Is Fibromyalgia All In My Head?

My daughter with Primary Juvenile Fibromyalgia HATES the psychologist, because when she tried to talk to the woman about how she felt, the psychologist would twist her words, and insist that she meant something different. We came to the conclusion that she doesn’t “believe” in fibro. When my daughter said, “I feel so tired, and it HURTS.”, the psychologist would say, “So, you feel like giving up?”, and my daughter said, “Heck no, I am not giving up. I feel exhausted, and it hurts. But, I NEVER give up.” My daughter eats spinach salads and goes for long walks, and does whatever she can think of to feel better.

We stopped going to doctors. It was just one more unnecessary source of stress — a psychologist who couldn’t understand. On top of a pain management clinic doctor who didn’t have a clue, who prescribed expenseive medicines that made her depressed, gain weight, and didn’t help with the pain at all.

I read an article by a doctor who said he stopped referring fibro patients to a psychologist, because it became clear to him that it was a PHYSICAL illness. This has became very clear to us, as well.

A psychologist might help someone who struggles with the realities of coping with a chronic condition, but a psychologist isn’t going to help a well-adjusted person who is struggling with fibro.

It’s not in your head. It’s in your mitochondria.

This seriously pisses me off, and no one gets it, but you look great!!!!!! Try exercise, you know it’s proven that will gove you engery, try eating very healthy, try vitiams!!! Grrrrrr bugger off!!! Sorry just so unwell today and sick and tired of ppl!

Great post! I frequently doubt my fibromyalgia when I’m having a good day. I say to myself, “if only I try harder I could work, etc.” Then I look up jobs and remember all my dysfunctions. Or I have a bad day when nothing relieves the pain and I’m on and off hot baths, heating pads and Bengay.

But people don’t want to hear about pain because they don’t want to identify with their memory of pain. Also, in this culture you are stoic or you are a wuss. You cannot be admired if you show signs of weakness (pain is seen as a weakness). It’s really a dilemma what to say to family when you can’t provide some service because it’s too late in the day and the opioids you take prevent you from driving. I have to say it over and over and Im sick of it. Maybe I’ll just say “No, I can’t” and leave it at that.

Feelings are all in your head, but feeling hungry doesn’t mean you’re not hungry, and feeling pain and fatigue doesn’t mean that you’re not in pain or fatigued – it’s a non argument really – anyway try living without a head!

An ignorant doctor told me years ago “It’s all in your head”, I asked if he could get it out, he said that he couldn’t – ‘Well we’re screwed then’ I replied.

Those who say “You don’t look ill” need to be told that they don’t look like a doctor either.

Day by day,,,,,, one has to think….’ well, do I feel good enough to get this and that done ‘, cause tommorow is another day we don’t know what that will bring,
My level of go go energy has sunk. I used to be able to do so many things, as mentioned, people know you worked harder or played harder, think you are slacking off. Some days I have to say ‘ it’s ok to slack off today’. Sending my best thoughts to fellow Fibros.

I’m male with fibromyalgia, but I rarely tell other males. They tend to think of it as some sort of female psychological disease or they have never heard of it. Women, and women doctors, tend to be a little more understanding, but even some of them don’t really believe in it. I’d rather a doctor tell me I have fibro and there is no cure rather than question the fibro itself. As a male I feel like I am supposed to be tough and not complain, so I rarely talk about fibro expect to medical people. It’s hard doing things like cutting the lawn, lifting stuff, taking out the trash…easy things become hard and physically demanding tasks are near impossible.

My estranged mother said that to me- “It’s in your head.” That’s probably why she is still estranged!! LOL

I’m lucky, I see a rheumatologist who does not doubt fibro at all. I was having problems finding a good primary care physician for everything else and he referred me to an internist he knows.

The first thing my new internist / PCP said to me was “You probably know more about fibromyalgia than I ever will, so relax and talk with me. How can I help you?”

It was a dream come true….

Fibromyalgia brings so many issues to life in sometimes opposing ways. On one hand, we do need some level of validation from trusted individuals. On the other hand, we don’t want to leave ourselves vulnerable by seeking approval for what we know is not in our heads.

