:cry: It has been a long time since I have been on this site. Denial I think. I have SLE for about 2 years now. It seems to be getting worse pain wise. I have joint and muscle pain especially in my legs and knees and back. Now I have started to have stomach pain on my right side by my belly button. It really hurts and also it feels like it is swollen inside there. I have been to the ER several times for this and they say its irritable bowel caused by lupus. My rheumatologist says it has nothing to do with lupus. i just want the pain to go away! I have 3 children and it is hard raising them with this kind of pain. I feel like the doctors do not understand my pain levels, they think I am drug seeking. The thing is if I do not have pain medication life is terrible and it makes me irritable to be in such pain. At least with pain medication I can bear the pain. Any suggestions on pain control? And does anyone know if Lupus causes stomach problems? thanks for listening.
First let me address the issue of your suspected IBS. This is common in lupus. It is often linked with stress, inadequate fluids and poor eating habits. IBS can be linked with food intolerance, although it is not known if this is cause or effect and again it can be a perceived reaction rather than a real one. Irritable bowel syndrome (IBS) is a chronic (long-term) condition affecting the small or large bowel. It causes pain or discomfort and altered bowel habit. Most people's symptoms are so mild that they don't bother to see a doctor about them. However, some people can have symptoms that are more troublesome, especially abdominal cramps, bloating and diarrhea. People with more severe IBS are usually affected by one symptom more than the others - either pain, constipation or chronic diarrhea. The most common symptom is the abdominal pain, which some people describe as aching or colicky. The pain may be mild or severe, and may be made either better or worse by opening the bowels, passing wind or eating. The abdominal pain experienced by people with IBS may be a result of intestinal contractions. The muscles in the colon contract to move stool along and out of the body. In a person with IBS, these muscles may be contracting irregularly and intermittently along the length of the colon. This may cause symptoms of abdominal pain, bloating, and gas.
Treating the pain for IBS usually includes the following:
Antispasmodics (such as dicyclomine [Bentyl], hyoscyamine [Levsin], and belladonna/phenobarbital [Donnatal]) are a class of drugs that are often prescribed to treat IBS symptoms. These drugs can relax the muscles of the stomach and intestines, and provide relief from abdominal pain. To be effective, antispasmodics are typically taken 30 to 60 minutes before a meal. However, they can also cause side effects such as blurred vision, constipation, decreased sweating, dizziness, headache, nausea, and urinary problems.
A natural antispasmodic, peppermint can also help reduce spasms in the colon. Peppermint oil can be taken in either capsules or tea. While the capsules are more effective, and have even been approved for use with people with IBS in Germany, they can cause anal irritation. Additionally, peppermint also relaxes the muscles in the esophagus and can contribute to heartburn caused by acid reflux.
Tricyclic antidepressants (such as amitriptyline [Elavil], nortriptyline [Aventyl], imipramine [Tofranil]) are prescribed to people with IBS in order to treat abdominal pain. However, these agents are typically prescribed in much lower doses than they would be for treating depression. Antidepressants seem to be more helpful when taken at night for people with diarrhea predominant IBS (D-IBS). It may take several weeks of treatment with an antidepressant before it has an effect on abdominal pain.
A simple and inexpensive way of treating abdominal pain is with a home heating pad. Heat can help soothe cramping muscles and provide a source of comfort.
The second part of your question was about stomach problems with Lupus. Gastrointestinal manifestations are common in patients with systemic lupus erythematosus, starting at the esophagus down to the lower intestines. Your doctors should be willing to rule out other causes of abdominal pain, such as pain arising from the liver, spleen and pancreas, and those secondary to serositis and ascites. Once they've done that, then they can determin if the problems are due to the disease or side-effects of medication.
One of the most disturbing, and at time debilitating, manifestations
of lupus involves the gastrointestinal tract. Sometimes, GI manifestations of lupus, such as diarrhea, nausea, or abdominal pain, are the initial presenting complaint by Lupus patients to their doctors prior to a Lupus diagnosis. Only, after thorough evaluation, will the etiology of these GI complaints be recognized as being secondary to systemic lupus. Organ involvement in lupus can also include the esophagus, stomach, small ntestines, colon, pancreas, peritoneum and liver. About one-half of all patients with SLE will, at some time during the course of their disease, develop GI complaints or symptoms. Lupus patients can have difficulty with initiation of swallowing or develop painful swallowing related to the disease. These symptoms are usually mild and occur most often with solids rather than liquids. Lupus patients often suffer from muscular disorders of the esophagus, or severe arteritis resulting in inflammation and ulceration of the esophagus which can result in dysphagia.
At times, a patient with lupus will develop scleroderma-like symptoms with involvement of the esophagus along with telangiectasias and Raynaudís phenomenon which may make it difficult to determine if it is truly scleroderma.
Also, steroids or azathiprine can cause problems associated with the esphagus. Steroids cause a suppression of the immune system. In this setting, fungal or herpes infection of the esophagus can occur, resulting in symptoms of difficulty swallowing.
Other upper abdominal complications of lupus include nausea and vomiting which may result from arteritis involving the stomach or small intestine or a so-called pseudo-obstruction of the intestine.
Another organ in the GI tract often involved in lupus is the pancreas. Patients with lupus can develop acute and chronic pancreatitis secondary to arteritis involving focal areas of the gland or the gland exclusively. Symptoms are those of recurrent nausea and vomiting.
Involvement of the large intestine or colon also occurs with some frequency in lupus. Symptoms include diarrhea, lower abdominal discomfort, pain related to the arteritis, and, at times, ulceration of the large intestine. To diagnose this, doctor's will generally use x-ray or endoscopic visualization of the colon to rule out other pathologic processes. Treatment is generally for the underlying disease with non-steroidal and anti-inflammatory drugs in an attempt to improve the arteritis involving the large intestines.
