I got these images from the “Life after the semicolon” page on Facebook. It is a good resource for those of us who deal with depression, suicide, or any mental illness really. Check it out. I recommend keeping these images on your phone or tablet so they are handy for you to do a quick self-check from time to time.
Here is another one. Kinda similar to the first but not exactly the same.
Hang in there beautiful people. Remember you can always reach me by dm or by email. I am here if you need to talk to someone but I am not a medical professional. Do your best and reach out for help if you need it. You got this!!!
Someone posted this graphic on Facebook. I have tried many times to explain this to people. That my pain is higher than typical. I don’t know why but it is. My baseline or normal includes pain. I ALWAYS hurt. Every. Single. Minute. I never drop below a 4. Never. A 4 is a good day. Think honestly a minute about how you might be acting at a 4. Compare. I don’t want admiration. I just want understanding. Understanding of what I go through. Understanding of what I feel. That’s all. Jus a little understanding.
Fibromyalgia is a very confusing condition for several reasons. First of all, there is just not a whole lot known about Fibro. Not a lot of money or time is put into the research of Fibromyalgia. Second, there have been a LOT of symptoms that have been attributed to Fibromyalgia.
Sometimes it seems like once you have the Fibro diagnosis every time you have a new symptom your Doctors just say, “Oh, it’s the Fibro,” without even investigating for other causes. I have noticed some Fibro patients are bad about this as well. I have left many bulletin boards and support groups because I have gotten sick of all of the “Who else has my symptom?” posts. They go something like this:
Initial poster: “I have noticed every time it rains that my left nostril gets stopped up and my right elbow itches. Does anyone else have this problem? It is driving me crazy. My neighbor’s sister’s dog’s groomer said I can take supplement X to help but I don’t know what dose to take….”
Answering posts (approximately 84 out of a couple thousand users): ” Yes!! I have that and it is a Fibro symptom! It is caused by ….insert one of 84 causes….and I take supplement …..insert one of 20 supplements….and it works wonders!! I take …. insert one of 20 doses…. Good luck and keep us posted!!!”
Third, Fibromyalgia is very hard to explain because it is not just one type of pain you are dealing with. I experience about 7 or 8 different types of pain from aches to sharp stabbing pains to electric shocks to pins and needles. The type of pain varies in location and intensity. I have certain places that hurt a lot of the time but no part of my body is off limits and I never know what will hurt today.
Fourth, patients can experience numbness and weakness in their arms, legs, hands and feet. This makes using their hands or walking and driving difficult. It limits activities.
Fifth, fatigue. Fatigue is a major symptom of Fibro and one I struggle with in particular. Sometimes the fatigue is so bad I cannot lift my head from the pillow. It can last for an hour or it can last for weeks. I have no idea when it will hit or how long it will last. My medications also make me sleepy, and I have narcolepsy which makes me experience excessive daytime sleepiness. It is a wonder I am ever conscious!! LOL. I struggle with this. Sometimes I feel like I sleep through my life. I have to take at least one nap a day.
Sixth, Fibromyalgia is unpredictable. Some days I may feel pretty close to normal and may be able to go shopping for a little while or run errands or clean a little. These days are rare and I try to make the most of them. Other times I may sleep for a week or writhe in pain for days. I never know what a day will bring. I have gotten better at predicting my arthritis pain. I know if I am walking/standing/sitting up for a few hours a day then I will have 3-4 days of extreme pain in my hips and back. The Fibro pain though is pretty unpredictable. I do know that it is affected by the weather. When it rains I hurt. I know that much.
Seven, there is no set treatment. There are a few drug regimens, some get results with exercise regimens, and others with dietary changes or supplements.
Last, no two people with Fibromyalgia experience it in the same way. The same can be said for treatments. No two patients respond to treatments in the same way. A lot of treatments are spread by word of mouth and are tried by desperate people paying out of pocket in hopes of finding ANYTHING to help relieve the pain.
Hopefully, in the future we can make some progress in helping those of us with Fibromyalgia find some relief. It is difficult to live a quality life when you spend a great deal of it in pain. Gentle hugs out there to all my Fibro brothers and sisters. Comment below and let me know how you are coping and how you are dealing with the pain.
**Disclaimer: None of these pictures are of me or anyone I know. They are random pretty people off the interweb I found in a Google search for images.**
Guys, I try to be understanding, you know? I try to remember that no one knows the hell we go through in our bodies but us and that it is pretty near to impossible to imagine, but, holy heck, sometimes I get so tired of being the understanding one. You know?
So here is what happened….. My best friend and I are getting ready to take a 9 hour road trip with 4 teenagers (2 boys, 2 girls) to go to the beach for a week. Now my friend will do most of the driving and the girls are going to drive their own car so we won’t all be jammed in one car. Whew! That’s a relief. I am however really worried about being able to make it through this vacay still on my feet. This is my first one of this length since I got sick. Last year we went to Hilton Head for 3 days and it kicked my butt. Anyway…. I was trying to get all my “stuff” done early this week so I could rest Wed., Thurs., and Fri., then packing up with help on Sat. I ran errands Mon. morning then came home around noon and napped the rest of the day. That left me with a ton of stuff to do yesterday!
