View Full Version : for my mom

11-01-2006, 09:26 PM
I have registered for my mom, who is having a hard time with her lupus right now and could use some support. I registered under her email address. We aren't sure exactly how these forums work, but are hoping to learn. Mom has had lupus for years and years, but started having significant problems a little more than a year ago. Tonight, she is having so much pain in her feet, ankles and wrists, even after having a high dose of prednisone for almost a week now, and taking darvocet, percocet, tramadol and lyrica for pain. I know she would be very grateful to hear from others who are having a hard time as well. Thank you, I hope someone will reach out to my mom.

11-02-2006, 07:41 AM
Let me say "Welcome" to both you and your Mom. She is very lucky to have you and you are a very special person :)
Is Judy your Mother's name? If so, what is your name?
There are several medical reasons for joint and muscle pain in Lupus. In fact, the joint and muscle pain of Lupus is experienced by over 90% of us who have Lupus. This type of pain is the major complaint of more than half of all SLE patients. The major cause of joint pain in SLE is inflammation of the joints, which is called arthritis. This inflammation causes pain, swelling, tenderness, and fluid retention. Several joints can be involved at one time and the joints farthest from the trunk of the body are affected most commonly, such as: fingers, wrists, elbows, knees, ankles, and toes.
Lupus arthritis is treated with non-steroidal anti-inflammatory drugs (NSAIDs) such as: aspirin, salsalate (saliscylate), naproxen, ibuprofen, and indomethacin. When NSAIDs are not adequate to control the pain from arthritis, antimalarial agents such as hydroxychloroquine (Plaquenil) are often added. Corticosteroids (prednisone) are used when the joints remain swollen and painful despite other treatment. Immunosuppressive medications are also used for inflammatory arthritis as well as for other Lupus symptoms. These drugs include: cyclophosphamide, azathioprine, and methotrexate.
Lupus patients can also suffer from joint pain due to some of the other disorders that can co-exist with Lupus or complicate lupus symptoms. Some of those disorders are:
1) Fibromyalgia ( a chronic disorder. Its symptoms are: widespread pain in muscles and joints, fatigue, generalized weakness, and non-restful sleep, headache, changes in mood, difficulty in thinking and concentration, irritable bowel, and urinary urgency). Fibromyalgia is estimated to occur in up to 2 percent of the U.S. population. Fibromyalgia may exist with other conditions, including SLE and rheumatoid arthritis. Fibromyalgia is treated with NSAIDs and other agents to relieve pain.
2) Avascular necrosis of bone (also called aseptic necrosis or osteonecrosis). This is a weakening of the bone which causes tiny breaks, and eventually the bone surface collapses. The hips, shoulders, and knees are most commonly affected. The initial symptom of AVN is pain in these joints, especially upon movement and weight-bearing activities, such as:
walking, running, and lifting objects. This leads to stiffness, muscle spasm, and limited movement of the affected joint. Currently there is no effective medical treatment that can reverse this condition. NSAIDs and other medications are prescribed to relieve pain.
3) bursitis and tendonitis: A tendon is a strong ropelike structure made of tough fibers that attaches the muscle to bone. A bursa is a small sac containing a slippery fluid that is usually found near a joint and allows muscles, bones, and tendons to move easily. Irritation of a tendon (tendonitis) and a bursa (bursitis) are usually due to physical trauma or overuse of a joint. Pain, especially when the affected part is moved, is the major symptom of both conditions. Different areas of the body may be affected, but the most commonly affected areas are: the elbow (tennis elbow), the finger (trigger finger), and the shoulder.

People with Lupus can also develop myositis, this is an inflammation of the skeletal muscle and can cause weakness and loss of strength in the arms and legs. Corticosteroids (prednisone) are the drug of choice in the treatment of lupus myositis. Those few individuals who fail to respond adequately to steroids will be prescribed an immunosuppressive agent such as methotrexate or azathioprine.

