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10/29/2011 09:23 PM

I have just been diagnosed with RA

Doatz
Doatz  
Posts: 86
Member

Hello all,

I have just been diagnosed with RA. I had no idea what was going on with my body, I simply thought ....well all these weird sensations and pain must all be due to the car accident I had in July of this year that left me with various herniated discs, and the most severe of them are in my neck, compressing my nerves and spinal cord, I apparently have DDD, confirmed after the MRI's I received for my accident.

So I was literally on my couch on bed rest from my car accident , thinking to myself , well I will have to wait to schedule surgery on my neck, since after they attempted to due a neck fusion surgery on my neck and I stopped breathing , they aborted and I did not go through with the surgery. My orthopedic surgeon who had the bedside manner of a serial killer said you have terrible lungs, get clearance from a pulmonologist and then we can attempt surgery then.....I said okay.....resting on my bed waiting for the appointment when all hell broke loose ! I went to get up for a cup of coffee and putting my foot on the floor caused me extreme pain in my heel , my hips felt stiff and my knees had stabbing pains , I finally got down the stairs and said to myself" shit! I really need this neck surgery! After a few weeks went on I kept blaming my endless pain and stiffness (and now a new symptom , swelling ...) to car accident and neck issues when my best friend says to me, ya know ....I really think you need to see a Rheumatologist.....a Rheumatologist???..what the hell for?? I told her no, I'm done with doctors and she insisted.

Long story short (way too long... sorry, I've been holding a lot in :/ ) my Rheumotologist ran some blood work and I got a call a week later to come in ... Apparently my ccp test? ( I think that is the name of it) came back at a 102 and she told me that I have RA and that all of my pain, stiffness and swelling was all coming from the RA not the neck, she says she doesn't doubt that I have all kinds of compression and nerve damage but that I most definitely am suffering with the RA.

I am shocked and so heartbroken, I am mad, I dont know why, but I am, I have a small child to take care of and I love her with all my heart , however, I am limited now and that hurts me . I feel like shit everyday, and I just started taking Methotraxate last week ... I need a 5week regimen along with my vitamin D and folic acid, apparently my vitamin D was way too low, don't know if that's common with RA. So I sit here typing this in hopes that someone can give me some information on what to expect with RA in general and this chemo drug that scares the shit out of me cause I'm also taking percocet for pain ....I am so scared of Methotraxate , I feel like it will kill me or something...I know dramatic....but it really scares me.

Thank you for listening to thus long winded story but I had to let it out, sorry it is so long and please, if anyone has experience with the above drug I mentioned , I'd love to hear your thoughts ....also, what did my ccp of 102 mean? I know I'm positive for RA , I just don't know how far in I am , just got done with x rays as well....awaiting those results.

Thanking you kindly for listening!

Post edited by: Doatz, at: 10/29/2011 10:23 PM

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10/30/2011 05:59 AM
aval7
aval7  
Posts: 114
Member

hello and welcome,

RA is a complicated and tough illness to have to deal with. It can leave you wondering all the time because your body and joints get effected differently many times never knowing where RA will attack next. I've had RA almost 12 years and it's been mild until recently went into a bad flare. I"m on MTX too and I haven't had any problem so far. I know the drugs used to help with the pain and swelling of RA can be scarey and some have terrible side effects. You and your dr just need to find the right cocktail of meds that works right for you. the ccp test is a test that dr does to see how much inflamation is going on in your body. there's nothing to be scare of, I've seen and heard of people with RA having much higher levels than you..it pretty much just lets the dr know you have definate inflamation going on and that your RA is pretty active in your joints at this point.hang in there I'm sure you'll be ok soon as it's under control. You can lead a normal life for the most part, I had 4 children and now am rasing 2 grand daughters an only recently stopped working temporarly til i get my RA back under control. I think some of the best medicine is a positive attitude and kept laughter and happiness in your life. Don't let RA control your life ...live your life and you control your RA as you live a happy life..I hope you are feeling better soon..Ann


10/30/2011 09:14 AM
Doatz
Doatz  
Posts: 86
Member

Thank you so much Ann! I needed to hear that Smile I am trying to stay positive, it is hard because my inflammation and pain have been so rapid ... I'm going to take one day at a time , so I have a question for you , I have been severely inflamed since last night ( ankles and feet) and I thought sleeping throughout the night would make the swelling go down, well when I woke up this morning it is the same ior slightly worse , is this normal ?? Thank you for welcoming me and answering my questions ..., be well, Ann Smile

10/30/2011 09:26 AM
aval7
aval7  
Posts: 114
Member

You are welcome. Yes I'd say it's fair to say that's normal for RA. I seem to be stiffer and harder to be mobile when first wake up. RA causes the joints to be stiff when their not in much use. It take a bit to move around and get the joints moving easier kinda like oiling a chain on a bike lol. Keep your chin up. AnnLaughing

10/30/2011 09:32 AM
Doatz
Doatz  
Posts: 86
Member

Thanks Ann ! Your the best! Smile I'm glad I joined... I hope you have a pain free day.

