The face of fibromyalgia

All posts tagged The face of fibromyalgia

Really Bad Fibro Day

Published August 11, 2020 by aspooniesmakeupbag
Photo by Karolina Grabowska on Pexels.com

Hey doll hey. How’s your day/night going? Great I hope. I’m having a hard time with my Fibromyalgia the past few days.

My wrists and ankles are swollen and sore. My hips feel like the bones are grinding together. My muscles feel like I have been running sprints all day.

I have energy but because of the amount of pain I’m in (I feel like my pain level is around 8) I can’t do anything today.

Thank goodness I cooked extra last night so that all I have to do is reheat the left overs.

For dinner yesterday I made Pollo Guisado (Puerto Rican Chicken Stew) and homemade French Yeast Rolls.

Hubby and my mother truly loved dinner last night and that made me feel happy. I rested most of yesterday just so that I had enough energy to make the rolls. I think the next time I make these I’ll make a double batch and freeze a pan of them for future meals.

I’m not really sure what brought on this newest fibro flair, I only know that I am so much pain that not even sleep seems to give me relief. I woke about every 1 to 1/2 last night due to the pain.

The only thing I can think of is that since it’s our rainy season the barometric pressure is just wreaking havoc on my immune system.

Well… I just wanted to touch base with you and let you know that I’m still here… just having some truly horrible pain days …. I should be back into the swing of things soon … I just have to wait this out until it passes.

I hope you enjoy the rest of your day/night and that you are in good spirits and health.

Remember … Save a spoon for a bit of lipstick.

XOXO, Nita

No Face of the Day Today: Fibromyalgia Talk

Published July 23, 2020 by aspooniesmakeupbag
Photo by cottonbro on Pexels.com

Hey doll hey! How’s your day/night going? Great I hope. Today I am not doing so well. I am in a world of pain, did not sleep well at all last night because I was up with pain most of the night, and I have absolutely zero energy.

Sometimes my walk with fibromyalgia leaves me feeling defeated. This is how I feel today. Very much like I’ll never be normal again.

All of my muscles are killing me …. it feels like I had a high impact leg and arm day at the gym on the same day and then got hit by a bus coming out of the gym.

My joints in my hands and the knees are so sore and making it very unable to do simple things such as hold my coffee cup and brush my teeth, not to mention walking hurt like a 1,000 knives being stabbed into them.

The fatigue I am feeling isn’t like a normal, didn’t get enough rest, fatigue. It’s like having a 103 fever, sick with mono, and haven’t slept in 3 days fatigue.

It’s days like this that leave me feeling angry at the world and angry at the traumas of my past that cause my brain to snap and create this damn illness.

I know I’ll never be rid of this illness (not unless they are able to come up with #1 a way to detect fibromyalgia, #2 a cure for fibromyalgia, and #3 a real defined reason that fibromyalgia suffers have contracted it) but it would be nice to just have 1 day …. just ONE that would be pain free (not low pain like most of my days are … I’m never without pain …. everyday (24 hours….1140 minutes …. 86,400 seconds of pain EVERYDAY)…. It’s just some days the pain intensity is much lower and I’m able to do things.

On day’s like today the pain is so intense that I really should check into hospital and get a pain infusion and Myers Cocktail (it’s a vitamin therapy treatment which enhances immune system, reduces fatigue, helps with seasonal allergies, reduces symptoms of fibromyalgia and asthma and contains magnesium chloride, calcium gluconate, thiamine, vitamin B6, vitamin B12, calcium pantothenate, vitamin B complex, vitamin C, and dilute hydro- chloric acid.) but I don’t because let’s face it the treatments are very fleeting and then I’m left with the side effects of cotton mouth and a nasty little head ache… not to mention an astronomical hospital bill.

So all I can do is keep bundled up with a warm cozy blanket, try not to move too much, and remind myself to breath until the pain levels come down some. For the fatigue all I can do is fight the need for sleep (since sleeping in the day only leads to more pain and the less likelihood of being able to fall asleep tonight) and limit my activities to the bare necessities: a simple shower… no washing of or fixing up my hair… no makeup for me… brush my teeth… fix my mother and myself something for breakfast…. probably skipping lunch to store up what little energy I can for to fix dinner…. and since I’m in pain it will be a laying down day for me.

It’s very hard to deal with on days like today but the part that crushes me the most is the isolation I feel on days like today, not that I’m very social these days because of Covid -19 (since I have an auto-immune illness I have to stay away from the world to keep myself healthy), but on days like today I realize just how much I have to do that I can’t do because I’m in a horrible flare.

Photo by Engin Akyurt on Pexels.com

I always try to remind my fellow spoonies to save a bit of energy for themselves … to be able to do something for themselves everyday to just give them a bit of spirit boost … it’s so important not to loose ourselves in the service of our loved ones because of these auto-immune diseases…. but we also have to know when to surrender to the illness so as to not cause our illnesses to progress further.

It’s just that on days like today it feels like I’ve thrown in the towel, like I’ve rolled over and given up, like I’ve laid down and surrendered for good.

