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10/24/2010 01:43 PM

Lupus? Fibromyalgia or other?

bboo
 
Posts: 134
Member

I feel all I'm doing at the moment is asking questions, but I need to ask this one so please bear with me! How do doctors decide if you have one illness or another? I've read that Fibromyalgia is an auto-immune disease and yet my blood test for immune function came back ok, so I'm told, but they tell me I have FMS. When I look it up and look at the list of symtoms there seems to be very little difference between them for Lupus and Fibro! My blood test for lupus also came back ok but I hehear that you can have it for up to ten years before itit shows? Are my hands and feet, thighs and nose desperately cold as symptoms for fibro or is it raynauds? Is my vertigo just vertigo with no cause or is it menieres? What about the left side of my face going numb, sometimes just around my mouth but sometimes right up to my eye? I feel like people will think I'm attention seeking, but please believe me when I say I'd like nothing more than to have my old life back. The list of symtoms seems endless sometimes. How do I know for sure what it is? Does anyone have any info which might help?
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10/24/2010 01:52 PM
mumeva
mumeva  
Posts: 6143
Group Leader
I'm an Advocate

It is hard to distinguish what disease is what....sometimes they call this I believe connective tissue disease if you have more than one. Some of my labs came back negative for Lupus but some of them came back positive. My doctor doesn't go by labs alone....she listens to me...examines me and looks at the lab so she looks at the whole picture. I also have fibro...which is the muscles and I have CNSV Lupus and along with that is vertigo. Trust me I would love to have my old life back too but I know I can't so I have learned to live with the one I have now. It gets pretty confussing looking up all the symptoms and coming up with all these illnesses. So what does your Rheumatologist say? I know other members will chime in soon.

Eva


10/24/2010 02:26 PM
redhairali
redhairali  
Posts: 3739
Group Leader

Hi, as Eva said it is very hard to separate AI diseases. They do seem to overlap and mimic one another. Lupus should not be diagnosed just with labs. Your doctor should look at your whole medical history. It seems like labs sort of come and go depending on lupus activity.

If you feel that your doctor isn't doing enough, find a new one. Not all doctors are right for treating AI diseases.

Alison

Post edited by: redhairali, at: 10/25/2010 08:28 AM


10/24/2010 03:20 PM
Looopie
Posts: 2164
Senior Member

It sounds like you have multiple organ involvement from the lupus, rather than the fibro. Our friends have a good suggestion for you to seek a second opinion from a different rheumatologist, so that you could receive treatment for the advancing lupus. The lupus is not diagnosed from blood tests alone, and involves assessment of further tests and symptoms. Hope you will receive the treatment that you need. Marie

10/24/2010 03:38 PM
mar1976
mar1976  
Posts: 98
Member

I am so sorry that you are suffering. I want to say first that fibro is NOT an autoimmune disease!!! It cannot harm your body in any way but it is dibilitating in it's own painful way. Lupus, raynauds are autoimmune diseases. Lupus has 11 criteria that is used to determine if you have this disease you must have 4 of the 11 either seen and documented by a doctor, seen in pictures or in your blood. Most people with lupus do not test positive to all lupus blood tests. It is important that you keep a journal with all of your symptoms even things that you think do not matter, take pictures of rashes, lesions or ulcers. Make sure that you go to the Lupus foundation of America website or Mayo Clinic Lupus website and research lupus. Fibro and other diseases that are autoimmune can cause the same exact symptoms as lupus. Lupus is called the great imitator b/c it shares so many symptoms with other diseases autoimmune or not. Lupus or another type of autoimmune disease will cause swelling of joints etc, rashes, ulcers witch fibro will not cause. It is very hard to be sick and not know what it is no one wants to be ill. Most of us with lupus suffered for years before we knew what we had. When you have a mixture of 4 or more autoimmune diseases of the tissues it is called mixed connective tissue disease. This is usually with people that have lupus, RA, scleraderma, raynauds etc. When someone is determined to have unspecified connective tissue disease it means that you are sick like someone with lupus but it is not shown in your blood and you do not fit all 4 criteria for lupus. You may have unspecified connective tissue disease. It is treated with plaguenil like lupus and can at some point develop into lupus. I hope this has helped if you have anymore questions I would love to help. Best wishes and gentle hugs.W00t

10/24/2010 04:17 PM
zizzcat
 
Posts: 515
Member

I'm very new at having a diagnosis of Lupus but I went to all sorts of doctors for years looking for answers. Eventually, I found a good doctor 1 hour and 15 minutes away. I thought a good doctor was worth the extra miles and time. 3 years ago a lupus anticuagulant showed up in my bloodwork. He has never forgotten that although the hematologist and rheumatologist thought nothing of it. At that time my ANA was positive. My kidney function had dropped to 25%. My doctor eventually ran an immune disorder panel after finding something relating to immune disorder in regular bloodwork. I showed up at the appt. and had by then developped a malar rash. Something else turned up positive even though the ANA was negative this time. I talked to him about the pain in all my muscles and in my kidneys and in my stomach and my head. He knew it would take a while to see the rheumatologist and diagnosed me and put me on plaquenil. He has by now known me for three years.

For me this is all just beginning. We have 2 rheumatologists in the towns that are 1 1/2 hours away. I have some questions for my rheumatologist as well but they will have to wait until I can get in to see him.

I hope that you find the sense of resolution that you are looking for.

Hope


10/25/2010 03:06 AM
bboo
 
Posts: 134
Member

Thank you for all the information and help with this. Very much appreciated. I will take the advice, thanks again.

10/25/2010 10:03 AM
Lupie
Lupie  
Posts: 305
Member

Bboo -

I have both Lupus and fibromyalgia. There are many different "overlapping" diseases/syndromes that tend to show up with lupus and fibro is one of them. Reynaud's and Sjogrens are 2 others. Both Lupus and fibro have some overlapping symptoms which can make it confusing as to which one is flaring. I still don't always know. But, with time, you'll get to know your body better you will figure it out. For instance, when my fever is high, I know it is the lupus, not the fibro.

Wish you the best of luck.


10/25/2010 05:57 PM
Mariah13
Mariah13  
Posts: 198
Member

Glad to hear it isn't just me that is frustrated by the answers I get from doctors. First my rheumy said he was diagnosing me with Undifferentiated Connective Tissue Disease. He said I had four, but only four, of the markers for Lupus, but that he was conservative about giveing someone that diagnosis because it did terrible things for your insurance situation. He later told me I was positive for Reynaud's and Sjogren's syndrome, but he was still thinking I was "possible lupus."

I finally asked him what was the difference in how you treated UCTD and Lupus, and he said none. Both are treated with the same medications.

Bottom Line: Don't get too concerned with diagnoses. The only people that get concerned are insurance people. Instead carefully note your symptoms and report them to your doctor so he/she can adjust and or change meds. That's what has worked for me.

Hugs and blessings to you all.

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