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momo
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/10/2005 8:40 AM (GMT -7)   
I'm new  here.  I have had Fibromyalgia for over 10 yrs.  But, with recurrent nodular epicleritis for years, eye dr. says I "will" have RA, Lupus, etc.  I have had onset RA symptoms for about 3 yrs in wrists, hands, feet and elbows, red, swollen, stiif and painful, can't find anything in work up.  Latest problem started end of June.  Had a small rash on my leg, thought it was a bug bite at first, (not a target rash)dr. said nothing to worry about, cellulitis, gave antibiotics.  1 week later, right wrist started hurting, within an hour it was horrific pain, and then my left wrist.  By next morning, both wrists,  both hands, feet, ankles, knees, and elbows.  Couldn't get into PCP for a week, even after my husband told them I can't walk, or use my hands.  "family" members insisted I go to ER.  When the nurse saw my hands 1st question was "have you been tested for RA?"  Told her yes several times.  She said "well u need to be tested again".  As soon as ER dr. heard Fibro. and RA said this is not an emergency, chronic condition, go to your pcp.  Told him we couldn't get in for  week.  He said he wouldn't do any testing, gave me darvocett and sent me home. (my husband was little more than mad)  Had to wait out the week, couldn't work, couldn't walk, pain was horrific.  The pain even went into my jaw, and eating was impossible except for jello for a couple days, my husband had to dress and undress me, it was humiliating.  Finally got to pcp,  (this is my first visit, after my lifelong pcp retired.)  Not sure I'm gonna keep this one.  Told him I couldn't straighten my left arm at all.  his response "Are you left handed?"  I said "no".  He said "then don't worry about it".  He ran tests for Lupus, RA and sed. rate, etc. He said if blood work come back o.k., it's still Fibro.  I assured him this is not the same as the Fibro pain, it's different, more severe, my joints are red and swollen, I can't use my hands at all by the end of the day. He told me I have to... calm down, and try to relax!(??)  I left there thinking I was overreacting, and second guessing myself, and maybe I was being a big baby.  So I tried to push myself, well I couldn't push very far, you can't push when you can't walk and can't use your hands.  (i'm really trying to give the short version) Well sed rate is not normal, need a rheumie, have to wait a month and a half to get in to her!  In this time, things have gotten a little better.  Stiff in morning, but as day moves on can do a little work around the house, but have to alter how I do things.  By late afternoon/early evening it hits like a ton of bricks.  Joints so stiff, and painful.  Hands, wrists, feet, elbows the worst, many nights spent with tears rolling down my cheeks from  frustation!  I have not been back to work, have an angel for a obss, who is holding my job until i get to rheumie! I no longer take showers at night, b/c I can't use a brush to do my hair.  I have learned to adjust things in my life living with Fibro., but "this" has been the toughest thing I have ever dealt with.  It's totally drained me emotionally, as well as physically.  I believe it's RA, don't have symptoms of anything else.  Have read everything I can on auto-immune diseases, people say i'm "too informed".  What would be your best advice for my rheumie visit?  What should I expect as far as testing, and would should I expect as far as treatment, if this is what I have.  I have read some posts and I am scared to death from things I've heard about the meds, and side effects.  If this is RA, where would I expect to begin with the meds?  What seems to work the best for RA onset.  How much should I stress I don't believe this is Fibro, it's a different pain?  When I did that with my pcp, he acted like I was a raving lunatic.  Here I go second guessing myself again, but I don't know how aggressive I should be if I don't feel they are "listening".  Any advice would be appreciated.....I have never dealt with anything like this before.  My daughter is leaving in 3 weeks for her first year in college, i'm so excited for her, but so afraid I won't be able to make the trip b/c of all this.  So it's a very emotional time for me, on top of all this. 
Thanks for letting me vent, words of wisdom eagerly accepted!
Thanks
connie

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/10/2005 8:57 AM (GMT -7)   
Connie - first of all I would like to say welcome to Healing Well, you'll find there are a lot of people here that can sympathize as well as empathize with what you are going through... There are quite a few nurses that post here also that can give you some insight to your problems. Bottom line is though, you need a new PCP... why in the world would he tell you to just not use that hand/arm? What kind of crap is that? Do you have Psoriasis? The reason why I ask is 'cause I have Psoriasis and I have Psoriatic Arthritis... The only way they knew I had Psoriatic Arthritis is 'cause I didn't test positive for RA, but had all the symptoms. Of course it took over a year to come to that conclusion too. You need to get in to see a rheumy and soon. You are NOT too informed, over-reacting, being a big baby and you should NEVER second guess yourself. No one knows you better than you and no one knows the extent of your pain better than you. Once you see your rheumy, they figure out what you have. You may have Fibro as well as RA... With the jaw pain, you may have TMJ... Bring all your info that you have with you and the questions/concerns that you have voiced here on your rheumy visit. Hopefully she will be better than your PCP. You must stay aggressive, sometimes that's the only way to get the Dr.'s to truly listen. Best of luck to you and I hope you get some answers soon. Please keep posting, venting is always good to help relieve the stress and these posts sometimes bring a smile to your face. It's nice to know you're not alone in this. Best Wishes, Warm Hugs and as always - Best Wishes - Ducky
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1999 - While 11 weeks pregnant


