Have you ever told someone you have fibromyalgia and chronic fatigue syndrome only to have them wrinkle their nose and say, "That's just a syndrome," or "That's not even a disease."?
While it's true that these illnesses are syndromes, people often have a misunderstanding of what that means. Learn the difference and see what it means for those of us living with these syndrome:
Have you encountered rude or dismissive attitudes based on misperceptions of what "syndrome" means? Leave your comments below!
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Adrienne – very good topic! I’ve been sick long enough to figure these out, but I bet this helps a lot of newcomers. These differences are so important to figuring out how to communicate with others & defend yourself.
I’ve heard that a syndrome (collection of symptoms) is the calm before the storm. It’s what one has before a disease manifests itself to the point of it being recognized by whatever name medicine has given it. In other words, you can have fibro, but if down the road they discover you have lupus, rheumatiod arthritis, etc., then the fibro dx is dropped. Are they still doing this?
Very interesting topic! I tend to agree with what VaBreeze pointed out… first the syndrome then the disease. Although, so far that hasn’t happened to me yet…. Yes, I think “they” are still doing that.
VaBreeze,
I think that’s what they used to do, and they still might with some things that are precursors to other conditions (i.e., I’ve been told I have a pre-diabetic syndrome, which would obviously be dropped if I developed diabetes.) Fibromyalgia is well-defined enough now, though, to be its own diagnosis along with lupus, RA, etc. because no other condition covers the full range of symptoms we get to enjoy.
I just posted an appreciation under the wrong article — CFS syndrome vs disease — though the topics are related.
I find your clarification of disease vs. syndrome very helpful and well stated. It helps to keep me afloat in the waves of obscuring bias and ignorant arguments about fibromyalgia and chronic fatigue that take advantage of their self-generated cloud of complexity to discount the need for research and compassionate care. It transfers the burden of defined etiology and treatments upon the sufferer, instead of the medical provider and researchers. You have deftly shifted that back to where it belongs. I feel a psychological sense of relief. Thanks!
Hi, there!
While I certainly feel better reading your article, it’s pretty hard to get the News OUT There without handing out flyers!
My Rheumatologist diagnosed me with Acute, Chronic and Incurable Fibromyalgia as a Disease 7 years ago. She was ahead of her time then and I’m sure she is now!! I have sinced moved to another state, but found an equally progressive Dr.!
I’ve noticed also, that with the newest commercials about Fibromyalgia, they FINALLY have a male in one! I believe that, too, will speed up the process, when it’s no longer considered a “Women’s Disease”!
Thanks for the Latest & Greatest news!!
Shelley
P. S. The comparison to the acronym AIDS is an EXCELLENT example of what to say to those who want to belittle the word “syndrome”! GREAT JOB!!
^j^
I agree that a syndrome sounds less disturbing than an illness, but keep in mind we have to live with this every day, and most likely for the rest of lives. Many illnesses can be cured.
It is my hope that they will find a cure for CFS and FMS. Finding a virus linked to it is a step.
I would like to make a comment on syndrome and disease just having been recently diagnosed with
sjogrens syndrome
I was then told there is no cure no medicines and
i just have to live with this disease and i call it that because with syndrome when you tell people what you have they tend to say well it cant be that bad if you dont have a disease
but they are not living with this debilitating disease
very good topic
Sjogren’s “syndrome” is a weird one I think. Because it’s an autoimmune DISEASE, why is it a syndrome? (rhetorical question, I don’t expect you to answer!) There are some medications useful for Sjogren’s, so please don’t give up Jo =]
Hi Jo, I was suprised to read that you were told there are no meds for sjogrens. I have it also and have been on meds since I was diagnosied. They have helped with some of the symptoms. You should try another doctor.
Thank you for putting this out there. Boy, I slipped once, and said “disease”, and I got jumped on! “Cancer is a disease! Emphysema is a disease! You have a disorder!” People sometimes miss the forest for the trees. I’ve also had people say that disorders and syndromes do not affect daily life like a disease does. Oh, really? Well, STUPIDITY seems to!
Up until very recently, CFS was not considered a “disease” but the new International ME Consensus Criteria published in the “Journal for Internal Medicine” states that it is a complex disease.
You can read this document at http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf
The last few pages (36 – 29) contain a good synopsis of the document that are appropriate for printing and giving to your doctor or anyone who wants to know the very latest.
Nancy, great document! Thanks for sharing.
Another one to throw back to the docs and others who belittle us having a “syndrome”…
Downs syndrome. Can anyone look at you with a straight face and say there is not really anything wrong with someone with Downs Syndrome? It’s all in their head…right?
