Beginings of RA? I need hope.

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_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 2/22/2008 11:31 PM (GMT -7)   
Yesterday was my 29th birthday. 
Yesterday I found out that I could have Rheumatoid Arthritis.
 
I was at the doctor for a follow up on strep throat, and she asked if there was anything else I needed to ask her about.  I had been "watching" the ache in my hands and knees for years.  It had gotten worse over the past several months, and I had promised myself that I would mention it the next time I was in to my doctor.  By that time, my wrists and elbows hurt too, and it was at a point that I could not lift a book or a pot one handed without pain- even on good days.
She took a look, and decided to do some blood tests. She thought that I might have "tennis elbow", so gave me a brace to use.  about a week later I got a phone call from the nurse- the Rheumatoid Factor was very high, and she wanted to send me to a Rheumatologist.  Was 2 weeks from now OK?
 
Yesterday morning I didn't know anything about RA.  I didn't need to.  I GOOGLED Rheumatoid.  I learned what the test was for, what RA was, and what it could look like.  I cried.  Today, I'm wishing I didn't know anything about RA, because it is too scary. 
 
You see, I'm young to have RA, but my body feels old.  I've felt old for a long time.  I think I've had RA for a long time, and just didn't know it.  I thought the pain just came with life.
 
Last year this week I was diagnosed with Major Depression.  My kids spent the week with family friends because I couldn't "function".  By May, the diagnosis had been changed to Bipolor Disorder.  I just got the medication "leveled out" this January.  I just started feeling like I "have my feet under me".  Now I feel like I've been sucker-punched.  It's been a 1-2 hit, and I'm out.
 
I'm mourning my loss of a healthy future, even while I try to not "freak out" before I get to the Rheumatologist.  Because of the Bipolor Disorder, I fear that one will aggravate the other, and that my treatment options will be limited.
 
I don't even know what the Rheumatologist will do, or say.  When I look at the physical symptoms, I know I have:  Stiffness in the AM and after sitting- expessially in the hips and tailbone.  Weakness in grip.  Pain with sitting (hips, tailbone, knees) fleshy "bumps" in elbows that come and go, depression (bipolor), anemia, pain/ache in my feet, knees, nuckles, wrists and elbows.  Sometimes it feels like I slammed my hand under a rock, or tht it might make it feel better it I do.  Sometimes I am just "aware" of the "discomfort" but there is no real "pain" to speak of.  Sometimes that is worse that feeling the pain.
 
My question is: how do you react?  How do you tell family/friends/coworkers?  What do I do about increasing pain in hands and wrists while waiting to see the specialist?  What do I do about the feeling that I have "lost my future" to the disease?
What questions do I ask the dr?  What do I make sure that I bring up? 
What can you tell me that will give me hope?
 

Christina
 
When you cannot stand, on whom do you lean?


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/23/2008 4:50 AM (GMT -7)   
Hi Christina,
First of all happy birthday. There are good meds for RA. There is Remicade, Humira, Enbrel. Don't feel ashamed to tell family or friends they with understand. I am dealing with Crohn's Disease, Osteoarthritis and in the beginning stages of Rheumatoid Arthritis. You will find good support here.

teddybear
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/23/2008 6:31 AM (GMT -7)   
hi christina, and yes Happy Birthday!!!! smurf
 
i am certain right now your birthday is the last thing on your mind, but recieving the proper medical care is an important step to your future and
it seems you are now on the right track hopefully.
 
i too have RA and probably have had it for a while prior to being diagnosed.  yep i too thought everyone lives with pain?  but i guess not.
 
teddybear is right with the meds today available to us our futures are much brighter than in the past.  oh i so remember the frantic google search for
answers and wondering what the heck is going to happen to me?  but you are not alone and if you have been reading our posts yep we moan and
complain but we are a great support. 
 
