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pain & fatigue

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Hi all, I have severe dysmotility syndrome (i.e gastroparesis and motility problems in oeasophagus, intestines and bladder). I have a jejunostomy for feeding, medication and fluid and a gastrostomy for venting and draining. I use fentanyl patches, amitriptyline and morphine for the pain.
Does anyone else have problems with disproportionate levels of pain and fatigue NOT caused by abdominal problems? For example, I hung the washing out one day and spent the next week or so feeling like I'd been hit by a train.
I've spoken to my consultant about this; he says it's common in patients with dysmotility, but he doesn't know why, or how to treat it.
Does anyone have any suggestions?

9 replies

I have chronic fatigue, which is actually a symptom of gastroparesis. I have also had problems with headaches and muscle aches. The headaches were caused by dietary imbalances. The muscle aches are relieved by stretching--and I need to get back on top of that!
Hope you are feeling better soon.

I am being treated for fibromyalgia, which is similar. I don't know if there is a connection with my GP or not, although it definitely gets worse when my diet is poor (lacking in vegetables, fruit, etc... ) I wake up each morning exhausted and throbbing with pain -- as if I'd run a marathon (which I haven't ever by the way!) If I do more physical exercise than usual it gets worse for a few days, if I don't do anything at all, it also gets worse. I have found that I must be very careful to hit somewhere in the middle. I just had a sleep study done, which was recommended by my rheumatologist, to check for things like sleep apnea or restless leg syndrome, because apparently these things can disrupt the quality of your sleep which can keep your body from repairing itself at night. Waiting for the results.

I would try to see a rheumatologist if you can, if only to cross some things off the list so to speak. I also did a lot of reading initially on the mayoclinic.com website. Hang in there...

Kellie

Hi Karen, I have no suggestions, I suffer with all your motility problems severe at the present. I understand what you are going through as the nausea and pain can be quite unbearable at times. I also have a semi good day and do something and then I am down for a few days. I have learned to do a little at a time, I also have learned to not worry about the house so when I am real bad I just watch the dust rise and do what I can. It use to drive me crazy but not any more. I keep a positive attitude but sometimes not being able to do anything really drives me crazy. I was an A type person ( a true gemini) I hope you feel stronger, hang in there.
Barb

I have severe GP and colonic inertia, as well as other GI problems. I also have a j-tube and a g-tube for draining. I'm beyond fatigued. I sleep for about 12-15 hours per day and just handing out candy to trick or treaters yesterday thoroughly exhausted me and I had to go to bed. I am also on a fentanyl patch and I take fentanyl lollipops for breakthrough pain. I have malabsorption so I attribute the fatigue to iron deficiency anemia and the pain to my spine problems, herniated discs, and low vitamin D levels. It's amazing what GI problems can cause.

Mimi

Thank you all for your input. It's provided more questions than answers; although that's something I'm gettting used to!

I would go along with the suggestion of seeing an arthritis doctor at least to rule out possible reasons. I know whenever I fall or even trip and catch myself from falling, I spend the next week feeling like I was thrown out of a moving car, but you see I have rheumatoid arthritis and just about every joint hurts and hurts worse when jangled. Just because you have gastric problems doesn't mean you are immune from other diseases unfortunately. :( So your description kind of got me thinking you see to have an over abundance of pain all over which could have a very different root than the GP. I have found that I too must balance movement and rest, but the more I can move usually the better I feel.

I do know this feeling, but you might try a drug called cymbalta. Look it up and check it out. My beautician swears by it for her fybromyalgia. She says it has helped her a lot where she can go ahead and work. She
is a single mom with no other way to make a living so she haqs to work, but she says it helps her at night to get a good nights rest. I have taken cymbalta, but it was too expensive for me as my other meds are so much more important to me. Its a catch 22.

I agree about with texascowgirl about the Cymbalta. I have a friend who started taking it a few months ago for neuropathy. The first few weeks it made her very sleepy, but her body adjusted to it, and she doesn't have much problems with that anymore. But it has made a tremendous amount of difference in her pain. Ask your doctor about it.

I had the severe fatigue and it was from the Reglan that I was having to take. I am on a full liquid diet, 5 months now and as long as I take 2 prevacid daily I only have to take Reglan at night. It is my sleeping pill. Before I figured out what was causing the fatigue I was capable of sleeping 20 hours a day. Which is not possible when you work full time and it ruins your days off. Cymbalta is a must by the way. I found that it was the depression of the disease that caused the aches and pains.

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gimotility: RE: 2009 AGMD Digest.Motility Symp. "Hirschsprung's dis., most common cause of lower intest. obstruct. in neonates," Rodriguez MD.

gimotility: RE: 2009 AGMD Digest. Motility Symp."IBS accounts for 30% of all health related costs in gastroenterology" www.agmd-gimotility.org

gimotility: From 2009 AGMD Motility Symp.: "IBS is the most common chronic med. cond. worldwide" Pimentel, MD, http://www.agmd-gimotility.org

gimotility: AGMD Digestive Motility Symposium-Much Information & Insight. Stay Tuned For Highlights. AGMD: http://www.agmd-gimotility.org

gimotility: Hurry And Register For Extraordinary Symposium Featuring Renowned Experts In Digestive Motility. http://www.agmd-gimotility.org

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