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((((hugs)))) and prayers, Lea. All this other stuff just adds to the load you are carrying. I'm sorry. It's horrible not being believed when you are suffering.

cx - you are the one with paresthesia -right? A lot of this is typical cfs/fm. They don't know why or how or what to do about it.

I've had it for 30+ years and you don't necessarily get worse. I'm better than was when I first got it. Right now I've had to take a bit of a break as it's flaring up but still not as bad as it was at the start.


Lea. I expect some of what you are going through is made worse by fm. When you mention having to rest after an outing. Yes!!! If you have fm you already had brain inflammation going into the treatment.

Anyway, just to say all the golden girls and especially you, Lea, are on my mind and in my heart even when I am not posting. (((((hugs))))) and some glitter!
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Thanks for the prayers Mayday 😁Nice to see you!

Cxmoody, who can better understand these afflictions better than those of us who are afflicted with the damn things, eh?

Just sitting around on my recliner today feeling lousy, basically. But not in bed anyway. Yahoo. 😊
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Prayers are being sent😌

my dad used to reach out to me a lot!!!

maybe I was too close to mom… I don’t hear her much..

she was talking to me when she was dying.. I went home for a bit watered the lemon tree she gave me years ago..
I answered her out loud.. ok mom, let me finish watering .. I’ll be right there.
my brother was texting me. My cell was in my car.. I got th her in 2 minutes..
the nurse was logging in the time of death as I walked in..

i know she left when she was “talking” to me…
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This here is EXACTLY how I feel. You put it in such better words than I ever could!
"The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!"

And, girl, I am praying for those dang steroids to give you a break.

You are treasured here. Thank you for letting us share this journey with you.
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Good Monday! Hope that the dizziness has diminished today and that your day will be better!
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Praying for a better day today for you Lealonnie, and that God will give you His peace and rest and that the dizziness you're feeling will go away once and for all.
Please Jesus, your precious servant Lealonnie has had enough. Please remove all of these negative side effects sooner than later. Thank you Jesus.
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Prayers to our Heavenly Father - please lift Lea in your comforting arms and take this dizziness away. This I pray in Jesus's name.
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(((((hugs)))) Lea - go with what makes sense to you.

"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4:16 

Father God, I pray for mercy and grace for Lea in her times of trial. Touch her and heal her, as only you can. I ask this is Jesus name.
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Lea,
Screaming and tears are healing, and so very understandable.
Do what you need to do to get through this amazingly difficult time.

Sending support your way Lea.
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((((Lea)))
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Lea,

You have had more than your share to contend with. You have to be completely drained from this ongoing crap.

Sending many hugs your way and extra prayers will be sent up to God asking for His mercy to grant you some much needed relief.

I wish I knew something that I could say that would comfort you but I know that there aren’t any words to make your situation any better.
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Thanks Geaton and NHWM. Today I'm in bed after being gobsmacked with the 5mg decrease in prednisone yesterday *which didn't hit hard till today* I'm horribly dizzy and having other side effects making it necessary to lie down flat 😏. Which makes me question WHY I'm not just doing the 10mg decrease and getting this chit show over with faster. I'm so sick of all this I could just scream.
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Lea, You’re so right. The only people who can truly understand how you are feeling are people who have been through this.

I won’t try to pretend that I know how you feel because I haven’t experienced any of what you are going through.

I do have empathy for you though and I hope that you will start to feel better very, very soon.

I also know that you are a no nonsense woman who wouldn’t be complaining if you weren’t struggling with this misophonia.

Anyone who truly knows you will not doubt your word, or think the situation is ridiculous or funny.

Sending a bazillion hugs your way!
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Hi LL! Still praying for the dizziness to be healed completely and for peace that transcends understanding. xoxo
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Before COVID DH and I would go to the movies regularly. I always felt they were a little too loud but could deal with it. Because of DHs hearing, we would pick action movies. This one was so loud when it came to the police chases and gun fights that I had to leave the theater. It was actually making me feel sick. I looked it up and overly loud noises can make you physically sick. I watch no TV till late in the afternoon. Do not like background noise when I am trying to think. My DH can't believe I have my TV turned down so low. I am very sensitive to sound. Love peace and quiet.
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Cx......I too was done after doing one thing per day for about a year or so before my cancer dx. I'd wait till 2 pm to get up the strength to drive to the store! I'm the later-in-the-day person, never the morning person. I attributed it (now) to sheer exhaustion from the cancer which I was unaware of. Now I'm not so sure, given other factors that could've been at play too. I do know that I had to go lay down in bed after we got home from estate sales......which is not that strenuous an activity! 😑 I'm like you with the support groups.....not sure I want to know too much info. The stage 4 melanoma group I have to read in SMALL blips bc it's ow too depressing. I need to stay focused on my journey only. Not on what may lie ahead. Same for a fm group, I'd think.

