Fibro Fog: It's quite funny in a way... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibro Fog

Fibrofog profile image
28 Replies

It's quite funny in a way.my friends tell me to write things down.

Problem with that is, it's out of my head even before going for my pen!

My Fibro fog has been really bad these past 2 weeks. And I've got so many upcoming appointments, that I am actually finding it overwhelming!

Luckily for me I have a best friend who is amazing,and I've been really honest with her,about my struggles etc , that she is going to help me,basically becoming my carer!

I can't though stop myself from thinking , that I am a 45yr old woman,and I should be able to do things myself and not rely on anyone.

And I know I have genuine conditions and its out of my control, which I just literally realised that's the problem control, and I'm just used of doing things myself.

I will get there eventually!!

sorry post ended up being much longer than expected!

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Fibrofog profile image
Fibrofog
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28 Replies
honeybug profile image
honeybug

Hi Ff sweetie 🌿🌸🦋I’m sooooo thrilled you have a loving carer now.

Never mind your age sweetie. My now dying 64 year old brother has a new twist on our age.

Just add the digits of your age together and ALL 9 year olds need care now don’t they???

I love this but sometimes it doesn’t work well between my brother and I as there are times when that twist makes me younger than him and I’m actually 7 years older😂😂😂

Please pass my praises on to your carer how much I appreciate and love her for helping you.

Many blessings for her commitment to you.

I’m sure this really helps you knowing you have this all set now sweetie.

Take care much love stay safe.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

PS my cell is dying preventing my replies and use much of the time these days sweetie.

Fibrofog profile image
Fibrofog in reply to honeybug

Thank you E J xxx

honeybug profile image
honeybug in reply to Fibrofog

You’re most welcome sweetie.

🤗♥️🥰

honeybug profile image
honeybug in reply to Fibrofog

You’re most welcome sweetie.

🤗♥️🥰

Oshgosh profile image
Oshgosh

I write stuff down,but sometimes I write down the wrong month/ wrong week/day.I have now resort to having my husband proof read my diary when I’ve written stuff down.

Luckily the docs physio etc are very helpful and accommodating,but it gets me down.

I’ve had a day a diary since I was diagnosed in late 2018.

It does help,I leave it on the coffee table,so I don’t mislay it.

I only write shopping lists on bits of paper,everything else goes in the diary.

Golfer15 profile image
Golfer15

Hi, you arent alone as this is really bad for me too. My memory is terrible, confusion is bad and I dont have any concentration. This has stopped me from working and driving. My life has changed so much in the last several years. One day at a time.

JoseT profile image
JoseT

one of the most recommended therapies for fibro fog is normal oxygen treatment. Maybe you want to give it a try.

Fibrofog profile image
Fibrofog in reply to JoseT

Oh interesting

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

I'm terrible with fog - even when I write things down, I still manage to forget appointments and mess things up. I have notes on my phone, in my diary, on post it's etc, also for work a to do list, note pad and 2 whiteboards (one in home office, other in office)

Cotswolds25121 profile image
Cotswolds25121

Absolutely brilliant to see England Ladies win 2-1 hope this inspires our young girls and boys to take up any sport😁I ran for Essex Beagles and then for Havering in my youth and was the first girl to win the Basildon road relay three years on the trot 🙌to those out there that have grandchildren( hoping soon😁) them encourage them to do what they are achievable of whilst they can 🏴󠁧󠁢󠁥󠁮󠁧󠁿🙌x

Painny profile image
Painny

You hit the nail for me 🦋

Fibrofog profile image
Fibrofog in reply to Painny

👍😘

Cotswolds25121 profile image
Cotswolds25121

❤️xx

Gigiruth profile image
Gigiruth

Hi FibrofogIt can be so difficult when info flys from my brain so fast.

I ask people to help by saying "I have medical memory problems,just give me a sec to make a note of that"

Then I dont get the "I'm just the same,dont worry about it" response.

I get people to wait a shorf time while I put it in diary or voice record.

If its an idea Ive had I use voice on my phone and I have a dictaphine if needed.

I think our own adjustment can be the hardest bit.

Look after you x

Gigi

Fibrofog profile image
Fibrofog in reply to Gigiruth

Thank you. Take care

Muldoon1963 profile image
Muldoon1963 in reply to Gigiruth

What a brill idea to use the record mic, im forever losing appts on my phone, need to get a day dairy too, thank you,y bug bear is forgetting where ive put my glasses, we were going out for a few hours last week and I still cant remember putting them into my bag, we searched for at least 30 mins until I looked in my bag n they were hiding behind my phone, my fog is a night mare st times. X

Gigiruth profile image
Gigiruth in reply to Muldoon1963

I use a neat little cross shoulder house handbag. Phone , tissues, keys.pen its great.Home made hangers for doors to know if gate open,(dog could get out) fire on etc.

Enjoy being creative,fog is what it is

We got this!

mishjas01 profile image
mishjas01

Hi. I'm the same and I'm similar age. Just having an adult conversation.... I keep forgetting my words!! Or what I was going to say. Met a new friend and feel like silly as I stop midway in conversation forgetting what I was going to say 🤭😪 So frustrating 😤 Not to mention my written work.... always making mistakes. Proof reading 4x everytime! My husband helps. That's one of the reason I don't work.... I would make such a fool of myself!

KimiJay profile image
KimiJay

Know just where you are coming from with the BF. Sometimes I use Sage Oil. - A particular brand 'PH' from amz but I am sure others are ok. It comes from the Spanish Sage. - One amazing day a complete stranger came into a room where I was helping out with something and just started talking about how wonderful this stuff was he'd been taking! I bought some as soon as and have found it a small miracle too. I take it when I remember!!! - Also take it if and when driving particularly to make sure I am sharper than usual. - Modern life has abnormal pressures so not surprising BF descends on our condition and a few others. Someone once said/wrote that our ancestors living in small villages only ever got to know a few people all their lives, so our brains are perhaps not quite so well adapted to loads of information like that, hence the stress of all the appointments. Appointments are not natural things and it's still emotionally like taking a risk with your life in others hands. I find them a right pain even if they are to help in some way. - Press on. You're surviving in spite of it all, so top marks Fibro Warrior. I wish you remission.

Fibrofog profile image
Fibrofog in reply to KimiJay

Now I've got a cyst on my tonsil which I sm waiting for an urgent appointment as I've had it for months but its changed and got worse and affects my voice so I'm permanently croaky!It just seems its one thing after the other!

Sorry for the little moan xx

KimiJay profile image
KimiJay in reply to Fibrofog

Hope your throat gets better soon. Could it be stomach acid affecting the throat a bit too? It does me. I sleep raised up in bed and sometimes I use bee propolis (drops) if it is getting too sore in case there is any infection. I would also reach for the echinacea tea to give my immune system a boost. Hope you get your appointment soon.

Fibrofog profile image
Fibrofog in reply to KimiJay

No it's differently a lump. It appeared in January and now it has changed to how it was.Considering this was an urgent appointment, got a phone call Monday! Didn't get original hospital as they had no spaces! So they referred to another hospital.

I really hate hospitals feels like I spend most my life in one xx

JCRF profile image
JCRF

My doctors, clinic,dentist and hospital all text me the times and dates and nearer time send me a reminder.Maybe worth looking into may gel a little xxx

kaylee4848 profile image
kaylee4848

Hi I have had fibro for years, found it back in the 90's. I joined an in person group and was amazed to find that so many people were talking about fibro fog - I think we were all given the same medicine - well I left my meds at home and was gone a few days - on the third morning I woke up and like the song says "I can see clearly now" - it was an OMG moment - I too had been in a fog and because it came on slowly with the medication and took a few days to clear out - I didn't even know how bad I had gotten.

Is LDN available in the UK? I eventually started taking this for several reasons, pain, for hip, back and fibro and they found a tumor on my pituitary - LDN is this amazing compounded drug that at least in the US is kept very quiet because Big Pharma cannot make money on it - it is made out of an old drug, but in a low dose and can help and or cure so many things.

Again this is why they have tried to keep this quiet (there is NO money in curing people) - but my doctor wrote it for me after bringing him info showing virtually NO side effects and if I didn't have to take pain meds and crap for fibro taking a small dose of this would seem to be much better.

At first I didn't think it was working and then one day (about 3 weeks of taking LDN) I am out doing yard work, got up on the roof, cleaned the gutters etc. and suddenly I realized it was 6pm and I had been out there for hours working and my back didn't even hurt.

It can get into your endorphins which never shut off when you are in constant pain - so the LDN shuts them off and lets them re-set so your endorphins can kick in and do what they are supposed to do when you need help with pain.

So if you are taking meds - can you tell us what, and can you look up LDN which I am pretty sure is available, I know there is a research center in Ireland - the EU/UK because big pharma is more controlled here than in the US seems much more open to a low cost alternative, though still prescription.

I am also reading a book about the effects of iron, magnesium, copper etc. in the body and that many of us do not have these minerals in the right place - they are hiding in tissue/cells and not in the blood where they belong and can be used. Iron when not in the blood goes to areas of inflammation where it causes more problems and makes us actually "rust" iron is also supposed to move oxygen thru the blood - like oh wow - maybe this is why we do not have any energy and why we feel like we don't get enough oxygen.

If this sounds at all like you, or if anyone can relate to this - I will try to post more info and also there is a FB page by the man who wrote about this. haha sorry for MY long post - but I am seeing a glimmer of light.

Bostonterrierlover profile image
Bostonterrierlover in reply to kaylee4848

Thank you for the LDN reminder; time to give it another try. I'm so glad it's working for you 🙂

Fibrofog profile image
Fibrofog in reply to kaylee4848

Right here goes

Pregabalin

Oxocodone liquid and tablets

Mebeverine

Venlafaxine

Omeprazole

Cerelle

Peppermint oil

Vit d

Fexofenadine

Nefopam hydrochloride

Ketoprofen

Lopermide (when needed)

Naproxen (occasionally)

Folic acid

B12

Ferrous fumarate

I think that's it. And I have an appointment with the pain clinic on the 17th so will hopefully remember to say about LDN

Xx

Yassytina profile image
YassytinaFMA UK Volunteer

Hello there, I have a really good friend who sits on my shoulder and picks me up when needed, I know we think about age and how it should be but people here been gifted with 🤣conditions,I think having her around as your carer will have some benefits ie mini tea breaks for a quick chat, drive you out for a small ride (if she has a car)it’s nice too have company in the house as well as we can spend a lot time indoors , take care xx

Fibrofog profile image
Fibrofog in reply to Yassytina

I've thought about it and it won't be fair on her as she has her own health issues. So I emailed social services today. Just waiting for a phone call xx

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