As Adrienne’s writing reminds us, we must do our best to keep our shield in place and not subject ourselves to the disdain of others. And when we are surprised occasionally by the individual who “gets it” and is supportive and nonjudgmental, then we know we have in our circle a true ally.

Adrienne
I was also told by my GP that it was all in my head. That was bad, but what was devastating was religious folks telling me that it was actually demons causing the illness !

Thanks for this, Adrienne. Yes, I even question my own illness, as I wrote in a previous post. Then I remind myself that maybe I’m feeling better because I’m still on my fibro meds. I was thinking about a trial off of them since we’ve just conquered two physical sources of chronic pain: my sleep (with a CPAP) and my shoulder / neck pain (shoulder impingement from arthrosis – surgery), Then I got to thinking about what was said in the other strand this week. While I feel much better than I did last March, I still need long naps to have the energy to do things I used to do before my FMS kicked in. I still pay for several days if I do too much. I still have some floating pains, although these are minimal, due, I think, to my treatment regimen.

And yay! So glad to hear that Lyrica will go generic. It can’t come soon enough for me. Even with just a co-pay – it’s steep.

So – about this topic – I recently turned down a request to work a week-long charity fundraiser that I did for 10 years. In her email, the person requesting my help said that she had heard I was doing better now. Well – probably because I’m so tickled with the results of the shoulder surgery, I’ve been a bit talkative about the results around my colleagues. It’s the same circle. Anyway – I asked my husband what he thought about me working a few shifts (standing on a blacktop drive in the sun taking ticket money at our county fair for 4 hours) and he just laughed and questioned my sanity – nicely.

Well – I wrote back and told this friend that I couldn’t, and in the effort to continue education about FMS, pointed out that I have to budget my energy, even when it seems like I’m doing well, because that’s what it takes to continue feeling well. I also said that FMS doesn’t go away. I may have offended her because I haven’t heard back (it’s been about a week), but it was a letter I needed to write. It’s calming to have this settled in my mind. So again – thank you.

I’m having a problem with my Dr. right now. I had the same Dr. for years and now this new one wants to refer me to a pain clinic, which I’ve already done. I can’t stand the thought of starting over with a new Dr.
Anyone know of a good Dr in Denver Colorado?

It took me years to not be “ashamed” for having fibro. Now, I hold my head high and proudly say I am a survivor! If you look on my FB page I do not hide from anything! I post many links and pictures about fibro and I have NEVER been doubted! If they do, they don’t or post to me, that I am aware of. If they do, then F*** them! I don’t hide anymore. Fibro is part of me and my 12 year fight with this illness has made me the person I am today.
As for doctors, I have been rarely doubted. It only happened once. I was told by a neurologist that if I just took ibuprofen and got a good night’s sleep then I would get better. Needless to say that I told my PCP that he should NEVER send anyone to him again! I have been very lucky to have found doctors to help me along my road these years. I wish you all good luck in finding doctors who will help and understand you just as I did.

While I was waiting for my SSDI to come through, I lived with a friend I’d known for decades, and her family. After a year of watching me sleep all the time and be unable to do basically anything, she informed me that I had “identified with being disabled” and “had accepted it as who I was.” She equated this in her mind with giving up, when she knew “I could do better.” That was over 11 years ago. Just last year, she was giving me suggestions on what was “really” wrong with me. I finally called it quits when I expressed some solidarity with her sister, whose recovery was slow from a knee injury, but whose doctors were insisting she was just being lazy in her exercises. “I can relate,” I said to my friend pointedly. “Yeah,”, she replied, “but my sister’s actually disabled.”

Did it make me crazy? Oh yes, enough to cut off that long term friendship over it. I’ve gotten confirmation of the reality of my illness from medical experts, and a clean bill of mental health from a few different psychologists. I know it’s not just “in my head”, and frankly, I don’t have room in my life for anyone who thinks it is.

Still hurts, though.