as far as family and friends go - i shared with those closest to me at first and still years late not everyone who knows me knows i have RA.   you may get frustrated at times too because pain is not visible to others and your family and friends will not be able to tell how bad a flare is - i think this is the hard part because my first gut reaction is to react, but with time i have learned just to tell those who need to know, i am having a bad day this is where i hurt....... in the past i wouldnt tell my kids and then after many requests would explode and yell cant you tell i am having a painful day?  they couldnt.  they are teenagers and theirs are their only needs.  so dont expect your family to understand or know about your bad days until you share. 
 
with friends i found in telling them about my pain, every conversation turned into how are you, your pain, etc.  i lost the old conversations and have worked hard with friends not to make pain who and what i am.  i guess that is why i turned to hw!  here i vent and share and no one knows me so my pain and frustrations wont define me in public.  plus everyone here understands and cares.  yeah  
 
ok this is turning into a long dramatic post sorry....... as far as the doc goes.  you will more than likely give up more blood and smile pretty for the xrays and then be given possible confirmation on your dx and any damage noted in xrays.  but pain does not equal damage...  i have lived with pain since my early 30's and am old now.... lol 45 and i have some but minimal damage for the years.  each person is different however and you need to find that out. 
 
you then will be given treatment and the word immunosuppresant or chemo may be mentioned and that sounds so horrible when first heard.  i thought chemo??? noway!
but if with your research you have learned anything it is our body is attacking ourself and we need to stop the attack.  these meds often in combinations help and finding the right balance may take a while to do but we are here for support and questions during that time. 
 
so go celebrate your 29th birthday~ tomorrow will be here when you get back!!!!!!!!  tongue    ((((((hugs birthday girl))))))) yally

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/23/2008 5:47 PM (GMT -7)   
Hey there Christina.. welcome to the Arthritis Forum.. Sorry it has to be under these circumstances.. but like teddybear and Yally said, this is a good place.. I am 34 years old and have 3 kids.. I was diagnosed with arthritis when I was 32.. I too thought the world had been knocked out from under me.. I have always been very active in my job and life.. and feel like all of it came to a screeching halt when I was diagnosed.. but I soon started on Enbrel.. and my quality of life improved more than i could ever imagine.. I still have my bad days, we all do, but you learn to manage.. it takes time.. but coming here and venting to everyone on this board, who have been in our shoes, lets you know that you're not alone.. and that in itself is a wonderful feeling.. Just hang in there, and keep posting.. and please ask questions.. that's the best thing you can do right now.. if find out everything you can, so when you go talk to the rheumy, and she asks you questions, you know WHY he's asking them.. and you can help him to help you that much better.. Arm yourself with knowledge.. take good care.. and I hope to see more of you on the boards.. OH! and happy birthday! Make it one you'll never forget (in a positive way)! Duck
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs/Migraines/Hypertension
Current Meds -  Enbrel/Prilosec/Synthroid/Nitrofurantoin/Midrin/HYZAAR
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 2/24/2008 1:09 AM (GMT -7)   
Thanks guys/gals.
I haven't told my kids yet.  I probably won't until I get back from the doc.  Last night I was climbing the walls, and i took a chance on calling a great friend of mine.  He's our children's pastor and the only one who would be up at that time.  He helped me go grocery shopping with the kids today.
While I was telling him what was going on, he said that I was one of teh strongest people he knows.  I asked him how he could think this while I cried on the phone at him, and he said that it takes a strong person to know when to ask for help.  He says that if anyone will make it, I will.
I've noticed that as soon as I mentioned the pain to the doc, I became more aware of it somehow.  I sware I have hurt in more places in the last couple days then I ever did before.  I don't think it's all in my mind.  I think I just gave myself permision to add it all up.  It doesn't help that I am researching instead of sleeping after the kids are in bed.
when I wanted to get my moods under control, the first thing I did was catalog what I was feeling, and chart the days.  I think I should writ down what hurts when, but that would make me more aware of the pain, which could make it worse.  Should I try to ignore it till the rheumy appt, or should I get a jump on cataloging what I feel?  Should I brace my wrists if it makes them feel better, or should I just keep them moving?
 