momo
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/10/2005 9:24 AM (GMT -7)   
wow thanks for the quick reply! That is great.
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 :-) is the emotional toll this has taken. When I got the Fibro diagnosis, I learned everything i could, and dealt with it the best I could, adjusting and rearranging my life to accomodate the aches, pains, "fog", etc. But this, I'm really struggling dealing with this. It has knocked me down, and I keep struggling to get back up, but it knocks me down again. This is a tough one.
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

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 8/10/2005 10:04 AM (GMT -7)   
Having a supportive family helps immensely! I'm so glad your hubby and daughter are right there beside you.... I understand the lashing out at your hubby thing.... When we are in pain and frustrated 'cause we don't know what is going on, it is easy to lash out at the person closest to you. Normal? Yes... Right? No. But thankfully he understands. I'm sure that when you get to see your rheumy, you'll get some meds and feel good as new! When do you get to see her? I have a follow-up appointment with my rheumy on the 23rd of this month, so we'll see how that goes! Let us know how you are holding up, we're always here! Happy Weather, Warm Hugs and as always - Best Wishes - Ducky
Diagnosed January 2005 - Psoriatic Arthritis/Dactylitis/Spondylitis 
   -Currently taking 50mg shot weekly of Enbrel
 
Diagnosed May 1998 - Graves Disease
   -Complete Thyroidectomy September 1999 - While 11 weeks pregnant


oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 8/10/2005 11:03 AM (GMT -7)   
Momo, welcome to HW. Sorry for the pain that you are having. I hope that you find relief from it soon. (like, yesterday):) Try to get in to see a rhuemetologist. They will be able to give you advice on the meds that will help you the most. Sorry that there is such a long wait for you to get in to see anyone. I wish that you could have been Dx years ago so as to have not gotten this bad. My thoughts and prayers are with you and your family.
Keep us posted on what is happening in your life.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


abnalexmom
Veteran Member


Date Joined Sep 2004
Total Posts : 905
   Posted 8/11/2005 12:07 AM (GMT -7)   
Hi Momo-just wanted to interject here my 2cents for what it's worth.....my rheumy let me know that for onset RA, your labwork and other workup can come back negative for the first 3 years or a little longer.........My labs are all negative as well, except for Sed rate, like yours was.  But, I have all the physical symptoms, swollen, tender, painful joints hands, fingers, wrists, knees, elbows, feet and toes.  My ankles seem to be ok for the time being, I'm suprised tho!  LOL 
 
Well, I would worry about stressing how you feel that this isn't fibro pain, if you go in that office at the pain level you're in (I never took my pain meds prior to a visit so that I'd be in max pain when I got there and the doc could see the pain on my face)...then you should have no problem convincing them about how bad it hurts and where and that it is more "bone/joint" pain rather than muscle. 
 
The other test my rheumy ordered was an AntiCCP or maybe it was AntiCPP?  It is a relatively newer blood test which also indicates inflammation.  This helps them to feel more comfortable w/giving you the rheumatoid diagnosis versus the osteoarthritis one. 
 
I got a full physical exam while at my 1st rheumy's appt.  I mean every joint was wiggled, stretched, poked, pulled and HURT LIKE THE ****ENS when I left there!! LOL  But, at least he was thorough!  He stated that he would have me take a regular antiinflammatory for now (Naprosyn 500mgs tablets, one every 12hrs)  and that after my labs came back in August and I see him for my followup, he said we'd determine at that point which, if any, DMARD to start me on.  So far, I've had little to no relief from the Naprosyn.  No improvement in function or pain levels.  So, I am thinking I'm in the same boat as you are!
 
I too wish your appt could be sooner.  I go on Aug. 23rd or something like that ( I need my calendar w/me as I'm a fibro sufferer as well, like you and my fog is really bad these days!)
 
Hope to see you around here (chat rooms are fun!)  Welcome and feel free to post to me in the fibro board...that's where I moderate and hang out. 
 
