Debunking Myths: Fibromyalgia & 'Inability to Deal With Pain'

I agree with all of your comments! The pain we feel is chronic, severe, and disabling much of the time. I can still do everything I did before, but with a limp, moving much slower and asking for help to get it done. We aren’t looking for sympathy, were looking for relief.
Thank you Adrienne for helping people understand Fibromyalgia and its truths and myths. Someones gotta do it and you do it well

I was diagnosed with Fibromyalgia in 2009 after actually having the symptoms since 1990 as the result of a car accident and a domestic violence incident all within 12 days of each other. They didn’t know what it was because they had to rule out everything else. I live with a pain scale of 7-8 everyday for the same reason- I don’t want to be a zombie on meds. A good day for me is a 5-6 pain scale. My previous doctor, who was female and my age, dismissed my concerns as hypochondria and put that in my medical records. My new doctor almost had “a herd of cows” when he read what she put in my records. The medical doctors who don’t believe in Fibromyalgia should not only walk a mile in our shoes, but should be ashamed of themselves for thinking that we are faking it. Give me a break.

By the way, this was a good article and more people who go through this who have experienced frustration from others should write their stories.

I was diagnosed with Fibromyalgia officially in 2006. I had already diagnosed myself long before that long after dealing with the excruciating s/s for a while. It wasn’t hard for me to figure out with all the research finally available now. My doctor that had been treating me for years laughed and cursed to my face!!! How dare me question his ability as a physician!!!! His words to me after a herniated disc repair that didn’t heal adequately was, “Your screwed” All he wanted to do was put me a extreme high doses of pain meds and tell me this is your life deal with it in so many words!!! I don’t know about the rest of you but I don’t want to go through life doped up like a zombie!!! I want to feel life even if it’s painful most of the time!!!! I can deal with the pain if someone acknowledges it’s real !!! I love this site I get alot of tips and help!!!! Thanks everybody and hang in there we are growing stronger!!!!

Right,the doctors doesn’t want to hear about it because,they were not educated about it,and they don’t want to be made looking like fools.I’ve had it since I was in grade school and I’m 65 now.I fell on top of one of those old huge coal furnaces Thanksgiving Day when I was going on 2 years old.Like Faye said we just have to hang in there and hold God in our hearts.

You are sooooo right. I was diagnosed in 1992 and my male Doctor hid the information from me and told me that the pain was all in ( a woman’s head.) He didn’t believe in Fibromyalgia. I know he’s older but give me a break , do you need to go back to school moron there are many new syndromes and diseases out there wake up!!!They exist!!
I have many people that say you look fine to me all the time and it angers me because I ‘m sick of it .
As you said if they could walk in our shoes for a week they would cry!!! Why can’t we get some RESPECT.

This idea of low pain tolerance has been thrust at us by many of our enemies, such as Ehrlich, Hadler, and Wolfe (who have gotten disproportionate media attention). They claim that people with fibromyalgia just do not adapt to life’s “vicissitudes,” that the medical community has erred in being an enabler–encouraging us to think of ourselves as sick when in reality we are just poor adapters who are unable to take the stress that other people just deal with. These are the people so generously quoted in the January 2008 NY Times article.

Shai Held gave an apt response to that notorious 2008 article. “Would that it were true that fibromyalgia patients obsess over aches that other people simply tolerate; in truth, they suffer from pain that other people can scarcely imagine.”

Guide Response: That’s a great quote, in response to an article I remember far too well! Here’s my response to it: Are We STILL Asking “Is It Real?”. I also had a very interesting email exchange with Nortin Hadler, who claims to have “researched” fibromyalgia. When I asked him to validate his claims, all he could provide was his own untested hypothesis, with no data or anything else to support it. He quit responding to me when I asked a bunch of questions about my own case, which certainly didn’t fit his model. Isn’t it interesting how some people can only retreat when challenged? ~Adrienne

This myth really bugs me. I suffer from this debilitating pain. Does that mean I am less tolerant to pain? Hell no. I am *more* tolerant to pain than most people. On days when people think I am doing “well”, I am still in quite a lot of pain. But if the pain somehow transfered to others, I am certain many people would be crying after a few days. If they felt the pain at its worse, they would scream.

The only fortunate thing, if you can even use such a word, for me is that the illness progressed. So I didn’t wake up one day in all of the pain I feel today when, just the day before, I felt like most other people.

I would have to say this myth almost certainly comes from the fact that so many post-menopausal women get it. The prejudice that women just act hysterically or nonsensically is extremely old. We only just experienced suffrage a few generations ago and things still remain unbalanced.

One thing women can be mostly certain of, however, is that men who suffer through this illness know exactly how much bullshit those kinds of prejudices are.

I wish I could remember where I read in a research article that the researchers have been able to prove that we feel pain at least 7 times more than normals.

I recently had a friend pat and squeeze my wrist in a “I care about you” kind of way.

I thought I was going to levitate right off my chair from the pain…and that’s with being on pain meds. I gasped and cried out…

I don’t blame my friend for not anticipating what would happen if she applied pressure in that way.

I’m so looking forward to the day when the research will prove all the more the magnitude, duration, and intensity of our pain.

I am working hard to learn pain reduction techniques.

Mary

Thank you again for yet another great summary of what I experience with fibromyalgia. As I write this, my hips and back and neck are aching but I look perfectly normal. I’m not moaning or writhing, just very aware that I must get up from the computer soon as my body is protesting mightily. I also have been told that I don’t look sick and that I should let people know when I’m in pain. I don’t really want to talk nonstop about the pain – it wouldn’t be fun for others and certainly not fun for me. I am trying to learn to accept that I might always have this “white noise” background of pain.

Once again, thanks Adrienne for posting your blogs because I have read every one of them since my diagnoses in 2009. I, like many others, suffered years before being diagnosed.
I used to be viewed as a very strong person with a high pain tolerance. I used to work security and would fight guys trying to arrest them and I am only 5′5″. I have my entire back tattooed, which took over a hundred hours to complete. I would sit for 6 hours at a time. Needless to say, I felt I could pretty much take anything. That is until I was in a car accident and ended up with herniated discs. I couldn’t believe how bad it hurt and how much it changed my life. I could no longer skateboard and my boss (very kind one) suggested that I leave the job of tackling people because every time I did I would hurt my back.
I took my boss’s advice and left security work behind. I became a registered nurse (which is also bad for your back). A year and a half later, I started to have all of these strange illnesses. I had migraines so bad that I ended up in the E.R. and then the exhaustion kicked in. I was a very outgoing person and everyone couldn’t believe what was happening to me.
I was surrounded by healthcare workers who started to feel as if I was just too stressed out and that was causing all of my problems. Like many others, I look good on the outside. Most people think I am 10 years younger than I am. Everyone started to think I just couldn’t handle being a nurse. Needless to say, I had to stop working because my symptoms were so severe.
I became engaged at the time my symptoms started to rear their ugly heads. I had been with that person for 6 years prior to our engagement. As I became ill, he was supportive, but as I exhausted the entire healthcare network with MRIs, CAT scans, and every lab test available I believe his patience wore thin.
He couldn’t understand why I was telling him to lower his voice, even though I would say I am getting another migraine. He would tap my knee lightly and I would jump away because it felt as if he took a hammer to it. He started to feel as if I was just annoyed with him all of the time, which wasn’t true. I was in pain and I couldn’t help it. I would try to hide my pain as much as I could and try to be there for him and go out with all of his friends even though my hips, knees, shoulders, and neck were killing me. I would take Provigil to help alleviate some of my exhaustion, but that didn’t always work.
In the end, only a year after becoming engaged he broke up with me. He thought we bickered too much, but what he didn’t understand was the amount of pain I was in. He is cranky if he only gets a the flu and has aches and pains for 3 days, but what no one can completely understand if they don’t have fibromyalgia is the amount of pain we deal with on a day to day basis and how hard it is for us to cope with this and try to stay social. Not one of his friends fully understood what was happening with me & whatever discussions I had with them would lead to people giving me uneducated advice, such as just exercise more. I hope one day people who suffer from this will be able to be diagnosed by a test, because people start to not believe that there is anything wrong with us. But most of all I hope we will have a cure for fibromyalgia.

