I am new, my name is Shirley | Arthritis Information

I have a son and daughter both adults now , I have been married to my DH for 25 years. I am 48. I no longer work partly due to RA . How do you all cope with daily activities when you hurt more than other days. Do you ever feel cut off from everyone else in your circle of family and friends because of the effects of the RA.

 

Thank you to everyone who answers my questions

I really can't help much with your questions but just wanted to say 'hi'.  Others will be along who can help more than I.

 

Hugs,

 

Pip

 

I'm a long timer too.. and I take MTX,enbrel and NSAID.  With that we've reduced many of my issues and symptoms, but I am looking for that brass ring!!  I'm hoping to get there someday!!

 

I am very lucky to have a job what avails me alot of time off for time served  Hi Shirley, Hi Shirley!

Welcome to the board.  I was on Enbrel for quite some time and it worked for me in the beginning.  I had to stop it several times secondary to upper respiratory infections.  Each time I would start it again, it seemed to lose its effectiveness.  I was also sick with bronchitis and URI a lot! 

As for isolation, I think we all go thru some form of that at some point in our journey.  I work really hard at being "normal".  Sometimes I'm successful, sometimes I'm not.  I remember that my body tells me what I can and can't do.  I'm pretty lucky in that I can still work and function for the most part.  I also think lower stress, eating well and exercising are key in feeling well.  It is hard to move when we don't feel good, but it is so very important to at least walk or do some range of motion exercises to keep things moving!

Good luck and keep us posted.

PhatsIt is hard when others around you don't understand your plight. You don't want to complain but you want people to understand you. You may be grouchy because of the pain and lack of sleep. You may need help opening doors or doing other minor physical activity. Maybe you just want your husband to help you out more.

I feel pretty good now but I remember what it was like. It's easy to get frustrated and end up in a pool of self pity (not saying that is how you are but I have certainly been there).

Pick a time to privately talk to the people most important to you and explain your situation. This will have varying degrees of effectiveness as most will forget but I think it is really all you can do.

It also sound like Enbrel am MTX are no longer working for you. Maybe it is time for a change.
This is a nice place, thanks guys. I am due to see my RD next week to talk about starting a different biologic. Hi Shirley and welcome.  I've had RA for almost 3 years and was on Enbrel/mtx in the beginning, but it never really worked for me.  So far I haven't really found the right treatment, and so I am on disability now.

 

As far as coping with activities, it took me awhile to accept that there were things I couldn't do, and things I could do if only I'd modify how much I did and how much help I received.   For example, if I want to go shopping at the mall once in awhile, I can either bring my electric scooter (which I use only for long walking situations) or I can walk, but I will have to sit on benches every other 5-10 minutes and I won't be able to stay very long.

 

Sometimes I do feel cut off from my family and friends either because I'm not up to doing the activities they are, or because I don't always want to be complaining.  Fortunately my family and friends understand my conditions, so it's not that I have to convince them.

 

If you are going to see RD next week about starting a different biologic, you might want to read up on the different ones (if you haven't already) to know what questions you want to ask.  For example, if he recommends an infusion med, you might want to ask where you have to go to get the infusion (doctor's office, hospital, etc) or if it can be done at home after the first time (I have a visiting nurse who does them).  Good luck with your appointment.

Hi Shirley,

just wanted to say hi and welcome also.

I did okay on the enbrel for a short time of 9 monhs but stayed on it for 4 years. scared to be without anything at all.

i don't want to give to much of a history because I haven't found prolonged relief yet.  I have had ra for 14 years.

I think I have been on all of the biologics, remicade, enbrel, humira, kineret, orencia, and now rituxan.  the is wanting to give me another round of the rituxan because there is still too much inflammation and this is really how it has been for 14 years, too much inflammation.

but I would do as you are planning and ask for something else. they have another new med on the scene.  I am planning to ask about it.  I have to find out more about it first. so that's good that you have so many options.  Some people say that remicade is their miracle drug. and the commercials for orencia look promosing so maybe it is helpful to somebody but for me I received about 30% relief then they took me off saying it caused more harm than good.

there are wide range of pain meds available. some narcotics. I was not able to stomach them but some do well on them. other than that eating healthily, staying active, plenty of rest and taking little breaks when the body is in pain is the best thing. just listening to your body.  I wish you the best.

take care.Welcome Shirley - I'm 49 with two adult children, one married and one at college and have been married for 28 years, so our family is somewhat similar.   Hi Shirley.  I'm 48 with two grown children as well.  They both live out of state (the youngest is in the Navy), and I raised them pretty much on my own.  I was diagnosed with RA when they were 9 and 15 years of age.  I was determined to not let my health issues get in the way of bringing them up, and they were great motivators!  I was on various NSAIDs and mtx for 9 years, which didn't help, and only made me nausiated and fatigued.  I re-married 3 years ago and started enbrel shortly thereafter, and it has been my miracle!  I wish it could be for everyone, but as others have pointed out, some medications work for some and not for others.  If you have an RD who listens and is willing to treat your illness aggressively, then you have every chance of being fully functional with your pain "controlled", if not alleviated.  It's hard for me to remember sometimes that enbrel is not a "cure", because I forget sometimes I have RA, I feel so good.  But then I get a URI or the flu and have to go off of it and I am very quickly reminded that it still lurks.  Hi Shirley, Welcome Shirley.

It was suggested I use Enbrel early in my DX but then my situation improved and it has been put on the back burner.

Best of luck to you!
Hello, Shirley, and welcome! It was quite helpful to me and I hope it is as useful to you.