Hugs and prayers,
Beth
"The heavens proclaim his righteousness, and all the peoples see His glory." 
Psalm 97:6
 
"I lift up my eyes to the hills-where does my help come from?  My help comes from the Lord, the Maker of heaven and earth." 
 Psalm 121:1,2
  
 
 


momo
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/11/2005 5:02 AM (GMT -7)   
Thanks for your reply beth. I guess we are alot alike. With the worst flare of my Fibro. I had tried anti-inflammatories Naprosyn being one. I didn't get any relief. I was off work at that time too, with joint pain, severe muscle spasms, and severe fatigue. (I had to have 8 injections of muscle relaxers in my uppers back, multiple times for the spasms) They then gave me relefen, I took my first ambulance ride, when my son found me babbling on the floor in the bathroom. violent vomiting, soaked with sweat but cold, heart racing. I thought I was talking, and couldn't understand why noone could understand me. To me everyone was talking a thousand words a minute, and I was thinking, what the heck is wrong with THEM? I don't remember much after that. Got to the hospital, they thought gall bladder?, maybe a virus?, the EMT kept saying she took a new med. might be shock. They sent me home when my mind was clearer, and said see your pcp. Well, it happened again, same thing, but worse, the next time I took the med. But this time different ER, they said you were in anapholatic shock, NEVER take this med again. So, since then I'm very leery about taking "new" meds. I try to avoid pain meds for fear of addiction. And thru the years I have been able to cope, not to say it's easy, but I cope. Jacuzzi baths, vibrating heating body pad, knowing when to rest, and when to keep going, and I have done pretty well for the past 5 years. I only worked part time, another part of coping.
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

Fonzie223
New Member


Date Joined Aug 2005
Total Posts : 3
   Posted 8/11/2005 10:13 PM (GMT -7)   
I know how it feels when a doctor looks at you says ..... mmm just don't know what it could be. I went through a similar situation as you momo. I at the moment the RA is effecting my lower portion of my body pretty bad but the good side is I can type at the moment. I think when you are first diagnosed or before you are diagnosed with RA most don't suspect it..... heck I never even heard of it..... Before I was diagnosed with RA I actually thought there was only one kind of arthritis and to add insult to stupidity I thought heck if it's arthritis .... Just take a advil and work through it...... LMAO......... Now I have the up most respect for all those who have RA or for that matter any arthritis. I'm still learning every day about RA.

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.
 
Author Jack Benny (1894-1974)

Post Edited (Fonzie223) : 8/12/2005 12:44:22 AM (GMT-6)


Flopsie
Veteran Member


Date Joined Jun 2005
Total Posts : 1361
   Posted 8/12/2005 12:37 AM (GMT -7)   
Just a quick note to say welcome to the forum

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
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
 

momo
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 8/30/2005 12:53 PM (GMT -7)   

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


Flopsie
Veteran Member


Date Joined Jun 2005
Total Posts : 1361
   Posted 8/30/2005 3:21 PM (GMT -7)   
Glad to hear such good news. Hooray for you. Hope it continues to go well for you.

Don't forget about us, keep us updated when you can,
flopsie
Don't walk in front of me....I may not follow
Don't walk behind me....I may not lead
Walk beside me..and be my friend...
                                    Albert Carnus
 
and Lord, put your arm around my shoulder and your hand over my mouth
 
Help HealingWell.com continue to help others. Donate Today....http://www.healingwell.com/donate/
 
co-moderator for Arthritis and Anxiety/Panic
 

abnalexmom
Veteran Member


Date Joined Sep 2004
Total Posts : 905
   Posted 8/30/2005 8:29 PM (GMT -7)   
Dear Momo, that is WONDERFUL news that your Rheumy cares so much! I'm so happy for you. And SO happy to hear how well you're coping! Please stick close to the boards and we'll help support you whenever you need anything ok?

Way to go!
Beth
Hugs and God Bless You,  Beth
 
 
Co-Moderator, Fibromyalgia Forum HealingWell.com
 
Fibro, RA, Costo, Endo, IBS-D, Anxiety-2004
 
Please help support HW resources with your donation today! 
 
 
 
"I lift up my eyes to the hills-where does my help come from?  My help comes from the Lord, the Maker of heaven and earth." 
 Psalm 121:1,2
  
 
 


momo
New Member


Date Joined Aug 2005
Total Posts : 5
   Posted 9/1/2005 6:37 AM (GMT -7)   
I read the symptoms of lyme, but i don't have many of them. I have a familial background of arthritis. Now, my mom tells me I was treated for it when I was very young, for my knees, the Dr. said "touch of arthritis" give her aspirin. I also had "colds in my eyes" all the time when I was young, they now wonder if it was episcleritis, undiagnosed. I have known for years, b/c of episcleritis that something was wrong, but nothing showed. The first severe bout of epi, requiring steroids, was when I was 21. Now, there are things that seem to make sense with the many different health issues I have had since I was a younggirl, things my sisters have never had. My Mom said every time she took me to the Dr. they never got real answers as to why these strange things were happening to me. The eyes, the joints, chronic swollen glands in my neck, etc. My sister's got colds, I got "weird" things that could never be explained. I remember my mom telling the Dr. "If you tell me this is a virus, I'm going to hit you." Because evertime I went to the Dr. he would say "I think it' "some kind"
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.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/1/2005 7:56 PM (GMT -7)   
CWL...wow...speaking of Lyme's, that's where mine came from. it went untreated for 10 years and then was treated as acute new onset, then became antibiotic resistant. took 3 years of intensive therapy/chemo to rid it. was devastating.
Lyme's is No joke

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 9/1/2005 11:56 PM (GMT -7)   
dear momo,

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
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