I pride myself on always being able to do for myself… but on days like today there is NO way I can…. and unfortunately, ever since hubby’s hours changed, there is no one that I can rely on. I feel defeated today.

Well dolls. I’m sorry to write such a Debbie Downer post… I’m just so frustrated and so over whelmed that there is just no way for me to put a happy spin on today.

I’m grateful for my speech to text software because at least I’m able to still blog for the day … but I have this amazing makeup look I really wanted to do today and new products that arrived today that I really want to dive into … and I have to table table it until this flare ends.

Well, that’s all for now dolls … hopefully I’ll be better by tomorrow, in the meantime I hope and pray that you have a great rest of your day/night and that you are in good spirits and health.

Remember dolls … it’s OK to not have any spoons for the day … but on the days where you have some spoons …. remember to save one for a bit of lipstick.

XOXO, Nita

The Many Faces of Fibromyalgia

Published May 27, 2020 by aspooniesmakeupbag

Hey doll hey. How’s your day/night going? Great I hope.

I’m not able to do a Face of the Day post today. I awoke feeling extremely exhausted and in a world of pain.

I’ve decided to have a bed rest day so that I can curb this Fibro Flare.

A flare is when someone with Fibromyalgia has their symptoms increase in intensity and also has more symptoms all at 1 time. These increase in symptoms and intensity can last anywhere from a few day to even a few months. I once had a flair that lasted well over a year.

Because of the year long flare when I have a new flare I take care to make sure I don’t end up with a long term flare, many times this entails bed rest, extra hydration (I’ll typically increase my water in take by 1/2), I make sure to take every pill in my Fibro regimen, and (because I typically get nauseous during a flare) I adjust my food intake to bland soft foods that wont aggravate my tummy.

So today I attempted to wake up around 7:45 Am but I was too weak to get out of bed so I went back to sleep for an hour. When I got up the at the next alarm I was able to get out of bed, however I felt exhausted and kept nodding off whilst making my coffee so I laid back down and decided to just wait this flare out and I ended up nodding back off, with Fibro flares I tend to sleep extended on and off the whole day …. as is the case today.

So here is the face of a fibro warrior ….

Let’s talk about the extreme exhaustion (called FIbro Fatigue) is not the same as plainly being sleepy… it’s not having enough energy to do something as simple as take a shower or brush your hair.

More times than not the feeling of exhaustion is that of the exhaustion one suffers with worst flu they’ve ever had …. this is how someone with Fibro feels and while it’s important for us spoonies not to over do ourselves.

We often have to cherry pick things to do for the day so as to have enough energy to accomplish everything that is needed and knowing that, more often then not, tasks will have to be left at the way side.

Imagine if you will, getting up in the morning to take a shower and having to choose between giving your hair a much needed shampoo and shaving your legs (which you hadn’t been able to do is a few weeks do to being in extreme pain and exhaustion)…. knowing full well that either activity is going to cause your body to go through a huge energy depletion.

You see … something as simple as raising your hands above your head (say like when you wash your hair) or bending over of any length of time (say like when you shave your legs or sort the laundry) will cause someone with Fibromyalgia exhaustion.

I can’t tell you how many times I have had to lay down in bed for a little while as I recover from just choosing to wash my hair in the midst of my shower. See I never choose to shave my legs while showering because that option always leave me depleted so quickly that I almost always have to call for my hubby to help finish the task of shaving…. I’ve actually adapted and on the days I want to choose to shave rather than wash my hair I actually sit on the bedroom floor with a dish pan full of warm water, my shaving cream, a razor, and a towel and then I shave whilst sitting on the bedroom floor … see this reduces the amount of time I’m spent bending over which means in turn it is less of an energy drain … there still have been times when I needed hubby’s help to finish shaving, but I typically can get through most of the shaving on my own.

So this type of exhaustion is what I am feeling today … an extreme case of the flu with no sore throat or fever but complete with body pain. (bare in mind that Fibro spoonies do get sore throats out of the blue … it’s just one of those things that happen as our immune system systematically attacks our body).

I’m in currently using my Cortana from my computer to dictate this blog post. This helps me save some of my energy and allows me to stay laying down as I recuperate. It’s not full proof, I do have to go in and correct some of the spelling and punctuation and of course I do have to manually enter my pictures. But at least I have away to still be able to blog when I want to.

Aw yes … the dreaded Fibro headaches.

Now I’m a migraine sufferer but the migraines I get as a direct cause of my Fibromyalgia are vastly different.

IT feels like I have a white hot poker in the back of my eyes, and this type of migraine isn’t alleviated with my current migraine medication.

The Fibromyalgia headaches that I get are so bad that I often find myself vomiting uncontrollably.

With no alleviation I just have to wait it out and hope that this migraine passes quickly.

Wide Spread Pain …. the most hurtful of all Fibro symptoms

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So now let’s talk wide spread pain. The most common symptoms a fibromyalgia is widespread pain of the muscles and nerve endings.