Thank you for this article, yet another which is an important topic to have been brought to attention. I have FM and my room-mate does not understand the difference between normal aches and pains and what a person with FM goes through. It is highly annoying when a person has spent their life being capable and working despite aches and pains until the FM to then be subject to disbelief and criticism over the uncontrollable aches and pains that do NOT just go away with conventional means of coping. I have been compared to another person with FM who had to take liquid morphine the pain was so bad but SHE was able to overcome her pain (more strenth of character is the insinuation) and now works….FM is so individual and I find comparisons like that to be so futile because there is nothing to measure the degree of pain and our degree of resilience and character that we are having to draw upon each day. How can one even presume to judge an invisible illness?! They seen visible evidence and seen the medication strength. For me I am choosing to not do the medication due to side effects. That then means I do have more trouble with sleep and pain. Does that not count for strength as well? I battle not being depressed and anxious and surely that counts for something too? Does past performance not figure in to the equation? Does it make sense that a person would go from being very physical to not just due to “personal choice”?!! I think not.

I am lucky, I was diagnosed quickly, and have an understanding family. It doesn’t make it any easier to get the laundry done, though!

So many sad but so true comments. I would like to add a bit of advice, if I may. I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome in 1997. As I learned more about FMS/CFS, I realized I’ve had it probably all of my life. Yes, we have a higher pain tolerance, because we have to due to our lower pain threshold. What we all need to realize is that this is a condition that originates in the brain. It’s not a mental illness, rather a misfiring of nuerons that cause our bodies to feel pain and fatigue from things that others may not even be aware of. I have had great success with the drug Nuerontin. As a result of a sleep study, it was determined that I never went into stage four sleep. That combined with the pain I was having from FMS/CFS led the Doctors at the clinic to suggest the Nuerontin. It seems that it helps with both pain and sleep. As I was able to work up to the maximum dose, I began to sleep, really sleep for up to ten hours a night. It was like a miracle. I still take it to this day and wouldn’t even think of going without it. It is a Godsend in relieving my pain and making me a more productive person. I went from being in bed or on the couch all day to being able to be up and have a much more active life. Typical pain meds do nothing at all for me and I don’t take them because it isn’t worth the side affects. I have no perceptable side affects from the Nuerontin and it relieves most of the constant aching I had. I also take an antidepressant, klonopin for anxiety (part of the syndrome) muscle relaxants at bedtime to control the cramps I used to get in my legs. I also have hypothyroidism and adrenal insufficiency so I take low doses of thyroid hormone and cortisone. All of these things help tremendously but if I had to pick one I would say the Nuerontin is like a miracle drug for FMS/CFS. I have other family members who were diagnosed with our affliction and have also had great success with Nuerontin. So, I would advise that anyone suffering from FMS/CFS to tell their Doctor that they would like to try Nuerontin working up to the highest dose. If your Doctor refuses to prescribe it without a good enough reason, I would get a Doctor who realizes that he/she works for you and should comply with any reasonable request from you. Good luck to all of you. I know my chores and life have become much easier and for the first time in my life I sleep soundly all night. I wish at least that much for you.

I have lived with chronic pain for more than 5 years now. I don’t sleep well, and as a result am constantly tired. I am so fed up of trying to explain to people that I am just tired. Too much fatigue and pain to cope with day to day tasks. I have seven children. Five still live with me, they have clean clothes every day, they are fed every day. Anything else is a bonus, I feel guilty that I can’t run around with them and I have to rely on other people to take them places and do things with them. They know they are loved but it doesn’t stop me feeling bad. Even though when I had them I was well. Don’t tell me I have an inability to deal with pain. Love to everyone. x

One thing that I have learned, is that we are all “different.” I am happy to hear that Neurontin works for Regina and her family; however, I tried it without success…even at the maximum dose. Also, I’m not a brave person who “Just fights the pain without medication.”

I am 74 years old… and I do mean “old.” I feel like I’m 90. I have learned to accept this illness and not to expect that others will be as accepting. Those people I simply leave alone and go on to enjoy life with those friends who are happy to have me as a friend.

Coming to terms with losses in my life has been difficult: I loved to dance, sing, and travel. I’ve lost my voice; I’m totally spastic when dancing(?); and travel is a burden rather than a pleasure. What I rely on is my faith and family, which is great. That, to me, is quite a blessing.

I have had fibromyalgia for 27 years. Until 5 years ago I couldn’t get treatment of any kind for it. Like everyone here, I functioned as I “should”. I stopped telling anyone that I was in pain due to the fact that they would always chime in with something like, “You look perfectly fine!” or “You don’t look like you are in pain.”. Five years ago I went to see a Rhuematologist and she had fibromyalgia herself. She ran a battery of tens of blood tests and came back to me with 6 viruses I had earlier in my life that they believe to be a contributing factor in acquiring Fibromyalgia. She also started me on Lyrica. It was hard at first because of side effects that went away about a week after every dosage increase. Man, what a difference! When I reached the maximum dose, I was pain free for the first time in a very long time. Lyrica is not a miracle drug, as I still have flares but it has made my life a lot easier to live. My flares are few and far between. This is the first Winter that I have had a flare in 5 years. I do flare in the summertime now, but they are not nearly as severe as before Lyrica. I know Lyrica won’t work for everyone just as Neurontin does not, but I am very glad I am taking it because my quality of life is so very much better now.

Pain tolerance leads me to say my pain is a 2, 3 or 4 most frequently, which I generally handle without pain meds. But I judge based on the pain of hysterectomy. If I had not had that experience, perhaps I would think this pain was worse. My physical therapist can feel the knots in my muscles even when I say I have pain at the 1-2 level.

Yes, we definitely, as a group, can handle pain even if we don’t like it.

I just wish I got more respect about it. I was confronted recently when I parked in a handicapped space, complete with my hangtag. “You don’t look disabled.” We’ve all heard it. I guess this person would have been happier if I were limping, in a wheelchair or on crutches.

I funtion on a daily pain level of no less than 7 even with medication. I don’t hold down a job anymore but I care for my 4 year old and TRY to keep up with the household chores.Today I went to the doctor for a “cold”9 turned out to be a bad upper respirtory infection) and my blood pressure was 142/110 my doctor fliped out. I said it is only this high when I am in pain…knowing the medications I take on a daily rountine she replied you must be in a hell of a lot of pain! How are you functioning? I just replied the same way I do everyday! Out of necessity! Life “preFM” I was told “it takes enough pain meds to knock out a horse to have an affect on you” now I “function” as much as I do on morphine 2xday, oxyhydrocodone for breakthrough, 1200 mg of neurotin , muscle relaxer 3 xday and a blood pressure pill(haha) as a migraine preventive and still people think I should work! What employer would hire someone on all that…don’t they realize what a safety risk I would be…I don’t even drive anymore. They should should see me without any meds!If these people could “walk a mile in our shoes” most of them couldn’t make the half way point! Of couse I do have some health problems besides the FM but people tune everything out once they hear FIBROMYAGLIA. I think we are a very strong and couragous group of people!( I am in the fog today so look over any grammer errors. I could not tell you if I spelled every other word wrong and I pray this has made sense!)

