Lupus, "Cousin to Fibromyalgia"

Hi~ I guess I have more questions then answers to post here. Well and some observations too.

I have Fibro (9/97) and Chronic Fatigue (8/08) have had Epstine bar, have seizure disorder, and it seems a million other ailments.

But~ so far~ until now~ Lupus was never mentioned.  But Lupus does run in my family~ my paternal Grandmother had the exterier version that gave her leishions (sp?) all over her body and pain.

I currently am having an infection of sorts, in my nose area~ and my face. On the right skin area next to my lips, and about the size of a kiwi I have a red swollen area that has been constant for quite sometime now~ it is very painful to push against from inside/outside the mouth~ where if you did the same pain test to the other cheek, there is no pain what so ever.

The ENT feels I may be  having an immune diffecientsey action/reaction thus causing this infection...possibly Lupus...and has advised me to see another doctor.

Has anyone else ever expierenced anything similar in the area of Lupus? and in corralation with fibro and/or Chronic fatigue?!

Thank you for your time in reading and any info you may have~Cherie

Hi, Cherie -- I'm kind of thinking that there is some 'reasoning' with a correlation with FMS and lupus ... and the best way to explain it is to suggest you download the 20 minute video that is free here on Lumigrate called 'Chronic Illness: Full Barrel Syndrome'.  It just is such a great representation to how chronic illness happens and likely will 'make sense' about your question. 

I work with a woman who has FM and Lupus.  She found out she had Lupus by going to a new doctor for her pain management and he asked her how long she's had it.  She said she didn't know she did and he said, "Well, you do. You have the classic sign, the mask of the butterfly" Has anyone ever heard of this before? It refers to patches of red that show up on your face on each side of your nose resembling butterfly wings.

Yes, a butterfly rash across the nose and onto the cheeks is considered a "sure sign" that someone has lupus.    In actuality, I think it's less than 60% of people with lupus develop this rash.     But a higher percent of people who have that rash have lupus.   

Lupus and fibro share a lot of common symptoms.    However, lupus is certainly more serious as it can attack your organs, causing kidney failure and other similar things.   Fibro doesn't attack the body like that, as far as we know!! 

I had never heard of it before and when I did, I figured it was common. Thank you for the stats on that. 

Here's another one for you ladies.  I have Still's Disease.  It's considered a "sister" disease to Lupus.  To be honest, I don't know the difference, persay, cousin vs. sister, however I can tell you that there is no definate test for my illness - it's a disease of exclusion and it too is characterized by rashes (usually chrimson red) either exquistly painful or extremely itchy, extarodinary fevers at least twice a day and the inability to eat or hold food in as well as tremendous joint pain (not discomfort but actual dibilitating pain).  To bad there's no way to actually test for this, huh?  I was poked, prodded, and pondered over for 11 days before 9 out of 11 doctors walked away with their hands up and heads down.  The only two that remained were my GP (thank G-d) and my very first and absolutely gorgeous but very much married (damn!) Rheumatologist.  They stuck me on 60mgs of prednisone and sent me home the next day. 

Then we moved to Florida and three years later I found out I had FM, YIPEE. let's party!  Here's the point; A lot of illnesses are "related" in some form or fashion.  All those flu bugs for instants; how many RA diseases are there that you can name that aren't related?  Come on, they're all RA disease and they are all special in their own way much like our children...  Yes, I'm being sarcastic.   I've just spent 24 hours with my Mother in law, I'm still trying to shake that off and there's no drug in the world that can help me with that pain!

Take care and be well. 

Zovtic~ you just made me laugh so much~ with the M.I.L. comment!!!  Thank you! I once was in your shoes~ in fact at holiday times I would call my Dr and say "Lisa~ we gotta up the anxiety med until thanksgiving to New Yr's is over!"  and up it she would bless her soul~ she knew and understood! For some reason my M.I.L. has improved and now its just the brother in law~  lol

So I have a couple questions about the 'Stills Disease'~ you say inability to eat, do you mean you can not hold the food down~ or that you have no apatite~ or are you nauseous when you try to eat, because you know you should, but have no apatite~ or 'D' something i didn't say yet??

Does anyone in your family have Lupus? or is this a new illness to your family line?