Oh, How I so relate to the other comments-I have had this disease for a long time-male and a health professional- Had to give up everything and finally won a “disability favor” as a former friend and peer once said. “In my head?” Sure! Thats why I gave up a 6 figure salary- my house,my “friends” everything.
I would try and explain to people who only saw me when I was having a good day, but I got the “oh if you take more vitamins and exercise, you would have more of those!” comments. Asked to do something and explain about saving energy or having to pay in spades for some simple task and I often would get the “OK,I think I understand” reply-then my “friends ect”, who I think have a grasp on my medical problems,who I would like to see on my good days, just fade away. No calls, or visits and if you visit them on a good day, they are just heading “out the door.”
Finally, since this is the first time I have ever actually commented on your wonderful page( you have kept me out of the depressive,”am I the only one who has that problem” state of mind so many times I can’t tell you), the first doctors I saw ,when I kept my regular scheduled appointments ( and this was when I had no clue what was going on and really needed my peers to at least be supportive) would just come in, say “so you’re back for more drugs” and would leave.
In My Head? So what’s in yours’!
I have a very supportive doctor now who works with me in treatment,
but being male and a former health professional ,I get stubborn and tough it out a lot of times with very few medications- Foods are one of my biggest triggers, and over doing the good days.
LIfe is much better , because I finally realized that I just go as I can
Some understanding friends would be so nice, but If not then as Wendy said F***them! I didn’t ask for this, but I will damn well survive it one way or the other!

Please feel free to edit if you wish.

I guess it’s about meeting expectations, not just everyone else’s, but our own, too. It’s very hard to give up things I’ve enjoyed doing, now I cannot go out at night anymore, and when I need a day in bed, I take it.

I’ve lost friends because I didn’t know how to say: “I am too ill to drive over there.” They were often older than myself and didn’t believe what I couldn’t do. So much that I cannot do now. Standing, sitting for more than 1 hour and a half, being hot, being in the sun, walking more than two blocks at a time, being with too many people, or/and too much noise, climbing too many stairs, etc. I’d love to emphasize all I can do now, like read books, discuss, take classes, and leave when I must. All of this only became possible when I took Xyrem and got good sleep.

Cindy – I live in Denver (Aurora) and go to Colorado Rehab (CROM) and the doc I’ve seen is good. I was diagnosed last year and have finally gotten on a medication regimine that works and people have actually told me they think I look better than I have in over a year!

Dee, I loved your comments as I do all the others on here. Hope everyone has a great Saturday.

This is a great site and the comments are such a relief when someone questions this terrible illness. I liked so many of them and really needed to read them and the article today.
Have a great weekend (if you can) !
Joyce from Baltimore

Thank you. Thank you. Thank you. I cannot say it enough. The article today and everyone’s comments, were perfectly timed. Answered a lot of questions, and made me aware of more symptons of our illness. I can now breathe a sigh of relief, and get on with my “new” life as I know it. I’m used to saying “everything in moderation” in regards to my diet, as I am a Type 2 diabetic, but now I can say it in relation to everything I do. I will now be able to speak to a particularly toxic friend today, and make myself heard, one way or another.

May everyone have a great weekend!

For the most part, I’m a closet fibromite. It’s much more of a reflection on me & my very private ways than the actual condition. I suffer in silence & find much gratification in the various support webites like this one. Like many, I have co-existing conditions, the worst being osteoarthritis. It’s pretty widespread & combined with the fibro, it makes for a miserable quality of life. Combine that with fears of what the future may hold & it becomes terrifying. I fight it with all the might I can muster. I swim daily & walk as much as I can tolerate. I eat a very healthy diet & keep my weight down. I experimented with a drug here & there but didn’t stick with any in that they only made me feel worse. If medical marijuana is approved in my state, I will probably give that a try as I feel it’s “natural.”

All in my head – I only wish. Like many, before this got me, I was very active & loved life. There was no psychological trauma that led to my condition. My childhood was a happy one free from any abuse of any kind.