Lisa, it is frightening to hear about all the pain medications you are taking. Fibro situations vary in intensity and symptoms, but if you haven’t tried supplements (particularly heavy doses of Vitamin D3), I would urge you to do so. They might help you to not have to rely so much on pain meds.

I am 40 and was diagnosed 4 years ago. My medical records are like a phone book and finally one Dr. figured out what was wrong with me. I was in for another sore throat, and severe neck pain- I honestly thought I had meningitis or something! I now see a rheumatologist and have tried out a few different drugs with success in some. When I had shingles and it turned into postherpetic neuralgia, I took Neurontin for 2 years. I did fine with it and it delayed diagnosis of Fibro for 2 years. When I was weened off, pain returned all over my body. I used to drink often, have since I was 19. When asked WHY do I drink, simply, I feel better when I drink. I didn’t realize I was self-medicating. When I finally had to quit drinking and quit smoking because the alcohol quit working and the smokes were exacerbating my Raynauds, I realized something really was terribly wrong. I could not sleep more than an hour at a time and the pain was unrelenting. I lived on Aleve, Tylenol and Advil for a long time until that fateful day at the Dr.s office. At first I was relieved, thinking good, now we know what’s wrong, we can fix it. I didn’t know Fibromyalgia wasn’t fixable !! Now, most of my family won’t speak to me- they think I am a drug addict. (funny how they were fine with me being an alcoholic!) I take flexeril for crampy muscles and twitches, blood pressure meds for Raynauds and counteract the rise in b.p. from the antidepressant- Celexa. It is slightly different from Lexapro and a whole lot cheaper! For pain, I take 2-4 darvocet a day. They don’t work as well as the Tramadol I used to take but Tramadol cant be taken with Celexa.
My husband is coming around, but it has taken YEARS of him observing me to finally figure out that Fibromyalgia is REAL and I’m not faking. He too thought I was constantly mad at him because I would unknowingly grimace at his touch or look angry while doing anything, like dishes, laundry, etc. Now when I have a sour look on my face, he says “Pain?” and I say yeah, and try to relax.
I think I have been sick all my life. I was a colicky baby, slow growing, had colds and earaches constantly, appendicitis, mono, shingles, a second bout of mono even though that’s impossible, and the record goes on and on. Strangely though, during a surgery to remove my gall bladder, the surgeon noted that I have a wonderfully healthy, good looking liver! Guess all the alcohol and NSAIDS didn’t hurt it!
So yes, I am fed up with people thinking it’s fake. I am fed up with my family who doesn’t believe me. I used to work REALLY hard- we have rental properties and I would clean out, paint, repair, drywall etc. these houses. I would rip out carpet and carry the rolls out to the trash. I was strong. I had toned muscles and lots of energy. Now I am lucky to vacuum my house occasionally!

I can very much relate to this “myth”!! A few months ago I had asked my doctor to see a “psychologist”, because I wanted to get some “in-put” on how to deal with my health condition better “emotionally”. So, my doctor referred me to the psychologist that was in the same clinic. The first visit I had with her, she stated that even though she couldnt help me with my other illnesses , she could help me with relationships and men. I had to laugh and told her that was the “least” of my concern at this point! The next visit I had with her, she told me that there was nothing wrong with me, that I looked fine and that with Fibromyalgia your muscles look mushey and mine looked fine! And that just looking at me, I looked healthy! Obviously she had not even looked at my medical chart, that was available right in the same office. I was diagnosed with Fibromyalgia over two years ago. I also was diagnosed by my neurologist with extensive degenerate disc disease in my c-spin (back of head/neck) I also have a bright spot on my brain (that he is not sure what caused it). I have a lesion/bone spur putting pressure on the main thecal sack that protects all the nerves going into the brain. And last but not least I have had hepatitis c for 12years from a needle stick, when working at the hospital. Needless to say, by the time I got out of there, I was so depressed and felt like I was taking a million steps backward, instead of forward. My first thought was, is that how everyone, but my doctors perceive me? I am now seeing a different psycologist, who also has Fibromyalgia and is very understanding and very helpfull. And last but not least, about “pain tolerance”… my son every now and then says to me, “Mom, I wish you could have my pain tolerance”.. You gotta love them! LOL

I agree with your article. In fact, I am so used to tolerating pain, I wonder sometimes if I would notice a really “important” pain, like having a heart attack for instance. I wonder if some of the people, that think we look well, realize pain even affects the quality of our sleep which adds to our problems. I too have tolerated pain since childhood. But it didn’t interfere with my life until my body screamed stop. It got to a point with fibromyalgia and chronic fatigue syndrome, my body just gave out.

I can tell you right now that almost any psychiatrist you see will be next to useless. They are about as scientific as a phrenologist; and I say that as somebody in physical science.

If you see a neurologist, you will have a doctor who is every bit as educated in psychology and medicine but who also understands the actual system that troubles you: your neurological system.

If you need help coping, you might find a better result going to an actual therapist. Seriously. There is no such thing as a happy pill for us. Unless you actually do have some kind of chemical imbalance relating to depression, it is pointless.

A psychologist will just get your body hooked on antidepressants that can be more difficult to quit than many illegal narcotics.

A good therapist will help you cope with your illness.

Just my 2c. You can disagree if you want.

Having just read ‘we LOW pain thresholds’, leads me to DISAGREE – yes we feel the pain twice as fast and a zillion times more amplified (thanks to brain’s chenical Substance P), but find me ANY sufferer or one iwho is in remission from that ‘Murderous Pain Disease’ (ref Prof Majib Ali’s way of describing FM), who does not fight to the bitter end with the pain that is both within and without the body and brain, find me 1 FM who does not ‘cover-up’ that pain when they are suffounded by those neer-do-wellers, sneerers, the’justify yourself’ motley crew from the MD’s -the so-called friends, for FEAR of losing FACE and PLACE in this v cruel non-supportive world that generally, the FM finds oneself surrounded by, and then, Adrienne, I ask you to hold your and all FM’s heads-UP HIGH -for the indignities suffered on top of the pain suffered, and KNOW THAT IT IS THE CHARACTERISTIC TRAIT of FM’s NOT to cave, NOT to be ‘whimpish’ about their pain, but THE BRAVEST people I know in all the world, with THE HIGHEST AND LONGEST LENGTH OF ELASTIC BAND THRESHOLDS! Especially as ‘we all look pretty WELL’ – are given no break, except from the few whio REALLY know what this disease is all about! I implore this body of sufferers everywhere to STOP THINKING NEGATIVELY about 1self, and know, even if you need coaching, holistic education, a counsellor, to seek out those pople with whom you can resonate and start to get a handle on this pain through FUNCTIONAL< INTEGRATIVE MEDICAL means, with the team who HOLD YOU IN HIGH ESTEEM SO THAT YOUR EGO GETS OFF THE GROUND TO ASSIST THE BRAIN AND BODY TO COPE BETTER. Sharon Levin. http://www.fibromyalgiasa.co.za 2711828768777 mobile,

Guide Response: I think you misunderstand what I mean by low pain threshold. You say, “we feel the pain twice as fast and a zillion times more amplified,” and that’s exactly what I’m talking about. We feel so much pain because of a physically low threshold. At the same time, we have high pain tolerance because we deal with high pain levels and continue to function. Understanding that our pain threshold is part of our illness and our pain tolerance is our own ability to cope helps us see that we are not weak people — we’re stronger than most. This kind of knowledge is the opposite of negative thinking. ~Adrienne

If our pain tolerance were that low, we would have all killed ourselves long ago from the ongoing agony. That, of course, is the course that a few fibromyalgics took with Dr. Kevorkian.