My grandmother had it both the internal/external forms~ so im so nearvous about it~ so far so good.

I appreciate your info~ thank you for shareing!

Cherie

Cherie:

I'm sorry it's taken this long to answer you.  I've been in a flare up for six months now and it makes life a bit of a challenge plus I have some new tasks that I'm working with and thoroughly enjoying.

Still's Disease does not necessarily run in families.  As it happens a cousin of mine had JRA but she is three times removed from our "line" on Mom's side so I don't really know if she'd still be considered a cousin or not.  It was also "resolved" with gold shots within three years of diagnosis.  I'll be honest, I don't quite understand how that works but she's in her sixties now and living a normal life in Canada.

As for not being able to eat, I was not hungry, knew full well that if I took food in it wouldn't stay with me anyway and nothing appealed to me on any level.  I can tell you, as a fat person (I'm not kidding I really am a fat person), you'd think nothing would stop me from eating, this illness actually did.  And I still have days like that from time to time.  Of course now I know what I can and can't take in and how to do it.  Especially since I have so many medications I have to take.

No one in my family has Lupus, however, it seems FMS is widely spread throughout the line.  I'm sorry to say so is cancer, heart disease and dementia.  Please excuse me if I've spelled it incorrectly.  Needless to say, I'm living for today because I don't remember yesterday and I may not be here tomorrow.  (bad joke). 

As for depression, Cherie, of course I had it.  I battled it for five years and then one day I woke up and my husband said either I straighten up or he's "outa here" so I straightened up.  It took a long time but I did it; I live it daily.  I have bad days sometimes (I'm human) but I'm a lot better off than I used to be.

Tell you what kiddo, friend me on Facebook please.  Anyone that wants to can friend me, the more the merrier!  Please understand I reserve the right to unfriend anyone that causes me undo stress.  That said, I'm Ellen Zweiter York.

Take care and be well.

I wanted to update here (fall of 2011) and put the link to the new piece I posted recently about a very valid-appearing study which showed a connection between ACE / adverse childhood experience and... believe it or not .... autoimmune disease in adulthood.  I want to remind people that Lumigrate embraced functional concepts (underlying) and uses 'integrative medicine' where mind/body/spirit is brought together when looking at wellness/illness.  

The link to my piece about it, which is complete with links to go learn more about the research I was learning about, is:

www.lumigrate.com/forum/cumulative-childhood-stress-and-autoimmune-diseases-adults-fibromyalgia-applications

I encourage people to take the time now to go look, or schedule some time to come back and learn as this is incredibly powerful information related to how a person can get back to what our bodies are inclined to 'be', which is well and healthFULL.  Many today have severe economic hardships and might not be able to afford medical treatments to chelate out heavy metal toxins, for instance, or bolster themselves through supplements, but the GOOD NEWS about the research showing the mind/body connection to illnesses is that people can learn to breathe, meditate, process their past traumas and drink good water and often save money and find wellness.  Then hopefully have more money, time and energy to put into their ongoing wellness pursuits.

This is one of my favorite streams of conversations on Lumigrate; thank you all who have written and I hope it is a favorite and helps all who read at one level or another ~~ Mardy ~~ 

It was all over the television yesterday, with the trial going on right now related to the cardiologist who was working with Michael Jackson at the time of his death, that he was recorded talking about not having a childhood and how devastating that was to him.  Certainly, the ACE questionnaire might need to be adapted for a case like his, and he might not come up as scoring very high on this standardized tool for looking at how a person's childhood was.  

But he did have lupus, and autoimmune disorder which is what the link/above takes you to a discussion about.  I think I have written elsewhere on Lumigrate's forums about what appeared to me to be where his long, sad, and somewhat unusual decline began, when watching shows that have come out about his life: the incident where his hair caught on fire, which legitimately would be addressed with narcotic pain medications seemed to me to be where his life when from uphill and 'at the top' to the things that were little by little 'decline', including having ongoing surgeries which most people agreed made him look, to THEM, worse, not better.  