Finally, as I said earlier, pain can be caused by liver or hepatic involvement in systemic lupus. Hepatomegaly (or liver enlargement) can occur in Lupus, but is usually mild and only at times discomforting to patients. Frequently, patients will report a sensation of fullness in the
liver area or under their right rib cage where the liver is located. On examination, the liver may be found to be slightly enlarged and tender on palpation. Frequently, routine biochemical profiles will show a mild hepatitis (inflammation of the liver). This hepatitis is frequently due to medications, such as aspirin or a mild arteritis involving the liver. Lupus involvement of the liver does occur and, on rare occasions, can progress to severe hepatitis or cirrhosis.
There is a condition which has been termed as "lupoid hepatitis" which is applied to chronic active hepatitis in Lupus patients. This is due to infection with hepatitis B virus. . This acute viral hepatitis was named lupoid hepatitis because it frequently resulted in the appearance of a butterfly
rash and other symptoms to suggest systemic lupus erythematosus.
However, this is an entirely different diagnostic entity related to infection with the hepatitis B viral agent which can cause systemic complaints very similar to those of SLE. Fortunately, these two entities can be distinguished by appropriate laboratory testing. It is important to distinguish these entities because of the different treatments and prognoses associated with the two separate diseases.
So, basically, Systemic lupus erythematosus does present with GI manifestations. In some patients, the symptoms of GI disease, such as nausea, vomiting and abdominal pain, can result in significant disability and complications.
I gave you all of this information so that, the next time that you see your doctors, you can go armed with knowledge. In this way, you may be able to insist that they take your symptoms seriously and begin treatment accordingly.
I wish you the best of luck and hope that you are able to get some relief from you pain.
Peace and Blessings
Saysusie gave you her usual wonderful and thorough information - one thing I would add is that irritable bowel syndrome is a diagnosis of "exclusion" - in other words, your doctor should not diagnose IBS until other causes for your pain and other symptoms have been ruled out by the appropriate diagnostic tests - which might include lab work, ultrasound or x-rays. So if you have not had a complete work up - this needs to be done. If you are not comfortable with your rheumatologist handling this, ask for a referral to a gastrointestinal specialist, called a gastroenterologist. Once other medical conditions have been ruled out, your doctor can help you manage your IBS with diet, lifestyles changes, and possibly medication. Narcotic pain medicines are usually not appropriate for IBS because they slow gastric motility (the speed at which things pass through your digestive system), and can actually make some IBS symptoms worse. And if you are noticing increased joint and muscle pain, it may mean that your lupus is flaring, or that it needs to be managed more aggressively. So you really need to bring this up with your rheumatologist, and let him know that your current meds aren't helping you control your pain.
:) Thankyou so much for all the information. I have a rheumatologist appointment this friday. I will bring this information with me to the apointment and hopefully get some answers. It is good to realize that I am not crazy and lupus can cause these problems. thankyou so much and may god bless you.
well i have lupus nephritis and i do get really bad pains to but you should really get check lupus does give lots of pains some times i do get adominal pain is like i have gasses that i cant seem to let them out but if you say is on the right side of the belly button you should get check when your in that pain are you able to raise you right leg towards your stomach if you doing it and you cant cause the pain is so but that it wont let you is not a good sign if your losing appetite or cant seem not to use the bathroom very well or have diahreah and if that pain get stronger and stronger you might have appendisitis is very seriouse you ganna have to get a sergery go to youtube and look for appendisitis signs it will let you know all the symtoms please get check as soon as posible this can cause death if not treated on time god bless you and my name is jennifer......................................
Originally Posted by shan3
well i have lupus nephritis and i do get really bad pains to but you should really get check lupus does give lots of pains some times i do get adominal pain is like i have gasses that i cant seem to let them out but if you say is on the right side of the belly button you should get check when your in that pain are you able to raise you right leg towards your stomach if you doing it and you cant cause the pain is so strong that it wont let you is not a good sign if your losing appetite or cant seem not to use the bathroom very well or have diahreah and if that pain get stronger and stronger you might have appendisitis is very seriouse you ganna have to get a sergery go to youtube and look for appendisitis signs it will let you know all the symtoms please get check as soon as posible this can cause death if not treated on time god bless you and my name is jennifer......................................
Originally Posted by shan3
This thread is from 2006, but Susie has posted extensive info on IBS which we were discussing in another thread
Your rheumatologist needs to go back to med. school! lupus can effect any and every organ, or organ system. however, a problematic issue is the pain meds themselves.
i know i can't live w/out them, however they can make certain issues worse.
pain meds make you, neuralogicaly, more sensitive to pain. this is a fact. and your entire digestive system is lined with pain receptors!
and, as much as we with SLE need our pain meds, it's very common to be treated like a 'drug seeker'.
i would do two things:
get a new Dr.
always take the smallest dose possible of your pain medication. this way, when things get the worst, a full dose will do you quite nicely.
lastly, we with SLE react to so many things. in your case i would keep a food/pain diary. by doing this i found out that i had to keep my daily carbs to 25mgs. or less. it was awful! i was a vegitarian at the time...so much for that!
because we react so much to so many things, sometimes those that seem innocent and incapable of causing harm, i advise you to be ever so dillegent and observant of all your meds, everything you eat and also your environment.
sometimes, the culprit causing you such horrible distress is the last thing you would ever guess!
keep the faith, be strong when you can, and i pray you feel better soon ;-) !
I have been having a lot of stomach pain lately and I am beginning to think it is from the NSAIDS. I hope not because I cant survive without them.