My daughter suffers with this horrific medical “disease”. Forgive me if I named it something it is not…I mean no harm.
My heart breaks knowing she is in so much pain and there is nothing I or anyone else can do. As for pain tolerance…I so agree with Adrienne..my daughter is one of the bravest people I have ever known. Like you she has worked all of her life after going thru college.
She has the spirit that never gives up and I commend her more than words could ever begin to tell…I praise her for her courage, her strength, and her fortitude.
God bless all of the people who suffer with this. May you continue to face each day as you have done in the past…face forward..shoulders back….and the sun shining on your soul!!

Adrienne – First I want to thank you for having such and incredible way to “present” information to this “society” of the chonically ill. It seems to inspire others to offer many experiences they’ve has with dealing with this. I know I couldn’t pull off what you are doing and I thank you for your definite contribution to the subject.

It’s been two weeks worth of catching up from your last 2 emails so I have bits and pieces I hope possibly I can add something to the conversation.

Just as an idea as don’t know what your budget is nor what they costs but I once belonged to a “forum” something to the likes of yours with people showing up on almost a nightly basis to support one another through all hours of the day/night/early morning.

The thing that really set this site apart was that through some “java” link they were able to communicate in real time like a chat room. You would have regulars from nurses to patients to some dying from the illness, but I’d like to share with you one night I had on the site.

One night for some reason the stars were out of alignment or a full moon or something but this particular evening I believe to this day I talked 2 separate females from committing suicide. It was scary being in that situation and the responsibility of trying to reason with these two ladies.

As well I believe these two ladies were serious and one even commented that “this was suppose to be the weekend. Grandma had the kids and she was simply going to give up. Thankfully she didn’t but I found myself raise my symptom level dealing with the CFS.

The point I’m finally getting down to making is that in reading some of your comments there are desperate people out there and many are in difficult situations – having to work, having young children and having the accompanying guilt of not being able to keep up, to the spouse or significant other who just doesn’t believe – and how about the medical comm so I can go on and on.

The thing is these people need a forum to “talk” to someone a whole bunch of times. And though the forum has it’s regulars and on slow nights a lot of kidding would be going on – but whenever a new person entered and was coaxed into sharing they typically left understanding more of their disease, feeling not so alone, and so on – this immediate communication was “life saving” in some real cases.

The site was the Hepatitis Neighborhood and I find the desperation level of some of the comments to way too high and if they were able to speak to some of us in real time that have been afflicted with this disease for many years/decades.

Anyway Adrienne – I’m only writing this because you are able to draw a very good following with your level of sense, reasoning, awareness and so on. Having a real time conversation “chat room” would greatly enhance your work in this area. But once again thank you so much by what you do give of yourself.

I originally wrote this and hoped to comment on the last 5 or 6 stories over the past 2 weeks I just caught up on but I’m tapped out with this ranting so I’ll be back soon to finish it off!

Thanks Again for Your Efforts!

Guide Response: Thanks for your comments! Here on the blog is a great place for comments, but my forum is the place for real conversations. It’s not quite a live chat environment, but messages post within a couple of seconds. We’d love to have you there, sharing your experiences!

I’ve recently had this experience with a “new” doctor. What a nightmare! I’ve been taking a regimen of prescription meds for about 4-1/2 years now, after being diagnosed with trauma-induced fibro resulting from a head-on collision. (I was sitting still at a stoplight, waiting for my light to change.) Anyway, my previous doctor retired and he referred me to the new one. After the first 2 minutes I was crying, which really ticked me off, but it was one of those days when my “cushion of equanimity” (my own phrase) wasn’t there, so I continued to cry for the next 6 hours. Jeez! Webster’s describes equanimity this way: Evenness of mind under stress. Equanimity suggests a habit of mind that is only rarely disturbed under great strain. Ah, but I digress!
The doctor came into the exam room, and the first thing out of her mouth was that she doesn’t believe in prescribing controlled substances to her patients, and that the few she does have must sign a contract with her. And it went WAY downhill from there. She said that depression can cause headaches, sleeplessness, feelings of tiredness, pain, etc. She completely took away 2 medications, both ones that I took at night and that helped me sleep (Vicodin and Ambien). I take Skelaxin 4 times a day, Flexeril at night, along with Vicodin and Ambien. I take 3 Aleve morning and night, and Effexor in the morning. With those meds my good days were about a 4-5. She took away the Vicodin and replaced it with Tramadol, which is OK, I guess. She took me off Ambien and put me on Trazadone which is normally prescribed for anxiety, which is not one of my problems. She put me on Propranolol which is normally prescribed for blood pressure, but she said it’s been shown to prevent migraine headaches. I told her I do have migraines, but that I only get them 3-4 times a year. I said the bad headaches have a pain intensity like a migraine, but she must not have heard that. Oh, yes, and since I was stressed about seeing a new doctor, my bp was up. I told her I knew it would be because I always react that way – it’s part of the fight or flight response we generate when dealing with a potential problem AND I have White Coat Syndrome. Did she listen to that? Hell no!!! So, for the last 2 months, I haven’t slept much at all, not going to bed ’til 3:00, 4:00, even 5:00 in the morning. (I take my evening pills at 10:00.) My new daily pain level is running a 7-8. I’m also having more intense headaches, which is probably exacerbated by not sleeping, but what do I know. I don’t have a medical degree. LOL! Long story short, I went back for my second appointment wearing my “big girl panties” and 2 pages worth of things I needed to get off my chest. She made very little eye contact and responded to very little of what I had to say. She said she did believe in fibro, but said until we had exhausted all other options (i.e. counseling, a neurologist and a rheumatologist) she wouldn’t put me back on Vicodin and Ambien. She said if a specialist wouldn’t prescribe a drug to treat a condition, why would she. I told her I’d seen a neurologist and had an MRI and five pages worth of the neurologist’s findings which include degenerative stenosis in C-4,5 & 6. I did start seeing a counselor, who is wonderful. Did she want a report from him or want to know how it was going? NO!!! She didn’t ask about any of it. She didn’t ask what my life was like before fibro, what I did for work or play, nothing! Before the accident, I was on call for oil spill response, working as the lead deckhand on a 55′ reponse vessel, as well as the backup skipper. I’ve spent 10 hours on a boat, in 30 degree weather, 60 mph winds, and 8-10 foot swells for 3 days, handling big heavy lines, running a crew, bending, lifting, pulling, etc. all while using the muscles in my legs and back to keep myself steady on a heaving, wet deck. I’ve worked 16 hour days doing oiled wildlife rehabilitation for weeks at a time. I never thought twice about getting in the car and driving for hours to get to my destination, then run around doing errands, shopping, meeting with friends. Now I mostly limit my driving to going to my part-time job, which is about 5 miles away, and a “very” occasional trip to the big city, which is an hour and a half away. After driving to the big city, when I get out of the car, I can barely move, and my stride covers about 6 inches, with my hips and back screaming. My mother lives 6 hours away, so I have to wait ’til my husband is home and has time off before I can go see her. I make that trip with the seat fully reclined and a pillow that’s perfect for under my neck. When I arrive I can at least move. I’m currently home by myself because my husband is driving down to San Diego to pick up my sister whose husband just died, and move her back home. It’s absolutely KILLED me not to be able to be down there with her while she went through all of this! My chiropractor absolutely refused to give me the go-ahead to make the trip, and as much as I hate to admit it, he’s right. Yes, we’re really a bunch of whiny wimps, aren’t we? Ha! We are rock stars when it comes to pain tolerance. When the doctor did her physical exam, I didn’t exhibit a pain response until she hit one of that day’s particular hot spots. I flinched and pulled away and she asked if that hurt. I said yes and did she want to know if any of the other spots she’d touched hurt. I made sure to cover that particular issue on visit #2. I told her that I have a new level of “normal” and have also developed the facade I show to most of the people I encounter, that everything is OK. I guess I should have just given a pain response everywhere she touched, but she didn’t ask me to let her know if an area was painful. Have any of you had that problem with a doctor? I told her I never had a problem with depression before the accident and that I strongly felt the depression was a result of the accident and the resulting whiplash injury and fibro. I also told her it then becomes a vicious cycle, one problem exacerbating another problem, which creates more of the same problem, adding to the headaches and the overall pain level. Now that I’ve taken the long way around to get back to the subject, sadly there are a lot of people out there who don’t get it, and even the ones who truly want to understand can’t. Your input on doing the laundry was very helpful and gave me a couple of ideas to add to my already modified laundry routine. I don’t do any of the vacuuming anymore unless it’s an emergency, in which case I can manage about a 3 foot square area. Sweeping and mopping are a killer, so that is done in very small increments. It’s something about the muscles and motions, I guess. Anybody else have that problem? And the amount of energy it takes to take a shower and wash my hair, all before getting ready to go to work is just crazy! Standing in one place is my absolute least comfortable thing to do, but until I can figure out a way to move around while I’m in the shower, I will continue on. The tub is a great idea, but then there’s the whole problem of getting in, and more importantly, getting out. That involves pushing myself up to some level so I can get to my feet. And THAT involves those really unhappy muscles in my neck, shoulders and upper arms. Have I whined enough yet? It’s just wonderful to read what you all have to say, and to hear you describe what you go through to do an everyday task. I find it affirming and it helps to know I’m not crazy. Thanks!