Life is unfair & we’ve all been dealt a bad hand. Of course, we know it could always be worse. When I read of those who suffer from flares I become envious in that I am in a constant state of discomfort. I tell myself I have a choice – I can either end it all or continue to battle it with taking the best of care. For now, I choose the latter.

georgia

It is always refreshing to read other comments that validate the way I feel. No one can understand the difficulties and pain of fibromyalgia unless they are suffering from it. I have had the condition for 30 years and, believe me, with that long of time, I have heard the “it’s in your head” more times than I can count. My grown son claims that I am just depressed and lazy and want sympathy. When a little thing causes pain, he says – “Oh – that little tap can’t hurt that much!” You can imagine how much his “comments” hurt. I also had a high figure income doing a career that I loved more than anything. I would hardly give that up to pretend to be sick so that I can live on the wonderful income of SS $700 a month, thank you very much! I used to be a very involved, high intensity person, so any day that I can’t do what I want to, is a tough day.

This is the rest of the post from the above one – it was too long.

Friends don’t understand that the only time they see me is when I have the energy to go out! Of course, I look good! I get dressed up, wear make-up, had a good night’s sleep and just got up from a nap. I will smile and be charming for an hour or two and go home for a nap. No one, not even my caregivers sees the times that I am writhing on the bed crying in pain, or when I am dropping everything and spilling and don’t even have the energy to make myself dinner. Giving up what we had and who we were is the hardest part – worst than the pain and dysfunction. No matter how many studies verify it as a real disease or how many tests we personally have that confirm the diagnosis, those closest to us will still believe we are malingerers. Maybe it is just that it grieves them too much to see how much we have changed and the sorrow THEY feel makes it hard for them to accept it as real. They may feel that encouraging us to do more or suggesting remedies, will be the magic thing that helps us. Maybe it isn’t out of frustration with us, but frustration with what is hurting us. It might be out of their fear, which shows that they really do love us.

I have to agree this was one of the most frustrating comments ever made to me. I had one physician say I needed stress management, even though I was on Cymbalta, and a rheumatogist tell me I just needed sleep. If it was that easy, I assure everyone that none of us would be here searching for ways to cope and looking for suggestions from others who experience the same symptoms.

I did have one physician, the one I see now by the way, point out that she understands my symptoms and that I should be thankful I do not have any issues that she could find on lab work or MRI, etc. I assured her I am, but explained how that normally only makes it harder for people to see we really are sick.

I have only just joined this mailing list, and it’s bringing tears to my eyes to hear the comments of people who actually get it, and who feel the double dose of pain of firstly having to deal with the disease, and secondly the hurt of having people believe that this reality is one that you have chosen live. Of course we want to live a better life, of course we want to do more. If you are like me, you probably already do more than your body will allow, because you do love life, and do so desparately want to be involved and active in so so may things. The most painful thing is definitely having having people believe that you could just switch this off.

People don’t understand things that they haven’t experienced or that they can’t see. About the best that we have to show it is a word on a piece of paper saying that this horrible reality actually exists. I would never wish on another person that they had this so that they understood, the fewer of us the better.

Hearing all of your stories is definitely bringing me comfort. So thankyou all, and chins up. We deserve to enjoy those good days when people see us out and active, of course we put on brave faces and choose to smile and believe that we are well. So much the better that we actually no there are others of us out there. Take care all.

I’m usually too tired to care when someone says something like that. I might say something like : I wish it was all in my head! Then I just talk to someone else or change the subject.

I’m usually too tired to care when someone says something like that. I might say something like : I wish it was all in my head! Then I just talk to someone else or change the subject.

Thank you for all your comments! It certainly makes me feel that I am not alone in this illness! I had one Doctor who questioned my side effects….I quickly changes Doctors! I have a wonderful Doctor now…although she does not know very much about the illnss, but, she is sympathetic and caring and never makes me feel “it’s all in my head”! My advice…keep trying Doctors until you get a good one! They are out there! We are all in this fight together! God Bless!

My sister tells me that I am sick because I “haven’t dealt with my past” and if I did I would be cured. I don’t talk to her anymore.

