Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
No I don't have psoriasis.
I tried to keep my post as short as possible. My daughter saw our retired pcp, he asked how I was, she said not well at all. She explained the joint pain, and loss of movement, hands, wrists, elbows, etc. with a sudden and crushing onset. As soon as she said, "and it was even in her jaw". He said "Rheumatoid Arthritis". She answered "that's what she thinks". He had suspected it many times, but couldn't get enough criteria for the diagnosis. I'm really suspecting RA. My grandmother had it, she had very crippled/deformed hands and feet before she passed away. Her daughter/my aunt has arthritis in her hands, feet, ankles and knees. She has never been told a "type", just arthritis.
I guess my biggest "issue" other than not being able to walk or use my hands at night
My husband is an absolute saint, he is so caring, loving, and attentive. But sometimes my frustration is aimed a him, and then I feel so guilty, and I cry and cry. He understands of course, he keeps saying "Hang in, just a little bit longer, we will find out what it is, and get you help". I know he's frustrated as well. It's just been a horribly emotional time my family. if "they" tell me one more time it's fibro, go home, there's nothing we can do, I'm going to pull my hair out, and maybe someone' elses as well! Maybe my pcp, I can show him how my right arm works!! lol
I can't thank you enough for the response....
I feel a little lighter now.
wishing you the best...
connie
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis
Keep us posted on what is happening in your life.
Oreo
I have been to this rheumie before, but only to confirm Fibro. b/c my pcp wanted to be sure he wasn't missing something. That was 4 years ago, so I have to wait to get in, like a "new" patient. I was willing to wait, b/c she is supposedly the best in the area. But the day in and day out with all this, is getting a little harder than I thought it would be, to wait to get in. I really felt comfortable with her, she was very comforting, compassionate, and informative. She also suspected auto-immune in my future, she told me what to watch for. It's just I haven't had alot of luck when it comes to medical problems, don't get alot of relief. And of course a diagnosis makes all too real, so I'm getting scared of what my future holds. The mental and emotional part of this, is getting to me. I'm trying hard to cope, keep going and trying to be positive. But it's difficult sometimes.
I'm so glad I found this site though. It has given me a boost, b/c I feel like finally, someone knows what I'm going through. And I will have to check out the chat rooms.
I can't thank you ALL enough for your responses. It really has made a difference for me. Thank you!
wishing you the best
connie
My doctor started me on predizone(sp), and methotrixate(sp) and a IV injection once every 8 weeek of Remicade. Now my results have not been what I was hoping for. I was on a high dose of prdizone and the doc want's to get me down and hopefully off of it but can't seem to get down on the drug as soon as I go with light dosage I flare up and flare up bad. The doc is going to attempt to lower the predizone leading up to the remicade treatment and raise the remicade treatment to counter the predizone. I worried that I won't be able to balance out my drugs in time with my work benifits.... they have told me that I can reapply for my position when I'm released from Temp disabaility.... however I have been on TD for 6 months now and seem not to be getting any better. Let correct that I have good day and hours... but my bad days and hours are bad.
Anyway don't let any doctor or other person make you feel like your making things up or your crazy or anything like that. I remember when I first walked into my RA doctors office and the nurse looked at me and said I know your hurtting..... you have the symtoms of RA. THAT WAS THE NURSE... I can't tell you how good that felt.. to finally be seen as someone with a real disorder and real issues. I remember almost crying in the room waiting for the doctor just because I finally found someone who felt that they could help me.
Don't give up hang in there.
I don't Deserve this award, but I have arthritis and I don't deserve that either.
Post Edited (Fonzie223) : 8/12/2005 12:44:22 AM (GMT-6)
It is always a relief to put a name to the pain you have, might not make pain better, but at least you know it is real to others as well.
You will find a lot of support from peeps suffering from various forms of arthritis and they are always ready to tell what has and has not worked for them.
We are glad you are here,
flopsie
Don't walk in front of me....I may not follow
Went to the Rheumie, she was GREAT. She said it's RA and Fibromyalgia. The RA doesn't cancel out the Fibro. She
ecouraged me to be involved in my med. care. Gave me a slip for work, that my PCP wouldn't give me, to just save my job. Put me on plaquanil, 200X2. She was livid with my PCP's attitude to not being able to bend my left arm (are u left handed? don't worry about it) She said "Well what does that have to do with anything? I'm sure he would only want to have the use of one of his arms too!" And she shook her head in disbelief! Have had some side effects with stomach and bowels, but nothing I can't live with. I believe I'm starting to feel a little better, joint wise. The night time doesn't seem as horrific as it had been. Not a piece of cake by any means, but I believe it's better. My husband worries I'm just getting used to the pain, but he's hopeful that this will work. My hands seem much better, still can't straighten my right elbow, but the pain seems better. Seems like I'm writing "seems" alot...lol It's like holding your breath....and hoping...that this is gonna get better now. Got my daughter off to college, suffered horribly the weekend we moved her, did a little too much. But it's over now, and it's good.
Thanks so much for your support thru that oh so tough time...it was a big help to me. Now it "seems" like my will is coming back, and I'm moving more, and starting to believe I can deal with this, if this is all the better it gets. It's better than before.....I can deal with that. Again, thank you for your words of encouragment....
you are angels!
momo
Don't forget about us, keep us updated when you can,
flopsie
Don't walk in front of me....I may not follow
Way to go!
Beth
of strange virus....." My Mom was frustrated by it after years. We
are talking 30-35 years ago.
Now, it seems to make sense to my Mom, a "little" after the fact. It was a "light bulb" moment for my Mom recently.
I have been feeling better lately with the meds. My energy is coming back, the joint involvement and joint pain aren't as severe.
So I'm going to stay the course for now, b/c it seems to be working.
But, thanks for your concern and post.
Lyme's is No joke
sending you lots of good thoughts in keeping strong willed in your treatment. keep in mind though, that with RA, many times a good rheummie will suggest treating it aggressively with DMARDS and biologics before it gets to a dibilitating point. many new wave approaches to RA are going straight to the Enbrel's and Humira's and all. in the earliest stages is the best time to really slow the disease process. just some stuff to keep in mind as you assess your progress with the plaquenil.
the muscle spasms were interesting what you mentioned. along with Fibro, i too had very bad localized spasms while on chemo for Lyme's. it was something called Tetany. and how it was treated by my neurologist was by a high calcium diet! cool huh? and it worked. something in the calcium electolyte calmed down the twitches.
RA is filled with endless ups and downs it seems doesn't it? i hate the unpredictableness of it and what i'm going through with it's uncontrollability.
glad you came to HW!! happy to have you!...and remember, we're having scheduled chat next week, so be on the look out!!!!!!!!!!!!!!!!! we're giving it our best go and need all the peeps we can get.
{{{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}
erin