A typical pain day is just a dull pain around the body that never goes away. Pain for fibromyalgia is constant and consistent I never lets up. The only change is the pain level. There are days where the pain level is what we call baseline ( this is the pain intensity that our body typically field on a daily basis). Basically a baseline pain day is the normal amount of pain someone with fibromyalgia feels on average. For instance my baseline pain level is around a 5. This means as long as my pain level is at or below a level 5 I am able to function normally, or as close to normal as someone with fibromyalgia can get. Anything higher then a level 5 pain start to make daily activity and basic human daily life different for me.

Today’s a level 9 pain day …. Am thinking may go to hospital to get an IV infusion to help with the pain and fatique.

Our widespread pain isn’t a basic pain. Fibromyalgia sufferers tend to get clusters of pain in the chest, neck, hip, knees, and elbows. We can also get a group of cluster pain. For example, today my pain is in my hips, my arms, and the muscles of my thighs. On top of that I also have pain associated with my rheumatoid arthritis.

Today my pain level is intense and I can’t get comfortable no matter how I lay or sit.

This is the reason I am unable to play with my makeup today. I feel bummed because makeup play is my own personal time to just dedicate some of my energy level to doing something that makes me happy.

Is a fibromyalgia suffer pain is constant an ever present, we are never without some type of pain we just get better at being able to deal with it.

Please understand that when I say we are able to deal with the pain that we feel on a daily basis it is not the same as someone without a chronic pain disability would feel. For someone with, let’s say, Fibromyalgia our pain levels are different than someone who does not have an autoimmune illness. We feel pain on a higher, more intense level than a non-sick person does.

I can’t tell you how often, When I tell someone I am having a high pain day, I get the response “Oh ya my lower back hurts pretty bad today too”. I can guarantee you that your back pain is nothing as painful as the pain I am in… I feel bad that you have pain, just stop diminishing the pain a spoonie is going through with this careless statement. We are in pain 24/7! We eat, sleep, and breath pain on the daily… It is ever present and never ending.

On a good pain day it feels like we’ve been punched in the arm or leg or back or hip repeatably and it feels like bruises are forming just below the skin’s surface.

On a bad day it feels like we’ve been dropped of the side of a very tall building and have hit every balcony along the way to the ground.

And these are just the muscle and joint pains we experience….

There are typically 7 types of pain a Fibromyalgia sufferer experiences …

The ones I just talked about at classified as hyperalgesia (an abnormally increased sensitivity to pain, which may be caused by damage to nociceptors or peripheral nerves and can cause hypersensitivity to stimulus).

Let’s talk Allodynia (the experience of pain from stimuli that isn’t normally painful). I currently am experiencing this type of pain.

Imagine, if you can, something as simple as the wind from a fan, brushing your hair, a tender kiss on the cheek, or just simply wearing clothing causing you intense pain. That is Allodynia.

I refer to it as razor skin because when I have an Allodynia episode 7 times out of 10 it’s sensory driven pain where my skin feels like I have the worst sun burn in history just bellow the surface of my skin. It hurts to have clothes against my skin, to have even the lightest of bed sheets against my skin, the feel of a pillow at the back of my head, I mean it even hurts to have the fan gently blowing over my skin.

Have you ever said something like “My hair hurts”? For someone experiencing Allodynia their hair actually does hurt. It’s tender to brush the hair, to try and put it up in a bun, to just simple have someone run their hands over the hair.

Another form of pain is closely familiar to Allodynia and that is Paresthesia (numbness or a burning feeling that occurs most often in the extremities, such as the hands, arms, legs, or feet, but that can happen elsewhere in the body as well).

This is the type of pain that often makes you super sensitive to climate changes … so for some examples … on a hot day I might feel cold instead but that feeling causes pain to the skin exposed to the temperature…. whilst showering the cold water might feel extremely hot and feel like it’s burning my skin…. I can’t tell you how often I have burned my hand on the stove because I just don’t feel it.

It is also the type of pain that leaves my arms and legs feeling like white hot pins and needles sticking out of my skin.

Then you have your garden variety muscle, joint, and abdominal pains associated with Fibromyalgia… and the aforementioned migraines.

Bare in mind that no 2 walks with Fibromyalgia are the same as are no 2 treatments.

There are also countless symptoms associated with Fibromyalgia (too many to list in 1 blog post).

The only thing that we all share in common is that we have a illness (a disorder if you will) that effects over 5 million adults in the US alone (not to mention our Juvenal counterparts and our sufferers outside the US) that has no cure and all we can do is manage the symptoms 1 at a time with medication, with self care, with a sort of hyper-vigilance that allows us to pay attention to what our bodies need.

Well that’s all for now dolls. Thanks for stopping by, I hope you enjoy the rest of your day/night and that you are in good spirits and health.

I hope to be back to playing in my makeup tomorrow… no promises though as I don’t know if I will be feeling better by then.

Remember spoonies … save a spoon for a bit of lipstick …. (this is a metaphorical lipstick of course … This lipstick represents 1 thing … 1 item… 1 something that you save some energy to do that makes you happy and puts you first and just helps you maintain some self care for YOURSELF first … today my lipstick is laying here writing this blog … even though typically my metaphorical lipstick is an actual lipstick because makeup makes me happy).

OK I’ve rambled enough … Take care dolls.

XOXO

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