I started going to the doctors for help with fibro symptoms when I was 23 or 24. That’s not “old age!”

I have been through two knee surgeries, an ankle that was broken in three places, and surgery on my pituitary gland through my nose (that one was actually the easiest). I have also had a procedure done on my knee while I was fully awake that involved sucking the contents of a cartilage cyst with needles… they ended up using a large-gauge needle after failed tries and they were rolling an ultrasound sensor OVER TOP THE AREA OF THE NEEDLES so that they could see the cyst. I only had local anesthetic.

Did that mental image make anyone cringe at the thought? I’ve been through a lot, can tolerate a lot of pain, and am by no means a “baby.”

Most folks think of pain as something they deal with for a few minutes or a few hours. Fibro pain is a constant, roving, unpredictable pain. That’s day-after-day-after-day. Most folks cannot truly understand what that’s like.

Pain has driven people to suicide. I’m not suicidal, but folks should be able to understand that anything that can drive people to suicide is different than little aches and pains.

Pain that’s predictible or has a predicted end-point is much easier to deal with, psychologically. When pain is unexplained and has no meaning (like a surgery that will produce improved function) then it is hard to explain to ourselves… hard to live with.

Our pain can limit our activities. When someone has surgery, what’s the first thing on their minds? “Doctor, how long will it take me to recover?”

Imagine being told you’ll never recover and you’ll have to make do with your life as it is. You’d be angry, depressed, fearful…

That’s what we deal with.

I have never told anyone that I have fibromyalgia because of the eye roll I’ve seen in too many others. I also have peripheral neuropathy that has taken out small muscles groups in my feet and legs and is irreversible. Add to that low back pain, tailbone injury, olfactory neuropathy, and sense-of-taste/altered sensation neuropathy. I have to be very careful of meds because I also have coproporhyria – a genetic blood disorder that doesn’t allow my body to clear porphyrins adequately. Too many in the blood causes your liver to get very sick (hepatis but not viral), and if not managed, can even kill you.

I live at at 4-5 pain level all the time as an undercurrent. Add in anything else, a flare-up, illness, ratcheting up of symptoms and I can easily go to an 8 or 9. A particularly hard day with a certain problem I have will put be at 11-12 on that 1-10 scale.

My life, and ability to keep up, are severly affected but I ACT like everything is okay when I’m around people because I DON’T want to be the sick friend! When I can’t keep up the pretense, I stay home and decline to be around anyone but my family. I absolutely know that if most people had my pain handed to them they would crumble. This is a VERY lonely road.

Maybe fibromyalgia does exist. But remember, there are no laboratory tests for it. Most people can work, and people with fibromyalgia can and should work. Narcotics have been shown in evidence based reviews to be ineffective in treating fibromyalgia. Under no circumstances should fibromyalgia patients be taking narcotic medications. Relaxation, exercise, and cognitive-behavioral therapy are what you should be doing.

From Your Guide: You’re laboring under several false assumptions. First, the tender point exam may not be perfect, but it’s proven to be an effective predictor of fibromyalgia. Whether someone with fibromyalgia is able to work depends entirely on the severity. “Should” is a tricky word to use — when I was still at my full-time TV news job, I got progressively worse. When I quit, I got immediately much better. “Should” I have stayed at that job? No. I’m fortunate that I have skills I can use from home, but many people don’t have that to fall back on. If I weren’t able to have complete flexibility in my schedule and an extremely low-stress environment, I wouldn’t be able to work. Narcotics haven’t fared well in trials, that’s true, but they’ve done at least as well as CBT, and the trials have been higher quality. Some people with fibromyalgia get no relief from them, while others do see substantial benefit. We face the same problem with any treatment, likely because we fall into multiple subgroups that need to be treated differently. Especially for those of us with co-morbid pain conditions, narcotics are an invaluable part of the treatment regimen. I also find it interesting that you “know” the exact treatment regimen that all of us should follow, when research has consistently shown that we each need an individualized treatment regimen composed of several different types of therapies. Quite frankly, if you were treating someone with a severe case, keeping them at work and exercising would likely make them far, far worse until they found a doctor who was actually familiar with current research. ~Adrienne

Doc, many of us with fibromyalgia have other illnesses that add to our burden as well. I want to keep working but every day is a struggle. I’m working but when I get home in the evening, I struggle with such heavy fatigue that it’s hard to cook a decent meal or clean. Where one part of our lives drains so much energy, there is little left over for our other needs.

I’m still working but I’m pushing past my limitations and other parts of my life are suffering for it. I hope I can keep up this lop-sided balancing act. I’m only 31 years old and I don’t know what the future holds for me.

Your statement is a blanket assumption about all fibro patients. It doesn’t take into account other illnesses that are co-morbid.

