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Feel Let Down?
A MyFibroTeam Member asked a question 💭

Does anyone else feel let down ( with the feeling that its to complicated, so they avoid/ give up) by nutritionists and exercise guides/ personal trainers etc
Let me explain. Like a lot of you I have other medical problems as well as FM
In my case an accute lack of adrenaline.
If I ate just tge calories I need, I would eat like a 'church mouse'! I would love to do more and do some exercise. But by the time I have shaved,showered ( with help) and dressed, I am worn out and un pain for the day.… read more

posted April 25, 2017
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A MyFibroTeam Member

nobody knows what goes on with our bodies only us. you could put 20 people with fibro in a room and everyone would be different. we all have other ailments that affect our meds and our bodies. these so called professionals only know what their text book tells them. when they have lived a real life with ailments and disabilities then they can advise us on what we should be doing. until then they should SHUT UP . you do what you need to do and live how you can live. we get by each day best we can. these people wouldn,t know a hard life if it bit them on the arse. be good to yourselves. xxx jan

posted April 25, 2017
A MyFibroTeam Member

Jeezus! At this rate we'll be needing those wee leaflets from the Meds boxes put into a packet of Biscuits, or a Loaf of bread !!
You do whatever you can for you, Alan, cos nobody else is going to! Keep yourself Well, PoD

posted April 25, 2017
A MyFibroTeam Member

I feel the way u do! Not only on the exercise part, but I am also unable to eat healthy. I would love to eat fesh fruits n vegis - plus my ice cream, but cant afford to.
I am on a limited SSI income of $890 a month, my rent is $600 not including utilities. Then I need to buy the household necessities, money for the bus, n quaters for wash. That leaves Very little for food (cant get food stamps where im at if on SSI). So my diet consists on chichen, n lots of rice spaghettii, noodles, or anything else cheap n filling, n my ice cream - a girl needs some type of enjoyable bad habit.
When tried to explain this to my dr, who is always getting on me about my weight, he asked if I thought seeing a therapist would help. I replied only if the therapist is gonna help with my bills!
He also thinks I should b walking 4 miles a day. I stretch it, n tell him about a quarter mile a day - I figured thats about as many times as I get up to go to the bathroom etc.
It is very frustrating to try to explaing to somebody who thinks ur just giving excuses!

posted April 25, 2017
A MyFibroTeam Member

Well said Stephen! xx

posted April 25, 2017
A MyFibroTeam Member

psaltery(thats a musical instrument! https://youtu.be/aD_dsfp1Uyk) & Steele, Thank you for your replies. For me personally, Because I have 'non specific atrophy of the brain and Adrenal insufficiency. Both perm, Pushing myself even that little bit, causes days of pain, severe fatigue and illness. (Think trying to run a car from a AAA battery with only a very slow trickle charger). Yes I try to push myself, but It is so easy to do too much and be ill from it.
Yes it is very difficult to advise people like myself as the condition of each of us is so different.
But that should not mean that we get no support. My Dr understands FM and my other conditions. She understands and does not 'go on' about doing more or eating less.
I was a workaholic and always on the go.
SNRI? Tried them and because of my other conditions they didn't help.
When I was working, I made my reputation on the fact that I didn't give up. If I didn't know then I found out!
Unfortunately for a lot these days if they don't know/understand then they just have the attitude 'dunno' shrugs and walks away. I see it every day in all walks of life.
Considering the number of people that are in similar situation, I would of thought that it would be worth professional people actually 'finding out'.
This morning I was so tired (even though I had slept well), that I just washed instead of showering, was driven to town for a coffee and meet up with me sister. I have come back home and cooked some scrambled eggs for myself. I am now in so much pain and exhausted. that will be me for the day! My carer has to prepare drinks for me some days to make sure that I drink enough (or my gout flares). So exercise in a gym? lol I walk about 75ft max.
There is no universal answer. I asked more because it feels oh so often that when you go for help/advise, the support is just not there.

posted April 26, 2017

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