I was never a particular Michael Jackson 'fan', as I was not into 'pop' music, but I certainly enjoy his music along with a lot of similar greats of the day peripherally.  I certainly always thought he was one of the most inherently talented children and young adults of 'my' day (I was born in 1960).  I was aware of the trails in the past where he was accused of behaviors against children and saw the news the day he dangled his baby out a window and you just can't see something like that and say 'this guy has his head together'.  I've really followed his life more since his death because of my learning about the ACE work of Dr Bruce Perry and studied by Kaiser, which is such well done research and I think really lays down a wonderful road for people to start walking down to find true solutions to health problem and hopefully substantiate the funding of programs to shift children to having the support they need in childhood, so they might have healthier futures.  That benefits everyone in our society indirectly and most directly.  

From my vantage point, here at the Lumigrate 'home base' near the Utah border in western Colorado and generally following this interesting and tragic case, I hope that some good can come from the way that Michael died.  I see so many similarities in his case as with other complex cases where people have been given narcotics which leads to an unraveling that the person does NOT realize has to do with the narcotics!  They think the drug relaxes them and helps them sleep, without realizing it affects the way the brain rests/sleeps and then the body actually goes into chronic problems that, if a person has the resources of money and time to energy to seek out more drugs, can end up with a road that goes badly.  And they're difficult people to talk with sometimes about the narcotic aspect that is truly part of the root of their problem with sleeping or chronic pain, etc., because without the drug they are REALLY miserable.  

I understand this:  I was given narcotics for sleep back before Lunesta came out.  I had another doctor come along who said 'try Ambien' and suggested I rotate them each / other night.  I did not feel well the days after I took Ambien and reported that and nobody's  went off that it's because I didn't have the narcotic and I was addicted! So I was taking narcotics 100% of the nights, not taking Ambien but the chart showed I had Ambien and the sleep narcotic so perhaps it wasn't a great big red flag related to weaning me off of a narcotic.  I didn't have any experience with this stuff at the time -- this was a doctor who had really read up on fibromyalgia and insisted I needed to sleep 8 hours a night and the regular dose of the narcotic had only had me asleep six hours, which was a very normal amount life-long for me, and he'd raised the dose/doubling it.  

Then when Lunesta came out and the long-awaited drug rep got to his office, that doctor handed me samples (meaning no pharmacist was involved to potentially catch an error a physician is going to make on a drug they recommend/give), and I went home and took Lunesta that night.  Slept GREAT.  The next few days I started developing a myriad of awful things going on and finally my  went off and I looked it up online 'benzodiazapine withdrawal' and found out that there was a HUGE error made!  I should have been transitioned to a different benzo for a very short time, then titrated off of that. Instead, I went 'cold turkey' and was in full blown detox and the website said that once you were in that state there was nothing you could do.  It would take about a year for the symptoms to improve and whatever you had at the end of a year was probably going to be the way things would be for the rest of your life.  (However, that is conventional medicine thinking and complementary medicine believes in being able to restore the body if you get the problems out of the way that keep it from getting to 'well', it's baseline the body/mind/spirit gravitates towards.) 

For others to learn from: I have twice had physicians born in the 1960s who were very 'lax' about being concerned about 'the N word' (Narcotics --- The F word is Fibromyalgia.  Hey, I gotta have a sense of humor with this stuff!  )  The first one was the woman who initially switched me from the safer sleep aids to the benzodiazapine.  I think the reason for that was cost; that doctor had come into my life when I'd had a bad fall and hurt an ankle and she handled me well in the 'urgent' appointment the next day, and within six months I was out of a job based on my employer not wanting to give benefits to someone who had 'fibromyalgia' (hence my calling it "the F word").  

The second was about ten years later and said, as he prescribed Xanex for the first time in my life to me for 'sleep', "people say to me 'what about becoming addicted and my response is 'so what if you become addicted? Just keep taking it!'   This did not set right in my gut and it happened to occur just before I met a big-wig in the US in addictionology, who really helped me learn about the way the usual narcotics repress the respiration center as well as interfering with the sleep cycle and as a person goes through the cycles as the night goes on, the later ones are the ones that are most 'restorative'.   

And in between the two of them was the one who boosted me on the narcotic amount then didn't pull me off right.  Both men consider themselves fibromyalgia 'specialists' and fancy themselves to be progressive and have been 'leaders' related to integrating with chiropractors, naturopaths, and other alternative providers but they end up solo because, from my experiences, they're so 'soaked' in the ConMed way of doing things, such as I experienced with my narcotic prescriptions.  

