Fibromagical Slower Reading - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromagical Slower Reading

Tjoceans profile image
Tjoceans
•8 Replies

Is fibromagical a word? 😊 I'm sitting here reading and I think that I am a slower reader sometimes and sometimes not. I am thinking that as I'm reading, rather than focusing on what I'm reading. I had this problem all through university. I had a big workout yesterday, which I pushed it harder and when I do that I have full fatigue the next day, but exercise treats FM, so I keep going and by the end of the week I have nothing left to give. The following week is the same. It's the same with just walking or reading. After 20 min, I slow down like farigue. I'm having that today and I read all over about fibro fog and concentration. I read the other day that FM is no longer categorized as a disease because it is not a rheumatological condition and is not related to abnormalities in the musculoskeletal pain and fits better with problems with the CNS and pain receptors. It isn't even being recorded as inflammation. Can any doctor tell me what my condition is so that I can have permission how to feel?! This is sarcasm. I have read that FM is manageable and people can continue living an active life with the support of friends and family. Isn't this a messed up way to treat us?! Ok. I've been getting the support from friends and family. They make my meals for work, get my groceries, remind me of appointments, sometimes driving me to them. Then I go to a job that I found, in which all I do is drive. So, when do the people supporting me get support for themselves? I know a woman that has to retire from her legal practice, because she cannot keep up anymore. So I gotta say, this mystery syndrome definitely affects everything in my life, maybe since it's a new thing, they might have to come up with a new category altogether, so that we might be taken seriously and some of us can get on disability.

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Tjoceans
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Tjoceans profile image
Tjoceans

Side note, I drink tea rather than coffee, because caffeine treats my FM well, but coffee makes me voracious. Also, I've begun taking Afrin nasal spray. It seems to help with brain fog. I discovered that once I started getting more allergies. Where I live, ADHD isn't treated. It was treated with Adderall, but now nothing. Just some things to consider.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

Just to add a couple of comments to your post. Also it is a good idea to put line breaks in long bits of text as it makes it easier to read.

Exercise can be good for people with fibro but overdoing it whether it be activity or work or whatever can end up putting you back a bit. Pacing is key.

Doing less activity over a longer period of time and in smaller increments may be something to consider. Some people have commented about having good days and trying to "catch up" on paperwork or housework like a normal person and then are surprised at being in bed for a couple of days as a result. Body "blowing a fuse" is often mentioned.

Tjoceans profile image
Tjoceans• in reply todesquinn

Have I missed something? I am contributing my experiences and my thoughts. Oh well, why try to communicate. Defending myself with doctors, then defending myself here.

Sufferings profile image
Sufferings

Hi there not sure why you feel you are defending yourself here.Fibromyalgia is recognised worldwide but seems your doctors aren't supporting you in this. It is certainly recognised here in the UK and we take different meds to the USA with the exception of Pregablin which is very similar to Gabapentin or it could be the same meds just having a different name.

As for caffeine I find it doesn't help me at all so avoid it as much as possible.

With all illnesses, diseases etc things are changing all the time. More research, new medications etc which is a good a thing especially if cures can be found.

I empathise with your predicament none of this easy as they don't yet truly understand what the cause is. I know there is talk that its stress induced for example PTSD, Trauma, anxiety and probably many more factors none of which have been proven 100%.

So all we can do at the moment is listen to our specialists, pray they find the cause and then a cure.

Exercise is good for Fibro but in moderation a short walk everyday helps, Tai Chi, pilates, stretching and Yoga have been found beneficial alongside meditation for the calming effects on the mind and body.

Rita1404 profile image
Rita1404

FM affects and impacts on as all differently and at different times we can go for periods coping them you can have a "flare up" which could be triggered by other events/situations.If you are lucky to have a good GP have a chat with them and discuss various treatments Also see if there is a local support group where you might be able to find others who can help support you.. good luck and never give up

Midori profile image
Midori

I think Fibromagical is a perfect word!

Cheers, Midori

AlteredWorld profile image
AlteredWorld

Hiya, you need to become a 'spoonie' Spoon theory helps us manage our days. there are long and short versions of spoon theory both written and in video.

In brief, Spoon Theory is used to describe the amount of MENTAL or PHYSICAL energy a person has available for daily activities and tasks.

The original site for spoon theory is

butyoudontlooksick.com/cate...

YouTube also has videos but sometimes the comments sections can be 'stressors'.

I've found one site that has cut all this down to 70 seconds for those of us who can't concentrate

roguedebby.co.uk/spoon-theory/

I use Spoon Theory, it helps me keep my life on track, I don't cancel so many invites as I used to and I can live more normally by pacing myself. Hope these links help in some small way.

Good Luck.

Tjoceans profile image
Tjoceans

Not for nothing, I've been dealing with FM since '06, but technically my entire life. When I really look back, I have had bouts of inflammation that has affected grades and friendships. I put up my post, because I was experiencing discouragement not just with the way the docs have treated us, but also with the lies that are spread about the concept of an "active life," and how to have one, which our family and friends have also believed. This belief has caused stigma and judgment from them that we are just lazy. Because everyone trusts the doctors and believes there is a cure, we are seen as not trying hard enough. What cure would there be when we are predisposed to the illness? Diabetics are not looking for a cure. There is no cure for diabetes only management. Why should people around me have to do everything for me? They want their own lives, too. Thank you for noting that people in other countries treat the illness differently. Here in the U.S. we live a highly capitalist life. We are subject to sub-par healthcare. It's up to all of us to find and develop our pain regiment. If you are living with the belief that other people, including doctors are an authority on your care, you should do some more research on your own.

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