I ended the marriage, took my son and moved out west. That was 10 years ago. My husband remarried about a year after the divorce, and I remained single (by choice) In fact, I enjoyed being single.

I often thought about trying to meet someone who could be more understanding about my disease. Someone that could except me as I am. Someone very laid back and a bit older than I. But, I haven't stepped out to look! Just the memories of my ex-husband complaining about my tiredness, my fatigue, my aching joints and feet, and not feeling like going anywhere just goes through my mind. I don't think I could go through that again to be honest with you. It was just too stressful. It made me feel guilty. It made me feel lazy. It made me feel left out and useless.

I realize the old me was nothing like that at all. The real me was a thouroghbred horse in the starting gate, just ready to bolt out running full speed into most everything I did.

Not the case now...I'm laid back, I take things slow, I try to lead the most stress free life I can. Stress for me, is my worst enemy. It will start the RA in motion and isn't satisfied until I'm in a full blown flare! I have to go to bed around the same time each night, and I have to sleep about 11 hours to keep things in check.

It certainly has changed my life. For the most part, I'm dealing with things fairly well. Some days I can get down about the fact that I have as you said the "Devil" disease, but then I have to accept it. It's not so bad slowing down my life, it does give me time to smell the roses sort to speak. With my luck, I'll get pricked by the pretty roses and find out some other bad news *sigh*

At least you know your not the only one rowing in the boat! Just put a life jacket on and hang on! What else can we do? :-)

Vicky Gordon

1/ 9/10 7:04pm

WOW! sounds like you had it rough! Luckily we don't have any kids, and that is another thing, he is worried I won't be able to have kids because of the meds but I have explained to him we will and i have already talked to my rheumy about it. My husband does understand somewhat but still gets mad if I don't feel good or want to take it easy so I can save my energy up. I guess this is part of the disease so I probably really need to talk to my Dr. about it and maybe they have some magic pill out there to give you a sex drive LOL I am struggling to keep our marriage going good but it seems like I am just barely keeping my head above water. But maybe he will begin to understand a little more. I have also thought about having him come to a doctors appointment with me so she can explain to him the disease process and what i go through. I think he thinks I am just being lazy sometimes and maybe if he hears it from her he will believe it. Thanxs for the advice!

Sally

1/11/10 12:31am

Hi Vicky,

I am a nurse as well, and I was diagnosed with RA with 2 years ago. I have been married for 18 years. RA has been hard on our marriage- I am tired, sore, and expensive (doctor bills and medications especially). At first my husband did not understand what RA is all about- he thought it was simply osteoarthritis at first. It takes time for them to appreciate what RA can and does do to our bodies, and a lot of patience on our part to teach them about it.

My husband has become very supportive, especially lately when I have been dealing with complications. That did not happen overnight- it took a lot of time and education paired with a strong commitment to our relationship. Dealing your diagnosis so soon after your wedding will be a big challenge to you both- it will take time for both of you to work through it and find your way.

Everything in RA happens slowly (except for complications) so be sure to give yourself time to get the medications straightened out. Methotrexate takes weeks before you will notice the full benefits. If the methotrexate doesn't help enough, you may find significant improvement with a biologic. I felt much better after starting Enbrel- not only with the pain but fatigue as well. It is SO hard to be patient when you feel yucky, though! It is good for you both to know that brighter days ARE ahead- including less pain, more energy, and even a sex drive when you feel better!

Hang in there!

Vicky Gordon

1/11/10 6:46pm

Thank you so much for the words of encouragement you don't know how much it helps to know some people have gone through the same things and it DOES get better! I am just trying to take it one at a time!

Lene Andersen, Health Guide

1/11/10 11:53am

When you get the diagnosis of a chronic illness, you go through a grieving process where you mourn your loss of health, the old you and gradually work through your feelings. Your loved ones do, too. Watching someone you love having live in pain and illness can make you feel helpless and when you can do nothing about it, it makes you feel even more helpless and angry. As you know, men like to fix things and this is the ultimate "non-fixer". He is probably not angry at you, he's angry at your disease and just as you are undoubtedly having days where it's difficult for you to deal with emotionally, so does he. I would definitely recommend starting to include him in things like doctors appointments so he can begin to get an understanding about what the disease is and the impact it has.

I'm going to give you some links to posts that may be helpful. Check out a few of my Beginners Guides - one about love and sex and the other about the reactions of friends and family. Karen Lee Richards who writes for Chronic Paid site has written a brilliant letter to loved ones about what it's like being in pain. I would also suggest that you encourage your husband to check out MyRACentral, especially our area about the basics of RA and the section for the newly diagnosed that has posts on how to live well with RA, among them a post about the Spoon Theory, which begins to explain why your energy levels are lower than they were before. The more information you and he have, the better you are prepared to work together about this. I'd also suggest you pick up The First Year with Rheumatoid Arthritis (that link will take you to our review of the book and an interview with the author) - it's a fantastic resource for getting a handle on living with this disease and I think your husband could benefit from reading it, too.

