how did you cope early on? | Arthritis Information

 

I saw my rheumy again today. I am going every 6 weeks. Is that the normal time frame? How long until I can spread the visits out? I am now on plaquenil and celebrex. I've just recently been diagnosed and other meds have been ineffective. I'm still so tired all of the time. Will meds help that? I am having to force myself to get out of bed each morning and get things done. I am just realizing that I am having a hard time adjusting to the RA diagnosis. How did you all cope early in your diagnosis? Thanks. Love and gentle hugs, Juliah

Hi Juliah,

Although recently diagnosed with RA, I have been struggling with pain and chronic fatigue for over 3 years.  I just didn't know what it was and was too afraid to find out.  From what I've read from others, sometimes the drugs help the fatigue and sometimes they don't.  Every persons RA is different.  A lot of people have had luck with Etanercept/Enebral and then again some have not.  Hopefully your Rheumy will find a "cocktail" that works for you.  I'm still working toward mine.  As far as the visits being every 6 weeks. I think that's great!!  I started out once per week and I am now at 6 week visits.  I too, am having a hard time adjusting to this whole "Life with RA" and learning to live with it.  Sometimes I feel like someone or something has stole my life from me.  RA certainly isn't easy but I try to be as optimistic as I can and learn to do the best I can with the cards I've been dealt.  Personally, I have found this board to be the best place for me.  The one place people understand what I am going through and the one place I can understand what others are going through.  The people here are wonderful, sharing their experiences and their knowledge.  Someone here on this board said "This is the best place on earth to hurt" and they were so right...it really is.  Physically and/or mentally.  The people here have helped me more than they could ever know.  I can only hope that I can help them in some way as well.  I'm sure you will get some great feedback on your post.  Good luck to you & I hope your Rheumy is able to find something for your fatigue. 

Peace & Love...Neasy

Thank you Neasy. I developed congestive heart failure when my son was born nearly 7 years ago. I have dealt with fatigue from that for years, but the past several months with the RA, I have just felt like the life has been sucked out of me. I am trying to manage my time and do things when I feel well (like work), but I find that I don't feel well enough to work as I used to (and need to). I have been trying to work 2 days a week, but the past few weeks, I've worked maybe 8 hours the entire week! I hope these meds help with the fatigue.

I appreciate your response and I'm sorry to hear that you've been struggling for 3 years. What meds are you on now?????

love and gentle hugs, Juliah

Juliah,

I'm sorry to hear you've been feeling so down.  I know what you mean about feeling like the life has been sucked out of you.  I feel the same way most of the time lately.  I think once you and your rheumy find a med that works, you'll feel alot better, and be able to spread the visits out more. 

I was diagnosed 6 years ago, and when my RA flares, I still get discouraged, scared, angry, and frustrated.  After I got it under control, I was able to go back to doing almost all of the things I did before.  Unfortunately, this time around I don't think I'm going to be as fortunate, but at the same time, I'm pretty confident that I can find a way to work around my limitations. It's a big adjustment, but you'll make it.  Just hang in there, and know that we're all here for you.

Cris

Juliah,

Cris is right; once you get the RA under control your fatigue will improve dramatically. I've struggled with Fatigue sometimes harder than others for all these years. At times it's worst than the pain; but it centers around flairs for me. The key for me (Can't speak for others) is to keep it all under control with the proper combination of medications.

I'm currently on MTX and Humira and I noticed right away (once we added Humira) I had energy that I hadn't had in years!! That has helped me so much. It even helps me deal with the pain better.

As far as the office visits go; once you're under control depending on your meds you'll go back for a quick check and blood work on a two/three month schedule.

I hope you find the relief you need soon. I'm not sure how long you've been on that combination of medications but I've got a feeling it needs some "twicking". Don't stay with one combination too long if you aren't feeling better soon. sometimes it just takes a while to find a combination that works for you. I'm pretty sure you have not found it yet.

Good Luck!!

Juliah,

I'm sorry you've been feeling terrible. A perfect combo/"cocktail" will be found for you soon enough. Just hang in there!

Help your Rhuemy to find a better "cocktail" by keeping track of all changes/improvements of your condition on every visit.  Also, talk to him/her about taking iron supplements. THose helped me.

Juliah,

If you don't start feeling better soon, by all means contact your Rheu...and schedule another visit. You don't have to wait 6 wks. I've gone in as often as every week and as far apart as 3mo.

