It was “wild” reading this. It was like someone has been peeking in on me except I wasn’t being as careful as she is. I still fight to do more than I should but I pay for it. And yet I’m lucky there are others that have a harder time than I do. I need to appreciate that more. Bless You for reminding me to keep my chin up.

FYI……I have had fibro  and CFS/ME  for 20+ years. Many people with chronic illness due suffer depression due to the physical pain, sleep deprivation, cognitive changes etc. I am not being treated for any psych issues.  

I got fibro after suffering from Lymes Disease.  Infectious doctors treat fibro due to this link….Many different doctors treat fibro. Including: rheumatologists, internal med, general practioners, neurologist etc, etc.   Psychiatrists do not.  They may be need to address the depression/anxiety but the physical aspects are treated my medical doctors, physical therapists, acupuncturist massage therapists and chiropractors.    

We don’t know what causes fibromyalgia, and even the risk factors are not entirely clear.  More women than men get fibromyalgia, and it usually develops in adulthood or middle age.  A family history of fibromyalgia and a personal history of rheumatoid disease (such as arthritis or lupus) increase your risk.  Some people believe that poor sleeping habits, mental or physical trauma, and repetitive activities (such as difficult physical labor or intense sports) increase the risk.  Some research suggests a connection between Lyme disease and fibromyalgia, two conditions that are often confused because they have similar symptoms.
Treatment is aimed at controlling fibromyalgia’s symptoms, since there is no cure for the condition.  The treatments you should have depend on your symptoms.  Usually, muscle aches and stiffness are treated with heat, massage, stretching, and exercise.  If those non-drug treatments don’t do the job, pain medications or steroid injections can be used.  Relaxation and stress relief techniques can help reduce aches and pains and also lessen sleep problems, depression, and anxiety.  Acupuncture gives some people relief from stiffness and pain.  …….   American pain Association

Since having lupus increases your risk maybe you should prepare yourself……..wouldn’t that be ironic.  Then you could walk in their shoes and finally understand.  Fibro is treated by medical doctors, not shrinks.  Rheumatologists, neurologists, infectious doctors, general practioners, physical therapists, acupuncturist….  It is real……I pray you never have to find out first hand what it is like although, that might be what you need.  Show some compassion for your fellow humans……whether they suffer from physical or mental illnesses makes no difference.  We are all here to support each other.  Your ignorance is offending to many.  I pray you have not caused further duress to those individuals.  

I am appalled by the lack of compassion from a particular post.  How dare you come to a site that is suppose to be supporting all those who are suffering with chronic illness and try to discredit certain individuals and their illness.  Fibromyalgia is not a psych illness but even if it was, it is still a disabling chronic condition.  We are here to support one another not belittle someone.  Shame on you.  You are not a very bright academic – that is obvious.  Where is your compassion for fellow humans?  I would not wish Fibro or any other illness on my worst enemy.  But maybe you need a dose of it.  Temporarily of course…..just to walk in those shoes.  Some of us don’t need to experience cancer or MS or whatever to support those victims and  to have compassion for what they are going through.  I pray your judgement and ignorance hasn’t caused any further duress to these individuals.  

Hi! Thank you for sharing
this story it was very touching .. I am going to share this site with a lot of
people, just as I can use this theory to explain my illness a little better to
people in my everyday life. Thankfully i have less things to worry about since
my condition isn’t physical, but still, i only have so many spoons a day and
just getting up seems to cost me 2 already.

This post makes it very easy to understand our situation, even
for people living a healthy life that might not be aware of it

Once again, thank you very much for this article.

 I never implied that SLE (Lupus) is not a real disease.  I, and many other academician, believe that fibromyalgia is a somatiform psychiatric disorder and not a physical disease.

I have had Lupus for 12 years and now, due to SLE, have ESRD (end stage renal disease) and get hemodialysed 3x per week until (if) a RLA match allows me to be transplanted.

It’s the constant whining of the fibros- and their equating their psych syndrome of somatization to real, chronic, objectively documented, terminal diseases such as MS, SLE, RA…we are really sick and we die of our horrible physical diseases;  fibromyalgia is a benign condition.  It is mass hysteria, secondary gain from the “sick role”, somatizating, co-existent psych diagnoses that makes persons with fibromyalgia particularly distasteful to us with chronic (and terminal) physical disease.