Make sure you talk a lot - tell him how you feel, not just physically, but your feelings about having this disease, as well. Encourage him to talk about how he feels. You may benefit from seeing a couples counselor for a few sessions to give you a safe place to be very honest about your feelings and to help give the two of you the kind of coping skills that can become important in creating a strong marriage - chronic illness can be hard on relationships, but it can also help bring you closer.

Vicky Gordon

1/11/10 6:49pm

Thank you so much for the great information, I think we are going to sit down together and look at these websites tonight. I have decided I am taking him with me to my next appointment in march and we may start talking to our preacher about these problems and hope to work through them. Thanks again so much!

Lene Andersen, Health Guide

1/11/10 7:25pm

I just found an article about chronic pain and how it affects relationships - there were some good pointers in it.

You're on the right track - make it teamwork and talk to your minister. I'm sure it'll help.

Kirsten

1/14/10 11:36am

I agree comletely- my husband was a real jerk about things for about 6 months after I was diagnosed (we are both currently 27, and I was initially diagnosed the week after our wedding, in 2008). He didn't want to talk about it at all, and his opinion seemed to be "ok, you found out what it is, they gave you some pills, now be fixed." I kept slowly trying to ease him into my world by being as honest as I could without complaining (i.e., I can't bend over today, can you please put the towels in the dryer? My wrists hurt, will you please drain the pasta?). I think that having a more concrete idea of what was wrong and how he could help made it easier for him to adjust. He's now getting to a point where he's pretty understanding and helpful, and I am on a treatment plan that is making me feel at least 90% better most days, which puts be in a much nicer mood.

That being said, there was a time in the middle when I was incredibly angry with him and I didn't think that our relationship would make it. I was the sick one, and I was having to hold his hand and baby him through it all, and be extra nice even when I was hurting. We both still get really frustrated at times, but we're working on it. He works on being supportive and helpful, and I work with being patient about that fact that I am speaking a language that he will never understand.

NZippy1

1/12/10 4:26pm

Hi Vicky

I have RA. My main Dx though is severe chronic systemic Juvenile Rheuatoid Arthritis. Only 10% of kids who get JRA get the systemic kind. (its the worst and alot like Lupus.) I have OA also and have had JRA since 3. I am 37 now. I have had no remissions ever. All my joints are affected. I am on about 15 Rx daily, have had 15 surgeries, 10 orthopedic since 1998. My disease is very complicated, involved, and I have been very sick w/it and since 1997 I have been totally disabled by it. I also have NO Desire for sex either. Considering all the meds,physical limitations, and my history of stress fractutes, its normal, yet I feel bad for my husband. My husband though is extremely understanding. I think it helps that his job is very physically demanding and he's 47 and I am 38. It sounds like your husband could be more understanding. Maybe take him to your next rheumatology visit or explain it to him. You need a supportive network, something I always have had. Do other physical activities w/him. My husband and I Snuggle alot. We will be married 10yrs July 15 2010. I worry about my lack of libido alot. Its concerning. However, my husband is very understanding, though i was very sick when we became engaged. Your husband probably never saw you this sick and its real shock to him. Maybe think about counseling as a couple. You need his friendship and compassion more than anything else. If you need anything else, email me at NZippy1@gmail.com. I did a movie for the National Arthritis Foundation when I was 9 years old named "I am Krista." "I have arthritis." I have had it very rough-many, many top of the line immune suppressive meds, like Methotrexate (long time ago) worked for me for 12 years. Now I am on Aleve, Prednisone, Imuran, Enbrel, Forteo, Humatrope and many others. I have been on most medications out there, and more medical tests, surgeries and hospitalizations than one can imagine. You need a supportive network right now. See if you can get your doctor or an outside source to get him to understand better what you are going through.

NZippy1.

Vicky Gordon

1/12/10 8:27pm

WOW! You have been through a lot. I will def. take all of your advice and relay it on to my husband! Thanxs for all the information and I will email you with any more questions. I have been having a flare this week and really down in the dumps, due to all my medical problems we are also having financial problems so that doesn't make anything better, but i don't want to call my rheumy about my flare because I know she will increase my prednisone and I HATE that stuff and I can't hardly take anymore of it, I am just going to try and deal with it!

