Inspired by many others with fibro, CFS, and other “invisible illnesses,” who have shared their experiences to help spread awareness, I’m starting this page to share and document what fibromyalgia is like for me.
First, borrowing from myfibrotasticlife, below is my take on the 30 Things About My Invisible Illness You May Not Know. Second, I’ve started documenting my specific symptoms — stemming from people asking what it feels like to have fibro.
If you are among those who also has an invisible illness, feel free to copy and share your own version of the 30 Things (and check out the Invisible Illness Week site).
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia
2. I was diagnosed with it in the year: 2013
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: slowing down and not expecting as much from myself
5. Most people assume: what I have will soon pass
6. The hardest part about mornings are: feeling so heavy and stiff
7. My favorite medical TV show is: Grey’s Anatomy (it’s a girl thing)
8. A gadget I couldn’t live without is: laptop (is that a gadget?)
9. The hardest part about nights are: regretting I couldn’t do more during the day
10. Each day I take _4_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried just about everything
12. If I had to choose between an invisible illness or visible I would choose: both have their issues
13. Regarding working and career: very fortunate to be able to work from home
14. People would be surprised to know: not sure — I tend to be an open book (I think)
15. The hardest thing to accept about my new reality has been: rethinking my goals
16. Something I never thought I could do with my illness that I did was: connect with people around the world
17. The commercials about my illness: are a complete joke
18. Something I really miss doing since I was diagnosed is: cooking
19. It was really hard to have to give up: haven’t gotten there yet
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: be outside doing sports, hiking, running, kayaking, canoeing, mountain biking, cycling, swimming, barbecuing, dancing . . . .
22. My illness has taught me: gratitude and patience
23. Want to know a secret? One thing people say that gets under my skin is: it will get better
24. But I love it when people: refocus me on the good things
25. My favorite motto, scripture, quote that gets me through tough times is: the Buddha’s teachings
26. When someone is diagnosed I’d like to tell them: your life isn’t over, just redefine it
27. Something that has surprised me about living with an illness is: what my real priorities are
28. The nicest thing someone did for me when I wasn’t feeling well was: help me move and set up my bedroom for me
29. I’m involved with Invisible Illness Week because: I notice now how little awareness there is
30. The fact that you read this list makes me feel: <<<warm fuzzy smile>>>
My Fibro Symptoms
| Bruising | Very painful ache, as if bruised and something is pressing on the bruise | Can hit anywhere |
| Burnt skin | Painful, sensitive skin, like people get with a second degree burn | Usually fingers, toes, hands, arms |
| “Shin kick” | Isolated, sharp, radiating pain, similar to the pain you get when someone kicks you in the shins | Can hit anywhere |
| “Charlie Horse” | Severe cramping, like people get with a Charlie Horse | Can hit anywhere |
| “Pulled/Torn Muscle” | Sensation of having a torn or pulled muscle | Can hit anywhere, but usually more in legs, arms, shoulders |
| Arthritic/stiff | Pain in movement around the joints, bending, grabbing | Hands, neck, knees, toes, fingers |
| Headaches | Ranging from general headache to migraine-level | Head |
| Bruising with swelling | Sensation of wide-spread bruising with the feeling of the area being swollen — area is neither bruised nor swollen, just feels this way; usually accompanied by Muscle Lock (below) | Can hit anywhere, but usually neck, mid-back, top of head (areas along spinal column) |
| Fever skin | Highly sensitive skin that feels like the body is experiencing a severe fever — tingling, pin pricks, pain at touch, burning | Entire epidermis |
| Muscle Lock | Muscles lock up and experience significant pain radiating across entire body when attempting to move the “locked” muscles | Can hit anywhere |
| Internal sharp pains | Like a Charlie Horse, but hitting internal organs like the lungs, stomach, abdomen | Internal organs |
| Stomach cramping | Like typical stomach cramping | Stomach |
| “Traveling Charlie” | Charlie Horse sensation that randomly and quickly travels across the body, hitting multiple body parts, often two at a time | Can hit anywhere |
| “Detaching muscles” | Sensation that with movement the muscles are being ripped from the skeleton | Usually in legs |
| Pin pricks | Pin prick pains, multiple pricks at once, usually spread across an area | Mostly fingers and toes |
| Lack of appetite | ||
| Excessive thirst | ||
| Fatigue/ exhaustion | Can feel at times as if I’ve been drugged, extreme effort to open eyes or move |
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