 Scand J Work Environ Health. 1997;23 Suppl 3:7-16.
Somatization and fashionable diagnoses: illness as a way of life.
Ford CV.
SourceDepartment of Psychiatry and Behavioral Neurobiology, University of Alabama at Birmingham, 35294-0018, USA.
AbstractThe
history of “nondisease” dates back, at least 4000 years, to early
descriptions of hysteria. More recently somatization became a part of
the official diagnostic nomenclature by creation of the DSM III
category, “somatoform disorders.” Somatization can serve as a
rationalization for psychosocial problems or as a coping mechanism, and
for some illness, becomes a way of life. One variation of somatization
can be the “fashionable diagnosis”, for example, fibromyalgia, multiple
chemical sensitivities, dysautonomia, and, in the past, “reactive
hypoglycemia”. These disorders are phenomenologically related to
environmental or occupational syndromes and mass psychogenic illness.
Fashionable illnesses are characterized by (i) vague, subjective
multisystem complaints, (ii) a lack of objective laboratory findings,
(iii) quasi-scientific explanations, (iv) overlap from one fashionable
diagnosis to another, (v) symptoms consistent with depression or anxiety
or both, (vi) denial of psychosocial distress or attribution of it to
the illness. Fashionable diagnoses represent a heterogeneous collection
of physical diseases, somatization, and anxiety or depression. They are
final common symptomatic pathways for a variety of influences including
environmental factors, intrapersonal distress and solutions to social
problems. A fashionable diagnosis allows psychosocial distress to be
comfortably hidden from both the patient and the physician, but
premature labeling can also mask significant physical disease. Hysteria
remains alive and well and one contemporary hiding place is fashionable
illness.
PMID:9456062 [PubMed – indexed for MEDLINE] Free full text

 Yeah, you clearly do need and deserve help.  I’m sure mental illness is a horrible thing to live with.  My point is the fibromyalgia is another mental illness.  Why to people with it (if it even exists) not accept that there is nothing wrong with them physically.  It is in their head-psychiatric illness is mental illness not physical illness.  Yet, the fibros continue to argue that they have a physical “disease”.  Army Wife, why do you have neuropathy?  Tat is a physical diagnosis and neither PTSD, major depressive disorder, anxiety, borderline personality disorder (most fibros are borderlline personality disordered, and panic attacks.  All of those are psychiatric issues- then, you say neuropathy, which comes from a physical disorder, but you don’t say why you have neuropathy.

Certainly you have all sorts of horrible things going on.  I’d rather have a physical disease than a mental disease.  My point is not that mental illness is not horrible;  it is that fibroyalgia is not an illness- it is a syndrome.  Fibros commonly have co-existing psych disorders (see Creighton University studies on fibromyalgia).  Fibromyalgia is another psychiatric disorder;  there is nothing physically wrong with them.

I can’t read through the comments. It’s depressing and this post deserves better recognition. Thank you, Christine, for finding the energy to summarize and share with us a positive and seemingly effective way to provide an explanation to those near and dear to us that want to understand. Sometimes I forget that it may be very frustrating for them to not know what it’s like but to know that we are suffering. It doesn’t matter what health conditions and diseases I have, what matters is that I am lucky enough to have people that love me enough to want to understand. They need that knowledge because they want to help any way they can.

My first diagnosis came at 18 and many have followed but I lived a life with many spoons in my hand for 18 years and now at 28, I am slowing down way more than I’d like to admit. My social life is nonexistent and it’s difficult to explain to those that want to spend time with me why that is. Thank you for providing a tool by which I can make them understand that it’s not at all that I don’t want to hang out or go shopping or attend a birthday party, it’s just that I don’t have enough spoons left over. 

Why would you want to bring someone down if you dont have it dont complain or state stupid facts and fibromyalgia is cronic body pain…this is a place where ppl learn about a great story to use when they are sick and feel down right upset when someone doesnt understand what they arr going threw…so if your not a doctor dont criticize what your not going threw bc one else did. and if the other comments made you angry don’t read them then!

 Tabitha,
These are 2 really excellent books that help explain Asperger syndrome to those who don’t understand it.

http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/1843104814
http://www.amazon.com/Can-Tell-About-Asperger-Syndrome/dp/1843102064/ref=pd_sim_b_1

 a woman just wrote of her brother having ALS.  the writer above you has MS.  Most of us have Lupus (SLE).  ANd yo think YOU have the right to e thought of in the same league as us who have life-threatening diseases!?  Fibromyalgia (muscle weakness is all it means) is NOT a disease or medical diagnosis.  It is a syndrome, or a group of complaints- (and fibros sure do know how to complain!!).  It is a benign syndrome. NOTHING is wrong with you.  How DARE you add your pathetic fibromyalgia whining to the voices of those who have real, chronic, and terminal diseases.