Hi,
Before I was diagnoised my family would say that I am a hypochrondiac, then, drs said it was in my head and sent me to a shrink. I thought once I was diagnoised with something, anything it would change…but it did not. People who don’t live with the disease don’t understand. I feel as though people think I lie about how I feel…coworkers, family, doctors, strangers, etc. Nothing any doctor did worked until I went to the rheumotoidologist. Even with her diagnosis people don’t believe me and that was 17 years ago that I was diagnoised. Someday people will learn and when they do, I hope they remember how they were to those of us that have helped pave the way.

Twice. I had an internist that I had been seeing for years. I tried to talk to him about CFIDS, and he was contemptuous. I found another internist.

I had a psychotherapist who told me at the beginning of treatment that she believed CFIDS was a “real” physical illness. After maybe three YEARS she admitted that she believed all illnesses could be internally cured by the patient if they had the right attitude and spiritual development. I found another therapist.

I don’t talk to my sister-in-law anymore who told me my problem was not excercising. I tried to explain things to her but I finally gave up and said she was right. You expect family to listen and believe you.

My sister has anointed me with 4 names instead of one. I am often referred to as “My crazy sister Sandra.” This to the point that her husband, whom I have only met a few times because we live on opposite sides of the country, refers to me as crazy.

She also made the comment one time that she was sure she was going to get “stuck” with me because I am 12 years olde than she and I have multiple health problems. Never asked her to plan on being “stuck” with me and hell will freeze over before I do.

You could say I am estranged from my family. I haven’t spoken to any of them for about 4 years because I just got tired of the constant put downs.

I have CFS, hypermobility, fibro, etc. The funny thing is, I’m a former high energy professional whose body started to really break down sometime around 2006. Others were incredibly skeptical someone with my personality and ability could be so weak and dysfunctional at times. Instead of realizing people can change physically because of underlying diseases, and how this inevitably alters the afflicted person’s behavior and viewpoint, some suspected me of intentionally being lazy and thus dishonest.

On the good days when I can go out, which are infrequent, I sometimes run into people from my past. I usually enjoy these chance meetings and am often told I look good. I like hearing that because it gives me hope maybe I can someday return back to the fuller life I once had. But as all of us know, our moments of looking lively are silently interpreted by some as proof no invisible illness can subjugate us without our consent! So, whether we look good or not so good on any given day or at any given hour, we’re either dishonest or weak, or probably both.

Nothing could be further from the truth.

Words don’t express what living in the land beyond tired means to us, what it feels like, what it does to us. Our bodies are now alien captors and we, like hostage children, depend on them to protect us and support us. Of course, no one around us can see this drama, even though it’s right in front of their eyes. Frustrating, no?

I think it was Booker T. Washington who said something to the effect of: Many criticize but few endeavor to understand.

Ain’t it the truth.

I was in my Pain Specialist’s office last week for afollow-up to two minimally invasive procedures he performed on me fo my spinal stenosis. Naturally, he asked how certain parts of my body were feeling. I told him there was some improvement, but that I couldn’t always tell the difference between the degenerative OA, the spinal stenosis and my FM. He told me flat out: “I don’t believe in fibromyalgia.” Can believe that? I had told him about it before, but he never made a comment about it. I had assumed that he knew but had in mind only those conditions that he was treating. (I hate medical specialist’s tunnel vision!) i showed him an article about FM that I was reading in the waiting room. He simply replied, “I’ve attended several conferences about iy, and Ihavecome to believe that it’s not a real syndrome.”. I almost shouted back that I had real pain and added other symptoms, such as sensitivity to sense stimulation, fibro fog, etc. He answered coldly, “I’m sure you feel the pain, but every patient I have seen who claims to have FM has always had some mental condition as well.” I was shocked. i am now actively searching for another doctor in my South Florida area. I am so tired of fighting for the right treatment! Referals, anyone?