After that experience, I was SO adverse to narcotics that I didn't even want anything along those lines when I had an abdominal hysterectomy five years ago! I truly would have done better had they not given me anything but ibuprofen but the doctor naturally couldn't believe that it would be better without, but I went home on ibuprofen within 48 hours and was out the door to a dinner party within 72 hours!  I realized in lying in the hospital bed, nauseous for 24 hours due to the way my brain interacted with morphine, which I'd never had before (or since), that my years of chronic pain and my background of learning yoga BEFORE I had fibromyalgia, then deepening my breathing techniques with Mindfulness Meditation when I found the book "Full Catastrophe Living" by Jon-Kabatt Zann and purchased the tapes that went with it -- yes THAT's how long ago, it was before CDs!  (sp?, apoligies if I have that wrong)

So I have long 'known' and 'believed' in the mind/body connection because I've just 'been there' with it.  But when it comes to things like the mind having a part to play in autoimmune dysfunction, THAT does make sense, it just was a step beyond where I'd been before with my knowledge and beliefs.  I hope this has taken you steps forwards as well, IF this is to resonate with you/for you.  And if not, that's fine too.  Everyone has the freedom to believe what they wish.  I just hope people open their minds to these concepts to be considered, at the least.  And hopefully to also tell others about, even if it isn't what a person believes for themselves.  

To wellness.  Live and Learn!  Learn and Live Better!! ~~ Mardy  

As time has gone forward and we've created new content at Lumigrate here in the forums, I like to remind people to check out the information in various forums because the most newly added things or added onto things will float to the top of the list. 

One item that I'd hope people would find is about is our suggestion to follow a resource which embraced early on the 'overlapping conditions' information. Fibromyalgia Network: Here's the link to the topic at Lumigrate I set up to introduce them and suggest people for SURE know about them as a resource -- and WHY I respected them and suggested them. www.lumigrate.com/forum/fibromyalgia-network-us-based-resource-education

Outside the Box of Conventional Medicine, History Shows Slow Progress -- as we head towards functional and integrative medicine is another topic I would suggest a visit to. The topic has MS being associated with Lyme/ borrelia as a major cause. I realize this thread was about lupus, another autoimmune disorder in the allopathic way of categorizing, but it's turnout out that all the neuro-degenerative disorders from ALS and Alzheimers to Parkinsons and everything in between and through to the letter Z if there is one, has borrelia/Lyme now turning up as a co-factor. Lyme and autism are being now seen as the same underlying causes and treatments. Etc. 

www.lumigrate.com/forum/outside-box-conventional-medicine-history-shows-slow-progress-functional-integrative-and-other

The other suggestion is not a topic but rather a whole FORUM that is a mother lode, treasure trove of information that is from environmental medicine expert MD Marc Spurlock, who became the 'resident expert' MD in our second 'layer' on Lumigrate, which was just after this thread / topic about lupus was created. Finding an MD who was interested in the Internet as a tool for education and outreach was something critical to Lumigrate and which our initial, local MD was not set up to do (including collaborating on Facebook with conversations, etc.), as his focus was simply a bit different. So we've ended up over the years having more 'facets' of experts than I'd originally envisioned. Here's the link. Please be SURE to see the topic "Are You Loaded?" which is about load theory --- the title goes on to say something about why so many patients from the young to the old. 

www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/fibromyalgia/f

I have to say, this thread brings back some fond, fond memories of some incredible women who were on Facebook and found out about Lumigrate in our first year on the Internet, none of whom had much or any experience with anything but allopathic medical model. I hope everyone has benefitted and grown in whatever ways they were to grow, from having crossed paths here. May we all be finding the best health and well-being we can, and contributing to those behind us on the path of life have an easier time of it than we have. And Lumigrate 'got off the ground' because of this kind of dialogue and interaction and is one of the facets I speak of, above... the abilities of the consumers who have these conditions were incredible! And it showed just how getting NEW information to people is a process, and it unfolds gradually as the old system of sick medicine is replaced by the new system of functional medicine which Lumigrate is all about. Good to have such 'grate company' along for the ride. 

Gratefully ~ Mardy