Lupus and Fm anyone?
I am new here but not new to fibromyalgia. I have dealt with symptoms 20 years. I have a cousin with lupus who is my age. My ana test I took for my physical was low positive. I went to a rheumatologist, referred by my primary dr, 2 weeks ago and will get the results of my blood tests tomarrow. Still trying to figure out if I have lupus or fibromyalgia or both. I have symptoms for both diseases though not a really bad rash.
Somewhat sad today because it is hard to deal with a chronic illness with no cure and to deal with the pain and fatigue daily anyway then not to have understanding and support from your husband really makes it hard. Giving frustrated looks when I am so tired and have to take a nap to get through the evening to take care of my kids, making comments that make me feel bad about myself about the condition of the house or not having a hot meal daily. I do cook weekends and there is food in the house. I work full time, have 3 teenagers, 2 with adhd, and I do the best I can daily for myself and not compare myself to healthy individuals. I try not to let him get to me, but sometimes he can really depress me. Just need to hear that everything will be okay and some positive from people who understand. The unfortunate thing about this disease is it is virtually invisible to people and they just don't understand.
Thank you for listening,
Sunshine (but not today...)
Sunshine; Hi there...I am sorry that you are not recieving the support and understanding that you need for they are two of the most important ingredients needed in order to survive this disease. Let me respond to your issues one at a time:
FIRST: Ask your rheumatologist if your husband can attend one of your appointments with you so that he can explain some of the henious symptoms of this disease to your husband and to let your husband know that your fatigue (that horrible, draining, full body fatigue) is not your imagination and nor are you faking it for sympathy or to get out of doing what needs to be done. He needs to understand that, given the choice, you'd rather be up cleaning house, running errands, and cooking meals...You just CAN'T!!!.
If this is not possible, may I suggest that you purchase the following books for your husband; The Lupus Bood: A Guide For Patients and Their Families, by Daniel J. Wallace and/or Coping With Lupus: A Guide to Living With Lupus For Your Family by Robert H. Phillips. The best cure for your husband failure to support you is his being educated about the disease and sometimes, that education has to come from someone other than you. However, if he does not want to do any of the above...it falls upon you to be strong and to stand up for yourself because you cannot let depressin cause your disease to do more harm that it has already. Know that you are not alone, that there are so many of us out here who suffer with and like you. We are here to support you and to listen to you and provide you with information if you need. You might also suggest that your husband read some of the posts in this web site because they deal with almost all aspects of this disease, especially the importance of support and understanding from our significant others!
SECOND: Fibromyalgia and Lupus - Fibromyalgia occurs in up to 2% of the U.S. population and is a common symptom of LUPUS. The characteristics of FM are widespread pain in the muscles and joints, chronic fatigue, generalized weakness, non-restful sleep. Additionally, you may suffer from headaches, changes in your mood, difficulty concentrating, irritable bowel syndrome and urinary urgency (all of which are also symptoms of LUPUS, so if you have both, your are predisposed to suffer even greater from each characteristic!) APPROXIMATELY ONE THIRD OF ALL PATIENTS WITH LUPUS ALSO DEVELOP FIBROMYALGIA!! Both diseases occur more often in women because of the hormonal factors involved in the triggers for the diseases.
The treatments for Fibromyalgia are somewhat the same as with LUPUS; NSAIDs and other pain relieving agents and sometimes sleep aids. However, with both diseases, it is important to do some sort of aerobic exercise, physical therapy, and even try some relaxation techniques and work on your stress relieving and coping skills.
Remember, YOU ARE NOT ALONE! we are here to help you in any way that we can...
Stay strong, remember to take care of YOU! Find Peace
Thank you so much for your words of support. To know I am not alone and there are others out there who have this and understand makes a huge difference in your attitude and keeps you going. I talked to my brother who is my husbands best friend and also talked to him. We have both been under a tremendous amount of stress and sometimes as with kids as well, all the emotions come out on me. We had a long talk and he now understands and has been supportive. He offered to bring dinner home after work, brought me flowers, and we were back to being ourselves again with our talks about our day. He is going to get me some help with the house now and for that I am grateful. It will take alot of stress off both of us. What a change for the positive!!!
My rheumatologist had a great suggestion for him. He said during his lectures about fibro/lupus, he has the guys take their arms and hold them straight out horizontally and he keeps talking. He said that even the big guys arms get tired and start to lower and he says keep them up there! After a while, he stops them and tells them that is like what your wife is feeling daily.
I found out from my rheumatologist that my tests were negative for lupus. I am grateful because my cousin who is my age is having a tough time. I will keep getting treatment for my fibro and will keep positive. My prayers and support are with all of you. Today I am going to a christian womens conference so that should be inspiring.
Oh my...Just spilled my coffee all over the computer...Gotta go...Thanks again - the sun is back out again!
I am so happy that things are better for you and your husband...as I said, support and understanding are so important. I had to chucke at your rheumatologists' example to the husband's of LUPUS patients. I will have to use that sometimes myself because it is so true!!!
I was glad that you were negative for LUPUS, however, FM has it's own set of symptoms which are so similar to LUPUS. I know that LUPUS patients develop FM, I do not know if the reverse is true. I hope not!!!!
In the meantime, stay positive, take care of yourself and please, join us here anytime that you have any questions, concerns or just would like to share!
Peace and Blessings