NZippy1

1/12/10 8:38pm

I have been on prednisone forever. From 3-8 I was on it everyday, then alternate day till I had huge flares again and went on 60-80mg daily. Sometimes you just have to bite the bullet and take it. I hate prednisone also, but at least its not expensive. 3 of my injectable meds are so expensive i qualified for copay assistance from different private foundations. With my disease if I flare enough my sedrate goes off the charts, say 140 and I become anemic and stop making blood. I have had both hips, both knees and my elbow replaced,then had revisions on all of them and stress fractures on all of them. Having a flare will cause your joints bad damage at the least. The joints I have left that are not replaced yet are all terribly bone on bone that they need to be replaced. But I only do replacements when my joints freeze because the surgeries have caused me to be admitted for sepsis (terrible infection) in between each surgery because of the immune suppressive meds I am on for my disease. My disease is more than just arthritis pain. If its not managed properly, I am a sick cookie. So, you may want to revisit your choice about not telling your rheumatologist about your flare. Once the damage is done, you can't always get it back. My joints are so bone on bone I can't do weights or any resistance exercises and have not been able to do for years. I use a walker to walk and a wheelchair w/a hip cushion which is my chair. My hips are so sensitive if I sit on a regular chair or couch i have terrible pain so my wheelchair is my Seat all the time. Have a nice evening.
NZippy1

Lisa

1/14/10 7:13pm

I was reading your comment and I noticed that you had an elbow replacement. I am 54 and my RA is very active. Was your elbow replacement successful? My range of motion is non existing and as I type away I have a lot of discomfort. I am just trying to decide if the surgery is worth it.

Any insight would be greatly appreciated.

Thanks

Lisa

NZippy1

1/14/10 9:07pm

My elbow replacement was done because my left elbow had froze. All my surgeries were done because they were needed. They were all tough but successful. Replacements were done because either my joint locked or froze or both and the revisions were all due to bone fractures. I had no choice. Only you can decide. I am in a different game altogehter because I have had severe systemic JRA since I was 3 and I am 37 now-very active w/immune suppressive meds and lots of meds and always top of the line meds. I had it all through my growth years so it has thrown a monkey wrench into my illness. I wish I had gotten it when I was older because I would have had all those normal growth years. Prednisone stunted my growth so I am only 4feet 8inches and that is w/growth hormone injections when I was younger. I am on growth hormone now again but its because the pituitary gland stopped working due to large doses of steroids due to many very serious flares. When I flare my sedrate can be off the charts say 140 or greater..So I am not only disabled since 1997 but my disease has to be managed or I become seriously anemic on top of it. Pain and fatigue are only 2 aspects I deal with. I have had many surgeries-15 to be exact, many many medical tests, and hospitalizations. My elbow surgery was tough but I only have range in my left arm to begin with. MY right arm does not go around my back at all. I have not rec'd the independence from the replacements that I had hoped for yet one cannot leave a frozen joint either. I had sepsis (severe infection) twice in between a couple of my revsion surgeries (due to stress fractures of my femur). I have RA now and OA, stomach issues and migraines. Yet I went to college graduated w/A BA in psychology, and am married. My husband and I live in the lower level w/my parents in their house. Even after all the surgeries I still need help w/all my activities of daily living. Everyones disease is very different. If you are not on many meds and I mean many you may have no problems at all. Hope this helps.

NZippy1

Lupita

1/23/10 8:49pm

I read your comment and I can relate with you. I have Rheumatoid Arthritis for the past 21 years and is not a good thing to have. I have it from my jaw to my toes. I already had jaw replacement.

What keeps me going is my faith in God, knowing that I am not alone and that he is with me through all this. Having support from your love one is very important also.

My husband and three children have been very supportive and that has made it easier on me.

Unfortunately, this disease only gets worse with the years, I get side effects from the medications. I recently had injectable Embrel and it almost kill me I had to quit my wonderful job and I have limitations. I feel exhausted all the time and depression is common.

Research every medicine you take and don't let your doctor force you to keep a treatment even if you don't want it anymore. It is your body and if you get side effects delegate with your doctor and try something better with less side effects or effects you can handle.

I try to have a positive attitude and no matter how sick I feel I get up, clean up the house a little bit, cook and count to 100 while I am doing this so I can handle it.

I get dressed, I don't stay in bed unless I have a flare up.

I don't sit on my pitty pot. my motto is I welcome arthritis as my friend and not as a disease and think " Arthritis you don't control me, I control you", otherwise it will take over my life.

When I feel pretty bad, I think about other people who are worse than me. I try to have a good attitude, otherwise it will eat me alive.

My best wishes to you.

scarred

2/ 4/10 12:31am

Hi, I feel bad for you and me, I am 50 years old and was dx with this devil at age 40, and I refused to believe it and did not take anything. Recently my Dr. put me on methotrexate, I have only taken it once because I am afraid of it. I to am a nurse, and I can understand what you are talking about regarding your husband, I use to have so much enegry and fun even when I was 40, now I feel like I am 100 years old. Now I am thinking about starting plaquerneal because it has less side effects.

Any advice from people that have had RA for a while?

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