Unexplained pain finally DIAGNOSED!!!

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Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 5/30/2009 3:40 PM (GMT -7)   
I dont know if some of you remember, but a few months back I wrote a topic here about extreme unexplained pain that I had been having. My docs threw around a bunch of things it might be and had settled on "opioid dependency" which was absoloutely ridiculous for me because I am the type of person that will sometimes go through pain just so I dont take painkillers..so I DONT get depended. Anyways, I had a whooooole conversation with a buncha ya about that and turns out - thats NOT what my pain is from!
I was hospitalized - FINALLy for all the extreme pain I was in and after a bunch of tests, they finally just diagnosed me with FIBROMYALGIA !! I know, its just a way of docs saying "I really dont know what you have cause we cant find anything in your tests so this is it." But, Fibromyalgia is no joke. 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).
Another thing - my GI docs took advantage of me being in the hospital, and had me scoped. The biopsies actually DONT show that I have Crohns Disease as of now. It shows Pouchitis along with my bit of Colitis left (I've had my colon completely removed). But my doc says that for now, with my symptoms, that STILL does NOT rule it out completely. I'll cross that bridge when I come to it.

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! Does anybody have Fibromyalgia? Do you go through extreme pains and whats done about it?? I would appreciate ANY advice right now. http://www.healingwell.com/community/emoticons/confused.gif

Thanks so much,
Joslin
Dx w/ UC 2000
J-pouch surgeries in 2002 - colon removed except for last tiny part of sigmoid & rectum which keep inflaming;
Currently battleing: Auto-immune disorders: Crohns-Colitis/IBD & Crohns-related arthritis; anxiety disorder; mild asthma (chronic bronch); & Chronic pain
Remicade once ever 4 weeks
Methadone 5mg 2x daily(for Chronic pain); Cymbalta 40mg; Klonapin(as needed), Famotadine 40mg; QVAR,

Jessi


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/30/2009 3:51 PM (GMT -7)   
Welcome to the fibro club, Jessi. Did you know that there's a fibro forum here at HealingWell? Just scroll down on the "forum quick jump" menu until you find Fibromyalgia.

It might interest you to know that the Mayo clinic (I'm told) has found that those of us who were on high doses of steroids in their teens are more likely to develop fibromyalgia. I know I spent much of my teens on very high doses of pred; did you?

Sorry about your pain.

Ivy.
Co-Moderator Crohn's Forum.

New meds thread


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 5/30/2009 3:56 PM (GMT -7)   
Yes, I definitely did Ivy. But i had no idea that that had anything to do with Fibro. I have an auto-immune dissorder. Cause of that I've had Ulcerative Colitis, Polyarthritis, Anxiety Disorder, and now Fibromyalgia. I just keep getting more and more things to deal with - more diagnosis' , more diseases!! What do I do to STRENGHTEN my immun system??? Is that even the way to go??
Thaks,
Jessi
Dx w/ UC 2000
J-pouch surgeries in 2002 - colon removed except for last tiny part of sigmoid & rectum which keep inflaming;
Currently battleing: Auto-immune disorders: Crohns-Colitis/IBD & Crohns-related arthritis; anxiety disorder; mild asthma (chronic bronch); & Chronic pain
Remicade once ever 4 weeks
Methadone 5mg 2x daily(for Chronic pain); Cymbalta 40mg; Klonapin(as needed), Famotadine 40mg; QVAR,

Jessi


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/30/2009 4:05 PM (GMT -7)   
My doctor says that nobody ever has just one auto-immune disease. He says we all end up with a cluster of them, even if they take a long time to be diagnosed.

I think it's important to know that these illnesses do come in clusters. I believe - but perhaps some of the more sciency people will come and correct me - that the genes associated with our complex of diseases sit on the end of one particular chromosome, which is why we are often likely to develop RA, lupus, etc.

As far as I know, there's another, similar cluster, on a different gene, that predisposes MS patient to a variety of other auto-immune illnesses.

Also, it is not *certain* that Crohn's is an autoimmune condition, and I'm pretty sure that fibro and anxiety aren't listed as auto-immune disorders either. *However*, patients with fibro are more likely to have anxiety and depression, as are people with Crohn's. In turn, stress and depression can exacerbate fibro.... Do you see what I mean? They are all interrelated.

Once you develop fibro, I think you need to start thinking in terms of holistic care, taking care of your sleep, diet, exercise and stress levels.

Ivy (please excuse rambling; I never make sense this early in the morning).
Co-Moderator Crohn's Forum.

New meds thread


Jessi21
Regular Member


Date Joined Sep 2008
Total Posts : 57
   Posted 5/30/2009 5:01 PM (GMT -7)   
Thanks for that Ivy..a little confusing hehe but SO interesting and definitely a lot to take in. I don't get it..I thought that BEFORE any of my illnesses started - and I've been told this by the docs - waaay back when I was first diagnosed with UC for example, I had an Auto-immune dissorder FIRST which they explained to me like this: basically, the good cells-my white blood cells-were fighting against each other, a battle, in my immune system, and of course while they were busy doing that, an illness developed in my body and the cells that usually help PREVENT illnesses that come into the body, did not do their job, basically. And so I thought thats how its been happening to me - sort of like flares of that happen every so often and I develop something else - like my arthritis, or asthma, and especially - my Fibromyalgia! Does this make any sense..? I'm so confused. And of course i know - and have been told over and over again - that everything is one big cycle as far as after having Colitis my anxiety developed, and the anxiety of course exacerbates the colitis, and again and again and again...
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


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/31/2009 7:27 AM (GMT -7)   
Hey Jessi,

I am another one with Fibro. I don't have the "extreme" pain you mentioned but I do have chronic pain everyday. I take 1/2 Percoset 3 times a day. That doesn't take it all away, but does take the edge off. But I also have osteoarthris too. You will find much more info on the Fibro forum. I think I have learned to live with the pain. Wierd, huh? I think for those of us with IBD we learn to live with the pain. I work a full time job, and am married. I would recommend a referral to a Rheumatologist. Because we IBD'ers can also develop some spondylarthropies that can be serious. And a Rhemy will be the best to diagnose and treat you. Good Luck!!

Gentle Hugs,
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 6/1/2009 1:18 AM (GMT -7)   
I happen to know that a lot of fibromyalgia patients are using LDN, low dose naltrexone these days, and they have improved so much they have no pain left. This is a fight within the immune system as you say, and it's easy to get more than one autoimmune disease when having one. LDN could calm down all. To learn more, you may go to this doctors site:
http://jeffreydach.com/2009/04/13/low-dose-naltrexone-ldn-2-jeffrey-dach-md.aspx

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/1/2009 9:59 AM (GMT -7)   
Just thought I would mention...
 
Have you considered trying VSL#3 probiotic? It is supposed to help maintain remission of pouchitis after you have completed a course of antibiotics.
 
Sorry I can't be of more assistance. Best of luck.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Primadophilus Reuteri, Folic Acid, Vitamin E

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