The misophonia thing people seem to find funny or stupid or ridiculous, not realizing the level of aggravation it causes us. "As if" we wouldn't turn the damn thing OFF if it was within our power to????? Oh yah baby, I just LOVE feeling outraged when hearing you chew, what FUN! 🙄 Its way more than a "pet peeve" when it triggers a physical reaction in ones body to hear certain sounds! So we can be laughed at or "driven crazy" by our loved ones till the cows come home but what I wish is FOR THEM to be saddled with this chit for ONE WEEKEND and we'll see who's annoyed or laughing or being driven crazy THEN!
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Golden, you said,
“Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc.”

This. Is. Me!

I’ve never seen it written out like that! I haven’t joined any groups for FM, cause I don’t even want to KNOW how things could end up.

I can do ONE thing a day, outside of the house, and I am done. Afternoon? Nope! I’m out. 🤦🏻‍♀️

Anyway, nice to read about someone who GETS it.

LL-my misophonia makes my family crazy. Too bad. It’s either “Close your mouth when you eat!” and “Use headphones for your tablet, if you already have the tv on.”, or this Mama will run screaming from the house! 🤪

I’m still praying for you, girl!
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@Barb........"Some people even find the sound of their own voice or their spouse’s voice intolerably loud".......uh, yeah. I often say I can't stand the sound of my own voice. And Chucks booming voice, fuggedaboutit 🙄. I'm sure this type of hypercusis is vestibular, to go along with the REST of the audio-vestibular nightmare that's been plaguing me. While I've had this misophonia thing going on since I was a teen, things have worsened lately w the onset of my vestibular reaction.

And I'm also not surprised to see there's no cure but "counseling" meaning it's the Suck It Up And Learn to Live With It Buttercup Program I've become familiar with lately. Ugh. Again, there seems to be more I Don't Know answers in the medical field these days than anything else, especially when it pertains to ME.

I'm off to take my lower dose prednisone now and pray for a milder reaction. And no need for my walker. It's a rainy day today which normally makes me even dizzier....but not today. So I'm calling for a GOOD DAY TODAY! 😁

Golden, part of my Return to Normal program is picking up a Swiffer...and a rag to clean a little. Telling my brain I'M NOT GONNA TAKE THIS CHIT. I'M GONNA LIVE MY LIFE NO MATTER WHAT MY BODY THROWS AT ME. Seems like when I fight is when I start to turn a corner. That's my prayer. A nebulizer is a machine you breathe into with a hose you put in your mouth. The meds go into a chamber, water in the tank, and a breathing treatment is administered thru the machine. An EXCELLENT way to get immediate relief from lung issues.

Send, ty for the song!
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Love that song Sendhelp!
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I speak the name of Jesus over you
In your hurting, in your sorrow
I will ask my God to move
I speak His name 'cause it's what He's asked me to do
In His promise, I will seek Him, Jesus
And pray to Him for you
I pray for your healing
That circumstances would change
I pray that the fear inside would flee in Jesus name
I pray that a breakthrough would happen today
I pray miracles over your life in Jesus name, in Jesus name
I speak the name of all authority
Declaring blessings, every promise
He is faithful to keep
I speak the name no grave could ever hold
He is greater, He is stronger
He's the God of possible
I pray for your healing

I pray miracles over your life in Jesus name
In Jesus name
In the mighty name of Jesus, all things are possible
I pray for your healing
I pray that you can receive it
In Jesus name.

Source: Musixmatch/Edit
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Thx Lea. I don't mind housework, but it would be nice to have some energy to do other things (and also have a cleaner house, hopefully)

I hear you about things left undone. Have you thought of a check list for them. I am really into lists. I am amazed with your health issues that you can even dust the dining room table!

Being more active helps. Good for you!!! I think you can retrain your brain in many ways. Retrain it, and calm it down!!!

Wow - adjusting to the dizziness must be a big challenge! But if anyone can do it, you can.

Thx re R. Don't know what he has for his bronchitis. I'll find out later. He's not good with that kind of stuff (describing it to me); It's working but he still is having coughing spells.

Barb - thx for that link. I know my issues are CFS/FM related but new information is always good. From it I found a You Tube video of soothing sounds that I like. Rain, thunder and a crackling fire!!! Brings back wonderful memories.

Have a good day, Lea - as good as you can. you are a survivor!!!

Prayers always and ongoing.

“There is a time for everything, and a season for every activity under the heavens …” Ecclesiastes 3:1

We may not like all the seasons in our lives, but God has a plan and a purpose in them.
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LL, please read this:

https://www.soundrelief.com/hyperacusis/
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Sending prayers 🙏
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Golden, you definitely earned a housekeeper! Even though they never do things to our satisfaction, it's done w/o our help and that's the important part for me. After they leave, I do an inspection to see what was missed, and take care of those issues myself. Today it was the dining room table ....the glass top and wood bottom was missed entirely even with 6 eyes at work. So my long handled Swiffer did the wood and my other 2 cloths did the glass. I have to be more active bc my hip is KILLING me lately and I'm not in any shape for replacement at this point. So more activity should help, I hope.