~Elyse~

Tongue

Post edited by: Doatz, at: 10/30/2011 09:33 AM


10/30/2011 09:43 AM
bits
bits  
Posts: 10865
VIP Member

Hi Doatz,

I was dxed with RA in 2007 when I was 50. I cried for a month. Totally terrified of the disease and more terrified of the RA drugs.

I needed 3 opinions before I would accept I had RA. All 3 agreed it was RA.

We tried MTX both oral and injections. The injections were the best for me because they greatly cut down side effects.

Many folks do very well on MTX. I did for awhile and had to switch over to Enbrel.

My RA meds have been on hold for 2 years due to another health issue. Now, that was scarier than not being on meds. I still use prednisone bursts and have pain meds but nothing to really fight RA.

RA is frustrating to say the least. I did go thru the stages of grief. Sometimes one will pop up now and then but it is never as bad as the beginning and never lasts but a day or so.

I am 99% housebound. Every inch of my life has been affected by RA. It broke my heart far more than my body.

However, it didn't break my spirit. Not only have I learned to live with RA I have found a richer, deeper, more meaningful life despite RA.

The road of RA is strewn with many obstacles but together we can navigate it. I agree with Ann that we can still have laughter and happiness on this journey. Yes, and have a positive attitude. Attitude will be one of your strongest weapons.

For me, Jesus has been my rock. He has held me when I could not hold Him. He is my stength in the battles of everything. He opened my eyes to beauty I had never seen before. Everything taken from me was replaced with deeper far more meaningful things.

Praying you feel better soon dear.

Gentle hugs


10/30/2011 09:52 AM
Doatz
Doatz  
Posts: 86
Member

Thanks Bits! I will pray for you.... You have a wonderful attitude and like you i found peace through praying .... This is the beginning of my journey..... I guess I've always been adventurous , so why not just jump in and keep my positive attitude.... I'm so glad I joined , I don't feel alone anymore....God Bless and I hope you have a pain free daySmile

10/30/2011 01:03 PM
JACKIEH
JACKIEH  
Posts: 440
Member

when i first had my dx, i burst into tears and had severe panic attacks for the next two weeks, i was terrified, i looked it up on the internet and thought OMG, not that, and when i started the meds i looked them up in the internet and thought no way but it was like my rheumy said if you look up aspirin and see the possible side effects you will say the same, but the most severe side effects are RARE, my symptoms were much like yours, btw i have had it for 3 years now, first i had pred and mtx orally but I CHANGED AT THE BEGINNING OF THE YEAR AND, started mtx injection and it was a lot better both in controlling ra and side effects such as feeling sick and exhausted. Its kinda a big picture thing, the damage to your joints etc will be much worse than if you dont treat it, a necessary evil if you like. i wish you pain free days and relief, i shall be thinking of you

10/30/2011 07:11 PM
Molly5
Molly5  
Posts: 1160
Senior Member

Doatz...Welcome! The Methtrexate scared me too. I put off taking it for a while because it scared me so bad. I have now been on it for a couple years...8 pills weekly. Take care!

10/30/2011 08:09 PM
PauleR
PauleR  
Posts: 1815
Group Leader

Hi Doatz,

Welcome to our RA family. I'm so sorry for all you've been through. The problem with RA is that the symptoms can mimic other conditions and it makes it hard to know when to see the doctor. I though I was having a bad fibro "fog", so I ignored it for a long time.

It doesn't surprise me that the car accident triggered your RA. Any kind of stress, be it physical or emotional, can trigger illnesses that we may be higher risk. Would you have developed RA, now or in the future, we don't really know, but it makes me wonder.

I have been on MTX for about 2 years. I've done fairly well and haven't had any bad side effects. Like others have said, the terrible side effects listed are very rare. Once you start feeling better, you might feel better about taking the MTX.

Looking forward to learning more about you. Take care.

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