Note: This article was posted last November on my page at The Mighty, a great resource and community for people with chronic or mental illnesses.

I have long, straight, super-fine hair. When I was a kid, it would often get tangled and I didn’t like to brush it. So my mom would brush it for me, yanking the brush through the rat’s nest knot. “Ow, quit yanking,” I would say with tears streaming down my face.
“That didn’t hurt.”
If I had a dollar for every time I’ve heard that phrase, I could buy a small mansion. OK, maybe that’s a bit of an exaggeration, but I did hear it a lot. Sometimes I still do, or variations of it.
A Lack of Understanding
Several years ago, my sister and I visited an aunt and cousins in Texas. We got to meet one cousin’s grandkids who lived with him.
The impish face of one granddaughter was adorable. I so wanted to play this game she’d made up.
“Hold these,” she chirped, and handed me three pine cones. I don’t even know where she got pine cones in Houston, Texas. I hadn’t seen many pine trees.
Try as I might to hold them lightly, I could barely stand having them poke my tender palms. “I can’t hold these,” I finally said, as I set them down on the coffee table. “They hurt my hands.” That was an understatement.
My sister looked at me with puzzlement written on her face. “Does that really hurt?”
At least she’d asked.
More Failure to Understand
On another trip, this time with my husband and son, Mexico was the destination. Cancun, to be specific. A place of sunshine and beautiful coral sand beaches.
Mid-trip, my husband decided he wanted to have his hair cornrow braided by a merchant in the local outdoor market. He talked me into having mine braided too. I should have known better.
While he was enjoying what felt like a wonderful scalp massage, I endured torture worse than all my mom’s hair brushings rolled into one. I felt certain the woman braiding my hair was going to pull every hair out of my scalp. I will not be doing that again. Ever.
I took the braids out the very next day because the pain wouldn’t cease until I did. My husband still didn’t understand.
Looking for Answers
The denial of my physical pain by those who know me best often makes me wonder if I’m losing my mind. Because it does hurt. At least that’s what my brain tells me.
It wasn’t until I was in my 30s that a doctor gave my sensitivity to pain a name: fibromyalgia. No one could tell me why I had this thing that can’t be tested for or proven. Sure, there were theories.
One pain specialist asked if I’d ever been sexually assaulted, because that kind of trauma is connected to fibromyalgia. I was, when I was 14, but I’d been ultra-sensitive to pain long before that. An online article suggested a link between the Epstein-Barr virus, also known as mononucleosis, and fibromyalgia. I had mono when I was in the seventh grade. But again, my pain sensitivity existed before that five-week illness.
The first doctor to mention fibromyalgia to me wouldn’t commit to a diagnosis. She prescribed amitriptyline saying that “empirically that’s what we’re treating you for.”
In addition to the chronic muscle pain, I have osteoarthritis, although I’ve been told the degeneration in my neck doesn’t look bad enough on an MRI to cause the pain I complain about. In other words, it’s really all in my head.
Happening upon Relief
As with most fibro patients, I have some other health issues, including GI problems. At one point, my doctor suggested I quit eating gluten. When I replied that I hadn’t eaten gluten in over a year, she suggested I quit eating dairy. I rolled my eyes, feeling like she had no real solutions. But I did try it.
She also wanted me to quit taking ibuprofen, which I wasn’t happy about because it was the only thing that took the edge of my chronic pain.
For four weeks, I read every label. If a food contained whey, casein, or any dairy products, I didn’t eat it. Then one day I realized my muscles didn’t ache all over. I didn’t even wish I could take ibuprofen because I didn’t need it.
So I kept it up. I didn’t eat dairy at all for four months. Then came my birthday and dinner out at The Cheesecake Factory. I decided I’d been good, so I deserved a piece of cheesecake to celebrate. I ate the whole thing, which, if you’ve ever been to The Cheesecake Factory, you know is a huge slab of pure dairy and sugar goodness.
The next morning, I awoke to a feeling like I’d been hit with a Mack truck. Every muscle ached.
I’ve been mostly dairy-free for several years now and feel much better.
Still Pain Sensitive
Which is not to say I don’t still deal with pain. I still don’t understand why pain scales have a 0 on them. Are there people who, at times, don’t feel any pain? I suppose there are, but I wouldn’t know about that. Every day something aches or I do something that results in acute pain beyond what those without fibromyalgia would feel.
But the pain is more manageable without the added inflammatory reaction from bombarding my body with dairy products it doesn’t like.
It’s also easier to deal with when I quit listening to those who don’t understand tell me, “That didn’t hurt.”

Hello dear Linda K
My name is Tina.
I understand you so so much.
I will be 57 this month and it has been 20 years now that a specialist had told me that I had Fibromyalgia. I was 37 at that time,but my pain started a while ago.
Lately I was telling to myself and some people how much I am sensitive when I just hit myself by accident, how much it hurts!
The month of February was really bad for me and very frustrating!
I began to have very big chest and stomach pain while eating . I thought I was having a heart attack, so my husband and I ran to our little hospital here where I live.They did what they had to do if it was a heart attack.,but it was not a heart attack. The pain was so bad.so I thought it was a spasme at my esophagus.(the tube were the food goes down to the stomach.
The 2 first times I had this very bad pain,they gave me something , calmed down some pain but I had a very bad reaction after.I started to have very strongly Restless Leg Syndrome. It was so strong that I had to go home.I was going crasy with my legs all night because it lasted around 5 hours. I had to stay up walk and jump…Oh! Boy!
After all, I had to go back 5 to 6 other times because of the same pain. I was so shy!!
They tried everything to take the pain away but nothing was working. Even Diaudid in pills and it didn’t ta,e the pain away. They they finally gave me a shot of Diaudid in the arm. Finally the pain went away!
Thew these 8 times I went there were very very unpleasant things that happened.
Of course the Dr’s don’t like giving this kind of medication, and of course they have been telling me so many times, but I kept telling them that I had tried everything they gave me and nothing was working apart from Diaudid!
There was a nurse that told me. TINA WE DON’T BELIEVE YOU! WE DON’T BELIEVE YOU! YOU ARE SICK IN YOUR HEAD! YOU ARE SICK IN YOUR HEAD !
I just couldn’t believe what I had just heard! I started crying and kept telling the nurse that its true that I am in pain!!
Some other times, this other Dr didn’t wanted to give me some Diaudid! So by trying other things,I new that my pain will take much longer to go away, by trying again and again something else,but I kept telling them that its not my fault if Diaudid was the only thing that works to take my pain away.
I do understand why Doctor’s don’t like giving this kind of medicine, cause it is easy to get hooked on it.
I remember in bed at the hospital telling a nurse that my stomach hurts she walks away and I don’t see her anymore, well didn’t see anyone coming to see me at all. I was waiting and waiting. I was being ignored completely even. from the Dr.
I know what they were thinking of me! I was mad and it had been a long while that I was waiting.
I finally got up went to see the Dr and told him that I had to speak to him.Again I was still waiting .
When the Dr came to see me, I was insulted and mad so I said to the Dr. I know what you all think of me because of my mental health. My stomach hurts and no one believes me. I must of said other things but I can’t remember it all.
So the Dr says to me ok I will give you your dose of Diaudid!
So the nurse comes and gives me the shot and I couldn’t believe it! They tried to trick me!
I new very fast that they didn’t give me the normal dose that the other Dr’s would give me.
I told the nurse and see just acted like she didn’t know! I told her and telle the Dr..
The Dr comes back to see me. I tell him that my stomach still hurts and that I did ‘t recive the right dose so FINALLY the Dr tells me that he will give me the other portion.
It was so awful! They did that even after I had passed a test,the camera in the stomach which I have a ( hiatale hermias) and also something I was doing in December and January. I had problems of bulimia
This problem of Bulimia I didn’t want anyone at first to know about but I finally told my Dre….
Its ok know with this problem . I had stopped my bulimia when I started to have very big pain!
I told all of this, what was going on at the hospital, she wrote a lettre and things are ok now.
There’s one thing I know that I can’t eat anymore is popcorn! I finally learned that a no no for me because it gives me big stomach pain.
I’ve said alot like always Sorry!
All this to say like you Linda, when we have pain it could be way worse for us who has Fibromyalgia than another person but not being believed ,that hurts alot!
One last thing I am thinking about.Last year the same thing happened to me a out this great pain in my chest and stomach. It was the first time it had ever happened to me. Well at the hôpital there was a very nice Dre that I have never met. She was replacing a Dr. She was sweet and kind with me and there was something she said that struck me even up to today. She said to me ” I will take care of you and I will not take it into account what is written in your file!
That hit me and I found it nice that she told me this!
I know for the last 20 years I had to go very often at the hospital. There is a protocol written that they have to respect. If I don’t feel good in my head or I want to cut…etc I present myself there for safety. I often sleep a night there and then I decide to go home .If I am really in bad shape they keep me 3 days and then I am sent to a bigger hospital to be put in psychiatry.
I have some ups ups and downs! Its a real roller-coaster with me,but I dearly hope with all my heart so that the Lord my heal, deliver me for good! What a testimony it would be and all the Glory would go to God alone.
If you took time to read my story, I would like to thank you because its long to read, also long to write
God Bless
Tina Morneau
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Hi Tina,
Thank you for sharing. I’m so sorry you had to go through not being believed by the doctors at the hospital. That is very frustrating. I’m glad you were able to finally get the medication you needed to stop the pain.
I am praying that God will, indeed, do a miracle in your life and heal you. But if He doesn’t, remember that it is still well with your soul. He loves you and will never abandon you.
Peace and grace,
Linda
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Hi Linda
Thank you for reaching my long story.
Thank you for sharing your struggles, because you are an encouragement for us that also struggles and that we are badly understood!
I would like te say,if it could help you or anyone else that suffers of Fibromyalgia.
For years the pain was awful. My Dre tried some pills but nothing was working, then she gave some Cymbalta. It was a miracle for me concerning the pain,.My dose for a short time at 90 mg.That was to strong for me.Then I was on 60mg for a long while, but I finally found out that at 60mg gave me migraines. Now I am on 30 mg of Cymbalta and it works for me,if I compare it when I didn’t have anything for the pain before.
There could be times,like the changing of a seasons,I do feel pain,but like I said,it’s really not as bad as before taking Cymbalta.
I know it is also given as an antidepressant too,but Dr’s are giving it more and more for severe pain.
I hope that if you are suffering badly of Fibromyalgia, maybe this medication could work for you as it worked for me.I am not a person that likes taking pills,but I don’t have a choice even for my mental health.
Thank you Linda for your prayers!
I appreciate it
Tina
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Linda, thanks for this.
We do not feel each other’s pain, physical, emotional or spiritual. When those how have that “0” pain level to say what your mom did, just proves the extent to which they do not understand.
Some of the people who have had the greatest impact on my life were those who hurt the most. The difference between those who hurt and those who merely like to get attention by talking about their aches and pains is, “Those who really hurt rarely talk about it.”
Again, thank you for speaking up.
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Thank you for reading. My goal is writing about my struggles is to give hope to others.
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