second opinion from a new Rheumy?... need advice..lots of pain

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karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/4/2008 9:27 AM (GMT -7)   
I have been seeing my Rheumy for about 1 year and he swears I have Fibro. However, I have back paid, stiffness in the morning etc. Well it went away some while I was on the muscle relaxers he gave me but I was also on Entocort (not supposed to help with joints but maybe it did) cause now I am full pain, my hands my back are worse. it never went away just got a little better.  (I am off all steroids now and when I was on pred I felt wonderful, my joints stopped hurting completely)
 
I feel like an older person. I am 32 years old. I tool Tylenol arthritis this morning and I am still hurting. Getting up out of chairs, stairs are all difficult. I can't even walk very fast.
 
Yesterday I broke down and cried and my husband said to see another Doctor and I am not sure what to do. I saw my Rheumy because he was in the same practice as my GI.
 
any ideas how to pick a rehumy for a second opinion? Should I continue with my current one? He took Xrays when I was thinking I could have AS. I looked into the symptoms and I fit some. the xray was of my back and he said I have some arthritis.
 
sorry for the whinny rant... I am so hurting and I knew someone here would get it. this ruined my whole weekend....
 
Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/4/2008 9:32 AM (GMT -7)   
Karendee I am sorry you are hurting so bad. I do think you should get a second opinion. I can tell the difference between my fibro and my arthritis pain. My fibro pain is a burning type of pain, and the arthritis just aches and aches. I would push the issue, no one should have to suffer as you are. (((GENTLE HUGS)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/4/2008 9:42 AM (GMT -7)   
thanks Nanners, you are always a big help!!!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/4/2008 2:46 PM (GMT -7)   
Sorry to hear your pain. Both RA and Fibro can benefit from taking vitamin E and C. I hate to see you suffer and if there is any help from vitamins, it is worth a try and fairly harmless. For recommendations see: http://www.wellnesscoalition.com/go/enewsletter/health-conditions?id=60

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/4/2008 2:51 PM (GMT -7)   
I always feel a GOOD doctor should welcome a second opinion. Do you know anyone who is a nurse in the hospital you go to who you could ask for a reference? That might be a good place to start, or ask friends and neighbors. Once you start talking, soon enough you find someone who knows of someone who has a similar problem and sees a Rheumy and then you have a some one to ask about their doctor, or who they have seen in the past.

The main thing is, you have given it a year, and you aren't feeling any better, its time to start looking for another option, or at least confirmation that you are on the right road.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


bowlies
Regular Member


Date Joined May 2007
Total Posts : 69
   Posted 8/4/2008 3:05 PM (GMT -7)   
I would be curious to know how your gut is doing. Often with Crohns Disease if your joints are not doing well then your gut may be inflamed as well. It can also be that your joints can hurt and your gut may not even thought there may be inflamation present.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/4/2008 6:12 PM (GMT -7)   
Karendee,
Im sorry you are suffering so. I would want a second opinion too. Like Zanne said, ask a nurse, medical staff if they know of any other Rheumy in your area (they can be a wealth of infromation).
My Rheumy mentioned Fibro to me and for months thats what I thought I had, until he did scans and xrays that confirmed AS.
Good luck and get to feeling more 'normal' soon.
Jo

Chasity102304
Regular Member


Date Joined Nov 2007
Total Posts : 165
   Posted 8/4/2008 6:36 PM (GMT -7)   
Are you having joint pain or muscle pain? Fibro is in the muscles from what my drs have told me anyways and the reading that I have done. I was dx'd in 2003 after I started having numbness in my limbs and muscle spasms that would bring me to my knees in agony! Joint pain may just be related to the Crohn's and not nessecarily something else. I would def get a 2nd opinion and keep at it until you are better!!!!!

GOODLUCK!
Fibromyalgia DX March 2003
Crohn's DX Jan 2006 (Symptoms since 96-Misdiagnosed as "female" problems-Major flare during pregnancy in 05 which lead to DX)
1st resection July 2007
Currently on Remicade/8 weeks


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/5/2008 7:01 AM (GMT -7)   
thanks everyone!!!
Keeper, I will try the vitamins.... can't hurt

Zanne, I will ask for recommendations on second opinions...good idea

bowlies, My gut is the best it has ever been, I am on Humira now and it is like a wonder drug for me.

SydneyJo, I am afraid of AS too, All I got was X rays and Keah who posts here and has AS said once that X rays might not bee good enough that a scan might be needed (not an exact quote). My Rheumy won't do any scans.

Chasity102304, I just don't think it is fibro, my neck and back hurt so bad. I can't squeeze anything with my hands. any exercise puts my joints in agony but my muscles feel fine.

I am looking for a new Doctor this week. I plan to make an apt as soon as possible. I know CD can cause joint pain but when Tylenol does not help it I need something. I don't care if a new doc gives my hypnosis to not feel the pain. lol

I also have cracking nosies when I move my neck that I can hear, sounds like bones grinding. It feels that way in my back too... can't hear it though

It just seems if Prednisone removed my joint pain 100% then how can it be fibro? I did not think Steroids helped fibro but I could be wrong.

thanks for all your support. I knew all of you would understand!!!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/5/2008 1:55 PM (GMT -7)   
Well, I made an apt with a new Rheumy, I am having my labs sent over, her office suggested them. I feel like my current Rheumy saw Fibro right away and never would look at other possibilities...

thanks for all the advice everyone!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/5/2008 6:25 PM (GMT -7)   
Thats great Karen, hopefully this Rheumy will look into more testing and a proper diagnosis for you. Keep us posted and take care of yourself. Jo

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/5/2008 6:50 PM (GMT -7)   

thanks Jo!

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and now new med Clonazepam starting 7/18/08

 

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