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I was diagnosed with RA last summer and am currently on plaquinil. I have RA in my hands, shoulders and feet. I'm 36 with 2 small kids (1.5 & 5yrs).
Living with RA has been a challenge and I find it difficult to communicate to my husband how debilitating it can be. We are a very active family and at first I thought the RA pain was just part of life when you do so much. I am was a distance runner and I also ride rode with a bike club. Last summer I had to stop running and riding due to the pain and I finally saw a dr.
The rheumatologist put me on plaquinil which has helped and I am now running short distances and riding with my family but as my activity has increased, so has my pain. I have also had to have a number of cortisone injections for joints in my fingers which isn't fun.
I'm just frustrated that I can't do what I want, that I'm distracted by pain when I should be having fun and that I have days where work is difficult due to hand mobility and discomfort.
It is what it is and I'll deal with it but I just wish my husband could understand better what I'm going through. He thinks I should just suck it up and carry on. I don't know how to get him to understand that this isn't a sprained ankle or pulled muscle. Rest, Ice, Compression and Elevation aren't going to fix this.
Welcome to the forum, lrs01.
I can emphathize with you because I face a similar situation with my daughter.
I too, used to be a get up and do stuff kinda girl, and when my pain started at around your age...I thought I was pushing my body too hard for too many years. I thoughht all the pain was a cummulative effect of years of hiking, swimming, canoeing, basketball, softball and having physically demanding jobs.
I was finally diagnosed and I thought it would all get better since I now knew what was wrong with me! WRONG! We can't seem to find a good mix of medications that will help me without hurting me in some other way. Prednisone really helps in high doses; but it has given me medication induced diabetes. I take 5 shots a day of 2 different insulins now.
So, anyhow...my daughter has said I'm not the same mom I used to be. She thought I was just being lazy on the days I just simply couldn't do things. She thought I asked her to take the caps off my bottles of juice to seek her attention. It was too much trouble for her to go to the drug store; because she thought I could do it myself. So she told me she didn't want to be my mom; I was supposed to be hers...and she left never to return or speak to me again. That was 2 years ago. Adding to her view that nothing was wrong with me was the fact that her fiancee's father has RA; which responded wonderfully to whatever he takes. She couldn't seem to understand that not all cases are alike and we all respond differently to treatment.
I would suggest you get your husband to read some of the posts here about how people suffer from the pain of RA and depression and fatigue and all of the other ailments that go along with RA. Perhaps that will enlighten him to how you are feeling, what is happening to your body and how hard it is on you emotionally. I wish I had known about all of this before my daughter decided I should "suck it up", as you say.
Hello lrs01,
Nice to meet you.
I am sorry to hear that you too have RA, especially since having such a young family to take care of and being an active family too. I am quite sure it has been a very frustrating and difficult time for you.
As for your husband not really understanding what is happening to you. It's not that he doesn't want to understand, it's he can't truly see all the pain and frustration you are going through. The RA meds are doing a pretty good job at covering it up as well as you are.
Your husband may need a gentle nudge toward taking a bit of time to read as much information he can on RA to kinda get the jest of living with any autoimmune disease, such as RA. If he hasn't already and if possible, ask him to go with you to your next visit to the RD and make sure he goes in with you when you see your doctor. Then ask your doctor what books on RA he would recomend for your husband to read. Also try to encourgae your husband to ask the doctor any questions he may have about RA. As hard as it is for you to understand what is happening to you and how you are going to manage your life around RA, you can be sure it is sometimes even harder for your husband to understand as well.
Blessing for you and your family.
(((Gentle Hugs)))
Welcome Irs01! Glad you found the forum, but sorry you have the need to be here. It IS very frustrating when you can't do what you want, I also used to be a long distance runner, so I can empathize with you. And it is difficult communicating with non-RA people because most of them think it's "just arthritis." I was diagnosed about 8 years ago, and it took a few years before my husband actually understood and could kind of comprehend what I was going through. Have you taken your husband to any of your RD appointments? That might be an eye opener for him if your RD explains what's happening to your body. I also gave my husband lot's of RA related links to read.
You mentioned your are only on Plaquenil. Has your RD discussed the possibility of starting a biologic type of medication? You might need something stronger if you're still needing cortisone injections in the joints. There's lot's of information on this site, go back through the archives and read what others have gone through and what medications they're on. The key is to find the right combo of medications that allow you to remain as active as possible, without causing further joint damage.
Good luck!
Yes, welcome lrs. You will find that genuine members here are very caring people who have been exactly where you are now, and who understand and will stand beside you as you work through your challenges.
The following is a link to a previous post made on this board for another member regarding family & friends etc "just not getting it" . (Please excuse me for the duplication, but my hands are bit stiff for typing much this morning). I hope you find it helpful. I certainly did, as did my family, and and I know others on here have as well.
Kiwilass22011-05-04 15:29:30up to the top
Lynn492011-05-05 08:42:19
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