After all the pain:Finally diagnosed..with Fibromyalgia

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Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 5/30/2009 11:25 PM (GMT -7)   
Hi, I've been a regular here at the Chrohns area - wrote a topic about extreme unexplained pain that I had been having. My docs threw around a bunch of things it might be, and finally I was hospitalized for all the extreme pain I was in and after a bunch of tests, they finally just diagnosed me with Fibromyalgia. I go through EXTREME amounts of pain. I cant function without painkillers right now - "MS Contin" twice a day, and "Oxycodone" for breakthrough pain (which I have a lot of right now).

Anyways, I'm not doing well with this at all. The meds dont help yet, I'm in the process of transitioning betwen peds and adult docs and I just dont have one reliable doc I can turn to right now...I'm just so confused...about EVERYTHING! For those out there with Fibro, do you go through extreme pains and whats done about it?? They gave me Neorontin but I dont feel the effects of it yet. When the pain hits (which is all day without some sort of pain med or sleep) I am just stuck in bed curled up like a ball moaning and/or crying. I would appreciate ANY advice right now. http://www.healingwell.com/community/emoticons/confused.gif

Thanks so much,
Joslin
Dx]

<B>Currently battleing: Auto-immune disorders: Colitis/IBD -Pouchitis; Extraintestinal Polyarthritis; Fibromyalgia; anxiety disorder; mild asthma (chronic bronch); Sinusitis & Allergic Rhinitis; & Chronic pain




<FONT color=blue>Neurontin 300mg 3x daily for Fibromyalgia;
Metronidazole 250mg 3x daily for Pouchitis;
Cymbalta 60mg;
Klonapin(as needed throughout the day),
Famotadine 40mg;
QVAR 2 puffs 2x daily for astma

MS Contin 40mg 2x daily
Oxycodone 10mg 2 every 3 hours as needed for breakthrough pain

<FONT color=orange>Jessi


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 5/31/2009 6:52 AM (GMT -7)   
Hi Joslin, I welcomed you on another thread but welcome again. I'm sorry your in so much pain. Moist heat helps many of us with the pain. You can buy bed buddies at drug stores that you heat in the microwave, or you can make your own by filling a long tube sock with uncooked rice and tying the end shut or you could sew it shut and putting them in the microwave to heat, hot showers, baths, hot tub or moist heat heating pads. I find that even dry heat from a heater helps me, I keep a little one by my side every morning til it gets too hot.
 
Please read the fibro 101 thread, second on the first page, it contains lots of great info and stretching exercises. We have to keep moving even when we don't feel like it. I know it sounded crazy to me at first too but it is true.
 
Read, ask questions and we are here for you.
 
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


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 5/31/2009 9:58 AM (GMT -7)   
Hi, Joslin, and welcome!  What a pretty name!  I haven't heard that name in ages.
 
Fibromyalgia will wax and wane.  Sometimes you hurt sooo much and other times you feel better.  I've had fibro for 22 years and haven't been pain-free but I'm not expecting that either.  Some have more pain than others.  I think I'm more in the middle. 
 
I've had some pretty extreme pain at times but I'm not willing to take the "high powered" medications.  But, I do take malic acid/magnesium supplements and they do help me with the pain and fatigue.  They don't work for everyone but many have had help with this.  There is a link in the Fibro 101 thread all about them.  I also take ibuprofen with food and extra strength Tylenol. 
 
Many with fibro have a vitamin D deficiency and that can cause pain and fatigue, too.  I'm presently taking 3,500 IU of D3 a day to get me in the normal ranges for vitamin D.  You might ask your doctor about this.
 
You do need to keep moving with fibromyalgia.  The more you lay and sit, the more painful and stiff you will become.  You will learn how to pace yourself to get things done but you can't do things in the same time frame as you used to. 
 
There is a link on the Fibro 101 thread that has some good stretching exercises and they really do help.  You should start out with them and then try to walk more.  Walking is a good exercise for you and is a gentle exercise, too.  It you have access to a pool, water exercising is good too.  You need to move those muscles but you also need to keep the exercises to gentle ones.
 
I am so glad that you popped over here and joined in.  Do some reading and ask questions.  We are here to help you.  Hope to hear more from you soon.
 
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


cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 5/31/2009 10:21 AM (GMT -7)   
Hi Jessie.

I have IBD as well and was recently diagnosed with fibromyalgia and analyking spondylitis. I few years back I was in extreme pain, that was unexplained and got a little better, but these pain issues came back with a vengeance. At the time I was taking morphine pills as well, and that didnt even help. I don't know if that was fibro as well, but I was sent to go through biofeedback therapy, as I was diagnosed with pelvic floor dyssenergia (not sure I really had that-think they had no idea what to do with me)
Anyway, I am glad they sent me there bc I learned how to relax my body and abdominal muscles, which I am sure can help with IBD...relaxing any way helps I am sure.

I don't know if that would work, but I used it when the pills didn't work.

I am sorry you are in pain. I related with your post because I am overwhelmed as well...I was in a lot of pain last night, but sleeping actually helped a little. I know IBD can be so tough and life altering...adding even more can be very overwhelming. I try to stop thinking about all the names of things and diseases that affect me and remember that it is still my body and I need to listen to my body and what it needs.

I Love the book A New Earth. It really has helped me try to step back from the pain in my body and my constant thoughts.

Hope you get your pain under control and feel less overwhelmed soon. I am right there with you.
candice
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 6/1/2009 1:04 AM (GMT -7)   
Cns, you take Remi infusions too? How do those work for you??
Dx]

<B>Currently battleing: Auto-immune disorders: Colitis/IBD -Pouchitis; Extraintestinal Polyarthritis; Fibromyalgia; anxiety disorder; mild asthma (chronic bronch); Sinusitis & Allergic Rhinitis; & Chronic pain




<FONT color=blue>Neurontin 300mg 3x daily for Fibromyalgia;
Metronidazole 250mg 3x daily for Pouchitis;
Cymbalta 60mg;
Klonapin(as needed throughout the day),
Famotadine 40mg;
QVAR 2 puffs 2x daily for astma

MS Contin 40mg 2x daily
Oxycodone 10mg 2 every 3 hours as needed for breakthrough pain

<FONT color=orange>Jessi


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2009 4:47 AM (GMT -7)   
Glad you found the fibro forum, Jessi :-).

btw, I did write a long reply to your thread on the Crohn's forum, but my screen froze and I lost the whole thing... and then we were hit by a spammer.... so I haven't had a chance to rewrite it. In short, though, I don't think you're *quite* right in your understanding of AI (but I could be wrong) and I think the best thing would be for you to do some reading on your own, until you come to an explanation and understanding that seems right for you. We need to be at peace with what's happening in our bodies, and some of that peace can come through knowledge.

I feel nervous about some of the explanations that are put forward on amateur forums like ours. They can *sound* good, but I am not always confident that they are 100% correct, and that's why I suggest you should find some reputable books and websites and read up for yourself.

I hope you can get some relief from your pain soon.

I.
Co-Moderator Crohn's Forum.

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