You and your Mom will find that there will always be someone here who understands what she is going through, who has probably experienced it themselves or who knows how to find answers to her (and your) questions. Let your Mom know that we are here for her at any time and that we want her to know that she is not alone.

I wish you both the very best and, once again, WELCOME!
Peace and Blessings

11-02-2006, 09:55 AM
Saysusie has explained the many ways that lupus can affect the body and cause pain, but the fact that your mom is having so much pain despite all the different pain meds suggests that she may need to be referred to a pain management specialist or a pain clinic. Certain types of pain, like nerve pain, don't respond to most pain medicines, even narcotics, so a different approach is needed. Pain management specialists are available in most areas, and your mom's rheumatologist or primary care doctor can refer her. Living with constant pain is draining on her and your family, so it's important for her to get the best treatment for her pain.

If your doctor doesn't know of any programs in your local area, you can locate the nearest pain management programs through the American Academy of Pain Management website - www.aapainmanage.org/info/Patients.php

It might also help for you to help your mom keep a pain diary - noting when the pain occurs, how bad it is on a 1-10 scale, and how much pain medicine she needs to control the pain. Keeping a record will help the doctors adjust her pain medicines. You can find information and a printable form on the Partners Against Pain website - www.partnersagainstpain.com

11-03-2006, 02:10 PM
Welcome :lol:

11-04-2006, 03:51 PM
Mom was so excited to get messages, so thank you. My mom's name is Judy, and I am Laurie. Mom is 56, and I am 37. We live three hours apart in Nebraska. Mom and dad have 8 grandchildren who live in the same town as them, 4 of those grandchildren living in their house with one of my sisters. Crowded and noisy? Yes, but mom loves being able to see her grandkids so much. Mom has had lupus since she was in her 20s. I remember her being sick often. In the spring last year she started to tremble. She would feel unbalanced while walking. Then it started in her hands and arms. It would get worse and then get better. Some said it looked like a parkinson's tremor, but it wasn't. Tests and tests, and they have never been able to figure out what it was. She had to quit her job as a social worker for a church, which she loved. She has to use a wheelchair when going out and about, which she hates. Last summer she got pneumonia that spread very quickly and caused her to get respiratory distress syndrome. We almost lost her. She has never reallly has been the same. She is weak and in pain. They never did figure out the tremor, and now she is having more trouble with her speech and remembering words. Two neurologists have told us they don't see what's wrong. We are worried because dad has been off work for about a month to take care of mom since her last hospitalization, but he has to go back soon. She has fallen and hit her head a few times, so we got her lifeline. We will keep pushing the doctors to keep trying to find her some relief. Her spirits are down, but her faith is strong. She plans on writing when she's feeling better but she asked me to reply for her. You'll like getting to know her. Thanks for listening.


11-04-2006, 04:37 PM
Hi, Laurie - we're so glad you are able to share the messages with your Mom. I know it's scary and frustrating to worry about her and not know exactly what is wrong.

I'm wondering if you live close enough to Omaha for her to be seen at one of the major university medical centers, either UNMC or Creighton? With her complex medical history, she really needs to be evaluated by a neurologist who specializes in movement disorders, and they are usually easier to find at research and teaching hospitals.

Once your dad goes back to work, will there be anyone at home with your mom during the day? You might also talk with her doctor about a physical therapy referral, to see if using a walker would help. It's also a good idea to "slip-proof" the house - get rid of any throw rugs or scatter rugs that could make her fall, and put traction treads on stairs and in the bathroom. My dad is in his 80s so I worry a lot about him falling, so we've safety proofed our house and put safety handrails in the bathroom. There are lots of little things you can do to make the house safer for your mom.

I know this is a really hard time for you and your mom both - I hope you are able to get some answers soon. Push for a referral to a teaching hospital or someplace like the Mayo Clinic if that's what it takes to get answers.

11-04-2006, 04:50 PM
I forgot to include this link - an article with suggestions on fall-proofing your home.