Fibromya

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How do I keep going at this level of pain 24/7 365? Some days aren’t as bad as others but every night is extremely bad!

I’ve been officially diagnosed with fibromyalgia since 2019. I’ve failed a number of medications including LDN. I’m meeting with my doctor tomorrow (9/9/22) to hopefully approach the drawing board once again because this is ridiculous! If you all have any tips, advice….whatever please feel free to reach out. Thank you!
#Fibromya #ChronicPain #Migraine #ChronicDepression #Anxiety #CopingTips

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I’m in another flare up #Fibromya

I went for a 10 minute walk for the first time since having covid (I deliberately made sure not to push myself for the whole month). I sat down multiple times, I made sure that I slowed my pace down and walked slow. I made sure that I paced myself. It didn’t matter, I’ve been in extreme fatigue since. I can’t think straight, I can’t focus on anything or retain any information. Even better I’m still waiting on my rheumatologist letter from early December! I’m exhausted and in pain. I’m also scared that I won’t be able to continue working. I just started an apprenticeship for teaching. I don’t want it to take away that dream, not when I’m so close. #Fibromyalgia #ChronicIlless #ChronicFatigue #ChronicPain #Flareup

2 comments
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Feeling fear

I have been dealing with chronic illness since I was 13. I have #Endometriosis #InterstitialCystitis #IBS and #Fibromya . I have been in some sort of flare since mid March and I just keep getting sicker. I’m currently being evaluated for #POTS #nutcrackersyndrome #MALS . Tonight I almost passed out in the shower. Then I vomited. I thought that spell passed and I just got into bed and was reading while all of a sudden I got overheated and nauseous and then vomited again. I haven’t been scared or fearful of my symptoms in a long time. I have just been so sick for so long and keep getting worse. I finally caved and asked my grandmother to come and stay with me. I hate not being able to do things for myself but I can hardly function.

3 comments
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CT scan excitement!! #Fibromya #MyalgicEncephalomyelitis

I'm getting a CT scan today! I've been waiting for so many appointments, and I can't wait to see if there's any results from it. It feels like I'm finally on track to get some more answers, as we think there's something more than fibro going on.

4 comments
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forgetting your illness #InvisibleIllness #Fibro #Fibromya

Things are good, you've had low impacting symptoms for a while and you're starting to remember your pre-diagnosis life. Surviving quite happily on a steady dose of painkillers and enjoying the festive fun.
Not so fast pal! 
Cue a poorly child you're responsible for nursing back to good health, a weather change, or maybe an allergic reaction to some costume jewellery. Could it maybe you've done a little more walking than you usually do, or a long drive? - and bang!
Hey chronic illness, long time no see.
Now there's no need to pretend like all the above things haven't been thoroughly enjoyable, because if it wasn't for those things you would have been sure to shrivel up and die of sadness, but when a flare up occurs it can be completely life limiting, and that's why it's called an invisible illness, because you don't see it coming.
It's December and Christmas cheer is everywhere. You're getting right into the spirit of it and so you should, but then you catch that cold your daughter came home from preschool last week with, and it's downhill from here.
I wanted to write a bit about how it feels to have a 'just a cold' whilst fighting a chronic illness and what catching viruses does to our already weakened immune system.
Of course at first it starts like any other common cold and you get a sniffle or a bit of a sore throat. Then the pain from your congested sinuses trigger a migraine and the onslaught of nausea that follows makes you feel weak and shaky - for days!
Once that's passed, the aching from the flu like symptoms, makes your already weary joints feel like they've been battered with a hammer, every single bone in your body feels bruised and your skin is sore to the touch. The raging temperature you've acquired messes with your already shot internal thermostat, and you constantly flit between grabbing extra layers and peeling sweat covered ones from your limbs. After you've done that a few times the fatigue completely floors you, and you have to close your eyes. Which is a bit of a problem when you're sat at your desk or the school run needs doing.
What is just a sniffle to the average Joe can disable someone with an already weakened immune system and if you see them feeling a bit sorry for themselves try and refrain from telling them to man up. You can't see the fight they're fighting but underneath the snot their body feels like they're in the ring with Ali. Don't make an assumption that because people look well means they aren't battling, they may well be trying harder to conceal it.
It's so important to pace yourself when you suffer from a chronic condition but it's also really difficult when you're feeling well to remember to do this, and not get down about missing out on fun stuff. Suffice to say I didn't pace myself all too well this time around and now I'm paying for it. #Selfcare #Paceyourself #ChronicPain #winterbugs

