nothing else to do?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/12/2008 1:38 PM (GMT -7)   
I'm not specifically diagnosed(possibly UCTD, possibly fibro, possibly arthritis) with anything although have been dealing with constant joint pain in my hands and feet since last December. I take percocet daily for it and has kept the pain to a minimum. I take NSAIDS when it flares up but my tolerance for them is very low. I seemed to have had another episode of pericarditis this last September and with it have been dealing with tachycardic events which has put me back on long and short acting beta blockers. Since then the pain in my hands and feet has increased greatly and am now barely able to get it under control(I now feel pain daily that doesn't go away but is somewhat tolerable). This same type of pain is in both of my knees now. I have also had loss of ROM (more so in one hand than the other(thumb and index finger area) )  and weakness since December and that too is getting worse now. All of my blood work is normal though. It seemed like my hands and feet were starting to puff but wasn't sure until my boyfriend pointed it out to me today. He also says theres a lot of heat coming from them. My internist doesn't think I need to see a rheumatologist for now as there is nothing on the blood tests and he says they'll do the same thing he is(NSAIDS and pain meds). Do you think I'm just having a bad episode and need to ride this out (whatever it is?) Or should I try and get into another rheumatologist? I'm really worried about my hands as I wake up in pain now in the middle of the night and need to work them to get them to feel better. Thanks for your input guys!
Cynthia

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/12/2008 1:56 PM (GMT -7)   

My tests have always been negative and I have RA..my hands and body often get hot to the touch when I'm having a flare..that is how my kids and hubby know I'm going downhill! As for seeing a rheumy? I rarely get pain meds and past the NSAIDS you generally move on the DMARDS and after that well it is then the biologics such as Enbrel which is where I'm at now.  I've been going to the same rheumy for I thought it was 4 years but no the rheumy told me yesterday it has been 3 years in October..sure seems like forever to me and none of my tests have ever been positve.  I slowly graduated from the NSAIDS, to DMARDS then to the Enbrel and now just trying to find something to get me comfortable.  I would go see one, you don't have to have a positive anything to have RA, your symptoms sometimes are enough.

 

Good luck!


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/12/2008 2:08 PM (GMT -7)   
thanks Momto3. The RA is what I'm wondering about as my aunt had it bad.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 11/13/2008 7:29 PM (GMT -7)   
You definetly should be seeing a rhuemy-and a good one that you trust.

Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/13/2008 10:58 PM (GMT -7)   
Well, I don't know what to do now as I talked with my internist today and really thinks it's early onset osteoarthritis. I guess I'll give it a chance for a couple more weeks if I can stand it and then maybe make a move to a rheumy. Does thart sound crazy? Actually our city is on fire right now and I'm trying to prepare to evacuate if need be! Oy!

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 11/14/2008 5:59 AM (GMT -7)   
Hi Nanda,
 
Oh wow...I hope you didnt get evacuated!!!
 
Nanda, what meds are you currently taking?  Just curious if you are on prednisone with the pericarditis episode you had.  I had the pericarditis twice...and now permanently on bisoprolol and propefenone, and for the most part...I have no chest discomfort or irregular beats.  Do they know what caused the pericarditis?  I am asking because according to my rheumy, it was RA related, but post traumatic stress can cause it too..and that's where I thought I fit in.  Now that the trauma is behind me...I havent had  pericarditis since 2004, (touch wood) lol.  Do you take meds for the tachycardia? I was unable to tolerate nsaids and/or dmards as well.
 
My blood tests indicated Lupus back in 2003, and I was re-dx in 2007 wth fibro instead.  When I first starting getting my symptoms of RA...the family doc did blood work...AND booked me with a rheumy. 
 
I hope you get some questions answered...and very soon.
 
Good Luck,
Diane
Fibromyagia, R/A, Diabetes, Atrial Fib, depression

folic acid, metformin, diamicron, bisoprolol, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin, methotrexate


Some people dream of angels, I held one in my arms


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/14/2008 12:17 PM (GMT -7)   
Hi Diane,
thanks for your thoughts. We haven't had to evacuate yet though we are on the edge of the evacuation warning area (one block away). I usually don't get much sleep but last night was the worst with the water dropping helicopters flying over all night long.(Thank God for them!) I have things packed and we'll move to my boyfriends sisters house if necessary or if the air quality gets any worse. Can't go outside as too much smoke!
 
I'm currently taking Nambumetone(NSAID), colchicine, and Percocet for the pain and inflammation. I had the actual flu a year ago from last January. I was in excruciating pain and severe fever for 3 weeks, this was followed by bronchitis for 4 more weeks. They possibly think that caused it.I took massive amounts of prednisone for the pericarditis the first time as prescribed by my first cardiologist. I dropped him when he literally through his arms up in the air one day after having me on 80 mgs of prednisone for 6 weeks and said I don't know what to do with you shocked . I had every reaction from the prednisone except it didn't completely stop the chest pain.( the one good thing it did was that my hair temporarily stopped falling out) My second cardiologist immediately tapered me off of it as he feels that it can increase your chance of it returning. They were never sure whether I truly had pericarditis as the effusion was so small and blood work once more didn't confirm (although the echo and eeg had indications of it )except that the effusion completely went away in April and then when the chest pain and palps started again this September it was showing once more on the echo.
 