Thank you so very much for this article. It is a constant “battle” for me to convince others – especially family that I don’t see often – that I am really sick. I will definitely use your suggestion to remind those doubters that AIDS is also a “syndrome”. I am not one to sit around and think about how much pain I am in or that I can’t get out of chair for 2 or 3 days because I am so exhausted, but, it hurts my soul to know that there are people who just don’t think of me as being sick and therefore they just ignore the fact that I might need help at times. I was a type-A personality – worked my way thru college, advanced in my career to a Senior Mgmt Postion and rasied 2 daughters. I was on go constantly – for the last 8 years my life has changed drastically because of FMS & CFS. It took me a long time to accept my “new” self – I have done that and am very happy. I just wish I could wave a magic wand and get others to understand just how sick I am.
I am so glad I clicked on the link to this article! Thank you for the AIDS comparison; I never thought of this and it is an excellent response to those who say that it is “ONLY” a syndrome!
Hi, I have been diagnosed with these syndromes, Fibromyalgi and Post Viral Fatigue Syndrome G.93.3, in Denmark..
But after sending my blod to better labs for testing, I had chronic infections from ticks and cats who had bit me earliere in life, so German docs have given me the diagnose chronic Lyme disease, a complex disease with several infektions the immunesystem can’t get rit of for some reason..
Many who has chronic pain and extreme fatigue, can have chronic Lyme, sadly not found because of two week tests used in our western world, try to google on Lyme Borreliose, Lyme and Fibromyalgi or ME/CFS and such related and maybe you will get a chock like me :-/
Have you been bit by ticks, have pets or been in places where you can have been in contact with such animals diseases, then you could have been misdiagnosed as me..
In Denmark I still have those syndrome diagnoses, my test for Lyme, Borrelia is still negative.. so take care, be aware the test is no good at all, bad mistakes in most cases, docs and helthcare need to wake up help us, the sooner the better!!!
Of course, AIDS is no longer a syndrome by definition, as we know the etiology, the hiv virus, the consistent signs/symptoms, and the anatomic changes (loss of CD4+ and CD8+ lymphocytes.) So AIDS is a disease.
Of course, AIDS is no longer a syndrome by definition, as we know the etiology, the hiv virus, the consistent signs/symptoms, and the anatomic changes (loss of CD4+ and CD8+ lymphocytes.) So AIDS is a disease.
I was very curious to know this my viva exam question is difference between this two
I was very curious to know difference between this two it is my viva exam’s question
Aids and fibromyalgia are syndromes but alcoholism is a disease.BS. I feel very frustrated that the adoption of psychobabble in the general public has lead to an incomplete understanding of the words people use to judge others by.
If so recognised can someone let my doctors know as they think it’s not even a real problem!!!
Hi Lucy – I don’t think there is anything “wrong” with my daughter with Down syndrome. Different does not equal bad. She has had an amazingly positive impact on my family and our lives and she is happy with her life….what could be wrong with that?
Most diagnoses is given because of symptoms mostly, not because there is a real test for it. You can’t test for Alzheimers, or ALS or many other diseases, not a singel special test – but it is called diseases anyway, the symptoms is clear or is they ?
I know 2 patients in Denmark who is testet and treated for Lyme who doctors here diagnosed with ALS, they are both recovering with help from foreign doctors treating their chronic infections, infections dane doctors can’t find because of too week or unclear tests.
Syndrome is a sad definition on many peoples sufferings- if patients with syndrome diagnoses is better chekket, if every patients get better tests and checked done, there will be a big chance there will be findings of reasons to the diseases in the first place.
The future will show, just be aware and pas this on to everyone. All syndrome is diseases, the problem is doctors just haven’t found the reason!
Exactly as with AIDS, it started as a so called syndrome, but when discovering the HIV, they found the disease or some of the reason for it, infections by a virus that weekning the immunesystem so other patogenes could develope AIDS.
Many years ago when I had to list my medical problems prior to seeing doctor and listed fibromyalgia she sarcastically stated “That is not a diagnosis but a syndrome” so this terminology means to me syndrome means they do not take term serious whereas disease means they recognize terminology. It was a one time visit to see her as I would never continue seeing a doctor who should not even have a medical license.
Adrienne,
have you had anyone with fibro and chroic fatigue with their body making too much red blood? Well my body has been doing it and why I can’t tell you and neither can the drs. I was dx with hyperdrodism and then had a nerve test and they said I have autotomic immune disorder… I’m taking medicine for the 24/7 sweating which I’ve been experiencing for yrs. now.. it helped at first and then it started up again. A hematologist/oncologist took a lot of blood from me and I’m still sweating a little but now like before but I don’t dare stop taking the medicine…. I will wait and see my next blood results to talk to the dr. about it. I also have 3 enlarged lymphnodes in my neck which are going to be removed and biopsied on the 26thof this month… have you heard of anyone else having this problem…its so bad when it happens I can’t function. would you please let me know if anybody else has this problem???
thank you,
ginny