View Full Version : Hello from Texas.......or Howdy..

09-15-2007, 05:13 PM
My name is Julianne and I am soon to be 50. I was diagnosed just a year ago this month and have been on Plaquenil 400mg for the past 8 months. I have done some reasearch on Lupus and have found that most of the symptoms are nondescript. This is why I am in this forum is to see what everyone else experiences from their Lupus.
I think I have a mild case, only because I don't have organ involvement. I have painless hematuria and have had that for 9 years. My husband is in family practice and my main complaint was that I had pain in my index finger and big toe. I also had pain and swelling in my right knee. I had him run some lab on me (RA and ANA) to see if it was arthritis. My ANA came back 1:640 my RA was neg.
I have been to one physician who specializes in Lupus, he told me I have 7 of 11 criteria.
So, you might think I'm not horribly affected by Lupus but here is my main complaint. My arms and legs will start to ache..almost the feeling when you sit on your foot and it falls asleep....... just when it is waking up is about the same feeling I get in my arms and legs. Does anyone else experience this? I am just now getting over my second case of Shingles...When ever my body is stressed or insulted, the same pain comes back in my arms and legs. Last year I had awful pain in my hands when it got cold. Anyhow...thanks for reading this. I look forward to exchanging information.
For now,

Pretti in Pink
09-15-2007, 05:59 PM
Welcome Julianne,

I live in Texas as well and I know there is at least one other person in San Antonio. You've found a great cyber family to join. If someone doesn't know the answer they will try and find it. I am fairly new to Lupus myself, just over a year ago as well so I am still learning. I'm sure our administrator and others will drop by soon with some answers and welcome you.

09-15-2007, 06:36 PM
Thanks Kitten....Perhaps we can meet someday here in San Antonio.

09-16-2007, 11:00 AM
Hi Julianne; :lol:
Welcome to our family. Since you say that you experience pain in your hands etc when it is cold, I want to talk to you about Raynaud's Syndrome. Does the color of your skin also change? Many of us with Lupus also suffer from Raynaud's Syndrome. Raynaud's syndrome is a disorder that affects the blood vessels in the fingers, toes, ears, and nose. This disorder is characterized by episodic attacks, called vasospastic attacks, that cause the blood vessels in the fingers and toes to constrict. Raynaud's syndrome can occur on its own, or it can be secondary to another condition such as scleroderma and Lupus. For most people, an attack is usually triggered by exposure to cold or emotional stress. Once the attack begins, a person may experience three phases of skin color changes (white, blue, and red) in the fingers or toes. The order of the changes of color is not the same for all people, and not everyone has all three colors.
Also, pain in lupus is not always due to inflammation. Many of us suffer from painful, burning muscles and aches which complicate or co-exist with our Lupus and which can be caused by the following:
fibromyalgia, avascular necrosis of bone, bursitis and tendonitis, other types of arthritis, or infection. The most common cause of these aches, pains, burning and tingling sensations is Fibromyalgia. Fibromyalgia is a chronic disorder that over 30% of lupus patients also suffer with. Its characteristics include: widespread pain, burning and tingling in the muscles and the joints, fatigue, generalized weakness, non-restful sleep.
Lupus and fibromyalgia may look similar on the surface, but in fact they are very different disorders. Unlike lupus, fibromyalgia is not an autoimmune disorder and does not cause any inflammation. It also does not interfere with organ function. However, people with lupus often develop fibromyalgia ( it is very rare for fibromyalgia sufferers to develop lupus).
The confusion between lupus and fibromyalgia may be due to the fact that many of their symptoms are so similar. Like fibromyalgia, lupus symptoms tend to come and go, and can take the form of sudden flare-ups. Like fibromyalgia, lupus is also associated with extreme fatigue, muscle pain, and circulatory disorders. In fact, as I've mentioned, up to 30% of lupus sufferers develop fibromyalgia syndrome after they have been diagnosed. Lupus and fibromyalgia are both rheumatic conditions. Fibromyalgia is a type of soft tissue or muscular rheumatism and does not cause the inflammation, joint damage or deformities that can be caused by Lupus.
Diagnosis of fibromyalgia requires fulfillment of all three major criteria and four or more minor criteria listed below:
1. Generalized aches or stiffness of at least three anatomical sites for at least three months
2. Six or more typical, reproducible tender points
3. Exclusion of other disorders that can cause similar symptoms
1. Generalized fatigue
2. Chronic headache
3. Sleep disturbance
4. Neurological and psychological complaints
5. Joint swelling
6. Numbing or tingling sensations
7. Irritable bowel syndrome
8. Variation of symptoms in relation to activity, stress, and weather changes.
Since it appears that you have some of the major and minor criteria, perhaps you should ask your husband and your doctor about this possibility and/or the possibility of Raynaud's. Please let us know what you find out and remember, you are not alone and we are here to help you in any way that we can.

