recent/current flare, little doctor help, feeling very depressed.

rgreen116

New Member

Joined : Oct 2007

Posts : 4

Posted 10/3/2007 8:53 PM (GMT -7)

I was diagnosed with UC in 2002 and just recently with fibromyalgia, after long debates with my GI doc.

I am needing to be taken off of my medication for UC (entocort) b/c my body has become completely dependent on it. I was doing ok when reduced, until recently (friday sept 29th). After speaking to the GI doctor, I was told to tough it out. Since then I have become rather gaunt, tired, and sore... and in the w/c 7 times a day. I feel like I have the flu even though I know I don't. The rheumatologist that diagnosed me was just the referral doctor and has told me to contact my PCP. (I don't have one. I am a student and in debt up to my eyeballs.) I feel like noone understands that when I have a colitis flare, the fibromyalgia symptoms rear their ugly heads! I barely sleep b/c of the colitis and my body aches and pains. Does anybody else feel like they are being repeatedly kidney punched? Today, I broke down and cried in one of my classes. BTW i'm only 23, with a 2 year old and a fiance also in school. I am taking a 15 hr course load and doing a placement for one of my classes at an elementary school for 8 hrs a week, then there is the homework, housework and maintaining a relationship with a 2yo. My fiance is just as stressed, so there is little help from him as he has school and 2 PT jobs.

The rheumatologist said that there is nothing more (medication-wise) to be done about the fibromyalgia. My GI doc gave me Tramadol for the pain, but it makes me a zombie and pukey. I have joined a fibromyalgia clinic but don't go till the 15th. I don't know what else to do... So, maybe this turned out to be more of a rant than anything else, but I have had it with doctors!

Any advice would be welcomed and greatly appreciated!

Thank you.

Post Edited By Moderator (Loneylane) : 10/3/2007 9:55:57 PM (GMT-6)

Lonie

Veteran Member

Joined : Feb 2005

Posts : 6448

Posted 10/3/2007 9:02 PM (GMT -7)

Welcome rgreen116 to the forum. Wow, sounds like you have quite a bit going on. I know someone else who is on Tramadol and has the same reaction. I had to delete a bit of your post as discussing illegal drugs is not allowed on our site, so I apologize. But I do understand your frustration. I hope that the Fibro group helps and can give you some suggestions. Have you been on our Fibro forum here at HW? They might have some suggestions for pain as well. I do know that when I have a flare, I can hardly move my joints; so I totally understand the pain. I at least have the luxury of sometimes just being able to lay around or come home from work, but it sounds like you have quite the busy schedule especially with a little one. One other suggestion; can you try and talk with the big drug companies to see if they can provide you some samples of meds? I'm glad that you are with us, and please feel free to rant anytime. Sometimes just writing it out makes us feel better. Take care, and again.....welcome!

Carol

Remicade - will have my 19th infusion on November 1.

Imuran - 100 mgs....taken before bedtime

Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"

Co-Moderator for the UC Forum

Red_34

Forum Moderator

Joined : Apr 2004

Posts : 23575

Posted 10/4/2007 2:17 PM (GMT -7)

Hi there :) I have both Uc and fibro and it is NO picnic thats for sure! Definately visit our Fibro forum if you haven't already done so. They might be able to give you some pointers in helping you ease your fibro pain. When my Uc flares so does my fibro - it's horrible. I feel like a train wreck when that happens. I just wanted to let you know you're not alone and try to rest when you can. Stress plays a big role not only in UC but Fibro too. The more stress we are under the more our pain intensifies. Just remember that warm baths are your friend!

^{@--->--SHERRY--<---@}

^{Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia}

^{Secondary Reynauds Syndrome - '04 - Norvasc}

^{Fibromyalgia - '06}

^{PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE}

^{@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@}

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NuffinButtTrouble

Veteran Member

Joined : Mar 2007

Posts : 679

Posted 10/4/2007 2:50 PM (GMT -7)

rgreen116,

I know exactly how you feel and I can only make suggestions that may or may not work for you.

Avoid all sugars like the plague...no candies, no sodas, no fruit juices (except 100% apple cider), no milk, no cereal or cakes, absolutely no white sugar! Not even a teaspoon in tea...no ice cream either. Instead of sugar, use honey.

Try this and see if you begin to improve within a few days...if and I mean "if", you begin to improve...your joint pain will disappear and you will regain "most" of your energy but not all of it.

Why not give it a try.

ps
Keep a log of everything you eat and drink, so that you can keep track of problem foods, etc.

NBT

Diagnosed with Ulcerative Colitis January 2007

Meds: ~~Remicade~~, ~~Primal Defense Ultra~~, ~~Multi-vitamins (also iron, B12, Magnesium and Zinc)~~, ~~Flaxseed~~/Natures Bounty Fish Oil

~~Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily~~

~~Carrot & Garlic supplements (natural anti-fungal) x2 daily~~

princesa

Veteran Member

Joined : Aug 2007

Posts : 2204

Posted 10/4/2007 2:52 PM (GMT -7)

I'm sure this isn't what you want to hear, but you might want to consider cutting back on your schedule somehow... either dropping a class or perhaps dropping out completely for a semester or two. It sounds like you're really pushing yourself to the max. The stress, obligations, lack of sleep are all going to combine to make a bad situation worse. Sometimes, it can be helpful to admit we've bit off more than we can chew and cut back on some things. With UC and fibro together, you really need to get as much rest as possible and take care of yourself... your health must come first. Do you have family members who can help out?

Diagnosed with ulcerative colitis spring 1999

C-scope confirmed UC diagnosis 9/18/2007

No explanation for right side pain and thickening of bowel wall

Maintenance dose sulfasalazine, back on a pred taper for first flare in years

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.

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