Could I have CFS & lets say Lupus?

[judi]

I have so many peculiar things going on (like all of you), but Sunday was just odd and now I'm questioning if this is something that could be ME related or well I just don't know...

I was feeling like ass Sunday, I have this thing where it feels like the back of my brain is trying to push it's way out of my skull.... it's a kin to dizzy and it "seems" to happen when I sense movement, like a train, sound, or oddly at the end of the day. It also happens when I lay on my left side (Lupus?). But that's not what this story is about.... ha

So I was feeling dizzy and weird Sunday and I had some new small sores on my leg and arm (left side as well) and I decided that I wasn't going to let it get the best of me and that despite feeling horrid I was going to push my body as hard as I could and go out and do things like plant, shovel, etc. I had read something here about Sunlight and copper and I thought well if I have too much copper in me this might be helpful despite my body not wanting to participate......

So it was more difficult than it should be, but i just kept pushing (mind over matter) and as the day progressed I became less dizzy and I sweated a little....not as much as I would have before stopping all medications, but enough to make me feel like that was a positive. When I was on ambien, I was sweating constantly, my hair was drenched at all times, but after I stopped it, the sweating came to a total halt which seemed odd, but..... what do I know? Not much.

Now here's where I'm really confused, I came in sat for a few minutes to cool down then went up to take my daily scalding hot shower and while in the shower, the glands in my neck below my jaw swelled up a lot. so much so that I couldn't swallow water without a great deal of pain. I just can't stress how painful my neck was and it was driving me nuts because it was also itchy. I spent a few hours just scratching it. I went to bed and was mostly recovered by morning.

I'm fairly convinced that it was the sun that caused the nodes to swell, but all this has done is further confuse me. It is my hope that someone here may have some kind of thought on this that could help me gain some insight.

sorry for being so lengthy, but like most of you, i think that most everything is a clue to what is at the root of each symptom and I guess that's my way of saying maybe more is more in this case.

be well

 

[judi]

I just realized that the title of this may be not exactly what I'm trying to ask..... I guess what I'm trying to say is that as of late, I feel like my immune system is confused and trying to go in multiple directions, like some days I'd swear to you I think I have the symptoms of ME "and" Lupus or ME "and" scleroderma or ME and only ME. So the title is just really my way of saying do you think it's possible to have two immune disorders or is it just ridiculous of me to try and guess without testing...okay I see I just stated the obvious, but man oh man doctors are just so hard to manage, they always have a mind of their own!!!! damn them all to hell

 

[justy]

Hi Judi, i think it is unlikely that you would have Lupus AND M.E. But you could have something other than M.E. Have all the posibilities been ruled out? What tests have you had, if any?
I have a pretty classic case of M.E - but due to all sorts of other symptoms i am still trying to get my doctor to rule out Lupus, Sarcoidosis and MS.
FWIW i think that the more i research the more i see how similar M.E is to an autoimmune disease. Which would not be surprising as that is the way many are thinking. We can have all sorts of strange symptoms that are very similar to other diseases, and if you read up on them, they also have many simialrities to each other.

Take care, Justy.

 

[judi]

Thank you for your response Justy, I've had no tests because doctors think I'm a lunatic or something along those lines. Last week I finally went to a doctor affiliated with/at Northwestern because I was thinking that I might be histimine intollerant based on things I've read here, she thought it was acid reflux (no tests) and prescribed prilosec, but I've not taken it, because I want to have a better understanding of things before I antagonize my gut anymore. She referred me to a dermatologist probably for a biopsy (I assume) for these spots I've been getting for years.

I feel like you, I feel like I have a classic case of ME, but after starting and discontinuing (ambien, cymbalta, nuvigil, zoloft, fosinopril, losinopril, and some diuretic) things have gotten very blurry. I've read that you can get drug induced lupus and I guess I was thinking that somehow I had both and that the lupus was only a result of medication.

I'd like to get tests, but it seems you are having a problem ruling things out as well so that causes hesitation for me because i'm still not clear on what it is I need to do "first" - pre ME I thought going to the doctor was what one did first, but now I'm starting to realize I have to educate myself first and man oh man my brain is totally not down with that.

 

[Sushi]

Hi judi,

Here is a blog by someone who was diagnosed for years with ME/CFS, treated with Ampligen and about everything else you could think of, and now is showing signs of lupus. It is a horrible saga to read but I am linking it here as it does go through all the symptoms and tests.

