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bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/15/2009 2:58 PM (GMT -7)   
I had a first appointment with a new Rheumatologist this morning, and she believes I have Fibromyalgia in addition to the Crohn's.  I can't say I'm happy about it, but it's such a relief to have someone listen and say "I think I know what's wrong, and I think I know how to help." 
 
She thinks I've got three different things "muddying the water."  One, the fibro.  Two, a mechanical problem that is pulling my knees and neck out of alignment and causing pain.  Three, inflammation in the smaller joints causing stiffness and pain.  And, she thinks I might have sleep apnea because of my weight.  I'm scheduled for a sleep study, and if that turns out to be a problem we'll treat it and hopefully improve my sleep.  She's given me some samples and a prescription for Lyrica.  She's given me a prescription for physical therapy to help my neck and knees.  And as a final step she wants me to take a short course of pred a right before our next appointment to see if that makes a difference with the small joints.
 
I'm really excited to have this new treatment direction.  Hopefully, this will make the difference and I'll start feeling better soon.

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 1/15/2009 4:23 PM (GMT -7)   
be -

Good to read your post. It would be nice to have a doctor actually sit and talk for once. Be sure to follow up. I am curious as to what all he/she thinks may help you, especially with the joint swelling. My fingers are starting to look funky, like in that arthritis commercial.

-Les

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 1/15/2009 6:14 PM (GMT -7)   
Hi I am glad that help is started for you and hope you do good with all these things but wow you sure have alot going on there. Best of luck and let us know how things are going. Sounds like your Dr. is really getting on board. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/17/2009 3:16 PM (GMT -7)   
HI there
I too have been recently DX with Fibro( 6 mths ) and to tell you the truth it is not good
I am in constant pain
My legs and everywhere else ache all the time
It sure sounds like you are Blessed to have the good doc ..........
So much going on with you
They say that once you get one immune problem another will follow
Fun eh
I do hope you get the approprite tx for this and may I suggest visiting the fibro forum
Lots of good advice there

Take care

LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/17/2009 3:24 PM (GMT -7)   
Many people with fibro have a sleep problem. If you can help the sleep problem, the pain may get better.

Good luck.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/17/2009 5:11 PM (GMT -7)   
I do have Trazadone for sleeping also am on Valium with the trazadone I sleep a good 6 to 8 hours solid

I am afraid that with me and I believe others that sleeping is not only the problem
I do think that a good sleep is importantno matter the DD

YOU honestly feel like you have been hit with a truck well at least I do
I was on 240 mgs of Morphine
Didnt touch the pain have switched and am going to try Lyrica ..........
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/17/2009 6:22 PM (GMT -7)   
She started me right away on Lyrica, and it really seems to help.  I took it for the first time on Thursday evening, and I slept for 10 hours that night.  I actually woke up feeling rested.  I haven't felt that way in months.  And I was still achey, but not as bad as I was the day before.  By the end of the day Friday I was tired and sore again, but just those few hours of feeling not-so-terrible were amazing.
 
I took it during the day today for the first time.  It left me feeling kind of dippy- a little tired, a little dizzy, generally off.  If I know I'm not going anywhere I'll continue to take it during the day, but if I have to drive somewhere I'll skip it.  My doctor said that some people just can't handle taking it during the day, and if I can't that's OK.  I'm really tired again tonight- I feel like I could go to bed right now- but the achiness is mild and ignorable.  I don't want to push too hard, but if I feel good again tomorrow, I think I might try to get on the treadmill or exercise bike for a few minutes.  Nothing crazy, but 10-15 minutes movement would be good.
 
I don't think I really have sleep apnea.  I live by myself, so there's no one around to tell me if I snore.  But I wasn't last November when my mother came to visit, and I'm no fatter now than I was then.  My weight and interrupted sleep are what make her suspect it.  I don't mind doing the test, and if it turns out there is a problem, well that's one more thing we can treat and hopefully improve.
 
I took a peek in the Fibro forum earlier this week, but I haven't really explored over there.  I'll have to check it out again soon, when I'm not so tired.