My second cardiologist sent me to a rheumatologist who initially diagnosed me with UCTD. As I said, It doesn't show on the blood work but I seem to have all of these symptoms that don't add up.
 
Anyway, back in April when the pericarditis cleared up, I was able to get off of the blood pressure medication and beta blockers as my pressure and heart rate returned to low normal for me. Now since September, I'm back on a long acting beta blocker (toprol)  to keep it relatively low and a short acting one when I go into these tachycardic events that won't stop. For those I take propanol which generally slow it down enough. Now my internist wants me to try lorazepam for them instead as he's convinced they're anxiety related even though they come on at random times rolleyes . I'll try it though. He knows I get pissed if he starts going into the "it's all in your head" stuff, so generally he treads lightly with that. I understand though that stress from pain can cause an overabundance of adrenaline to surge through the body, so that's why I'm willing to try it. I hate having to convince a doctor that "no, the pain is real and no, it's not from stress." Not to toot my own horn but I will: I'm a smart woman and I've gone through enough crap in my life to know when pain is physically manifested as opposed to mentally manifested.
 
The reason he's thinking this is osteo as opposed to RA is because he's not seeing extreme redness and swelling in my joints. I just wonder though as this stuff has been so symmetrical for me and I didn't think that happened with osteo. I also know that pericarditis is more common with RA sufferers. I just remember how deformed my poor Aunt's hands were and how they progressivley got worse. I know that intially osteo and RA are treated the same, so for now maybe I'm okay? What are bisoprolol and propefenone?
thanks,
Cynthia

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 11/14/2008 3:33 PM (GMT -7)   

Hi Nanda

I think the bisoprolol and profefenone is the canadian version of the beta blockers you are taking.

Here is a quick tip on pericarditis.  If you are having that "sensation" again...you know...the discomfort in the chest, sometimes getting short of breath with little excursion, and pain running up to your neck (I thought I just had a respiratory infection at the time)

If it is truly pericarditis...when you are sitting....lean forward...with pericarditis, when you do that...it gives immediate relief in your symptoms.  Now when I get that heavy, painful chest (very seldom now..thank God)  I do that...just to satisfy myself that it isnt the pericarditis coming back.  The first time I got it....like I said..thught I was getting bronchitis or chest infection...I ignored it...as I was going through an intense grief at the time...then one morning..came the vomiting...off to the ER...and then into ICU.  I had a very severe case of it..from ignoring it, and how I didnt have aheart attack..they dont know. My heart rate was so low that the nurse couldnt check my pulse..had to go on the monitor.  This is where i learned the trick of leaning forward while sitting...relief can mean pericarditis.  The fear of an unknown illness..especially when it's the heart...and your memory of your aunts condition...I think that could put you in high anxiety.  Heart palps and chest pain are common in those attacks.  I hope the lorezapam will help you.  My doc put me on xanax..it's another anxiety med along the same lines as lorezapam I think.

Perhaps there is no redness or swelling in the joints because you are at the early stages of one of those diseases?  Just a thought.

I hope one of these doctors keep monitoring your bloodwork..especially since you have a relative with RA. 

I am still hoping you dont get evacuated...but glad you have somewhere to go if you do.  You must live in California?  Saw something on the news this morning about that. But only a block away??!! shocked    

 

Hugs

Diane                                                                                                                           


Fibromyagia, R/A, Diabetes, Atrial Fib, depression

folic acid, metformin, diamicron, bisoprolol, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin, methotrexate


Some people dream of angels, I held one in my arms


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/15/2008 5:43 AM (GMT -7)   
Hi Diane, thanks for the response! That is exactly why they think also it's pericarditis as thats how I get relief from it! (Leaning forward that is.) If I'm on my back it feels like an elephant on my chest, sit up and forward and voila, relief.I had another tachycardic event yesterday and tried  the lorazepam, gave it some time but nothing... popped the propanol and bam back to normal heart rate! rolleyes
 
 Yup, I'm in Santa Barbara. It cracks me up about how the news is calling it a "wealthy enclave". You'd think I ate Grey Poupon and drove a Rolls Royce all the time tongue .(it was a commercial here in the U.S.) I'm lucky that I can afford this funky apartment that I live in, especially since I was laid off last April. A lot of the homes were owned by wealthy people but I also personally know that there were also teachers, basketball coaches,physical therapists, artists,office clerks, many of whom didn't own but rented and now lost everything. And whether you're wealthy or not, losing your home like that is just plain painful. I remember when we had another fire here, I helped redesign the home of one of the people who lost theirs. She was a teacher and her husband had recently passed away. What was most devastating to her was the loss of all of the photos of the two of them together.My heart goes out to all of the latest victims! It is true the majority of the working class lives in town where I am and so far we have been spared but as the saying goes: there but for the grace of God go I....
Blessings,
Cynthia

