Fibromyalgia, My Story
The definition of fibromyalgia, is a wide spread pain, that tends to have periods of more intensity to small times of calm. The problem is it never goes away, you learn to live with it. Once it starts the pain is there every day. If someone does'nt know you have it, they would assume nothing is wrong. Living with fibromyalgia isn't easy, but it can be done. I had no idea what it was until I was diagnosed many years ago. Doctors believed it was all in your head. Thank god that is no longer the case.
- Wide spread pain with recognized pain points.
- Numbness in the hands and feet.
- Restless Legs syndrome
- Memory Issues
- Sleep Disorders, Both falling and staying asleep.
- Cramping, In the lower abdomen
- Irritable Bowl
- Brain Fog
These symptoms all occur on a more intense scale than normal. Everyday, not just once in awhile. When using the pain scale to gauge a person with fibro pain everyday is a five. When in the middle of a flare up it can be an eight or even ten. When pain is this bad it can take days or even weeks to get it back under control.
Welcome To My Story
It seems so long ago now, but it isn't. I was a young mother with three small children. I went through my day in a fog. Many doctors visits and tests were done, always with the same results. We can't find anything, it must be just from having three children, three and under they said. Then when it didn't go away, and symptoms got worse, the new reason was it was all in my head. Just when it seemed I would never find out what was going on a doctor finally listened to me. He noticed what I call the little things that all added up to the diagnoses of fibromyalgia. It was a day I'll never forget. I was in excruciating pain; he started pressing on different spots all over my body. I nearly came unglued as he pressed under my shoulder blade around my lower spine, elbows, knees, ankles, and feet. I've already had arthritis, so I never thought these spots of pain meant anything. Now I know it meant a whole lot. I sat there holding back my tears; I finally had the answer I was looking for. Not only did I find out why I had the brain fog, but it also explained the overall pain, inflammation and my inability to sleep as well. All these symptoms had been written off because I had small children, but not any longer. I wanted to jump off the table and kiss him. He wrote my prescription for pain med, vitamin D, and a sleep aid. I was smiling through my pain all the way home. Someone finally believed me, and the pain wasn't all in my head. Life set in and life was busy, all of a sudden I was knock on my backside. What is going on now? I thought to myself. This feeling is what I now refer to as a flare. I don't always know what will trigger it, trying to eat well and walking when I can help. Just remember to rest and relax when you need to. Listen to your body.
( As it turns out, I have 11 out of the 13 pain point indicators of fibromyalgia)
The pain points are:
- Face and jaw bone
- Collar bone
- Top shoulder blades
- The neck where it meets the shoulders
- Base of skull
- Rib cage From inflammation in connective tissue
- Back side of the hips
- Where the hip bone meets the tendons
- Middle lower spine, close to the tail bone
- Tender just above the elbow
- Knees, on the side
- Ankles, where the joint meets the bone
- Feet, all over. Tingling burning and itching
What Is That!
It's a burning pain
Feels like you're being
Stuck with a hot poker
Sometimes stabbed with a cattle prod
Starts with numbness and tingling
Add five times the fatigue
Walking on hot coals
While trying to find
a way through the fog
Hurt all over
Hurt all the time
You can't rest.
Recommend Vitamins, Supplements And Medications
Be Aware, Watch For A Flare
It's an increase or exacerbation in the intensity of your symptoms.
It can bring out additional symptoms due to the stress on your body.
It can last days, weeks, months, or years.
Along with limiting abililities it can incapacitate you, due to weakness and pain.
It can come out of no where and knock you off your feet.
Sometimes you can avoid the worst flares by learning the triggers before they come on.
12 Things to do When Having a Flare up
Here Are Some Of The Ways I Get Through:
1. Favorite Movies / TV Shows / Good Book – I love watching funny shows when I don't feel like laughing. I also love a good TV series, I record my favorites to watch on my bad days. Sometimes I curl up with a good book.
2. Healthy Food – Filling myself with healthy anti-inflammatory foods can help. But sometimes I just want a nice plate of comfort food or a warm cup of herbal tea.
3. Heating pad / Ice pack – In the winter, I like my heating pad, a lot! With chronic pain comes lots of widespread pain, sometimes in various places and then I will resort to an ice pack or essential oils.
4. Soft Blankets – Sometimes I just need a soft blanket to curl up with and I have a few of these. Great to use in the winter months.
5. Comfortable Clothes and Socks – I have a ton of comfortable light weight clothes and use lots of layers and live in my fuzzy socks. Especially first thing in the morning or a chilly winter day.