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Renewed faith in #CBD

Some mighty’s may remember my moaning about the disgusting CBD oil and my intention to inject the oil into capsules. My mum actually ordered some pre-made capsules from health span and let me have a few. I am pleased to say that I have noticed a difference in relation to #ness #Fibromya pain, it’s not gone but it does seem less, no particular change to #bladderpainsyndrome #InterstitialCystitis symptoms... will keep you posted 😏

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How was your Xmas and New year? # depression #PTSD #Fibromya

I was sitting quietly thinking about all the people who have invisible illness, chronic pain and mental health issues and got to wondering how they had spent the time..
I even wondered if anyone had asked them if they wanted to join them for the holiday.
Personally I had one of the best times ever in the last 4 years.
Both my daughter and myself have mental health problems and I also have chronic pain and several invisible illnesses, but we got to spend a few days together without anyone wanting to separate us at night. It was absolutely fantastic and we both enjoyed every minute of it.
The only problem is now that she has returned to her supported housing unit it's so very quiet and I really miss her being here. I thought I'd share a picture of me with the lost look I seem to have developed since she went back. It's not often I let people see pictures of me but here goes...

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How was your Xmas and New year? # depression #PTSD #Fibromya

I was sitting quietly thinking about all the people who have invisible illness, chronic pain and mental health issues and got to wondering how they had spent the time..
I even wondered if anyone had asked them if they wanted to join them for the holiday.
Personally I had one of the best times ever in the last 4 years.
Both my daughter and myself have mental health problems and I also have chronic pain and several invisible illnesses, but we got to spend a few days together without anyone wanting to separate us at night. It was absolutely fantastic and we both enjoyed every minute of it.
The only problem is now that she has returned to her supported housing unit it's so very quiet and I really miss her being here. I thought I'd share a picture of me with the lost look I seem to have developed since she went back. It's not often I let people see pictures of me but here goes...

Post

How was your Xmas and New year? # depression #PTSD #Fibromya

I was sitting quietly thinking about all the people who have invisible illness, chronic pain and mental health issues and got to wondering how they had spent the time..
I even wondered if anyone had asked them if they wanted to join them for the holiday.
Personally I had one of the best times ever in the last 4 years.
Both my daughter and myself have mental health problems and I also have chronic pain and several invisible illnesses, but we got to spend a few days together without anyone wanting to separate us at night. It was absolutely fantastic and we both enjoyed every minute of it.
The only problem is now that she has returned to her supported housing unit it's so very quiet and I really miss her being here. I thought I'd share a picture of me with the lost look I seem to have developed since she went back. It's not often I let people see pictures of me but here goes...

Post

How was your Xmas and New year? # depression #PTSD #Fibromya

I was sitting quietly thinking about all the people who have invisible illness, chronic pain and mental health issues and got to wondering how they had spent the time..
I even wondered if anyone had asked them if they wanted to join them for the holiday.
Personally I had one of the best times ever in the last 4 years.
Both my daughter and myself have mental health problems and I also have chronic pain and several invisible illnesses, but we got to spend a few days together without anyone wanting to separate us at night. It was absolutely fantastic and we both enjoyed every minute of it.
The only problem is now that she has returned to her supported housing unit it's so very quiet and I really miss her being here. I thought I'd share a picture of me with the lost look I seem to have developed since she went back. It's not often I let people see pictures of me but here goes...