Also, granted there are no CLINICALLY AVAILABLE tests for fibromyalgia, there are biological abnormalities that are just too expensive to look for in the average patient. Elevated substance P, changes in fMRI imaging, apparently somehow they know that there are changes in neurotransmitters…

Our experience as patients is not transparent because doctors do have to rely on subjective reports. However, that doesn’t mean our experiences are not real or are less valid.

Do yourself a favor and if any patients report more pain than you can comprehend, refer them to pain management. Let them do the assessment. You can’t know what our bodies are going through. I see myself as having moderate FM… I imagine there are people worse off than I am, and I’m already struggling with work. If not for my medications, I would NOT be able to work. I am getting decent enough sleep (a big factor!) and my pain is manageable but troublesome (mobic and Ultram).

We’ve tried Lyrica, Neurontin and Topamax… I couldn’t tolerate the effects of neurontin and I stayed on the Lyrica and Topamax for quite some time until I realized that my fatigue was far, far worse on them even if my pain was managed. I had a bad reaction to Cymbalta, which makes Savella really iffy to try (nevermind that 60% of people who try Savella can’t tolerate the side-effects). If these medications were totally effective without intolerable side-effects and if they worked for everyone, I think then your argument might hold up.

In the real world, there are lots more variables than just FMS itself. It just isn’t simple.

I am actually desperately in search of help that will keep me able to work. Doc says we’re running out of options.

You all owe it to yourselves to check out http://www.fibromyalgiatreatment.com. Dr. R. Paul Amand has fibromyalgia and has been successfully treating patients with guaiphenisen for decades.

I’ve been on his protocol for 6 1/2 years and feel better than I could have ever imagined. When I started, I was in jeopardy of loosing my job because I couldn’t think straight, the fog was so thick. Additionally, I have had chronic pain since I was 9 and woke up with frozen neck muscles and couldn’t move my head. In addition, I have multiple autoimmune challenges that make it even more complex to deal with. I have reversed most of my symptoms and look forward to continued improvements.

Between the guai and the hypoglycemic diet, that 40% of his female patients benefit from, my life turned around.

I have no affiliation with Dr. St. Amand, nor do I benefit from this statement in any way. I am just trying to help people who have likely run out of options. You don’t have to be under a doctor’s care to do this protocol. Nor do you have to pay for expensive treatments. Guaiphenasin is Mucinex; available OTC. Read his book and decide for yourself if it’s worth trying. Thousands of people are benefiting from his perspective around the world and the majority have never stepped foot in his office.

Best wishes to all of you!

I was disturbed by the article and the myth. I have not encountered it as of yet but because of my Fibromyalgia, I believe I am more tolerant of the pain. It has continued to get worse. What once was perhaps a 5 or a 7 on my pain scale is now a 3 or a 5. The worse it gets, the more tolerable it becomes.

These myths are what broke up my marriage. Esp the difference between tolerance and threshold. “If you can take that much pain, why don’t you jsut do what has to be done?”

Since then I’ve learned to do what needs to be done, most of the time, but I have developed a healthy fear of hurting myself more. Healthy…ha.. it’s almost crippling.

I am learning how to teach the people closest to me. And my children… the poor dears grew up with me and they are the most compassionate, empathic teenagers (1 almost teen) I have ever met.

But, in all honesty, I’m 37, I’ve lived with Fibro, Chronic Myofascial Pain and a horde of co-morbid conditions for 15 years and I am still learning.

I love this blog post, thank you for helping me give my loved ones a better understanding of the difference between tolerance and threshold.

I too have been ill with the symptoms described by all of you. For the first 15 years I somehow managed to hide it from the public and some of my doctors. Because they had the same unknowing arrogance displayed by Dr Van. I probably saw 20 uninformed doctors for ever one who was helpful and knowledgeable. Most of us likely have a retrovirus, not HIV but XMRV. There are tests available. Antivirals help considerably but because of a long history of people squelching research these things are just coming to be known. The bright spots on the brain, post herpetic shingles, and a second go round with Mono are typical. Most of us have a fibromyalgia diagnosis rather than a Chronic Fatigue or Myalgic Encephalitis diagnosis because of politics within the medical profession. I do not blame the doctors who do not know. Most do not know they do not know. However we are about 25 years behind the first findings of this virus. I hope Dr Van comes back here and is willing to learn.

I’ve been in pain since I was 12. And was just recently diganosed with Fibro at age 30. One doctor a few years ago asked me about the last time I wasn’t in pain and I couldn’t answer her. I went home and asked my boyfriend if there were people who didn’t feel pain ever day of their lives and he said most people didn’t. I couldn’t believe that. I can’t even imagen what a day without pain would feel like. I usually am somewhere between a 5-7 everyday. Its only the days when I hit 8 and 9s that I start trying to remember what it feels like to not be in pain but I can’t. I think most people in my daily life would be surprised to know just how much pain I am in every day cause I hide it really well.

Agreed! We have no choice. If we work we hurt. If we lay in bed, we hurt.

I was diganosed in 2007 finally after being in a car wreck w 18wheeler in 1995 that killed my husband & I was sent to Med in Memphis, Tn with severe head injury plus other injuries. I, like others w fibro, cope daily at a pain level of 4-5 w/o pain meds. I will be so glad when they find something to get us back to an almost normal life. I sent prayers to all who has Fibro/CFS as well as to Drs & research to find a cure & be more understanding.

I’ve encountered this problem almost my entire life. After seeing a rheumatologist, it turns out I’ve been suffering with Fibromyalgia since I was 7, but only recently diagnosed, now 27. So, you can imagine how often I’ve been told (by family, friends, and of course our “friends” doctors, it’s all in my head, I’m just trying to get out of doing something, I just can’t tolerate pain, I”m just looking for attention… etc… My sister was the worst offender & critic. A couple months ago her back spasmed & she experienced what I feel on a daily basis but to a bit lesser degree. At one point she was folded in half over the bed screaming & said that the pain she was feeling was worse than being in labour! By the end of the few days, she turned to me & said if you feel anything like I have the passed few days I have a bit more sympathy for you.
It’s so hard when you know what you are going thru, but no one sees it. I totally know about going on thru the pain, only to be told by doctors, family, bosses, that you are just going to have to work thru the pain & that a little bit of pain never hurt anyone (this line is one of my ridiculous favorites) Doctors who do mass amounts of tests and find nothing so determine that nothing is wrong, instead of being more determined to figure things out! How much more healthy &/or properly diagnosed if doctors would keep questioning & searching, healing, instead of after the money, on “contract” with pharmaceutical companies, judging?

Its kinda like the pain studies done, where they pinch one finger, seems the “healthy” reported more pain, than we did. No great surprise really, as we deal with more pain they they could deal out, in any sort of ethical situation, .. and we do it everyday.

Definitely a great article!! Thank you so much for sharing these insights, excellent points. I hope you don’t mind, I linked to your article, it’s really helpful and you’ve said it in ways I never could have. Thanks much!

I don’t have Fibro, but have friends who do. I have not encountered this myth among my friends who do not have Fibro. You sound like an outstanding example of someone coping with Fibro. I have a friend who braves her disease much like you do. However, I have another friend who refuses to do anything her doctor suggests that might help (lose weight, exercise, stop eating empty calorie foods, stop drinking sugary sodas?; who lives on meds (up to 6 different pills a day!); and who does nothing but constantly talk about how bad her Fibro is! Enough already! If you won’t do ANYTHING to help yourself, then I have little sympathy for you! However, if you have tried everything to help yourself with nothing working and you still soldier on without talking about your disease ad nauseum, then my hat is off to you! And my prayers are with you! May medical science soon find a cure for this awful plague.

