Fibro Awareness Q&A

Hey F4 Tribe!!!! May 12th was Fibromyalgia Awareness Day!!! It was also Mother’s Day! I have waited to post because I didn’t want to mix the days plus I wanted to just celebrate her day without anything else. I have seen a lot of post on Instagram where people are posting pictures comparing a “fibro day” and a “typical face the world day”. I realized I don’t have any of those. I don’t capture those days because for me they are UGALY!! Yes, I meant to spell it that way.  While thinking about what else I could do I decided to do a question and answer post. I ask my social media profiles if they had any questions they wanted answered regarding Fibromyalgia. I should have restricted it to only Fibro and not my Fibro because some of the questions were down right rude. I’ll answer a few of them.  So here goes……

  1. How long have you had Fibro? First sign of pain 2/10/17
  2. Who is your doctor? I am now seeing Dr. Chen
  3. What gives you relief? Rest, heating pad, pain reliever and muscle relaxers (mixed)
  4. Did you go to Dr. Dick? Yes I was a patient of his. I had NO issues with him.
  5. Why do you need attention? There are several other things I could do to get attention without being in pain. I blog about it because there are others that are going through this too.
  6. How do you still teach Zumba if you’re hurting? I can push through almost anything. I have a very high pain tolerance level BUT I will cancel if need be. I have also learned to not do high impact the entire class and to listen to my body.
  7. Has Fibro affected your life? I posted about this earlier. I never would have imagined all of the different areas that having Fibro would have
  8. Does weather affect your pain? Cold weather an d rain make me pretty miserable
  9. Have you had hair loss? Yes
  10. How did you know that you had Fibro? This was my very first post. Please go back and read it for a more thorough answer. Short version: I didn’t know. I had pain, muscle spasms that lasted 45+ min. They did all kinds of testing to rule out other diseases. They settled on FIBRO. At first I was apprehensive because I felt like it was an “I don t know what’s wrong with you so I’m going to just say you have Fibro. I had nerve testing done an various other test.
  11. Cold hands and feet? YES!!! It’s very annoying. Sometimes I can be working out and dripping in sweat and my fingertips will be white and freezing or my hands will be glowing pink.
  12. Do you get tired easily? Yes! Sometimes walking to the kitchen from my room is difficult and I have to sit and rest.
  13. What keeps you going? People depend on me every day. I am one of those people. I can’t stop because someone else will suffer or my dreams will. That is not an option!
  14. Does barometric pressure bother you? Yes, Please see my last post “Baro Who”. The rain typically zaps my energy and increases my pain
  15. What are your symptoms? Pain all over and in various places, blurry vision, muscle fatigue, muscle cramps, exhaustion, sweat at random times, brittle nails, dry hair, random fevers, skin sensitive to touch, brain fog
  16. What does it feel like? Like I just ran a thousand miles and i’m dehydrated and exhausted.
  17. Do you have children? Did it make it worse during pregnancy? I do not have children yet. I pray not!! I have heard stories of it getting better during pregnancy.
  18. Does it make you feel like you’re letting your family down? I do sometimes feel like this. I use to feel bad all the time but I am working on allowing family and friends in and let them know what’s going on.
  19. Do you wear special shoes? Um no. lol. Sometimes I wear tennis shoes to keep my feet warm because they ache when they are cold. I do wear leggings a lot because pants with seams hurt my skin sometimes.
  20. Does it ever make your eyes go cross? Cross? No! Blurry, foggy and black sometimes though
  21. Have you tried weed or CBD oil? If so did it help? I did and yes it does! Probably the last time I was pain free!! If they legalize it I won’t be in pain anymore!!!
  22. Have you tired holistic treatment? I have. As well as a cleanse to detox my blood. It was hard but I think if I had stayed on it I would have seen more results.
  23. I think it’s fake. This is a REAL statement not a question
  24. How do you cope with stress? Does stressing make your pain worse? Stress makes it all worse!! I PRAY, read inspirational messages, try and keep a positive mindset and stay away from people who disturb my peace and bring back negative thoughts or feelings
  25. Do you have lumps on your hands or feet or any joints? No sometimes they get hot or swell
  26. When you got the shots did they help? YES!!!!!!! If you can stand to get them then they are worth it. I did learn to relax and take it easy all day on the day I get the shot. It definitely helped!!
  27. What helps your pain? Sleep, ibuprofen and muscle relaxers. I take way too much a day but It keeps the pain at bay without being admitted to the hospital
  28. Do you have skin problems? Random outbreaks and sensitivity but nothing major. I have had sensitive skin all of my life
  29. Are you in pain every day? Yes! Ev-ery-sin-gle day! Some days are far more bearable than others
  30. What is the thing you feel like you lost or miss most? Ok so I will try not to get all “holy” BUT I am going to say that I feel like I didn’t lose because I feel everything happens for a reason and I God is going to restore whatever I lost. Now, with that being said obviously there are things I miss doing or feeling like: running on the treadmill, having energy all day, not being in pain or having to think about what I wear, losing weight when I am trying. But I think the thing
    I miss the most is trusting my body! I don’t know where the pain is going to come from or when it will hit. I have to now prepare for leg pain (crutches in my trunk) pain reliever (constantly in my purse, work bag and gym bag) eyes drops and heating pad on hand.
  31. Do you try rubs or any ointment over the counter? I try various muscle relaxers and OTC pain patches
  32. Do you have anxiety? Is it related to Fibro? Yes and Yes. Although I realize it is more when the pain is high and my emotional threshold is low
  33. How do you feel? tired
  34. Do you ever just want to not get out of the bed? Constantly lol. But most of the time I feel worse lying down.
  35. Why do you say “I’m Ok” knowing you aren’t? Well, I feel it’s easier to just say that and let people go on vs telling them and they have to fee l bad for me. Talking about it doesn’t help.
  36. How has it affected your emotions? I will say that I am less empathetic to people who complain about the slightest thing. I am working on it though.
  37. Did you have to stop working? No, I am still working full time and teaching Zumba.

