How to grieve, self-motivate, track symptoms, hunt triggers, decide & follow thru on treatments

Auriel

Senior member
Joined
Jun 8, 2021
Messages
442
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
@JayCS you should be a fibro consultant or something, all that ⬆️ should be in a booklet or just everywhere someone with fibro can read it SUPER USEFUL πŸ₯‡ πŸ‘πŸ» 🌟
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
what to sit on as my hamstrings are so chronically painful and their couch is so low.
I've asked people beforehand if they have a bar stool for me, otherwise something like a table I can rest on...
Apart from that I make sure I'm able to get down on to, sit on and get up from whatever as comfortably as I can, using all tricks, whether "Alexander technique" or "McGyver" type - preferably without help of others.
On the same note as what you're saying I never hesitate to ask for help or if not possible keep the meeting short.
This year any visits will have to be short if at all, even if round our own place (like today: 2x20').
 
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JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
@JayCS you should be a fibro consultant or something, all that ⬆️ should be in a booklet or just everywhere someone with fibro can read it SUPER USEFUL πŸ₯‡ πŸ‘πŸ» 🌟
Hehe - I wouldn't mind. But it'd take someone professional to convince & help me. Until the cow's come home (and after) - I'm here... :cool: (and wherever else I feel welcome).
 

Badger

Active member
Joined
Apr 2, 2021
Messages
91
I've asked people beforehand if they have a bar stool for me, otherwise something like a table I can rest on...
Apart from that I make sure I'm able to get down on to, sit on and get up from whatever as comfortably as I can, using all tricks, whether "Alexander technique" or "McGyver" type - preferably without help of others.
On the same note as what you're saying I never hesitate to ask for help or if not possible keep the meeting short.
This year any visits will have to be short if at all, even if round our own place (like today: 2x20').
I get annoyed with myself for not liking to complain, sometimes people can't understand what the problem is, it makes me anxious to go out. You have good advice and keeping visits short has been on my mind. I've been to my friends a couple of times since and experimented with sitting on one or two back cushions. It helps for a couple of hours or so before the pain flairs. Possibly because they are soft cushions and my weight pulls me over them. To be fair they ask if I'm okay, maybe I can get a gel cushion online. Otherwise I'll get up regularly to have a stretch and ask for a different seat.

In my brother's I sit on a single seat which is a better height and firmer. There's usually a fleece cover on it. The mad thing I realized sitting on it is after an hour or so I get awful neck and back pain. It feels like sitting on concrete unless I take the cover off the seat. I confirmed as much trying a cover on my couch at home. Shows how irritable FM is, it's unfortunate that I injured my neck and hamstrings. There's no escaping the discomfort.
 
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JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
910
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I get annoyed with myself for not liking to complain, sometimes people can't understand what the problem is, it makes me anxious to go out.
I totally get this. I take it as a challenge to make them understand. Not just with words, but by doing the strange things I need to to feel OK.
To be fair they ask if I'm okay, maybe I can get a gel cushion online. Otherwise I'll get up regularly to have a stretch and ask for a different seat.
Two really great ideas. To some places I do take a cushion with me (or make one out of one of my hoodies). The longest I was at friends, a few months ago, was 5 hours. After the ordeal of a 1h car trip there (lying twist-stretched), first thing I did was lie down for 30' on the camping mat I'd brought with me. Second thing was to look for a place in the house where I can sit similarly to at home, twist-stretched sitting on the floor on my mat & praps cushions, away from others to de-stress, with my laptop and headphones (for comfort) up on something I can lean against. I then alternated 20-30' with them, 30' break. In between talking with them I had a small focal seizure, and didn't hide it, continued talking. The result my wife told me the next day, was they were impressed how well I was self-caring seeing as how many health problems I have. (My focal seizures seem to impress people, altho they don't scare me. 😏)
In my brother's I sit on a single seat which is a better height and firmer. There's usually a fleece cover on it. The mad thing I realized sitting on it is after an hour or so I get awful neck and back pain. It feels like sitting on concrete unless I take the cover off the seat. I confirmed as much trying a cover on my couch at home. Shows how irritable FM is, it's unfortunate that I injured my neck and hamstrings. There's no escaping the discomfort.
I asked my son if he had a bar stool for me to sit on, so I can twist-stretch sit better when I'm there, so he wanted to buy me one and I sent him the ebay-link to the ones that work for me... (with a hole in the back for my tailbone).
Seems like me you can escape the discomfort by adapting seats and moving more?
 
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Badger

Active member
Joined
Apr 2, 2021
Messages
91
If I can find something that feels close to the ones at home it would help, although there's discomfort they don't make the pain worse as others do. Neck and hamstrings have been really awkward places to injure. I take heart from your example of making yourself more comfortable and helping to make people understand. There's a difference between complaint and moaning so I shouldn't be afraid to complain and be straight with people. Partly depression and my upbringing I guess. The fear factor is something we can learn to let go off.
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
761
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
If I can find something that feels close to the ones at home it would help, although there's discomfort they don't make the pain worse as others do. Neck and hamstrings have been really awkward places to injure. I take heart from your example of making yourself more comfortable and helping to make people understand. There's a difference between complaint and moaning so I shouldn't be afraid to complain and be straight with people. Partly depression and my upbringing I guess. The fear factor is something we can learn to let go off.
I struggle with that too, Badger. But it is definitely getting easier with practice!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,757
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
It does get easier with practice. Because I am a person who never wants to talk about FM unless someone asks me directly and is truly interested, I just do what I need to do for myself when possible, without comment. but when necessary I will just say something like, Can we sit over here so I can use this chair? It would be a lot more comfortable for me." Or, I say, "My body doesn't seem to like this chair - is there another one I could use?", things like that. And then I change the subject so that it doesn't turn into a Thing.

What becomes hard for me is when I do that, but the next day or that afternoon the person seems to have forgotten it, and I have to repeat myself.
 
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