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 1/17/2009 6:25 PM (GMT -7)   
Texan with Crohn's said...
be -

Good to read your post. It would be nice to have a doctor actually sit and talk for once. Be sure to follow up. I am curious as to what all he/she thinks may help you, especially with the joint swelling. My fingers are starting to look funky, like in that arthritis commercial.

-Les
Les,
 
Where in Texas are you?  I'm in Houston.  If you're in the area and looking for a Rheumatologist I'd be happy to pass her name on to you.
 
Becky

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 1/18/2009 9:55 PM (GMT -7)   
Sorry about the DX of Fibro.  I feel your pain every day...I have it too.  Try taking a hot shower ,preferably a soaking bath if possible upon waking in the morning and do some gentle stretches to loosen up.  You can wait for the pain killers to work while in the bath and by the time you towel off you'll be ready for your exercise.  Above all else...keep moving.  The more you sit around the worse the muscle knotting gets!  Listen to your body...when it says I am tired...you best go take a nap or the Fibro WILL show you who is boss.  It also helps to try and stay on a regular schedule each day (including weekends) so that hopefully your sleep cycles don't get interupted.  Where are your most irritating trigger spots?  Mine are in between my shoulder blades, my hands and of all places my big toe.  Sometimes my toe eyes  hurts so bad I could shoot it right off my foot!

Jeny
Regular Member


Date Joined Feb 2004
Total Posts : 437
   Posted 1/19/2009 11:39 AM (GMT -7)   
I'm sorry to hear of your pain. I wanted to post to inform everyone of my experience with Fibro. This may not be the case for any of you but I feel it's important to keep everyone knowledgable of the possible side effects of drugs.
I was on Remicade for almost 6 month when i was dx'ed with Fibro. I went on a lot of drugs for the Fibro...Celebrex, Xanaflex, pain meds everyday. I was walking with a cane on some days. I was only 28 yrs old at the time. I was seeing a Chiropractor once a week. Spending a fortune on this. However, my CD was getting better with the Remicade. The Fibro seemed to get a lot worse after infusions.
Well, to make a long story short, I found that the Fibro dx was incorrect because about 3 months after I stopped Remicade (became allergic after a year on it) the Fibro was completly gone. Don't get me wrong, i still have the occasional arthritic pain and such...but not Fibro. Stopped all the meds i was on and haven't touched them in 4 years.

Hope this info helps someone.
-Jeny

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/19/2009 5:29 PM (GMT -7)   
My doc thought I had sleep apnea, based on many things including that I snore. I didn't believe that I had a sleep problem. Most nights I go to bed and sleep like a log and can sleep for 8-9 hours on weekends.

It turns out I don't have sleep apnea but I do have an alpha EEG anomaly sleep disorder. This means that you get alpha wave (awake) intrusion in your delta wave sleep. The sleep technicians could not tell if I was actually asleep based on their readings. I am not getting a restful night's sleep even when I think I am. Sleep meds don't help me with this problem. This particular sleep problem is very common in people with fibro.

I'm trying to say that even if you think you are sleeping well, you may not be.

Atticus1
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/7/2011 10:57 PM (GMT -7)   
bektold said...
Texan with Crohn's said...

be -

Good to read your post. It would be nice to have a doctor actually sit and talk for once. Be sure to follow up. I am curious as to what all he/she thinks may help you, especially with the joint swelling. My fingers are starting to look funky, like in that arthritis commercial.

-Les
Les,


Where in Texas are you? I'm in Houston. If you're in the area and looking for a Rheumatologist I'd be happy to pass her name on to you.



Becky


I'm in Houston, too. Would you mind passing me your rheumatologist's info? I haven't been to see anyone yet, but tested in the 60's for rheumatoid factor.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/8/2011 7:05 AM (GMT -7)   
Atticus1 this is a two year old post and Bektold has not been seen on the forum since January. You might try emailing them. Click on the envelope to the left of their name. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

Atticus1
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/8/2011 7:37 AM (GMT -7)   
Sorry. I couldn't find another way for contact. The envelope is gray'ed out.
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