6. Neck Pillow – Besides regular pillows, I use a neck roll. My newest pains are on my neck and face. I have found that resting, relaxing my neck muscles seem to help.
7. Break Thru Medicine – My break through medication is so important along with some topical ointments, creams, and essential oils. I don’t know if I could make it through a flare without them
8. Phone / Laptop – Whether it’s writing or connecting with others that are going through similar situations my phone and laptop are my lifelines.
9. A Friend To Talk To – It helps to have someone that understands you. Sometimes you just need to talk to someone when you’re having a bad day. Sometimes I just call my best friend or text with her. Listening to her talk helps get my mind off the pain. I like listening to what’s going on in her life. Most of the time she can tell by the tone of my voice, that I’m not having a good day. She always knows what to say to cheer me up.
10. Crock pot – On my worst days the last thing I want to do, is cook. I do a lot of make ahead meals. Or my husband takes over the cooking on these days, all I have to do is warm it up or let him take over.
11. Mattress Topper/ Top Sheet – A good mattress and mattress pad are important. A good quality mattress and pad really helps. Sometimes when my pain is really bad I can’t use blankets and this keeps me warm. If the pain is bad I can only use a sheet. The extra pad helps keep me warm and my muscles relaxed.
12. Epsom Salt Bath- I lay in the tub and soak my muscles in Epsom salt mixed with essential oils. Add them to the bath tube while the warm water is running.
The mixture is 1/2 a cup salt to 5 drops of essential oil. ( It's great for relaxing and loosening up the muscle tissue.)
Foods That Cause Inflammation
This list of foods will help to reduce the swelling in the tissues, which will reduce the pain. I have worked on reducing all of these foods. Working on eliminating processed t foods can make a huge different to your pain levels.
- Whole grains
- Sugared cereal
- High fats and fried foods
- Foods with Nitrates and preservatives.
- Processed foods, the worst are prepackaged convenience food.
- Caffeine, 2 cups a day or decaf.
Are You tired of being sick and tired? Stop eating these foods.
Foods That Are Anti-inflammatory
The foods listed here are good for you, and they reduce inflammation.
Eat these foods to reduce the pain in the body:
- Chia Seeds
- Hemp Seeds
- Wild Fish Fat
- Ginger Root
- Extra Virgin Olive Oil
- Coconut Oil
- Cayenne Pepper
- Herbal Green and White Tea
- Sweet Potato
It's Hard For Family to Understand
No matter how much people love you and your family and friends just don't understand your pain. I know my family loves me, they have just never had to live with pain every single day. We make plans and sometimes we have to change them. Other times I feel alone because they go without me. My brain tells me, you can't do this outing today, my heart cries because it's another time I miss out on time with my family. On those times I write unless my fingers are too painful to type. Recently I made the trip to visit family. Getting there was exhausting, and I spent three days on the couch to recover. I was lucky to have my mom to help me. Finding this online community has become my saving grace.
I have learned how to cope with my illness, but some days it's all most unbearable. My illness has progressed, and new symptoms have shown their ugly heads. I have gone from a little ache and pain every day to all out burning on fire radiating heat sensitive pain points. The newest one I'm just learning to cope with, Electric type shock in my face, hands, and feet along with intense burning pain in the same areas. Some days swelling has progressed to the point that I can't get my shoes on. Winter time is the hardest time for me. Sometimes I go one and a half months without leaving my home. When I go through those times, I interact more online. It feels good to be able, to connect with others. On those days I no longer feel so alone. A family isn't always blood. It can also be the people we feel connected to the most. Whether we see them every day or talk only online, strength, love, and caring can come from the most unusual places.
Please know just like me, you are not alone. Some times all you have to do is open up and take a chance. There could be someone out there going through the same thing. You will never know until talk about it. To be completely honest this is the first time I have spoken this extensively about having Fibromyalgia. So just remember you are not alone. I hope my story and the suggestions I provided can help others change the way they eat, along with the recommended vitamins and supplements. These things change how fibromyalgia affects the body. Take the time to relax and recover when you need to. There is no shame in doing what you need to get back to health as much as you can. I hope this brings others out there comfort, knowing there are people going through the same thing.
From my house to yours: Love, Light, Strength, and Wellness is my wish for you.
- Mayo Clinic
- Fibromyalgia online community
- Dr Axe info on Fribro
- My family doctor and specialist who did all the testing.
- Others I know living with Fibromyalgia. Names withheld out of privacy
© 2017 Terrie Lynn