Stephanie, I am sorry you are experiencing so much pain right now...I can definitely sympathize. In the months that lead up to me leaving work on disability, I would be in so much pain, my husband would literally have to help me get out of bed.
What does Fibromyalgia feel like and what is it like to live with it? Well, here's my answers.
Fibromyalgia for me feels like a deep aching sensation that goes right to my bones. It's constant and never ever goes away. Take your finger and push it as hard as you can into your upper arm (on the outside, not on the bicep). Keep pressing as hard as you can and when you can't stand it anymore....press harder. Now, take that sensation, and try to imagine every single part of your body feels like that, day in and day out. That's what Fibro feels like to me and that's without the flare ups, which feel 100X worse, and include complete and utter stiffness as well.
What is it like living with Fibro? Well, it's a conscious decision each morning to get up and face the day, knowing you'll be in pain. Sometimes, when I wake up but before I move, I can almost feel pain free...sometimes. But there is life to be lived and I'm needed in this world, so up I get, put on my smile, take my drugs and slowly ease my way into the day. I have to constantly rest and pace myself thru the day, and I rarely get to do all the stuff I want because I tire out too quickly. I had to learn secrets and tricks to maintain my reputation as the "go to" girl at work who can solve every problem, because my memory is shot due to Fibro fog.
It means struggling thru every single minute of the day to balance and manage all that has to be done. It means leaning how to perform in public so people don't see how bad things are for you. It means constantly having to live in a world where people don't understand how you can be in such agony because "you look great". It's emotionally wearing on the body as well as physically.
There are lots of hints and tricks and such to help, such as heat, rest, medications, exercise, etc. but it's often hard to drag yourself around to do these things. Personally, I think Fibro is one of the nastiest conditions out there, because there is generally never an outward sign of what you're going thru, so you're always dealing with your disease as well as people around you, and there never seems to be a break.
Finding a support group is one of the best things you can do. We understand because we live with it too. We know exactly what you're going thru, and it makes a difference when you can talk to others about what you're going thru and they get it.
I hope that you are able to find the right combination of medication, exercise and other treatments so that your pain might be relieved, and you can start enjoying life with less discomfort.
Conditions: Fibromyalgia, Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily