[Postie]

I have had Chronic Fatigue Immune Syndrome since 1998. CFS and Lupus have so many of the same symptoms. Since that time my ANA has ALWAYS been positive. It's either been 160 or 320 and it went back and forth. The pattern has ALWAYS been either Homogenous or speckled and again back and forth.

I also had the rash on my face, neck and chest and sun sensitivity ever since 1998. I ran fevers back then of around 102 and 103 but they never stayed. Since last year I really don't get the fevers. The other day I had 100.3. I have debilitating fatigue from the CFS. I am on disability because I couldn't work anymore because of my symptoms and each year I was getting worse. I have orthostatic intolerance and low blood volume (not anemia).

My white count has ALWAYS been around 2's and 3's. When I first got sick it went way down to 1.9. My platelets were al screwed up. But over time, platelets are fine and my white count is always low. January was 2.3 and now is 2.1. My ANA is now 640--which has never been that.

So now the question is this? How do you tell if I have Lupus on top of CFS or just CFS. I have CFS because of the OI and low blood volume.

CindyLo

 

[halfpintfl]

Hi Cindy, first a few questions: were you seeing a Rheumy all this time?, other than your bloods, did you ever make one or several lists over the years of other symptoms? I ask that because lupus is diagnosednot by bloods alone, but very much by symptoms. You need to update your Rheumy or get referred to a new Rheumy and list what you wrote here, and all other symptoms over the yrs. Have you been put on any meds?, if so, name them and put down if they helped or not. That is about all I can think of right now, tell us this and more about yourself and we will help all we can. Be well:wink2: ​

 

[Postie]

Hi Cindy, first a few questions: were you seeing a Rheumy all this time?, other than your bloods, did you ever make one or several lists over the years of other symptoms? I ask that because lupus is diagnosednot by bloods alone, but very much by symptoms. You need to update your Rheumy or get referred to a new Rheumy and list what you wrote here, and all other symptoms over the yrs. Have you been put on any meds?, if so, name them and put down if they helped or not. That is about all I can think of right now, tell us this and more about yourself and we will help all we can. Be well:wink2: ​

I started seein a Rheumy about 4 years ago. I saw him about 3 times and then switched to a new one. My Rheumy knows the symptoms I have. I'm not on any meds yet. I do have a connective tissue disease and that's why this is difficult to determine. The lupus shows negative and I had that done about 4 years ago. But the ANA went up when I had it done this time. The highest it's ever been for me is 640 right now. But I don't know if the white count will drop anymore. Normal is 4 and I'm 2.1. But the rash on the face is what the Rheumy said is pointing more towards lupus instead of rosacea.

CindyLou

 

[Lily]

Hi CindyLou,

I am thinking by them saying your 'lupus test' came back negative they meant just one of the tests used to help diagnose lupus (and there are many, along with symptoms that are important in being diagnosed). The name of that test is Anti-DsDNA test and not everyone with Lupus will have a positive on that, so it's not really necessary for diagnosis, if it is positive though it makes the doctors job a lot easier in sorting out what connective tissue disease you have.

When are you due to go back to your Rheumy, really with an ANA of 1:640, along with a low white cell count and providing you meet some of the other diagnostic criteria (you will find them stuck at the top of the Not Diagnosed Forum) then it's enough evidence to start you on meds. It doesn't matter which connective tissue disease you have they are all treated very similarly, the first drug we take is Plaquenil.

love
Lily

 

[Postie]

Lily

The lupus test I'm referring to is the one you mentioned--the Anti-ds-DNA. I have my copies all here so if you have any questions on any labs, I can tell you what they are. I always thought if you have Lupus then that test automaticaly shows positive.

I go to my rheumy once a year, but my regular doctor does bloodwork throughout the year. She also tests for ANA so since I never really had problems that changed, I only see my rheumy once a year. He also sent the lab reports to my doctor.

When I saw my rheumy, he mentioned they like to start on meds before any problems come up on labs.

