It's time to formally introduce myself......

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Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/6/2008 3:21 PM (GMT -7)   
I went to the Rheumatologist today and was formally diagnosed with Fibromyalgia.  Part of me wants to be happy that I know what's wrong with me, and part of me wants to sit and cry. cry   I have been struggling with Crohn's Disease for almost 3 years, and now this on top of it.  I've been out of work for 4 weeks because of the pain, fatigue, etc.
 
The Rheumatologist wants me to start with weight loss, exercise, and Physical Therapy.  I start Physical Therapy on Monday.  How on earth do you exercise when it's hard to walk? rolleyes  
 
If exercise, weight loss, and PT don't help, then he said there are meds we can try.  I have to be careful with certain meds because of Crohn's Disease.  It's like a double-edged sword.  Right now I just take Tylenol.
 
Thank you so much for your time, and I look forward to getting to know all of you.  Blessings, Julie :-)
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 11/6/2008 3:53 PM (GMT -7)   
Welcome Julie
Make sure the therapist knows you have fibro. the one i went to gave me some light massages before and after the therapy. there are several others on here that have chrons Im syre they will be by later to welcome you. This is a great forum to be on.
Leeann

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17096
   Posted 11/6/2008 4:02 PM (GMT -7)   
Hi, Julie, and welcome again!  We are here to help you.  Have you checked out the Fibro 101 thread yet?  It's the second thread on the forum.  There is a lot of info about fibromyalgia and it will help you understand this illness.
 
I, too, have Crohn's and have been able to take ibuprofen and Tylenol for pain.  After many years of taking ibuprofen, my internist put me on Prilosec just to make sure to protect my stomach.  I'm also taking malic acid/magnesium supplements.  There is a link about them in the Fibro 101 thread.  I started these last December and they have helped me a lot.  Read about them and see what you think.
 
Hot showers and moist heat really help with fibro.  Many use a Bed Buddy for moist heat.  You heat it in the microwave.  They sell these at Walgreens and other places.  You have to keep moving with fibro.  If you sit or lay too much you will be stiff as a board.  There are gentle stretching exercises in the Fibro 101 thread that you do sitting down.  These really help.  Walking is a wonderful exercise, along with water exercise.
 
I have lost 85 pounds and haven't gained any weight in 11 years.  I feel so much better now.  I count carbohydrates.  If you want to know more, just email me and I'll be glad to share what I have done and am doing.
 
You know you have come to a good place, since you have been on another HealingWell forum.  I'm glad you popped over here and I know you will get a lot of help and support here.  Hope to hear more from you.
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/6/2008 4:18 PM (GMT -7)   
THANK YOU from the bottom of my heart for the warm welcome!!!

Sherrine, both the Rheumy and my GI said I could try Ibuprofen because the Tylenol isn't helping much. I'll check out the Fibro 101 thread now. Blessings! Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17096
   Posted 11/6/2008 4:37 PM (GMT -7)   
Julie, when I take ibuprofen, I take 600 mg at a time.  Taking 200, or 400 didn't do anything for me.  The maximum amount of ibuprofen you can take safely is 2,400 mg a day.  When I'm in a flare I'll take 600 mg. four times a day (every 6 hours around the clock).  Be sure to take ibuprofen with food!
 
The maximum Tylenol that you can safely take is 4,000 mg.  When I'm in a flare I will take 1,000 mg in between the doses of ibuprofen.  Thank goodness I don't need to do this all of the time but I have been using this technique for 21 years and have managed the pain so far.  I still have pain but I'm in control and it doesn't control me.  By the way, just taking Tylenol never helped me either.  When I tried that, I could barely get out of a chair!  Hope this helps you.
 
Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 11/6/2008 4:40:19 PM (GMT-7)


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/6/2008 5:17 PM (GMT -7)   
Sherrine, thank you for the advice. It is so helpful! My GI was hesitant to have me take ibuprofen, because he doesn't want the Crohn's to flare, but he said if I start flaring, to back off/stop. On an unrelated note, how is your Crohn's? Do you take meds for it? Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17096
   Posted 11/6/2008 5:28 PM (GMT -7)   

My Crohn's has been under control for quite a few years.  I had to have my colon removed but haven't had any real problems with the small intestines.  Because of this, I'm not on any medication for it right now.  But, in the past I took a lot of Prednisone, Azulfidine, Librax, and Flagyl so I know the drill!  I'm really blessed right now...only get stuff like iritises, etc. because of Crohn's.  Thanks for asking.  Hope you are doing good right now.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/6/2008 6:43 PM (GMT -7)   
Sherrine, that's wonderful news! I wish you nothing but continued remission with Crohn's......:-) Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Green Grove
Veteran Member


Date Joined Oct 2008
Total Posts : 2424
   Posted 11/7/2008 10:32 AM (GMT -7)   
Hi Julie, it's nice to meet you:)
Much Love, Hugs, Peace & Comfort :)
Sam
 
God Bless Each & Every One Of You :)


jhawkfan
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 11/7/2008 7:51 PM (GMT -7)   
Hi Julie, Welcome! I was told to start on a 100 carb a day diet and no yeast and it has really, really, helped. I have also lost 53 pounds. I could barley move when I started. I walked to the end of the street and back and I am walking 3 miles a day. Please feel free to e-mail me for further details on the diet. My doctor also gave me two no-yeast cookbooks I could give you the names of. Please know that although this is a hard illness to live with, we can all help each other and the more you know about Fibromyalgia, the better. I wish you the best, Gentle Hugs, Sheri

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/8/2008 4:09 AM (GMT -7)   
Thank you all for the warm welcome! Blessings, Julie:-)
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/8/2008 7:24 AM (GMT -7)   
Julie, fibro is a bittersweet dx. It's a relief to know your enemy but it would be better if your enemy wasn't so hard to fight. You know we are all here for you to help you learn how to deal with this DD.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin

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