I get angry when I read the comments.  Many of us have serious, life threatening or life altering PHYSICAL diseases.  Then , a person with depression and fibromyalgia (usually with another psychiatric diagnosis such as PTSD, agorophobia, anxiety disorder, etc, ad nauseum) adds her comparative complaints.  Do you fibrofolks not understand that fibromyalgia is 1) NOT a disease, but a syndrome, or a group of complaints.2)  Fibromyalgia is a benign condition.  There is NOTHING physically wrong with you. 3)  The diseases that you think you are a part of- SLE, MS, Leukemia, etc.  are all serious threats to our health and to our lives.  FIBROMYALGIA means muscle tiredness.  You have tired muscles:  nothing more.
Why don’t you get your psychiatric needs met- your PTSD, sexual abuse as a child, depression, anxiety disorder, agorophobia- taken care of at a psychiatrist?
FIBROMYALGIA is a psych diagnosis and NOT a disease.
The rest of us here are really, genuinely diagnosed with real physical illnesses.

As someone who suffers from chronic pain, etc (too much to list), the spoon analogy is brilliant. Just the other day I used up all of my spoons by taking a shower and because of that I was unable to attend a Ladies Night Out tweet up. Choosing spoons wisely is an everyday event but sometimes it doesn’t matter if you choose wisely, because the shower used them all up.

Wow, typed in ‘Help I’m sick and can’t get well’ into google search and this is what I find… a true treasure, thank-you Christine. I’ve been living with a painful auto-immune disease for 25 yrs. Originally diagnosed with Lupus and in 2006 ‘they’ took that label off and just say it’s vasculitis, either way it is what it is and your spoon illustration totally spoke to my heart bringing tears as I KNOW THE SPOONS all too well. I’m sharing this with my friends and family, I feel it best describes my life and hope they too, like your friend, will have a deeper understanding of what it’s like to live with day to day. Again thank-you and hope this finds you today with a fist full of spoons 😀

My mother was just diagnosed in December 2011 with Multiple Myeloma. I completely understand the spoon theory and after reading to my mother, she agreed.  

I have Lupus and I first heard of the spoon theory many years ago. I shared the link to it with family and friends and my best friend used to pick me up for doctor appointments and other things that had to be done. I think he understood the spoon theory better than anyone else. He could always look at me and know wether or not I had enough spoons to make it to do what I wanted to or not. He would tell me “you don’t have enough spoons for that and I’m taking you home now.” About 3 years ago he had a hear attack and stroke. I joked a little with him that he would have to watch his own spoons now and he said not spoons-forks for me. That fall we got married. He still trys to tell me to watch me spoons. I recently shared the spoon theory with my sister-in-law as I was preparing a display for our mother-in-law’s memorial. She understood immediately since she has Fibromyalgia. I make things when I am up to it and made her a necklace with a spoon on it and told her that this was her reserve spoon and to be careful how she uses it. She laughed and gave me a big hug. I didn’t have enough spoons to go to the memorial but I was able to make it very nice for the rest of the family! I have my own spoon charm on a necklace and love to tell people about the spoon theory when they ask about my spoon. I give them the link to the site so they can read it for themselves. You tell it so much better than I could on my own. I thought it was about time I sain “THANK YOU!” for making my life easier with the spoon theory.

Thank you! I have fibromyalgia and spoon theory fits me perfectly! thank you for you fb page it means a lot for me that I live in Italy and here fibromyalgia isn’t considered at all….

I don’t have Lupus, But I do have Fibromyaliga, and Osteoarthritis And all of these issues are how I have to deal with day to day issues as well.And I love the way you explained the spoon therapy, but many times I can tell that the person I’m talking to doesn’t understand and after you talk a few min you can tell by Therese face they either lose interest, or don’t believe it. Thank you for putting it into words

Christine, this is brilliant. Thank you, thank you, thank you. I have psoriatic arthritis, but the experience is the same. I have shared this with so many people I know, and I feel so much better understood than I did.

 gail, i can relate…..i had my sister in law say oh you get tired….wahhh so do I. And also said…..oh you hurt I have an ulcer. Everyone hurts get over it. It kills me, the looks people give like you are faking it.  It is just so hard at times because people use your spoons for you lol

Thank you for this

Someone else get’s it!!<3

thank you for this it has really helped me understand my son so much better. He has had ME for 5 years now and is now 24yrs old.

Wow. I cried as I read this and am still. I don’t have Lupus, but am exhausted as I lie in bed at 1:30 pm, drinking coffee, waiting for my ADD medication to kick in.

I don’t have physical pain as much as discomfort, but mentally, every task costs me a spoon.

I need to shower but fear I’ll need to take a rest after that, before picking up my son at 2:40. Then I might need to rest when we get home before tackling his homework and dinner.

I say this not for pity but to let you know I think I understand and appreciate seeing this spoon theory so much. It’s exactly how I feel and have never been able to explain why I can’t do everything even though I desperately want to be the energetic hopeful person I once was for my son, who I love dearly.

My heart aches mostly that I’m unable to nurture his precious curiousity and interest in everything. What a sad waste to have this wonderful little boy, but lack the resources to help him thrive.

Thank you so much for posting this and best wishes to you.

Sincerely,
Erik Naa