This rash I never really knew what it was. I have it on my cheeks and nose and it goes over near the sides of my face. Under the nose is regular color and no rash. Then above the eyebrows is some rash. Then under my neck is regular color with no rash and then it looks like a v and the rest is all rash and part of chest. He noticed how red it was. He said it's a connective tissue because of the separation. I asked him if this looks more like rosacea or lupus. He said it tends to more like lupus. I did get a round red spot in another area and he said that's rosacea. Probably size of a nickle.

CindyLou

 

[halfpintfl]

Hi CindyLou, I am back. In my most humble opinion, I will give you my 2cents worth. A good Rheumy will certainly see you more often than once a yr, especially if he is trying to get a diagnosis, my Rheumy sees me every 3months. Also, there is No blood test that can say "yes" you do have Lupus, or, "No" you don't have lupus. Lupus is called the disease of 1,000 faces, because that's how many other diseases it can imitate. The blood tests are used as a guideline to help the dr. know which way to go, and sometimes rule out something. The rash on the face has caused trouble for many people trying to get diagnosed, my
Dermatologist was ready to pull his hair out the day that I went to him. I tell everbody that is going thru this process to get themselves a good Dermy, he will be the right dr. to tell you if it is roseasa or something else. Keep posting and we will get you fixed for your next appt. Yes, you shouls be on some med, butlike Lily said, Always take only the word of your dr. and if that feels wrong, go back and tell him. ​

 

[Postie]

Halfpint

Thanks for answering my question.

I had asked my Rheumy if I need to see him every year or just every 2 years. He said every year. He said we don't do all the bloodwork every year but certain ones need to be done.

Now with my doctor, she does the bloodwork so I know what it is through the year. She does the ANA and CBC and different ones. Since I don't have pain that's why I didn't think I needed to keep going back every year. Nothing had changed out of 3 years except this time.

He also asked if I wanted to see a dermatologist but I said no because the rash doesn't burn or itch. It's just there. He said he's had some patients he referred to a dermatologist and the dermatologist just couldn't figure out what the rash was and sent them back to him.

CindyLou

 

[Lily]

Hi CindyLou,

Does your doctor send your ANA results to your Rheumy? Maybe it is time to go back earlier than your scheduled appointment in light of your ANA going up?

Halfpint is right in that you should be seen more regularly by your Rheumy. Mine saw me 3 monthly so he could document what was happening to me whilst also monitoring bloods. Symptoms form a big part of diagnosis and the doc usually likes to see them for himself and rule out other causes for their existence.

It would be an excellent idea to get to a Dermatologist too, often they can diagnose rashes by taking a biopsy.

Are you saying you don't have any joint pain, mouth ulcers etc. with your problems? Most lupies have joint problems.

love
Lily

 

[Postie]

Lily

Hi Lily:

My doctor doesn't send my lab results to my Rheumy. I have never about having her do that. But my doctor gives me all copies of labwork so I can see if anything is different.

I know it's normal for lupus patients to have joint pain. I have the muscle pain and not really the joint pain.

These are my symptoms if I can remember them all.

Low white count
severe fatigue
Orthostatic Intolerance
Low blood volume (not anemia)
muscle pain at times

I can't remember what else but there's more. If you have anymore symptoms suggestions then I could tell you.

CindyLou

 

[Postie]

Forgot one more symptom

I also have fevers and forgot to put them with my symptoms.

CindyLou

 

[Jirel]

CindyLou - my mother used to call me CindySue and as one Cindy to another (although I go by Cynthia now) I urge you to find a new Rheumy. Mine saw me once ever 6 months when there was nothing wrong with me but a high ANA. As soon as the ANA was joined by symptoms she started seeing me every 3 months. My last appointment was 6 weeks ago and I will see her on Friday because last time I was having a lot of pain and she put me on new meds.

BTW - nice to "meet" you. :hehe:

 

[Lily]

Hi Postie,

It's time for a new Rheumy or an Immunologist to get everything thoroughly checked out. I can't think of any Rheumy that would schedule visits so far apart and not want blood results sent to him so that he can decide on a course of action/schedule an earlier appt.

However it is strange that your symptoms are not all typically lupus like. Therefore the Immunologist might be an excellent idea, taking along all your blood results and telling them your symptoms. They will do a much more thorough investigation of all possible causes of your immune dysfunction. They are the detectives of the medical world.

love
Lily