so tired and anxious and pissed off

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jasper_b

New member
Joined
Jun 1, 2022
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9
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DX FIBRO
Diagnosis
01/2018
Country
US
last year i had work exemption for food stamps. this year my doctor decided she "wouldnt lie" and marked that i could work with restrictions- the "restrictions" just being an attached functional capacity report i should've never had done because all it does is show i dont have hard measurable physical symptoms, just a lack of endurance.
so the last month, to keep my food stamps, ive been working at a soup kitchen. it's a light job. 3 hour days, 3 days a week, half the time is sitting and resting because there's more people than work. aside from the fact that the rest of the people working there hate the homeless that come in and talk about and to them like they're animals, and that it only pays "keep your food stamps" + $60/month, it's a "perfect" job.
but despite all the rest, despite all the days off, despite the fact i get through the days fine with just slightly sore feet, there's been a separate level of building pain and fatigue that never seems to go down.
i just got off a 3 day weekend and i was barely able to move around the whole time. i did all my yoga every day and it didnt help much. im going in to work now and im so tired and scared of the pain thats going to happen.
ive been thinking about getting a skin biopsy done for small fiber neuropathy, which apparently can be a quantifiable marker for fibro and other issues, and while im there i could talk to my doctor about how im faring, but i feel like it wouldnt do anything. im already in contract for a year of work. i think they'd just yank my food stamps if i proved unable to fulfill it one way or another.

a side note is that id really prefer to get a different doctor - one that doesnt think considering my limitations is "lying" - but the system they're in wont let me do that unless i get signed permission from her, which is horrifying if you think about it for more than a second.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
2,171
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Jasper, what outrageous situations in the soup kitchen and with your oh-so-honest doc.

Your co-workers (hard to call them that) sound as if they are in denial that they are close to being there themselves, behaving like the animals? I've never ever experienced anything like this in any voluntary work with the homeless, but I spose this isn't voluntary for anyone there...
Hope there are at least 1 or 2 people you can talk to sometimes, maybe preferably the homeless themselves than the others... I spose you needing rest there doesn't need too much justification...
I'd be surprised if the SFN-biopsy helps, but I'd definitely do it, if you can, and maybe it'll get your doc more on your side.

However I'm wondering if there's any trigger you're missing for the separate level of building pain and fatigue.
In my experience there would be some, I always find triggers for everything (using the detailed notes on my blog).

The only thing I can see to question is the daily yoga which you say is helping. Could it be that that is helping on one level, but overdoing it on another? Even before my added MCAS-fatigue I often needed to keep my stints of yoga down to 6-8 minutes, but several times a day, and preferably not just one sort of exercises, switching them, so that parts of me can rest while others do a bit of work, or do something more passive, like twist-stretching, even just lying on something which causes a stretch.

And how are your local pains doing compared to your overall pain-buildup (which in my case I call an "Ache")? Praps that can give a clue, some leverage.
 

Auriel

Very helpful member
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Joined
Jun 8, 2021
Messages
976
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Who are the ones being rude jasper coworkers > homeless or homeless> coworkers aw either way around would make me sad (I get on the floor with homeless sometimes, I like to know their stories how they got there and who’s helping them to get homes again) I’ve never heard of biopsies for fibro (unless it’s a new thing?) have you tried an elimination diet (wheat/gluten bothers me big time) your new, hope you like it here, welcome jasper ☕ 🍪✨
 

sweetkamie20

Senior member
Joined
May 16, 2022
Messages
459
Reason
DX FIBRO
Diagnosis
02/2022
Country
US
a side note is that id really prefer to get a different doctor - one that doesnt think considering my limitations is "lying" - but the system they're in wont let me do that unless i get signed permission from her, which is horrifying if you think about it for more than a second.
No wonder you want a different doctor. Practically speaking, You NEED another one.

I heard most doctors would rather see other patients because FM is something they can't fix. We "take up" a lot of their time with "complaints" they can't heal. That makes sense because, for instance, it's like owning a restaurant and having a customer asking you for something you don't have on the menu.

I wouldn't be surprised if your doctor is happy to grant you permission though, by the sounds of it, I wouldn't be too surprised if she didn't...

Sadly, doctors make notes in their chart indicating their impressions of someone and the doctors draw unfair conclusions at times so ideally you can present a "legitimate" reason (one the doc finds reasonable) to change doctors. Maybe there's one closer to your house, or there's a doctor you have a past relationship with? Maybe there's some reason she will find acceptable?

It's frustrating that you even have to play this game just to be treated with decency. I really hope you can get into a better situation easily.

Homeless people are treasures. They are often humble, authentic, compassionate ❤️. Their sense of right and wrong is refreshingly practical. The best job I ever had was working with homeless people alongside amazing compassionate workers.
 

Sabina

Active member
Joined
Aug 6, 2020
Messages
43
Reason
DX FIBRO
Diagnosis
09/2010
Country
US
State
IL
Hi- perhaps you could ask your doctor for a referral to a Rheumatologist. This is the kind of doctor who helped me define & diagnose my fibro & enabled me to get FMLA accommodations. Plus it would get you out of that bad doctors hair.
Just a suggestion.
Also, if you do move on, you can get your records from the bad doc by completing a Record Release Form. Every doctors office has theses forms. They are your records to have by law. Reading them may help you see what was keeping that doc from getting you what you need in the future.
Keep us posted please,

Sabina
 

NY Farmwife

Active member
Joined
Jul 26, 2021
Messages
30
Jasper, it's rotten that you must "work" for your food stamps. I know how hard it is to get up, shower, and dress to leave the house on a bad day, and there are probably plenty of those when you are scheduled to work. Unless my math is wrong, you are being paid about $2/hr. for your time. (3 hrs. X 3 days X 4 weeks= 36 hours/month for $60 in food stamps.) Is the hassle worth it? If your doctor does not release you, try another medical plan next year, and find a doctor in your new plan who is more sympathetic to fibro patients.

It is frightening to realize how close many people are to being homeless. Sometimes people are cruel to the ones who are just one rung down on the economic ladder than they are. I think it's a fear that these other people might take their jobs or their homes or their social status away from them. Poor southern whites resented newly-freed slaves. They became the rank and file of the Klan. The Irish-Americans and German-Americans resented Italians who came after them. The Italians resented the Jews. It was all fear. And fear makes bullies.
 

Rojo

New member
Joined
Jul 28, 2022
Messages
5
I understand how you feel about being treated like a liar. It took me over a year to find a doctor who understood my symptoms. I went to the top orthopedic doctor in my state and was told very nicely that there was nothing wrong with me and just go home. You know better than the doctors what you are feeling. Don’t give up. I know when I did apply for disability after 13 years, they do send you to their own doctors for medical review. Don’t give up. What if you put a request for referral to another doctor for a 2nd opinion? Can you put your request in writing to your doctor? You are entitled to a 2nd opinion. Maybe? Good luck
 

Auriel

Very helpful member
Forum Supporter
Joined
Jun 8, 2021
Messages
976
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
And narcissism too it makes bullies too (narcissism fear hate prejudice) all of it , it makes me sad 😔
 
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