I’m 44 years old with fibromyalgia Lupus multiple herniated discs and multiple other disorders and I get very angry when I go to my pain doctors and I’m told after 10yrs of taking meds I’m on too much medicine. Who are they to tell me that I should not be in that much pain. I wish they could spend 30 seconds in my body. They would run out of prescription pads. I’m sick of being looked at like a drug addict and not a real person with real problems.

its really annoying,
i have such a high pain threshold it is unreal, for example I just had four fillings with no injections this week, the dentist thought i was mad because one was particularly deep and the others were on my front teeth which are highly sensitive (I am an ex dental nurse)
also I have given birth when I was 17 with a huge baby who got his head stuck, I had no gas, no drugs, no stitches
I have had the ulna nerve in my arm unfused from the bone while wide awake and feeling it ALL
I had a huge infection in my submandibular space and turned down and operation and chose to put up with excruciating pain and antibiotics instead
so this myth that FM patients are over sensitive to pain is ridiculous and seems to be used by doctors to fob us off !!

I totally agree that we are completely misunderstood. I broke my back years ago and have spinal Stenosis. I complained that my pain was getting worse and spreading and was labeled a seeker. As a male, most doctors didn’t even consider the facial and neck pain and occasional rectus as possible fibro. I complained of the fog and was told that perhaps I needed a pill minder, as I must be taking to many meds.

I eventually went to a Neurologist whose wife was a nurse and unlucky enough to have Fibro. He recognized in me a lot of the same symptoms and said he wanted to a complete work up. They did a live Neuro Scan and every part of my brain looked on fire. Finally he decided it wasn’t in my head, that I did n\indeed have Fibro. I just hate thinking of all the years I needlessly suffered and the money I spent on doctors who assumed they had me pegged.

Now I am in a pain program and study, hopefully someday we can find a better treatment if not a cure.

As a 25 year old male, I’ve had doctors tell me I was making the pain up. After 10 years of severe symptoms, I was FINALLY diagnosed.

I have had to jump through hoops to seek treatment. My family was mostly unaware of the problem because I felt it was mine to deal with and mine alone.

I’ve ended up in the ER more times than I can count because the spasms that I have related to the pain freak my body out. When I have the attacks my body becomes so restricted that I’m unable to walk, talk, breathe, and function.

Among other symptoms such as skin discoloration, extreme varicose veins, pressure points, and getting sick from sleeping, I have felt like I’ve been through hell and back because of the pain.

My threashold is higher than most people who don’t have it can’t understand. Sometimes the pain is so severe I have considered suicide. This is not something I like to admit, but it has caused major depression for me over the years. I’m currently on antidepressants and anxiety meds as well as tons of different supplements that I take because they remove “part” of the pain sometimes. I can feel when my body spasms, and it hurts. The pain doesn’t go away. You just learn to tolerate it more.

I shouldn’t feel like I have to convince my health provider that there is something wrong with me. That is why it took 10 years to get a diagnosis.

I’m learning more and more that this is common, and it saddens me to know many are unwilling to treat it for what it is. I’m 25 and a male. 2 things that most people just assume that there can’t be anything wrong with me.

Heather, when I was in nursing school many years ago, we were taught that pain is what the patient says it is. In other words, if the patient says his pain level is 9, then you treat it as a 9. Doctors should have to learn this in medical school.

People have very little understanding of this syndrome, and it is very frustrating! For the people who have never been exposed to fibromyalgia on a daily basis, they don’t, or can’t, truly understand what we go through. I am 17 years old, and am constantly accused of ditching or “just not feeling like going to school”. Of course, I love to create stress on myself emotionally and physically, don’t we all? I am in the top 10% of my graduating class, my grades are all A’s with some B’s thrown in there. I complete every assignment, and usually receive the highest grade in the class. Yet, I still receive no respect from my peers. Some of my teachers understand, especially the ones who have family members with fibromyalgia. The awareness of this illness is so low, that people honestly don’t know anything about it. I feel like if they were aware of it, us “fibromites” might receive more respect.

Many people think that only women have this illness, wrong, I was diagnosed in 2008, and at 52 years old and a very strong family history. I can not live without my pain medications and I suplement them with triggers monthly along with acupuncture twice a week.

I also really dislike this particular myth. I am sad to read all the stories here, and feel shame for how people have lost their ability for empathy and compassion. One person above wrote “I wonder sometimes if I would notice a really “important” pain”.

I myself had never thought of this until a few months ago. My symptoms exacerbated to the point where I could not even walk to the bathroom without feeling as if I was going to pass out. After several weeks of this my husband “forced” me to see my physician.

Come to find out I had such a horrible ear infection that my ear canal was collapsed and my jaw was inflamed with infection, causing severe vertigo.

My physician asked me why I did not come in sooner. He considers me a hypochondriac, so I almost never go see him any longer unless forced to. I then reminded him that I have had jaw pain and vertigo for over ten years and I had not noticed that I had an infection. The pain was not any worse than during a flare up, the only “real” difference was the intense increase of my vertigo.

So I do feel anger when I hear people say I just have an issue with pain tolerance. For me to have an infection to the point of it collapsing my ear canal and spread into my jaw, tells me that I can handle a lot of pain. For it to be this bad, and me not even notice an increase of pain, tells me I have a very high pain tolerance.

I have fantasized that someday technology will allow a physician to hook me up to some computer, which then transfers my pain to my physician, my family, and my friends for just one minute. Just so they would KNOW what I deal with on a daily basis.

Here’s to hoping that we all get the relief that we deserve as human beings.

Be well!

I went in to the doctor in 2000 for an odd pain which felt different than my normal types of pain. After a battery of tests they put me into the ER and the next morning I had surgery, where they discovered a rampaging case of endometriosis that they said I must have had for 15 years. They wondered how I could have ignored the pain and not known something was wrong.

So HA! Don’t tell me I have no tolerance for pain.

Thank you for telling the truth. The absolute truth. Thank you from the bottom of my heart.

It is because of Dr. Vanderhadzens rediculous opinion
that many of us have had to commit suicide. The pain is so severe that w/o ultram and stronger narcotics for flares my
children would not have had me as a mother because it hurts
that bad. would he begrudge my 2 innocent children a mother?
yes he would. thank u adreienne for all u do.

I wholeheartedly agree with your contention that we have a high, not low, pain tolerance. Your article brought to mind three experiences which gave me some objective measure of the pain I live with.

1. I, too, had a long (32+ hr) labor and never asked for pain medication. My midwife insisted on giving me something short-acting after about 20 hours so I could rest & be strong enough to go on.

2. My ex-husband and I were sight-seeing in a new city and I mentioned my ankle was hurting (I was limping a bit). That evening when I took off my shoes we were both astonished to see that my entire ankle was bruised and swollen. (I had no idea what had happened to cause this, of course!) My ex said, “You’re hurt! Why didn’t you say something?” and I replied, “I didn’t know. When I tell you something hurts, this is how badly it hurts. All the time.” That was one of the few times there was something visible to represent the pain I was having.
3. Two years ago, I had surgery to remove a benign liver cyst the size of a softball. The radiologist believes it was there most, if not all, of my life. I had been having pain for years, but because it increased slowly and because one of my main coping mechanisms in to try to ignore pain, I simply chalked it up to fibromyalgia and lived my life. But I can tell you life is so much better without a softball under my ribs!