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 11/17/2008 6:54 AM (GMT -7)   

Morning Nanda,

I tried to respond to your post Saturday, but it wudnt let me!!   shocked    I felt so bad for that poor woman losing her family photo's cry

I hope some of these people thought ahead and kept negatives, and back-ups for their home  vhs/dvd's, you are so right...that is the worst thing that could happen other than losing a life in a fire.  Things can be replaced...but not memories.  I have a little fireproof safe that I keep negatives in...and back up copies of videocam dvd's, because we have a woodstove, and that has always been my biggest fear..losing those!

I am curious...what is the difference with tachycardia and a/fib?  A/fib is when the heart beats irregular, and the blood flow doesnt move properly in the upper and lower chambers of the heart.  Sometimes when I would get an episode, (its been a long time now TG), a couple of xanax would take it away...so I figured that it was the anxiety causing it.  When that doesnt work...and the meds dont help..then I go to the ER.

I have been thinking of you all weekend, with all the updates on those frightening fires going on where you are.  I pray you are safe as I type this.  Please let me know..here or the fibro board!!

 

Gentle hugs,

Diane

 


Fibromyagia, R/A, Diabetes, Atrial Fib, depression

folic acid, metformin, diamicron, bisoprolol, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin, methotrexate


Some people dream of angels, I held one in my arms


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/17/2008 9:01 AM (GMT -7)   
Hi Diane,
Good to hear from you! The fire is over 40 percent contained now but  there have been 250 homes lost so far, I believe. I'm so grateful for my funky little place right now!
 
The tachycardia is when the heart goes faster than normal. Usually mine is around 110 to 125 when it gets going which from what I know isn't as high as it can be but it's dang uncomfortable when it happens. I get the A/fibs(irregular and fast) also but since I've had irregular heart beats for some time they don't bother me as much as just the real fast heart beat. Supposedly the fast heart beat doesn't hurt but it does me! It feels like  an increase  in the intense chest pressure from pericarditis! sad
 
Fortunately, I haven't had an episode for two days, so am crossing my fingers(okay maybe not doing that as that hurts rolleyes ) that they're going away. Right am only dealing with the pain in my hands, feet and now knees! It's getting to me and I'm trying real hard to not let it get me down. What's keeping me going right now is a singing class that I've been taking for the last 10 weeks. I never could sing a lick in  all of my 50 years and a dear friend was starting up one of her classes. My boyfriend thought it'd be good for me. So, terrified and mortified I went and I couldn't imagine a more wonderful experience! There are 5 women in the class and we have completely bonded(they were also terrified!). Our lovely teacher is our own personal hero: she is not only battling lupus (including several kidney transplants) but also Nephrogenic Systemic Fibrosis (basically her whole body is hardening) and yet she has guided us into loving to hear our voices sing out loud( she also has a voice like an angel)! In fact tonight we're having our finale concert for family and friends! My solo is "One of Us" by Joan Osborne. Wish me luck! (Sorry for my rambling!) But I also want  you to know that I'm jealous of your woodstove! I actually miss having one as much as it was a lot of work!
love and light,
Cynthia

ericsmom
Veteran Member


Date Joined Jan 2007
Total Posts : 1042
   Posted 11/17/2008 9:17 AM (GMT -7)   

Hi Nanda

Phew!!  What a relief they have contained the fires.  What we saw on TV was just incredible and unimaginable!

I hope you continue to not have anymore episodes of the tachycardia.  Perhaps the fire all around you and your neighbours had that affect on you.  

One of Us..I love that song!!!!!  I bet you will sing it wonderfully!!!  And God Bless your teacher!!!  I have heard of Nephrogenic Systemic, what a horrible thing to have!!

Good Luck tonite!!!!!!!!!!  Sing your little heart out smilewinkgrin

 

Hugs

Diane


Fibromyagia, R/A, Diabetes, Atrial Fib, depression

folic acid, metformin, diamicron, bisoprolol, fenofibrate, pantoloc, wellbutrin, propafenone, ibprofen, warfarin, methotrexate


Some people dream of angels, I held one in my arms


Nanda
Regular Member


Date Joined Aug 2007
Total Posts : 101
   Posted 11/17/2008 9:26 AM (GMT -7)   
Hi Diane,
I'll be thinking of all of you wonderful souls here tonight when I sing that one!
God Bless,
Cynthia
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 3:15 AM (GMT -7)
There are a total of 2,736,258 posts in 301,364 threads.
View Active Threads


Who's Online
This forum has 151454 registered members. Please welcome our newest member, rmk1990.
133 Guest(s), 4 Registered Member(s) are currently online.  Details
Heatheranne87, Stetsonva, Steve n Dallas, gilly2


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer