Greetings! I have had a fibro diagnosis since 2007, but I am thinking I may have lupus too. My doc said that she tested me for lupus and it is negative, but I have all the symptoms except a positive test and the facial rash.
I get a red, pimple like rash at times and definitely get the mouth sores and kidney and bowel issues.
My exhaustion, which I am treated for, and brain-fog fall into both problems.
I would love any thoughts someone has to share. I am limited as to my options for docs, but I am considering a change as mine is great, but getting into her is a nightmare, especially for a flare so she never sees me at my worst. :(
Please share any advise, thoughts, or other factors you think I should consider. You will NOT offend me!
Not sure why you think you have lupus- and what 'kidney' issues you are having Lupus kidney issues involve actual damage to the kidneys and is readily apparent in lab tests And bowel issues are not specific to lupus but can be anything from stress to diet to illness itself. Since all your labs are negative and you like your doc you might want to stick with her Good docs that you can relate to are not so easy to come by.
When you're having a flare and can't get into to see your Rheumie, go see your PCP or an urgent care. Then, get a copy of your visit and take this with you to your rheumie next time. Do you keep a symptoms journal? Get pictures of your rash to take in with you when you see her. I agree, if you have a great rheumie, why change? I also have fibro, and my rheumie feels my fatigue from my fibro is the bigger issue for me right now.
What kidney issues are you having? Kidney issues are real straight forward and a serious emergency. The doc better not miss those results!
What lab results are positive?
I have both and was diagnosed with fibro (diagnosed with symptoms only) before my autoimmune complex which includes lupus. Fibromyalgia can make you miserable and feel foggy and/or exhausted. However. foggy and exhausted in fibro usually is due to lack of sleep. It's duh and can't get out of bed for lupus--at least it was me.
keep a journal of what happens and when it happens and what was going on that could have made you feel worse. This helped me do not forget dates and times.
I assure you that if you had kidney problems related to lupus your doctor would jump on it! Most kidney problems that lupus causes do not have any symptoms till very advanced and even then many people are not aware their kidneys are being damaged. I know i been there...you really do not want kidney problems.
If you like your doctor, than trust her. She is going to give you the best treatment out there. I understand you are new to this and not sure what to do etc. She knows what worse is i am sure since you like her.
You might read a few fibro books and / or subscribe to fibro magazines...such as National fibromyalgia and Chronic Pain Association or NfmCPA...here is link...had really good part for newly diagnosed patients. http://www.fmcpaware.org/nfmcpa-proudly-serving-the-fibromyalgia-an...
tell you about treatment, how diagnosed etc..and even how other diseases can go along with fibro but the list is huge.
so i would worry most about learning how to take the best care of yourself with the fibro. good luck
Hello, I too was first diagnosed with Fibro in 06. About 1 1/2 ago things started to change. My face was bright red on my forehead and cheekbones. Would come out if I was in the heat and sun, and did not go away until like January or longer! Also would have bad breakouts of fungal rashes, which I still get. Then the pain was different than my ususal Fibro pain. It was in my elbows, hips, knees, sometimes feet and ankles. Also muscles in my arms and legs. I felt like my body was morphing into something a lot different. Would sometimes get a canker sore in mouth, and even got one in my V jay jay lol! Which at the time I did not know that was what it was, and the dr. I was seeing at that time just thought it was a little cyst of some sort. Oh can't forget the bad headaches after 10 mins. in the sun. There are a lot of different symptoms, and sometimes it takes time for it to have a REAL flare, for it all to add up. I also test negative, but it takes a long time, and to be in a flare at the time of test. So it's hit or miss. A lot of this is a waiting game until it truly rears its ugly head. Hang in there, I know it can be very frustrating and depressing.
Thank you all so much for your comments and thoughts. All are much appreciated! ReallyRaffy, you describe some of what I am dealing with much better than I did. Good to know I am not losing my mind completely!
Thanks for the way you describe the fog. I have the duh and can't get moving issues as my muscles simply refuse to move from tension and cramping as well as pain. Obviously, I wasn't sleeping well with the pain, but I use a sleeping med to sleep and still have the problem in the am. I will continue to log symptoms and see what she says at my next appt. Thanks so much for the input.
ChrisAnne
USAGURL said:
ChrisAnne,
What kidney issues are you having? Kidney issues are real straight forward and a serious emergency. The doc better not miss those results!
What lab results are positive?
I have both and was diagnosed with fibro (diagnosed with symptoms only) before my autoimmune complex which includes lupus. Fibromyalgia can make you miserable and feel foggy and/or exhausted. However. foggy and exhausted in fibro usually is due to lack of sleep. It's duh and can't get out of bed for lupus--at least it was me.
I hope you are participating in the fibro forum because people describe most of what you say you have as part of the fibro.
Like bowel, mouth sores and even pimple like rashes!
I think that is what makes fibro so hard is that so many people have it in varied ways but really that is true of many other diseases.
I hope you post on fibro sight and ask about others having same symptoms and see if you can find others like yourself. You can find out how they deal with those symptoms.
I agree about if you think yours is great why change her? Also why not trust her? You might want to think about the latter question and why it kind of appears that you cannot trust her to have your best interest at hand.
But check on fibro sight....and also see how many people there are so frustrated with their doctors. good luck
I was dx’d with fibro over 10 years ago. I started to have new symptoms about 5 years ago, and have been bounced around to different drs since then.
My rhuemy and my PCP say that symptoms from fibro do not progress, but they can’t explain what has been causing these other symptoms. I have a positive ANA but a neg anti-DNA, so rhuemy says not lupus. She blew me off for about a year Until I told her I was just treated for uveitis. She then started plaquenil. She still won’t say “lupus” but she says its not fibro, it’s "something auto immune"
Don’t know if that helps.