FIBROMYALGIA : IT MAKES ME SO AWFUL AND... - Fibromyalgia Acti...

Fibromyalgia Action UK

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FIBROMYALGIA

Praise56 profile image
12 Replies

IT MAKES ME SO AWFUL AND SCARED AND STIFF AND SICK IN TUMMY. GLARE SENSITIVITY, LIGHT NOISE SMELL SENSITIVITY. ACHING ALL OVER CAN FEEL LIKE LIFTING AND MOVING AS BODY HAS FLU ACHINESS AND MOANING AND GROANING WITH EACH MOVE. CPTSD, THYROID MEDS( NO THYROID) LIVER TREATMENT IN PAST, MANY HEAD CONCUSSIONS DUE TO VIOLENCE PLYS MVA's. CLAWING AT MY SKIN AND LUMPS ALWAYS BLEEDING SOMEWHERE, NIGHTMARES AT NIGHT DREAMS SO SCARY I END UP WONDERING IF I CAN GO ON. ALWAYS FALLING TO THE SIDE WITH BALANCE PROBLEMS AND HARDENING OF BOTTOM OF FEET LUMPS, HANDS DROPPING EVERYTHING DUE TO THEM CURLING AND STIFFENING. BLADDER PROBLEMS AFTER 7 CHILDREN. ALWAYS FIGITY AND UNABLE TO RELAX BUT IN SO MUCH PAIN I HAVE TO LAY DOWN. AFTER EXERTION OR JOBS I FEEL LIKE IVE RUN A MARATHON AND GOT TO RESY OR STOP AND WAIT TO COME GOOD. PINCHED NERVES IN BACK AND LOWER LUMBER MAKES SOCIALING A NO GO AS SITTING AND STANDING LING PERIODS IS PROBLEMATIC . I THINK ILL STOP NOW BUT IM SURE IVE NOT EXPRESSED ALL FIBROMYALGIA S GAITYS. IVE POSTED TODAY AS I READ ABOUT PEOPLE WITH TREMOURS FROM IT. I CAN FEEL VIBRATING INSIDE MY BODY AND LIMBS HANDS HEAD FEET PLUS INTERNAL. IT COMES AND GOES BUT LAST TIME IT STORMED HERE I THOUGHT IT HAD MOVED IN TO STAY, JUST TREMOURING INTERNALLY. TODAY A DOCTOR I VISITED TOLD ME TO LOOK IN MIRROR NEXT TIME AND SEE IF ITS REAL. ITS SO FRUSTRATING TO TREMOURS AS IT CAUSES ACCIDENTS AND FRUSTRATION AND FEAR FOR ME. WE KNOW ITS REAL AND WE KNOW SOME DOCTORS DONT KNOW ALOT ABOUT IT. HALLUCINATING AND AUDITORY WEIRDNESS ON SOUNDS AND SIGHTS TOO. TIREDNESS CHRONIC HEADACHES . LIFE IS SACRED BUT SOMETIMES WHEN U R DRIBBLING OR DIZZY AND WEEK, YOU GOTTA WONDER HOW GOD SEES ALL THIS. SPOSE ITS A TEST ,THAT WORKS.

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Praise56 profile image
Praise56
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12 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Just to let you know that writing in all caps is very difficult to read and unfortunately I have not read the above. It is also considered to be shouting by some online. Not trying to offend but you will likely get more responses if you write in sentence case and with paragraph breaks.

Bacaloca profile image
Bacaloca

I have to agree with desquinn, I was unable to read this post either. Sorry 💜

LunaBess profile image
LunaBess

morning, I could read your post fine and did not mind it all being in capitals. (Some members just like to negatively comment for the sake of it and probably gives them a sense of power). I am with you on all your symptoms and Doctors really are so annoying. I hope you find some comfort and peace in what you are experiencing and my advice is to keep going, you have everything to live for including your 7 children. Big hug 🤗 x

Take care

Pthom50 profile image
Pthom50 in reply toLunaBess

I totally agree with you....I could read the post no problems! x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toLunaBess

As someone that has studied accessibility and has to frequently deal with users that find it difficult to read things then I can say you are really so far off base with your take. Never mind people with sight issues or read screen readers having issues. If you were not aware screen readers read all caps as acronyms and make it more difficult for their users. We have a couple of users on here that use them that I am aware of.

You being able to read it and it being easy to read are not the same thing.

Those with dyslexia will on the whole find it challenging to read text like the above and that is just one group.

"Avoid using all caps. Readability is reduced with all caps because all words have a uniform rectangular shape, meaning readers can't identify words by their shape." This is from Harvard but you can easily find other sources on why it is a bad idea generally if you search.

On the other point "Some members just like to negatively comment for the sake of it and probably gives them a sense of power"

I thought hard before commenting and felt the need to do so as it was so much text and thought the OP would benefit from understanding why they may get a poor response. It was my role as admin thinking of the good of the OP and the forum and not any power trip or for the sake of it as you incorrectly stated.

I have spent ~25 years moderating forums, curating content and producing it as well, so I think I can say this with a bit of authority. Best not to judge others motives on a whim and maybe think that someone is doing something from a place of positivity.

LunaBess profile image
LunaBess in reply todesquinn

You deserve an Oscar

👏

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toLunaBess

I think you would have been better saying a Razzie if that was your intent.

Dizzytwo profile image
Dizzytwo in reply toLunaBess

I and I'm sure many with fibromyalgia even without the sight issues would agree 100% with what desquinn said.

I myself could not read past the first 5 lines so had to pass over it. If saying that also makes me negative then there is a lot more like me out there.

Am I also been put forward for an Oscar now I wonder.. I found your remarks uncalled for and rude just my opinion.

LunaBess profile image
LunaBess in reply toDizzytwo

I also find a lot of your remarks come across as rude and condescending.

We are all allowed out opinions

Dizzytwo profile image
Dizzytwo in reply toLunaBess

Yes your right we are all allowed an opinion and you just had mine. So let's move on. If you have anything further to say to me please do it by PM thank you.

CheetieCat profile image
CheetieCat

Hi Praise56

I can relate with a lot of your post, the trick is 'pacing' - stopping before the jelly legs start and before you're ready for falling down. Easy to say, so much harder to do, I've been failing at it for years!

The internal trembling is one I really hate, it's like you've swallowed your mobile phone on vibrate and someone is calling constantly but you can't answer the blinking thing!

You may have already tried it but I use magnesium spray/lotion a lot, pretty much anywhere & everywhere. Find it really helpful on muscles when they're like bricks, neck, shoulders, wrists, legs etc...

Epsom salts in your bath for a good soak if you can have one or in a basin for a foot & ankle soak. Stretching out your muscles helps throughout the day too, for me anyway.

Have you tried heat pads for your back? The electric square ones are really good for when you're seated. Good old hot water bottle, hot & cold sprays, stick on heat pads (expensive) but good for when you're out.

Might be worth speaking to your GP or a different GP regarding your headaches. They may be able to offer something different or maybe a preventative treatment. Also might be worth changing out your pillows, pain could be coming from your neck. Most of us could open a pillow shop.

Hope some of this helps, take care x

Yassytina profile image
YassytinaFMA UK Volunteer

it still amazes me what some doctors say about Fibromaylia 🙁with the thousands of people suffering with this condition you think they would be more clued up and show some empathy. You have got a lot going on and sometimes we need too be heard, the forum is good to talk and we do not feel so alone . Dont know what ages your 7 children are but I am hoping they show the love for you and there are family members too help sometimes xx

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