…and if people with poor eye sight only read more they wouldn’t need glasses? My mother has Alzheimer’s and her “well meaning” siblings constantly tell her to do crossword puzzles to “exercise her brain.” They do not understand her brain is dying and there are holes where memory and retention once were. I gently try to explain that its not possible for her to imprint new memories and now she is losing even her long range memory. Still, they think if only she “tried harder” she will improve. The same goes with fibro/cfs.

Information is all around about illnesses yet people pick and choose what they want to believe, whether its true or not.

I have not had a bad flareup of fibro/cfs in a long time. I’m one of the luckier ones who goes into remission for periods of time but then I forget what its like and push too hard, get over stressed and bamm, I hit a brick wall. I hurt so bad today its hard to type. The cfs has hit so hard I feel like I cannot even drag myself to get a cup of coffee. Yet, I had to drive an hour to work to a management job. I’m my sole support, I cannot survive on disability in a high priced area of the country. Iwould lose my house, my car etc. It sucks. I’ve no choice but to carry on best I can. The flare ups usually only last a few days to a week. I’ll survive.

In the meantime, its good to read this forum. I dont’ tell colleagues about my fibro/cfs. As you know many think its all psychosomatic so its best not to say anything.

This page was an answer to prayer for me today. My husband, 65, has CFS, and I was diagnosed by a neurologist in 2009 with FMS. We were talking this morning and I asked him some philosophical questions about this problem of being tired, sick, and in pain all the time. I am a clinical social worker, was working at 3 rewarding jobs before the bottom fell out. I have a strong tendency to feel guilty about being so weak and useless. I have 4 children, 4 wonderful in-laws, and 8 marvelous grandkids. One is just 4 days old. I got a ride up to the hospital to see her 3 days ago and am still in bed paying for it. I used to work with the poor and sick, teach at the university, meet patients in crisis in the ER. I was the matriarch of my family, planning fun activities, helping the family make memories together. Now I can barely function. I asked my husband, how can God allow this? Can this be His plan for my life now? Am I choosing to be sick? My husband said, “You are really sick. Don’t ask questions. It’s pointless. This is how it is, so this is the plan.”. Then I read this newsletter today. It helps me sooo much. My pet peeves from other people are the ones (and they are many) who say that they have that fibro thing too. But yet they are totally functional, working, playing, everything. I also hate it when people see me when I’m out (rarely) and say they are so glad to see me well now. I just thank them. I used to try to explain, but it’s a waste of energy.

Some days I can’t grasp a hold on how I can feel so bad for the longest time. Then when the flare-ups are over I can do things like my hair or even clean my house. That’s when I start to question if I really have this condition. Then boom the flare-up is back. Then I say it’s real no matter who believes me. I know how I feel.

Yes it is in our heads (so to speak). It affects the CNS system which is in our brain & runs our whole bodies. The next time a doctor (an idiot one, depending on what they mean by this comment) says this to them. THANK YOU! I’m interested in what you mean by this comment. If they reply they don’t “believe” or they think it’s all psychosomatic *rolling eyes* get up, and leave. Find a Doctor who actually KNOWS every aspect of this terrible illness, they are out there! It just takes time and effort and smart research!

Your article touches a heart string with me. I have had Fibromyalgia for
about 11 years and Me for 3 years. My niece has Me and Fibro and one of my nephews has Me. But my own children, I have 4 daughters, only one daughter believes me and understands my illness. My other daughters think it is all in my head. One daughter even spoke to a friend who I had known for over 40 years and told her that I wasn’t ill. How do you cope with that ? My daughter Maria is fantastic and I have just joined a local Fibro group. But it never takes the hurt away it also makes you doubt yourself.
Through having Fibro and Me I have also lost 3 daughters as well.

I have deteriorating disc disease in my spine and neck and also fibromyalgia. I have just come from citizens advice where I’m trying to appeal after been turned down for a medical. The person supposedly helpin me said u no they will think this is all in your head don’t u. I can’t believe it after showing her doctors and hospital notes she just shrugged her shoulders. I feel so upset I been through a lot and thought I would at least get a little hope I honestly don’t no why I’m here now