Your Dr. has a whole lot of other medications and combinations of meds to choose from. Almost all of us have responded to something.

I have had arthritis for 24yrs and I still go through periodic emotional  slumps. Usually I have a positive outlook.

We're all in your corner. Take care.

Barb

 

When I look back to this time last year,  have no idea how I coped.  I think I was in denial.  When I said I was tired, my hubby said he was tired too.  When I said my hands, feet etc hurt, hubby said hs did too.  I could hardly move, even to go to the bathroom (that was a nightmare!!!).  When I compained I was told by hubby and daughter to stop complaining that they all had the same aches and pains and to get on wth life.  BUT, I new somethng was wrong.  I was convinced that I was nuts.  I waited 3 months before seeing a Dr.  The quack agreed with hubby but ran a blood test to prove that there was nothng wrong with me.  Guess what, the bolod work was + for RA.  Even then the Dr told me to just take ibprophen.  I was so miserable and in constant pain.  I couldn't eat or sleep.  I got up one Saturday morning and like a madwoman forced hubby take me to the hospital. If there really was nothng physically wrong with me then I was prepared to be admitted in the psych ward.

I had blood work and xrays done (which my first Dr refused to do).  X-rays showed signficant damage to all of my joints and again the blood work was + for RA.  Finally told I was NOT nuts.  Dr started me on meds and after trails and errors I have a life again.  It was an incredible battle convincing people that I was not just imagnng my pain.
It's been a year and I have come a long way baby.  I am able to work again. I have been able to travel again.  My hands still bother me the most especally especially the hand that I write/ type with.  But all in all I have my energy back and feel optimistc about the future.  I'm even gong to welcome my first grand child this September.
As the song goes "If you get the chance to sit it out or dance, I hope you dance" I sat it out last year, I'm dancing now! 

edit: Hubby has been tested for RA and the tests have been negative.
RMaria38491.7444097222

RMaria;

What a story!! I think alot of us here know what those early days were like....and what gradification you certainly felt when the folks at the hospital finally confirmed what you've known all along. None of us wanted to be dignosed with something as serious as RA; but when it was finally confirmed it's like "SEE; I TOLD YOU...THERE IS A SERIOUS PROBLEM HERE!!!".

Thank you for sharing your story with us. It's so important that some of these newbies hear this and see that their not crazy...nor alone in this battle.

Best Wishes to you. We're so glad you've joined our group and can bring your knowledge and experience here to share with us.

Lovie

Thank you all so much for taking the time to respond and share your stories. It really does help to know that I am not alone in what I'm feeling, and even more...that there is a light at the end of the tunnel!!!!!! Love and gentle hugs, JuliahWhen I first noticed something wrong with me, i woke up one morning to go to work and i couldnt do anything with my hands.  After a few days like that I went to the emergency room. They admitted me. They did a mri on my head, a lumbar puncture, blood tests, urine tests. After about a week in the hospital they tell me I have MS and advise me to go to the hospital library to get info on it. I was in denial and devastated. When i got out of the hospital they set me up an appointment with a rheumatologist. I went to see him and he told me I dont have anything wrong with me and if my hands hurt go buy a hot parafiin wax bath and dip my hands in it. Well I did that. It felt good and started using it for my hands and feet. Well, i moved out of state for a guy. While there i ended up in the hospital for another week. They gave me an iv for a steroid called decadron. It was a miracle. I was walking just fine, in no pain whatsoever. They gave me a rx for it in pill form. They had me take it for so long that my face changed shape and i looked like a cabbage patch doll. Luckily, after finally getting off of that my face returned to normal. The last draw was when i woke up to go to work of which i was doing in pain every day. (my boss even praised me for it) well I got up and sat on the couch and when i went to get back up, I couldnt stand or walk. I crawled back to the bedroom and told my boyfriend. Went to another hospital and finally, lucky for me the dr. on call was a rheumatologist. I was swollen ALL over. Since then I finally got a correct diagnosis. But was still in denial. Im finally out of denial (i think)  But Im not as bad right now as i was in the beginning. Yes, Im in pain all the time. But not as bad.

So sorry about the novel. (maybe i will win an award LOL) Just wanted to share my story. Just thinking back to those times, I cry.

OH i dont know if the RA and the Fibro I have is what is causing me to stay in a state of depression or if its just my life. 

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