I don't envy you moving bc it's such a huge job. Once you're on the other side of it and settled in the condo, I'm sure you'll be happy and more relaxed in general. Don't overdo it.....so not worth the suffering. Does R have a nebulizer for his asthma and wheezing w the bronchitis? There was a time I had to neb 3x a night! Asthma can get out of hand very fast, so it's always good to have emergency supplies (Like a nebulizer) on hand if needed. I HATE asthma. I hope his bronchitis resolves w/o further suffering.
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Oldage, this is an ongoing discussion I started on 2/1/23 that hasn't stopped ....We are talking about my cancer journey. My 2nd immunotherapy treatment killed off the cancer but caused a toxic reaction in my central nervous system in the form of extreme dizziness and tinnitus for the past 13 weeks. My immunotherapy is over bc my body cannot tolerate it, obviously. That's the short version of a long story.

Thank you for your kind words which I appreciate.
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Are folks commenting on the original update from Feb 2023 thinking it's a new posting.

I read the Feb update and responded at the time. @lea still wishing you a full recovery from all the therapy around the beauty spot. There may have been further updates and your therapy maybe over. I think I missed those posts.

I read you're feeling dizzy, I guess this is from some form of medication you're on. wishing for it to get better and go away.

@needs I concur the spinning around like a top as kids, I haven't tried it for at least 40 years I think. I might try just to see if it invoke an memories, I hear balancing exercises are to be practices more as we age. If you balance on one leg, with your eyes open it's fine for most people, as soon as you close your eyes, you completely lose your balance.

best wishes @lealonnie1 wishing you continually get better, keep that dime with you always.
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Asthma is nasty I am concerned about R and the wheezing with his bronchitis. I've had allergic reactions that do that to me - you can't breath, so I carried sudafed with me always until I got on antihistamines regularly. Once I heard someone with strange breathing in the room - asthma like - and I realized it was me - no one else there. I had had a year of thyroid issues, insomnia and other stuff and I had had enough. Told myself - no way are you putting up with asthma too. It went away. Wish I could do that with other issues too.

That misohonia sounds awful and like something I read about in that same article actually - the triggering of emotions by something "normal". How dreadful for you. Not something I have though I am sensitive to sounds and light. Right now I can't even listen to my fave music. I NEED silence. ADHD - my family is riddled with it.

Good luck going without the walker. I understand your reasoning. That's embracing the new norm! I hope the smaller steps tapering off prednisone help.

Plans -what are plans? lol. Day by day I go with what I can do. These days I have to be careful. It doesn't take much but the stress of normal life to set off the fatigue, sore throats, muscle pain, brain fog etc. What's new? I have some online banking to do. I know exactly what I have to do but my brain is saying, "Nope, take a nap!" I am usually better in the later afternoons so I take it easy until then. No appointments before 2 pm.

I filled up some bags of clothing for the thrift shop yesterday. Taking them down is another job. I do a mental check over the week - if the plants are watered, the cat litter box clean enough, my laundry done, (more or less), there is food in the fridge, supplements in their reminder containers, I am bathed, etc., bathrooms and kitchen are acceptable, floors reasonable, the lawns watered, and I have made a little (or more) progress with the move, I am satisfied. Oh, and the banking and any other business looked after, and a visit to dd. That pretty well takes up most of my energy. Week-ends, week days - all the same to me.

Some days it's just hang in there till the brain fog etc. clears and see if I can get something done. I have learned that doing things in small steps still gets them done eventually. I am hoping once I am settled in the condo I will have more time for - ???? - other things. The challenge right now is to get there without making myself sicker.

I do plan on getting a housekeeper once I am in the condo. I have earned that!!!! 😁😁😁
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True, Golden, the things we take for granted in life are staggering. I realized that decades ago when I developed asthma and couldn't breathe. We take breathing for granted BIG TIME. Then when we are forced to focus on each and every breath we take, yikes, it's a nightmare. I do believe that folks w fm/cfs suffer more symptoms with EVERYTHING in general. I was reading up about misophonia which is a phenomenon that causes strong emotions and reactions to certain “trigger” sounds. Like chewing food noisily, utensils against plates, pens clicking, water dripping, etc. These trigger sounds can invoke feelings of anger and rage, even......I've dealt with this since I was a teenager never knowing there was a name for it! Ay yi yi. I think I'm a phenomenon that needs to be studied.....part OCD, part anxiety, part ADHD, and part insane 🙄 All I know is when I hear my trigger sounds, I'm like a wild thang needing to exit the area stat. Anyone else? Listening to someone eating cereal from a bowl and clicking the spoon is sheer torture to my ears.

So I've decided to quit using my walker UNLESS I'm having a horrible day titration wise. I think my weird oddly wired brain needs to adjust to this dizziness as its new norm for now w/o relying on a walker. I'll still bring it in the shower bc it's too dangerous not to....I need something to lean on getting in and out. So it's scary to watch me walk, basically, but I'm walking unassisted. Tomorrow I go down to 35mgs of prednisone (I'm doing the 5mg instead of 10 plan) so the walker will likely come out again....but that's ok. One day at a time.

Whats on your agenda for the weekend? Nothing for us. I have my housekeepers here today which is always a bonus and Chuck is not allowed to cook on Keep The House Clean Day. 😂🤣😃
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