Here's a question- since I use my right hand more often, it hurts worse by the end of the day.  If I try to switch it up and use my left hand instead, the left hurst worse.  I read that the 2 sides should feel the same.  Do your joints hurt worse with more use?
 
Next, when I do explain this to my kids, I need to break it down in a way that won't scare them, and they wil understand.  My girls are 9, 7 and 3.  They worry about me already, and have overheard that I am going to the doctor.  How do you explain RA to young kids?
 
Thanks for your support.  I did have a decent birthday, and my date with my husband will be later this week since he had to work. You know, last year I had a depression breakdown, and this year I "got" RA notification.  I think I will skip the rest of my birthdays.  29 forever. 
Christina
 
When you cannot stand, on whom do you lean?


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/24/2008 7:57 AM (GMT -7)   
hey christina, glad you stuck around you will grow to love the support on hw! tongue
 
i think it is great you found someone who you can trust to talk to and  who better than your childrens pastor! 
 
as far as explaining it to you youngins i am certain others with younger kids will jump in but i think simple good days bad days
and the reassurance that mommy will be ok.  i would answer questions to the older child but not provide unsolicited details myself. 
right now you are worried about the worst thing that could happen - no need to share that - it may never happen! tongue
 
my girls are older and they googled it and then came and asked questions..... i have a friend with RA who uses a cane
and i so remember my youngest who was maybe 12 at the time ask me if i was going to be crippled like aunti kim.  (mind you she is not crippled!) 
after a reassuring chuckle that i dint know how i would be i gave her the best answer i could..... that i hoped with the doctors help and Gods hand- i wouldnt be.
and thus far i am still a hard working mom. tongue   who needs a vacation! teehee yeah
 
my best advice is listen to your body - if like mine at times it will scream slow down!  hard to do but the meds really should help. 
it will take a bit for them to kick in but once the right combination is found you may begin to feel less pain.  i think that is when we loose some of our forum friends?
i often hope they are feeling better and out and about?
 
29 forever!  i think i would choses 19 forever if truth be told!  carefree and painfree ~but 50 is the next big one around my corner! UGH devil    yally

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/24/2008 3:08 PM (GMT -7)   
I just wanted to inject a lttle hope. The nine months before I was diagnosed with RA (I was a twenty three year old grad student and so sick I almost had to drop out of school) were the worst months I have ever had with the disease. Once the meds started I never got that bad again. So have hope that once they diagnos what is wrong and find the right meds for you you may feel better than you have in the past. You did not develop this disease the day they did the blood tests you already had it it was already affecting you. Now you know what it is and can start treatment that may help you feel better.
It may take a while to find the right meds but find a Rhuemy you trust-do your own research on meds while keeping in mind that most people never have the worst of the side effects lsted-and be actively involved in your own treatment.
You will find a way to live and live well with arthritis and any time you have questions or need to vent come here we have all been there and you will find support here.
Sj

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 2/25/2008 1:59 PM (GMT -7)   
Today I went to get the topical pain cream advertised for arthritis. It doesn't seem to help much, but at least I feel like I am doing something. While I was out, I filled out the forms so that my psychiatrist for Bipolar Disorder can trade information with the rheumatologist about treatment options. I go in to see a recommended "rheumy" march 3rd. I moved my Psych appointment from the 14th to the 7th, so that if I don't do well after the rheumy appointment, I can get help sooner from my psyc.

I'm going to pose some new questions a new topic line, I'm sticking around, so look for me.
Christina
Christina
 
When you cannot stand, on whom do you lean?


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 2/25/2008 2:29 PM (GMT -7)   
Christina,
Sounds like you are doing all of the right things as far as your doctors go. I agree the topicals never did anything for me either but ibuprophen will help if you have inflamation and can take it with the other meds you are on.
Sj
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