At the moment her doctors think she has a Mixed Connective Tissue Disorder--an autoimmune disease mixture of Lupus, Schleroderma and Polymyositis.

Here is the link to her blog: http://theglassmountain.wordpress.com/2012/04/26/from-ampligen-to-autoimmune/

Sushi

 

[judi]

thank you sushi, I'm scared to read it though, but I will right now and again, thanks for sharing it with me

 

[judi]

wow, I just finished reading it and all I gotta say is wow, so many similarities, but not all, this answers my question and I think I do have ...wow. Thanks, I'm going to read it a few more times to really absorb it, but I think this pretty much sums up what I wanted to know. Thank you

 

[Sparrow]

For what it's worth, as far as I know I have "just ME" (have been tested for a number of other conditions to rule them out), but "just ME" seems to be plenty to cause all kinds of crazy stuff in our bodies. I know I've had all kinds of crazy, and I'm sure I'm not alone.

Tons of us get an odd sensation in our heads, particularly from mental activity or sensory overload. I often feel like by brain is three sizes too big for my skull. And with too much activity, we get classic illness-type symptoms (like swollen glands, etc.). So it may be just a classic case of ME without lupus or anything else involved, though that doesn't make the symptoms any less bad. It could just be that either the work in your garden, or standing in the shower, or the temperature change, or something you did yesterday, or any number of other things were just too much for your body to cope with gracefully.

If it is the ME, you might want to begin to be very cautious about any kind of exertion that gives you a temporary worsening of symptoms or makes you feel ill afterward (sometimes there's a delay as well, so you might not feel sick until the day after whatever you did to overexert - sometimes you can't tell at the time that it's a bad thing at all. I've had times that I thought I was feeling great at a particular activity level...until a day later when the ME truck ran me over). Generally that seems to be a good sign that whatever you did was too much for your body to handle (however manageable it seemed at the time). It seems to often be the case that over-extending yourself that way over and over tends to gradually lower your level of functioning (so your bad days will get slowly worse and worse, but your good days too - and it can get pretty bad pretty quickly. I had a series of those dips early on and then just didn't bounce back from one of them, and am not alone in that). Avoiding those lows seems to speed healing for some, or at least help to prevent or slow worsening.

The thread below might help. A number of people described what "post exertional malaise" is like for them. There are a lot of commonalities, though we're all slightly different too. Maybe you can see if you recognize any of what you're experiencing in what others have described there.
http://forums.phoenixrising.me/index.php?threads/describe-your-pem.15934/

If you haven't read it yet, you might also want to check out the Canadian Consensus Criteria. There's a chart on the 8th page of the document below that mentions some of the range of symptoms that can come along with ME. You can also do a search for the International Consensus Criteria, which is a little more up-to-date, but I don't have a link on hand for.
CCC Summary Document:
http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

And if you already know all of that, just ignore me. I just know it can be tough to navigate everything when you're kind of new to all this and not feeling great to boot.

 

[hixxy]

Shouldn't Lupus always show up with an elevated ANA? I know many people with ME have elevated ANA, but if you don't have elevated ANA, it's highly unlikely you have Lupus? Checking ANA should always be one of the initial investigations your doctor does when looking at this kind of disease (ME/CFS).

 

[taniaaust1]

I posted to you today on your other thread.. suggesting as Sparrow did to read the canadian consensus doc.

ME has so many symptoms, the symptoms can present like so many different things.. eg lupus, MS etc Lupus thou is something you should try to get ruled out. (im pm you something with tests ive been putting together on it, to give you more of an idea).

One thing which I have to comment on

She referred me to a dermatologist probably for a biopsy (I assume) for these spots I've been getting for years.

spots or sores? Maybe if you linked a photo of them .. someone may be more able to suggest what may be causing them.

the glands in my neck below my jaw swelled up a lot. so much so that I couldn't swallow water without a great deal of pain. I just can't stress how painful my neck was and it was driving me nuts because it was also itchy. I spent a few hours just scratching it. I went to bed and was mostly recovered by morning.

I'm fairly convinced that it was the sun that caused the nodes to swell, but all this has done is further confuse me.

How do you know it wasnt the exercise (post exertional symptom) which caused your nodes to swell?