Whew!!!!! That was a lot. Thank you guys for responding to my post. I truly hope that you have gained some type of insight. I feel so exposed lol! Below are a few memes that represent what I or others may feel at times.

I will do another post like this maybe at the end of summer! Thank you guys again for following me, standing with me in prayer and sending kind messages I truly appreciate it!

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Baro Who?

Hello my F4 Tribe!!!

My my has it been a while since I have blogged!!! 2 months!!!!I will attempt to catch you up on life, well what’s been going on in my life. I kind of wish this was a dialogue because I would love to know what you all have been doing. Soooo…. feel free to leave me a quick synopsis of what’s going on under the comments section at the bottom.

Ok so this will be  two part post because I really want to update you BUT  I also want to talk to you about today’s topic; which is……………….. Barometric pressure!!! I absolutely hate it but I am excited to talk about it.

So what is this barometric pressure?

Barometric pressure is atmospheric pressure. (definition from google) I know I know, so official.

How does it affect humans? Well let me tell you what I have been told and experienced.

When asked the question “How does barometric pressure effect you” people with various illnesses said:

  • “I.feel.like.crap”
  • “my head feels like it’s going to pop off”
  • “my back hurts, my shoulders hurt and so do my feet”
  • “I can move”
  • “well, I’ve been in bed all day”
  • “doesn’t bother me much”
  • “my skin hurts on my hands and my legs”

So as I am typing my fingers are beginning to ache and my fingertips are burning as if I have touched something hot. How ironic! And this is why I am making this post. This will be a one part post now. Gotta role with the Fibro punches! So typically hours, sometimes a day before the rain my body begins to hurt. Since my accident I have had no days without pain. That is technically called a “Fibro Flare”. So essentially the traumatic experience or impact of the wreck sent my body into a  flare. And now is raining. I woke up this morning with elevated neck pain, elevated back pain, aching in my limbs, my face (cheek bones and jaw bones) shoulder pain and now my fingers are aching. The ache is similar to a cold, dull yet throbbing pain deep inside the bone. Flares can often be caused by: weather, physical or mental exhaustion or mental/emotional stress. The Fibromyalgia Support Group on Facebook that I speak of sometimes has countless examples of traumatic events that cause people to flares. For example: divorce, cheating spouse, illness of a child or death of friend of family member, car accidents, physical accidents, the common cold, strep  and other illnesses. There is so much that can trigger a flare. Each person is different and each Fibro case is different. Mine started off with extreme muscle cramps that lasted 45 min on average. The symptoms graduated to me not being able to walk sometimes and panic attacks. Now I just have severe pain all over my body. I rarely have pain where I can’t at least walk with a limp (lean with rock with it, haha) or push through it. I may be covered in pain patches BUT I AM MAKING IT!