So…. first, I needed to visit some thrift stores to look for a push wheel chair or transfer chair. I need a way to make the 300 yard trek from the hotel to the boardwalk to conserve my energy and protect my back because walking makes it hurt. Then I was going to get my eyebrows waxed because EEEk!, grab a couple groceries at WalMart that only come from there, get a pedicure because again EEEk!, pick up a prescription, get a massage/myofascial therapy to help with back pain, and go to Super Target for sunscreen, groceries that only come from there, check for clearance sand toys, stuff like that. Whew!!!! That is a lot for a girl who is only out of bed for an hour or so at a time!! So I decided to cut the thrift stores out. I had already visited a ton with no luck and Walgreens had one on sale $50 off and I had $20 reward to use, so it wasn’t too bad. Then I bumped into my Mom at the Hair salon and begged her to get the Walmart groceries for me while she was there. Grocery shopping is the worst on my back so I was very grateful to her for doing that for me. Ha! Three things off my list.
Now, waxing. As you can imagine, that is pure torture with my sensitive nerves. Fibromyalgia makes your nerves about a hundred times more sensitive than the average persons at least. Sometimes we are hypersensitive and it is even worse. Today it was bearable but barely. The stylist always laughs at the faces that I make when she pulls the strips off. I also make little screams. I apparently scared a teenager out of trying waxing yesterday. Sorry honey. It isn’t that bad really. Only lasts a minute and much quicker than plucking. My arms are so weak though that I can’t pluck my own eyebrows anymore. I have to go get them waxed about once every 3 weeks. Okay, torture part one, Over.
Now on to torture part 2. This one is not too awful bad.. Lol. Getting a pedicure has it’s good parts. Soaking my feet in the nice warm water helps take out some of the toxins in my system and just plain feels good. However, my feet are very callused and also I get the one that comes with the sea salt scrub so that isn’t pleasant. Overall, the pedicure is one of the better parts of the day with minor torture thrown in. I got my nails painted my favorite shade of blue and she painted little palm trees on the big toes in honor of going to the beach. I have never done that before.
So then I rush across town to the massage therapist. Now she is not just any old massage therapist. She is a mean massage therapist. Lol. Just kidding. She practices Myofascial Release Therapy which she learned from the guy who came up with the treatment. Basically, it incorporates massage and PT and she digs right into those trigger points to get them to release and relieve the pain. At least that is what it feels like to a layman. I have a few pics I am going to post but if you have fibromyalgia I definitely recommend you look into it. I cannot afford to go to her as much as I would like but I can always tell a difference after she works on me. It hurts like heck. Sometimes I groan or ouch or make a little squealy sound, but I really try to not be a baby about it because it really helps. It kills me though when people are like acting all jealous about me going to get a massage that is torture for me and I try to explain but they are just like oh yeah, sure…..
After all of that I finally get to go to Target (Heaven on Earth), and I really just want to go home and go to bed. I know that if I do I will have to come back out another day and do it and I already know I will be laid up tomorrow. So off I go to Target. I use the zippy cart and barely make it through. I finally get out of there and home. I have been going from 9 am til 4 pm. I lay down immediately and sleep til 9:30. I only get up then to use the bathroom when my kids wake me up to make sure I am ok. Lol Before I got sick I could have done that and come home feeling refreshed and happy and ready to tackle anything. But now I just feel like I have been hit by a truck and I could sleep for a week. I definitely overdid it. Such is life with Fibro. It really sucks. Tell me about your experiences. Do you feel like some of the things you used to love before are now torture? Can you handle massages? How do you handle it when you have to put in a full day? How do you prepare for a long trip? Leave me a comment guys. I would love to hear from you!!
We CAN do this!!
We WILL do this!!
Guys, there has been so much going on and the big thing this week is that my disability hearing is on Wednesday. I am so nervous. Not sleeping well. My lawyer said this judge is really nice but I am having nightmares of someone worse than Judge Judy or…… I don’t even know a judge this bad….. yelling and accusing me of not really being sick. Even throwing the gavel at me. Lol Anyway, so now I am depressed, well I have been that for a while now, but anxious and paralyzed. Like I can’t do ANYTHING productive. Do you know what I mean? Have you ever felt that way? We need groceries. I need to take a dress back to Ross… yes, Ross! It is a sad day when I don’t wanna go to Ross! You know…. just.. STUFF!! Oh! And yesterday was my birthday. 🎂 I actually had a great day. Anyway….I am going to go stare at my to-do list some more. Wish me luck!
