How To Describe Fibromyalgia Pain To Your Doctor

Published: // Updated: March 13, 2021

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Fibromyalgia ranks among the most puzzling and common chronic pain conditions. Fibromyalgia pain moves around from one area of the body to another or it seems to be everywhere at once. We experience several different types of pain. The intensity of the pain also changes. It can be very difficult to describe fibromyalgia pain to others. We often feel misunderstood and disbelieved.

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It is hard for people who do not have chronic pain to understand how it is for us to live with it. Even those closest to us can not fully understand. They cannot and do not know the painful life we experience.

It can be just as difficult to describe how your pain feels to your doctor. Many doctors use a 0-to-10 pain rating scale, which has its limitations. Each of us experiences our pain differently. One persons 8 may be another person’s 4. I often feel that because I always have pain, I under-rate my pain on the pain scale.

Describing Your Pain To Your Doctor

We have to rely on our words to communicate our pain to our doctor. The better we can describe our pain, the easier it may be for our doctor to help. Your doctor needs to know not just how much the pain hurts, but how the pain hurts and how it impacts your life.

Those of us with fibromyalgia suffer from different types of pain. Some words that can help you describe the way your pain feels include:

  • Dull, deep aching pain
  • Sharp, stabbing pain
  • Radiating or shooting pain
  • Stinging pain that feel like a sunburn or pins and needles
  • Strange sensations that feel like crawling, tingling, burning, itching or numbness
  • Shocking pain, it can feel like electricity zinging along the nerve and explodes in a certain area

Keeping a pain diary is a good way to track your pain over time and will help you be more specific at your doctor appointments. You can also use the American Pain Foundation’s LOCATES memory aid. It is a good way to remember how to describe your pain. Each letter of LOCATES stands for information you should tell your doctor:

Location of the pain and whether it travels to other body parts.
Other associated symptoms such as nausea, numbness, or weakness.
Character of the pain, whether it’s throbbing, sharp, dull, or burning.
Aggravating and alleviating factors. What makes the pain better or worse?
Timing of the pain, how long it lasts, is it constant or intermittent?
Environment where the pain occurs, for example, while working or at home.
Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

If you want your pain to be taken seriously, don’t ever rate your pain at a 10! Unless you actually look as if your pain is a 10, your doctor will think you are exaggerating.

Dealing with fibromyalgia pain is a process. The more specific and detailed you can be when describing your pain, the more likely your doctor will be able to help you manage your pain.

Chronic pain not only makes us feel helpless, sometimes it makes doctors feel helpless, too. I came across an interesting article that explains how frustrating treating chronic pain can be from a doctor’s perspective: How doctors respond to chronic pain.

Do you have trouble describing your fibromyalgia pain to your doctor or to your family and friends? Do you keep a pain diary?

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45 thoughts on “How To Describe Fibromyalgia Pain To Your Doctor”

  1. Very good post! I was especially glad to see you post about not eating too high on the pain scale! My doctor was talking to me about this very issue! He told me that when a patient comes in and they are talking, laughing, on their phone, etc. and then tell him that their pain is “a 12 on the 1-10 scale”!……he then doesn’t take them seriously. He said that while he understands that everyone handles pain differently, that the 10 rating is supposed to mean “the worst pain you can imagine”……..and any time you can laugh and talk, you are NOT having the worst imaginable pain……period. Personally I think people just don’t know how to describe their pain, so they just pick a high number. Hopefully your post will help many people to properly express their pain issues to their doctor!

    Reply
    • Thank you Roni. I agree with you. Pain can be hard to describe and when you live in constant pain I think people give a high number because they want their doctor to understand how bad it can get. I always give my doctor three answers. I rate my pain at the given moment which is usually 2 or 3 (it’s usually lower when I am out and about, then ramps up when I get home). Then I tell her my pain scale on average and also let her know there are days when it’s a 7 to 8. Although fibro pain is draining, it is not the worst pain imaginable. For me, that would be childbirth and sciatica.

      Reply
  2. Thanks Sue for a post by someone who actually has and understands Fibromyalgia. I found your information very useful as yes it’s so hard to explain the pain I have from Fibro and my chronic nerve damage pain. It’s sad to say I found most of my help via Pinners not specialists. Isn’t it amazing that despite living with pain 24/7 we want to help others. Sending love and soft hugs to all with a chronic illness 🙂

    Reply
    • Hi, Metti. I am so happy you find my post useful and thank you. Yes, it is amazing. The people I’ve met, who live with constant pain are some of the most generous, helpful, and kind people I know. Gentle hugs to you.

      Reply
  3. Has anyone found a medication that works!? I recently tried Lyrica and I felt awful on it! I felt high, stumbled all over but most importantly it did nothing for my pain. I also suffer from bursitis in my hips and arthritis. I take etodolac at bedtime but really doesn’t help. I’ve been tested for EVERYTHING! So very frustated?

    Reply
    • Hi, Amy. I haven’t found any medication that helps. I take amitriptyline. It does help me sleep good and I feel like good sleep is the most important thing to treat. If I can sleep good, the pain doesn’t get to me as bad.

      Reply
  4. Thank you! This is so helpful. I go to my doctor this week and have trouble describing things and tend to leave it important details. I also await a disability hearing date and these suggestions will help with that as well. This is just what I needed!

    Reply
  5. Thanķyou so much for this article. I have lived with Fibromyalgia for more years than I care to remember and still have new symptoms popping up along the way. The latest is itching, OMG … how it itches! my whole body and then recently this dreadful blistering rash on my forearms. My doctor is yet to do a biopsy so I will post on that at a later date. When you described the painful skin, It was like you where inside, knowing my every pain. Even my scalp hurts just brushing my hair, in fact just moving my hair out of my eyes hurts my scalp. Almost everything you wrote I feel and I can’t thank you enough for helping me realized there are others who feel my pain, I am not alone ???? Best Regards, Els.

    Reply
    • You are very welcome, Els. Glad I could help. I also have new symptoms pop up. The skin pain started a couple years ago for me. It is worse in warm weather. I can’t even walk out the door in the summer. As soon as I do my skin starts stinging and it feels like it’s on fire in direct sunlight. I don’t mind being cooped up in the house in the winter but it drives me crazy in the summer. I felt alone for a long time. It’s hard not to when no one understands what you are going through. This blog has helped me realize that I am not alone. We have each other. It is a great feeling. Take care, Els and do let us know how your skin biopsy turns out.

      Reply
    • Did you ever find out what the blistering rash is? I have the exact same thing. And yes……the itching and burning is excruciating.

      Reply
    • Thank you so much for your post. Just knowing I’m not alone in this journey is really helpful. I have felt like I was going crazy when my scalp started hurting so bad I couldn’t brush or wash my hair for days. My doctor has prescribed MigraZap which I get through Amazon, it has helped if I get it on early… maybe this will bring a little relief for you too. Sending you nothing but Love 💗 in your journey.
      Paige

      Reply
  6. Hey thank you so much for this post I am currently wondering if what I am experiencing is fibro I do not want to jump the gun but this is very helpful for journaling my pain

    Reply
  7. I never know how to answer the doctor when they ask me to rate my pain. Which pain? The joint pain at the moment is perhaps a 5. The burning, stinging pain on my legs is at a 4. The stabbing pain under my right breast is in that instant a strong 7. My migraine is an 8.

    Reply

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