Beautifully said, Adrienne. I once had a headache for 30 years. I just assumed everyone had daily headaches until my stepdaughter pointed out that it wasn’t normal. My husband gets headaches about twice a year, and you’d think the world had stopped. And that’s not to mention the other body pains. I am so thankful that my doctor was willing to combine Savella with the Lyrica. It has worked very well for me.

First off I want to reply to Shawna. My doctor has prescribed both Celexa and Tramadol for me with no weird side effects. Until I read your post I didn’t realize they shouldn’t be taken together. I’ve been taking the 2 together for a couple of years now.

Since my diagnosis of Fibro I lost my job of 18 years, sleeping problems caused me to be late too many times, funny thing is they didn’t give me a hard time about being late until after I was diagnosed. Second, my marraige ended due to my husband too often told me he felt that I was “milking” my symptoms just to get sympathy. As if. I don’t need to milk my symptoms I actually have them. Pain in hips, knees, lower back and now my left shoulder. Frequent migraines and constant fatigue.

I resent anyone saying that this is just a fake illness. I am pre-menopausal and I have had this illness for 4 years. I guarantee I am not faking. I would love to play with my grandson like I used to but when I do I am wore out for a day or two afterward. Sad to say that at 11 he understands better than most people that grandma just can’t keep up anymore. I’m only 50 but most days I feel way older.

Reading all the info has been such a comfort to me- sounds silly really but although I have a Fibro savvy Doc who is supportive and I have been dealing with it for up to 20 years (diagnosed over 10) I didn’t realize that so many of my strange habits and odd behaviors are fibro related. Clothing, hate bra’s, waist bands, tags touching skin, the burn from certain types of material- not being able to remember faces or place people, getting lost,-even thought I should know where I am… and the list goes on. Thank you for getting this info out to us. I know a number of Fibro’s and CFS and I am passing the web page details on to them. I am from Western Australia and it is still very hard to get recognition of all the issues involved and decent advice/support. I had actually stopped looking for help and began to do things that I felt helped me, like establishing a supplement regime, an exercise regime, learning ways of adapting at work with how I feel, ,at home and in social situations, and working with the weather ( hate change of seasons) I have found ways and now I read that others are doing the same things and have more hints and tips to further make life livable, pain free never but livable! I am what I call a head to toe fibro and have many of the other related diagnosis, CF, IBS, Costocondritis, depression/anxiety disorders, TMJ, odema, cognitive issues, and others. Frustrating when I am actually an intelligent articulate woman who sometimes can’t get a coherent sentence out!!! I also have one thing that I am truly thankful for a very understanding, supportive and caring husband, who has never faltered in his belief in me.
Thank you to everyone who submits another hint, tip, or just lets us know we are not alone.
Sue

I recently had one of those “pain tolerance” times.
In November I got strep throat from my grandchildren. Sick and drained, I faithfully took the antibiodics and began to feel better. But by the end of November, I noticed that I was getting sores on my scalp. Searched for info, psoriasis?, spider bites?, or one bit of informantion said sores on scalp could occur from having had strep throat. So, I patiently waited, hoping it would go away. December came, and the holiday, gifts, dinner, visiting, came before my health. The sores were getting worse, and by then, my neck began to swell!
I got through Christmas and New Year, and in January the pain and swelling in my neck was making it hard to turn my head.
NOW, understand that all through this, I was thinking my fibro was out of control.
I had been to the doc. in the past about swelling in my neck and he told me it was just a muscle swollen.
But this pain continued to get worse until I wanted to cry out from the pain of my neck and painful sores on my scalp!!! Finally, mid January, I finally went to the doc. to discover I had a terrible infection in my lymph nodes and it was causing the sores on my head!!!
I’m one of those that suffers through pain because if it’s fibro pain, it will usually pass…
2 years ago, I passed a kidney stone at home that would have sent the average person running to the ER, but I stayed in pain for 2 or 3 hours, cooked dinner and everything, finally, it passed.
So, yes, I get really irritated at those who think we can’t handle pain, wish I could give them mine for one day and see how they do!!!

I so agree. I have dealt with constant chronic pain while working as a dog groomer for over 10 years before I finally gave in to it. Many times after working all day, I would run to physical therapy…which never helped.
I am not a youngster, but have had FM for a minimum of 15 yrs, and just lived with it. I rarely take pain meds I hate taking all the ones I have to, due to blood clots, thyroid, hypertension, etc., etc. I also have arthritis and degenerative joint disease, and a rare, debilitating tremor disease. Life is difficult for me at 60 yrs. old and very frustrating and I am always in pain. But lack of pain tolerance?? I think not. I have to have my blood checked constantly, and they always have a problem finding my veins. I don’t know how many times the nurses have apologized to me, after missing numerous times, or hunting for that vein. My reply is always…just do it; it doesn’t bother me. Recently, I had to have a biopsy on my tongue of all things…novacaine in your tongue is painful in your tongue, and the oral surgeon warned me, and apologized as he did it. Yup, it hurt, but I didn’t flinch, and when he was done, I said, ‘that wasn’t THAT bad.’ He said, ‘you’re a great patient’. Gee, my long lost friends and some family think I’m a whiner….Isn’t invisible problems fun..

I recently had surgery, and went in to have my staples removed. One of the incisions was infected, and they asked how much it hurt. They were surprised when I rated it as a 3.

I have endured so much pain that much of it gets ignored. a ten is a pinched nerve that no painkiller will touch. A nine is a stone passing. Eight is an abscessed tooth. Seven is childbirth. Anything over a 4 is serious and needs medical attention now. Four and under can be safely ignored.

Of course I feel the lower pains. But since I know they can be ignored, I do. I take Lyrica, otherwise I couldn’t ignore as much as I do.

I have been recently diagnosed with FB and sorry to say I have not told many people because of the sterotype associated with it. Just because we don’t look sick doesn’t mean we aren’t feeling pain. I have had friends with cancer who look the same as me, but never said to them they looked fine so they must be lying. I recently went to my hairdresser and the lady next to me start talking about FB saying basically we all have it and it is called being over worked and underpaid. I considered standing up for myself , but thought not ot waste my time or energy on someone who was to ignorant to think. I am 41 and sometimes think to myself if some days feel like this how is 50, 60 etc going to feel?
People need to mind their own and if you have nothing nice to say keep it to yourself. I told my 13 year old about the lady at the hairdresser and he was so mad that I didn’t stick up for myself. My husband and my son are my 2 biggest supporters and am very lucky to have them.
I just hope I come to realise that I have FB and it will never go away and not to be embarassed to tell anyone. I am just tired of being the sick one.
With it being new to me I know it will take some time to come to terms with it.

I’ve had neutopathy for 12yrs. Fibromylgia for 4. My family still doesn’t understand the pain they cause. They get tired of it being ever present. And that it dictates my functionality. So do i! There’s no gage on me that shows the intensity of the range of pain Im experiencing on any given day.only the look on my face as i move. It would be so do much easier for them to understand. Right! Having their daily understanding would help so so much. Still every days a precious gift!

Great story and following discussions. Have been diagnosed for 3 years. Lupus and Fibro. Such misunderstood diseases. Am lucky enough to live in Memphis and found The Fatigue Clinic in Collierville, Tn. Have given me my life back. Pray for my fellow sufferers.

Try a Pschiatrist