Important information

Important information

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!!!

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The many faces of fibromyalgia

The many faces of fibromyalgia

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.

I wore my slippers to the Dr….

I wore my slippers to the Dr….

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…….