Other symptoms like headaches, surgery scar tissue or plates, or increased maladaptive behaviors can be caused by barometric pressure change.

Well guys I am going to go rest and my hands have had enough of typing! I have Zumba tonight. YES I STILL TEACH! Now you knew better than to think that. Love you all!!

General Things I’m praying for:

  1. A baby that accidentally shot himself with a nail gun I think (some type of tool). He’s fighting for his life
  2. The family of the 15 year old who killed himself
  3. My friend who has not had more than 3 hours of sleep a night for the past 4-5 months
  4. 2 of my church family members who have broken bones
  5. All who have chronic or mental illnesses who suffer in silence

Songs that are keeping me going:

(ok so….pretty much the entire Songs for the Storm, Vol.1)

And of course my favorite because HE IS tending to me. He sees me. He is keeping me. I am His sheep and He is my Shepherd. And He will come see about me! HE will heal me! Ok let me stop because I when I think about how He is going to heal my bod y from this pain and this illness they say they don’t have a cure from I GET EXCITED and I CAN’T HELP BUT PRAISE HIM!!! WHEWWWWWW! He is So Good!

Have an amazing week Tribe and don’t forget to let me know how you are. Have you had or do you know anyone who experiences symptoms from barometric pressure? If so let me know!!

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730 Days

Today 2/10 makes 2 years since the initial pain. 2 years, 730 days of uncertain and unwarranted pain.

I remember talking to my nephew while standing in the self-checkout line at Walmart when my calf muscles started burning. I thought I needed new shoes. I remember taking my shoes off to try and ease the pain. It didn’t work. By the time we reached our destination the majority of my body had locked up leaving me unable to move. I remember being terrified because this was a pain I had never felt before.

Fast forward 730 days and I’m in bed with tears in my eyes from more pain I’ve not felt before. I’ve been up since 3am. I initially thought it was a crick in my neck from sleeping wrong. The right side of my neck/shoulder has been tight for a few days. At 2 am I felt myself trying to stretch between my shoulder blades and readjust. At 3am I woke up screaming from a pulling burning pain that felt like it was gripping my flesh and nerves and pulling them away from my bones. The pain is sitting in the middle of my shoulders and radiating up my neck to the back of my head. There’s so much pressure I can barely see. It’s also across both shoulders.

I am also nursing an injured knee. So my right knee hurts and my left leg and Achilles stays tight. Not to mention my rib cage, lower back and hips 🤷🏾‍♀️😂. I was using crutches but that made my underarms hurt and nope!!! I need something to feel ok lol. My walk is ugly and slow BUT I’m walking.

I cut Pandora on to help me get moving. I needed some praise music. I needed to be in His presence. I could feel the enemy starting to remind me of failures and negative thoughts “it’s been 2 years. He hasn’t healed you. You’re going to be in pain forever”. I quickly cut the music up. Y’all the playlist for the first few songs was:

    This is a move https://youtu.be/8I7nJSKCgo0
    Blessed https://youtu.be/5TSEW94w9kY

As I was crossing the bridge I could hear “just drive on off. It’s gotta be better than feeling like this”. I started screaming His name! I needed Him. “Keep me God” “Keep my mind, heal my body, Come see about me God”. I screamed all the way to the gas station. Then on the radio I heard:

    He’ll Take the Pain Away https://youtu.be/Ud5X7NzwV_c
  • I got to church and the sang:
  • 1. So Glad I Made it https://youtu.be/mEv6KdGmESY
  • This song says “if you see me crying, it’s just a sign that I’m still alive. In spite of the storm and rain, heartache and pain… He’s building my testimony”. Annnnnd cue the ugly cry, swollen lips and bloodshot eyes. The devil is a lie! I made it through. I will make it through. He will heal me and it WONT always be like this!
  • Today has been a hard day. I have been as war internally and physically all day. I’m battling with the enemy over my mind and my body. It’s frustrating because I want to be healed. I’ve fasted, prayed, sowed seeds, cried, believed and trusted, been prayed over and changed my life and I have NEW SYMPTOMS! Why? Why God! Why is my healing not here? Where are you? He is here. This is hard and sometimes it feels like it may take me out BUT it won’t! I almost threw in the towel BUT God was right there wiping my face with it. He was holding on to he steering wheel when I drove. He was my vision when I couldn’t see. He is holding me together when I’m falling apart and He’s pushing me when I can’t take another step.
  • Past symptoms:
    • Nausea
      Blurred/ no vision
      Pain in fingers, hands, toes, feet
      Burning pain under feet
      Burning skin
      Locked jaw
      Easily exhausted
      Heavy random sweat
      Skin changes
      Broken and weakened fingernails
      Fatigued muscles
      Achy cold bones
      Swelling
      IBS
      Back pain
      Facial pain
      Depression
      Weight gain
      Foggy brain
      All day stiffness
      Bursitis In hips and butt
      Nerve damage
  • Now add in the trigger points and I think that’s it. This disease has certainly covered more aspects of my life than I ever imagined it would.
  • Past treatments (because they worked or didn’t work for me doesn’t mean anything for anyone else)
    • Gabapentin: didn’t work
      Lyrica: didn’t work
      Tramadol: doesn’t work
      Cymbalta: didn’t work
      Tumeric: doesn’t work
      Celebrex: works but didn’t like side effects
      Omega Red 4- in- 1: maybe
      Vitamin D: undecided
      Magnesium: undecided

    I’m sure there are more but I can’t remember.

  • In 2 years I have been lower than I ever imagined. I’ve also learned more about me than I ever thought. I’ve learned to ask questions, don’t take “no” or “I don’t know” for an answer when it comes to my health. I’ve learned that it’s ok to not be ok. I’ve learned to lean on others. I have an absolutely amazing support system. They help hold me up. We depend on each other!! I’ve learned that my body depends on me to eat better and it DOES NOT like meds. I have learned to depend on God and to find a positive in EVERY SINGLE SITUATION.
  • “Despite calamity He still has a plan for me and it’s working for my good”

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    Shoot Me Up!

    Hello F4 Tribe!!!

    How are you all? I feel like you should updated on your lives too.

    Let’s just dive right in!

    In the last post I was having sever nausea, my gums ached and my teeth felt like they were coming out. Well all of these problems are still here 🤷🏾‍♀️ but I did go to the doctor!

    Monday:

    Even though I was not feeling my best I taught my fitness class tonight….bad idea. I was ok, well I was making it, until the next to the last song. I hit a squat and I felt a rip that seemed to go across my bum. Jesus!!! I pushed through class and made it home. While in bed, not sleeping, I realized my butt has not hurt me since the last shot. At that moment I knew I was getting another injection! My thoughts were

    I have no time to be down. I already can’t eat. My body keeps having random shake downs where I feel like it’s trying to shut down. AND one of my besties is getting engaged Wednesday in Birmingham….. I have to be there. And I mean just really I want some popcorn with cheese or some chicken or anything!!! Yep I’m calling the doctor

    Tuesday:

    I limped into work and made the call. Surprisingly they had an opening @2:20 that afternoon! Now do you remember me talking about how incredibly long it takes at this dr???? Hours on top of hours!!! So instead of me taking off I just went when I got off @3:40. I still waited til 6 to be seen. Yes that’s 4hrs from my appt time!

    Let’s get down to the nitty gritty!

    I told the dr what my symptoms were…again. Why do we have to tell the person that makes the appointments, the vitals nurse, the nurse that comes in to say “he’ll be right with you” and THEN the doctor! Geez! Seems like there should be a better system or at least sticky notes!!! Anyway I digress…

    1. Face feels like it’s caving in at random times. Both sides. Above and below eyes.

    2. All of my teeth feel like they may come out. Jaw is locking up.

    3. Severe burning/ripping pain across my butt.

    4. Bursas on hips are back

    5. Cyst on wrist that’s keeping me from making a fist

    6. Stomach issues. Feeling full/ bloated all the time. Very gassy. Not being able to eat or drink a full protein shake.

    7. Tramadol has become aversive. It last way longer than 8hours although the pain comes back around hour 3. Then I’m left feeling yuck until it wears off.