I wore my slippers to the Doctor. Yep, I did it. The receptionist commented. The nurse looked at me funny but knew better. The Dr laughed. They know me so well. I have been at this office 20 years. It was a rough morning. They are lucky I showered and put on clothes… but the shoes….. nope. Don’t need them. Too tight. Or too rough. That one is scratchy. Those are hard. Slippers… just right. 😋
Have you ever been really sick? So sick you cannot get dressed but you have to go to the Doctor to get medicine to get better? Maybe the flu? Or Pneumonia? Well, I had neither of those. It was just a typical Wednesday for me. I have Fibromyalgia. That means I am always in pain. Maybe my hips hurt, or my back, or I just kind of ache all over. Or I can have excruciating pain. I never know what to expect and it can change with no warning. There is rarely ever rhyme or reason to it. I do know to expect a lot of pain after any kind of activity. I have to be careful not to overdo it. My good days hover near a 3-4 on your pain scale. Yesterday, I was at a 6-7 by the time I reached the Dr.
With Fibromyalgia, you may sometimes experience very sensitive skin. Even the light touch of a feather can cause pain. You may feel like your nerves are raw all over your body. Rough clothes or bedding are torture. I was experiencing both of these, plus my feet were a bit swollen. Hence the slippers.
Another very debilitating symptom of fibromyalgia is the fatigue. I have a limited amount of energy these days and it is way less than I had before getting sick. I had showered for the appointment. That, in itself, is the same as a 3-mile hike used to be, as far as the energy it uses for me. So by the time I was ready to go I was already exhausted and needed a nap. So…pain, raw nerves, sensitive skin, exhaustion….what am I forgetting?
Hmmm… oh yeah…. depression and anxiety. I was anxious about the appointment. I was happy to be getting out of the house and seeing people. However, instead of going to get a wonder drug which would have me feeling better in a few days as you do when you have the flu, I was probably going to be taken off a medicine that may or may not be helping with my pain. We believe it is contributing to my weight gain and severe memory and cognitive issues. I am going to slowly lower my dose and see if my pain worsens. Not an easy task since out of the last 7 weeks I have had roughly 5.5 weeks of severe pain. So I was depressed to be facing what may very well be a lot of pain in the near future.
My wonderful Dr (no, he really is) also wants me to do a repeat MRI of my brain (fun), see my neurologist asap (more fun), and required at least 3 pints of blood (super fun). He did gift me with a lovely parting gift of prescriptions for a shower chair and grab bars because I have been falling so much. This was the most fun I have had all week. Seriously folks. I really need/want that shower chair.
So…what is the moral of the story? I don’t know… Lol. I guess I would like everyone to know that living with a chronic illness like Fibromyalgia is harder than you can imagine. Those of us with a chronic illness call ourselves Warriors for a reason. I listed several of the bigger symptoms above but there are hundreds of symptoms and other conditions that go with chronic illnesses. So say a prayer for us please and next time you see someone out in their slippers or pajamas… stop and consider that they may not be lazy or whatever. Maybe their shoes hurt this morning…….
Hey you guys!!! (Total Goonies flashback there, LOL) We have our first guest poster. Lisa Gingold Cairo posted the following in the Facebook group “Living with Fibromyalgia & Chronic illness.” I thought it was very good and most of the “facts” reflect my own feelings, and, so, I asked Lisa if I could share it and she agreed. Thank you Lisa!!
I believe we all go through this process of dealing with a chronic illness in different ways. Many of us have felt like this at one point or another, I imagine, and other times we wouldn’t agree with it at all. I promised to be real with you guys though so I wanted to post this so people can see what fibromyalgia is from the inside, at least from Lisa’s perspective. I am in no way claiming these to be actual facts, but, rather, the facts according to Lisa. What do you all think? Have you felt like this at some point or feel like it now? Is there some way you would suggest to help? Please remember to keep comments loving, kind, and supportive.
The Real Fibromyalgia facts:
By: Lisa Gingold Cairo
1 No one can agree where it starts, so there obviously is NO CURE
2 The pain is not invisible, it is written all over our faces and in our attitudes.
3 It causes major depression anxiety and suicidal thoughts. Nobody Wants to live like this with no end in sight.
4 Eating right and exercising is NOT a cure, I know for a fact!
5 We do care that we are destroying our families and the people who care about us and we don’t have the energy to care about the rest,even though we want to
6 It does take almost an hour to wiggle around in bed to get rid of some of the pain so we can get out of the bed and we don’t know why either
7 Our Doctors Really have know idea and the honest ones will admit it.
8 We miss the people we were, watching ourselves fade away and not knowing this new body and all the demons it continually presents.
9 Fibro fog is one of the scariest things ever. If you don’t have any idea what it is, it is on and off Alzheimer’;s, and I am NOT kidding.
10 Socializing to anti social in only a few short years, and not on purpose, you just need things around you to go slow with as little stress as possible. Really good luck with that!