Peace and Blessings

09-17-2007, 09:57 AM
Thanks so much for the info. Even my rheumatologist does not understand the irritation I get in my arms and legs. I have noticed it is usually when I am stressed (emotionally or physically), tired or overheated (living in Texas doesn't help much). It is interesting you would mention about Irritable Bowel. Just a year before I was diagnosed with Lupus, I was having extreme stomach pain. One visit to the ER and multiple tests later reveiled IBS. I did not know there was a connection to IBS and Lupus. How does the Lupus affect the bowel? What is the patho-physiology behind IBS and autoimmune? I am adopted but know my biological side very well. My bio-mom had Raynaud's and I have a half-sister who has Alpha-1-antitrypsin deficiency (genetic disorder).

I am a RN-BSN myself and always look for answers. It seems as though Lupus is a poorly understood and understated disease process. What (as a nurse) can I do to help others?

Thanks. :wink:

09-17-2007, 06:09 PM
Hi Julianne;
It is not Lupus that has IBS as a symptom, it is Fibromyalgia. Lupus and Fibromyalgia are similar in some ways and different in others and many of us with Lupus also suffer from Fibromyalgia and IBS. 60% of IBS patients also suffer from fibromyalgia syndrome (FMS). Conversely, as many as 70% of FMS patients have reported experiencing symptoms of IBS. Fibromyalgia and IBS are both functional disorders, therefore tests to find the origins of the pain often come back negative. Given the co-existence of IBS and FM in so many, it is reasonable to consider that there is a connection. Even though IBS affects the gastrointestinal tract and FMS affects the musculoskeletal system, there are similarities. Neither condition can be explained by organic disease; both are considered functional disorders. Both occur frequently in women and the onset may be during a stressful event in life.
Researchers have found that people with IBS and/or FMS respond to pain differently than other perople. However, IBS patients have an altered response to visceral (intestinal) pain, while persons with FMS have an altered response to somatic (skin and muscle) pain. Studies have shown that people with both conditions have an altered response to both types of pain. Additionally, people with severe IBS are much more likely to have FMS than those with less severe symptoms.
Although researchers suggest a common mechanism for both disorders, that common mechanism is still unknown. Irritable bowel syndrome (IBS) is a condition characterized by chronic or recurrent abdominal pain. Fibromyalgia is characterized by widespread muscle pain. Despite the difference in the location of body pain in these two syndromes, similarities in the conditions have led researchers to suspect there may be a similar central nervous system problem in both. Researchers found that women with IBS demonstrated more activity in an area of the brain called the anterior midcingulate cortex when they experienced the rectal pressure than when muscle pressure was applied to their arms. The midcingulate cortex is a pain-processing area of the brain that commonly is activated in studies of muscular and abdominal pain. In women with both IBS and fibromyalgia, the same brain area was more activated following muscle pressure than following rectal pressure. The researchers say these findings suggest that although the site of body pain is different in IBS and fibromyalgia, the central nervous system mechanisms underlying pain are probably similar. A better understanding of these mechanisms may lead to the development of more effective treatments for these conditions in the future.
The medical community has only just recognized IBS and FMS as legitimate disorders and not some psychosomatic problem. So, it stands to reason that research on either condition is still in its infancy, and studies showing a connection between the two have practically never been done. However, there is hope, as researchers and those in the medical fiel are now taking new interest in both Fibromyalgia and IBS and in discovering why the two conditions seem to be connected.
Researchers have found that fibromyalgia aggregates in families, which means that the family members of people with fibromyalgia were much more likely to have fibromyalgia.
I hope that I've answered your question.
Peace and Blessings

gin mccarroll
09-19-2007, 06:09 PM
I really don't know how to post??I live in DeLeon,Texas but visiting Pa. now.I have S.L.E. and would like to converse with other Lupus people.Thanks,Gin

09-19-2007, 09:28 PM
Hi Gin :lol:
Welcome to our family. It is fairly easy to post. On this website, there are twelve (12) forums. On the bottom right of each page, you will see a drop-down menu. Click on that and you will see the twelve forums. Click on the forum that you think fits the question you'd like to ask or the subject you'd like to read or discuss. Once you get to that page, you can start a new topic or reply to a topic.
I am sure that you will find many people here who are more than willing to chat with you, answer your questions, support you and give you information. I'm glad that you joined us :lol:

Peace and Blessings