    8. I’ve slept 3 hours and 46 minutes in 3 days

    So after discussing each in depth here is what we decided:

    1. He had me take a deep breath in through my nose. It sounded clear to me. He said it’s allergies 🤷🏾‍♀️ I don’t agree!

    2. I can do an all liquid diet for 10 days or get cortisone injections….. IN MY FACE!!

    3/4. Bursitis is back. Cortisone shots or rest for 2 weeks

    5. Wear a brace… No! I’m not doing that

    6. He thinks it’s Irritable Bowel Syndrome. And I have irritated my upper intestines but I feel like it irritated me! Take stool softener and it should go away….. we shall see

    7. He prescribed what’s about the only drug left without me being admitted to the hospital… Percocet. I’m not taking that!!

    8. He prescribed another sleep med… probably not taking that either!

    I did remind him that I have come off of everything except naproxen when the pain is unbearable. It’s not working but hey whatever! Stay focused!! I also let him know I would take the prescriptions but was 80% sure I would not be taking them. I don’t want that crap in my body! He said he understood and gave me the scripts. Who cares about killing trees 🌲?

    Here’s the educational slash gross part. If you are squeamish this is where you stop reading!!! 🛑 🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑🛑

    So I received 4 cortisone shots varying in dosage and needle size. Two in my TMJ and two in the bursas close to my sciatic nerve.

    What is Cortisone:

    A type of medication that treats a wide variety of conditions, mainly by suppressing inflammation. Shots of cortisone are used to treat a range of conditions, including bursitis, gout, acne cysts and nodules, tendonitis, and different types of arthritis.

    What is TMJ:

    Temporomandibular joint (TMJ) syndrome is a disorder of the jaw muscles and nerves caused by injury or inflammation to the temporomandibular joint. The temporomandibular joint is the connection between the jawbone and the skull. The injured or inflamed temporomandibular joint leads to pain with chewing, clicking, crackling, and popping of the jaw; swelling on the sides of the face; nerve inflammation; headaches, including migraines; tooth grinding (bruxism); Eustachian tube dysfunction; and sometimes dislocation of the temporomandibular joint. Temporomandibular joint syndrome is also known as temporomandibular joint disorder.

    https://youtu.be/cBwGjV0gECE

    The sciatic nerve is the longest nerve in your body. … The most distinctive sign of sciatica is pain that radiates from your lower back into the back or side or your legs. It can range from a mild ache to sharp, severe pain. You can also get numbness, tingling, and weakness in your leg or foot.

    https://youtu.be/biSCYrFXqxk

    Recovery:

    Jaw: liquid diet for 10 days or soft food

    Butt: relax for 4-5 days

    Both will be sore and still hurt until possibly the weekend.

    Wednesday:

    I took off of work today so I can relax. I’ve been in bed all day. Tonight I am going to Birmingham for a close friends surprise engagement. I’m a little nervous about the drive because I’m not feeling well.

    The engagement was amazing! Seeing her face was priceless and so worth the drive. I’m at home in the bed. I have to return to work tomorrow.

    Thursday:

    Today has been the longest roughest day I have had. I am tired and my body is too. I was supposed to take pictures for a flyer but it rained and that was all! I cancelled my fitness class tonight too. Even though my mind is ready my body just isn’t up for it. It’s 8pm and I’m in the bed. Thank God I made it through the day.

    Friday:

    It’s Friday and today I can open my mouth a little when I talk. Doesn’t look weird anymore!!! I’m sitting on a heating pad all day at work. It’s cold in my building and it’s rainy outside….. my body feels like it’s going to explode! And I’m nauseated. So as of right now I feel exactly like I did before I went to the doctor. But I am hopeful that this will pass. Today I am going to try and get my pictures done for the flyer. That is all I have planned.

    This weekend:

    All should be relaxing. I pray nothing comes up.

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