Community Forum

Sometimes I feel like most of the pain is all in my head, so I try not to take the pain meds for awhile and realize that it is real.  I have a really hard time in the morning, achy and tired.  I generally wake up in the middle of the night because my back and sholders hurt.  My arms and hads fall asleep alot, does anyone else have that problem?  I got a body pillow and prop up on that when I sleep, it helps some.  My job requires me to stand most of the day, so the back pain is always there, seems when I take a break and sit for awhile is when my knee hurts most.  So, I guess my ? is, does anyone feel the same?  I sometimes dont even want to get dressed, mornings are tough. 

It's funny, this is suppose to be an intestinal desease, but the gut sometimes seems like the least of the problem. 

Thanks for reading this and taking the time to respond

D'Ann

 Reply posted for DAnnrae.

Hi everyone!! Wow am I glad I found you guys.....as I read through the posts, I am in tears, because I found some one who can understand what I am going through as well. After spending a month trapped inside my house and several trips to the doctor, and several very uncomfortable tests, I was diagnosed with Crohns. This was when I had insurance. Shortly after the premiums went up, so bye bye health care. My doctor said go home and don't stress and you will be fine. That was in 2005. Three years later I can't eat anything I like and I have to find the bathroom first wherever I go, and hope i make it in time.I'm tired of being tired and tired of hurting ALL THE TIME!!!

I want to live again. I want to have the enegy and the strength to do the every day things that need to be done. I can't afford the meds. I don't want to put all that into my body anyway, but I'm at the end of my rope. I'm still young and want to feel that way. Can any one help???

Thanks for reading this.

Denice

 Reply posted for DAnnrae.

 Hello,

I just read your letter on the site and no you are not the only one that can,t get up in the morning.I have had this problem as well and I thought it was because I work too much.I know now that it has to do with the Crohns.It takes me sometimes an hour before I can get moving because it feels like someone has taken a bat to my guts.My husband thinks I am just lazy but I tell him it has nothing to do with being lazy.I also find that I can,t do a lot of stuff I use to do....like clean house and then some.I have to take a lot of breaks and it takes me all day to clean my house from top to bottom.

Have A Great Day.

Dale

 Reply posted for DAnnrae.

Thank you Dana........I did have some blood work done before I had a colonoscapy, it showed low blood count which they atributed to anemia. The results of the colonoscapy showed no signs of active crohn right now, which is good.  However there apparently were some unidentified issues in my instestines and some sort of white spots on my esophagus. I go in tueday to talk with the gi doc more about this.  I started taking iron, of course you know what that does. I also started taking celebrex and gabapentin for my joint pain and back pain. They seem to be working some, but I am so tired and there is still alot of pain in my back and shoulders. The good news is my knee doesnt hurt much. I also take alot of hot baths, probably helps my mental state more than the pain, just getting enough releif to relax and be comfortable is my wish. 

All I want to do is get a good night sleep, I have tried a couple differerant sleeping meds, but what works best is tylonal pm....so far anyway!  I do take vicodin for the pain, but cant take it too late in the day or it keeps me awake, and I dont want that. 

I am just tired of always feeling like crap, seems like just a couple of years ago I could do just about anything I wanted, now just the thought of doing something active scares me because I know that I will probably hurt later.

Thank you for your response, I sincerly feel for you

D'Ann

 Reply posted for DAnnrae.

Hi DAnnrae,

 Reply posted for DAnnrae.

Be your own best friend.  Pain is not a silly all in your head issue; it is real and it is very important to recognize it and seriously address it.  Crohn's is an immune disorder where upsets are featured in the gut but it is also going on all the time. Just because your gut is ok for awhile doesn't mean that the disease isn't there.  Good rest and lots of sleep help.  If your job requires standing and your joints ache and your feet burn, please take the time to stretch out and put your feet up during breaks.  See your doctor about pain meds and doses for specific problems.  I used to feel that I could control pain with my mind - that if I was strong enough I could make it lessen.  But if your best friend spoke with you about his/her pain would you say, "it's probably all in your head?"  That doubles the burden and makes things even harder.  I take 1/2 of a vicodin and use a heating pad whenever I sense the pain or its anxiety causing onset.  When it's just awful I take a hot bath at night or in the morning.  I use a little Xanex when my jaw is clenching and try to distract my mind with books or CD;s or videos.  I was diagnosed in the early 1970's and learning how to cope is the biggest hurdle.  Take care of yourself without guilt.

 Reply posted for DAnnrae.

I agree that often it is difficult to get moving.  I was diagnosed with UC back in 1986 and it progressed to the point of having a total colectomy with a j-pouch in 1988.  During that time I was taking high doses of prednisone and could never completely titrate off without a resurgence of UC, and each time being worse than before.

Flash forward to 2004 and I got the "wonderful" news that I have Crohn's in my j-pouch.  During the last 2 years, I started having pain in the joints of my feet and hands.  It has now progressed to most every joint in my body.  My GI had me see a Rheumatologist for a full work up.  The report that I got wasn't exactly what I was looking for.  Rheumatoid arthritis in my hands and feet, and Psoriatic or Spondylitic arthritis in my knees, hips, spine, shoulders and neck and early signs of osteoporosis.  The Psoriatic/Spondylitic arthritis is associated with IBD.

I have been taking Remicade for about 1 1/2 yrs and now added methotrexate, folic acid, calcium, and Fosamax.  It will take several months to see significant improvement but, I am hopeful.  And yes, exercise (good paced walking) does seem to help too.

 Reply posted for DAnnrae.

I stand all day at my job and I could just cry because of the pain in my feet.  My lower back also suffers.  I am seeing a neurologist for the pins and needles and burning in my feet.  At night my feet hurt the most and I have a difficult time getting comfortable.  I don't sleep well because of the pain.  In the morning I go for a walk and it seems to be better when I'm moving.  The neurologist prescribed Lyrica which is quite expensive and doesn't seem to work.  Now I'm thinking of going back to the Tramadol that the rheumatologist prescribed.  I'm tired of seeing drs and taking pills.  I have had small bowel resection and my gut feels great.  Now all these other pains. A friend with neuropathy is referring me to a  free-lance physical therapist who also does accupunture.  Anyone try this?

 Reply posted for DAnnrae.

Yes, its sometimes very hard to get up. I have problems falling asleep and staying asleep. Wake up with arms and legs asleep, have even tried getting up a few times and collapsed because I was awake but my lower half was not lol. Yea it a intestinal disease but it affects so much more, my whole body hurts most of the time, and a lot of cramps in legs at night. Just part of the wonderful world of Crohn's lol.