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Is it Fibro or Lupus?
2 Replies
julissawilson2011 - March 28

After having been diagnosed with FM about 9 years ago... I have been thru so many painful days.... I have drank so many medicines, so many, that I have lost track of all the names.. I have seen so many doctors.. and still continue to get worse and worse.. The pain has become intolerable..
Two years ago, i decided to switch doctors to get a new opinion. I started seeing my new Rheumotologist. She ran blood work, and twice it came back with a positive Lupus... my doctors said that the numbers "were too low" to be Lupus,and she again, like many others, said i had Fibro... she gave me Tramadol for pain.. I am now taking 200mg every 8 hours for pain.. sometimes more.. She wont give me anythign stronger.. and Tramadol barely takes away the pain... I cant take this anymore.. I really have days where I wonder if living with this disease is worth living at all.. There are days where i barely have the strength to get up from bed.. and there are good days, where I can get most of my work done. .Recently, I noticed a red rash on my face.. it resembles the "butterfly rash" that those diagnosed with Lupus seem to have.. I get this rash like 3 or 4 times week.. Also , my left kidney hurts alot.. and Ive noticed that I am going to urinate alot more now, even though the amount of water or liquids have not increased... I feel weaker, my face looks pale.. and my memory foggy... Is there anyone out there, that has been diagnosed with Fibro, and then with Lupus ?


mdak - March 29

julissawilson2011-I was just reading your story and It sounds familiar to me. I went through many things like you have. I had test done for lupus and some part was postive, so they started to treat me. I also had a buterfly rash on my face so I was covince that I had lupus. Then something told me to get a second opinion and I flew to Seattle. The dr's said I dont have lupus. I had FM. I went to the dermatologist and he said the rash on my face was melasma. It's caused by my hormones. Gave me some cream and it helped. I too have kidney flare ups, but when I push the fluds it helps. I was on tramadol at large doses. Just be very careful not to overtake. I did and it caused me to have a seizure. One of the side effects is seizures. I hope they can find the right diagnosis for you so you can get the peace and the right treatment you need.


joebenbeth - March 29

i really feel for you i was being tested for lupus at the start and it kept coming back borderline then was told it was FM i also get the butterfly rash and my face feels like it's on fire unfortunatly i can't help with wether it is lupus or not but please don't give up hope we are all here to help and support you as it seems that we only really have each other to see us through just a thought ask your doctor to check your iron level (if they haven't already) as i was feeling the same way and it turned out i didn't have enough iron which made me feel 10 times worse.
i totally understand your frustration with not having stronger meds for the pain as i can't get any as i'm allergic to paracetomol and ibruprofen doesn't work at all so i just have to grin and bear it. you will get there in the end matey just remember we are just a message away if you need us.



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