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Tired of dealing with people in charge
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seaweedbits posted:
Bosses and Doctors are driving me crazy. I've had to work through many a day of intense pain because they apparently do not believe that I'm in as much pain as I'm saying. And trying to convince my doctors that 8hr days are outside of my capabilities right now has been fruitless. In fact I've been told "you, know pushing through the pain helps improve fibromyalgia" which yes, to an extent may be true, but not in the way my doctor was meaning. He was telling me to suck it up, which is the same thing he was saying for the year up until I switched from him and got diagnosed (almost immediately) with Fibromyalgia.
The other week I over did it with grocery shopping (I'm all on my own so no one can go but me) and had a MASSIVE, probably the worst I've ever had, flare up, but even though I was crying and hobbling through the day, and informing them that I was having an awful day, I had to stay there. I couldn't even drive myself home at the end of the day. The flare up lasted for three days and I have to work all three days. I just feel this is really ridiculous that unless a doctor says go home then I can't. Even though my bosses are in charge. No doctor is just going to say "go home at own discretion" because too many people will take advantage of that. I'm just super mad at my circumstances right now, even though I'm sure others have/are going through worse.

sigh
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bette_kaffitz responded:
And sigh again. It is so hard to live in a world where everyone else functions, but we just don't. I'm so sorry you have to go through all this. If it's any comfort, most of us have been there and done that.

Let me tell you what--finally--got through to my nurse practicioner. I just told her how I had to get out of the car and stretch (like a ballet dancer at her barr) with my foot on the back bumper 2 times on the way to work each day and at least 2 times on the way back. It was only a 1 hour drive, but I could only do 20 minutes at a time. From that day on, my NP believed me when I told her what I could and could not do.

It's one thing to say, "I just hurt everywhere all the time." It's another thing to describe how your fibro effects just one little part of your life. Tell your doctor how you have to sit down and rest between brushing your teeth and taking your shower. Break some simple daily activity down into the ways you now have to perform it thanks to your fibro.

I don't know about your boss. Mine had a husband with R.A. That helped. When I finally told her about the fibro, she actually asked me if I needed to teach fewer classes! I was lucky, I know, but most people can compare your situation with someone they know who has a similar, painful condition. Maybe your boss is one of those.

Is it possible to shop in a smaller store? I found one that I could get into and out of in half the time. Another trick is to shop early in the morning BEFORE you go to work. My sister used to do this. She said it was a joy shopping in her usual market without all the other shoppers in the store.

We have to be inventive to find ways to make life easier. I set up my shopping list by the order of the aisles in the store: fruit, vegetables, bakery, coffee/tea, baking and cereal, pasta and sauce, etc. I cross each item off as it goes in my cart. I also use a clipboard with a pencil on a string. Items with a coupon have an asterik. Coupons are clipped under the list.
I use my credit card instead of a check because it's easier than a check or cash. (I put EVERYTHING on the card and only have one check to write at the end of the month. And the card pays me!)

I hope that some of this helps. There are loads of tips just to your right here. Check them out.

Please understand that you are not alone. There are many of us in the same boat. Some of the nicest ones are here on this community board. Welcome.

Towards better days,

Bette
 
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Anon_10089 responded:
Ugh, sorry for what you're going through. Your story makes me angry for you! I mean employers are one thing, they have a bottom line. It's sad but true that nowadays employees are not met with much loyalty. But doctors should be advocating for us! And, we are paying them!

And no, actually pushing through the pain can cause more pain. Yes, living life means pushing through pain and that is good. I see that side of the story. It's better than laying at home in a dark room (that sounds wonderful sometimes though and I spend time doing that). But there is a threshold. FM is a condition of central nervous system sensitization and staying in the same level of pain only makes it worse. It means it makes it easier and easier for our nerves to "remember" the pain and it makes it harder to treat.

Are you part of a larger medical group? If so, perhaps there are case workers or higher ups you could contact. You need someone on your side, advocating for you, since your doctor is not doing it. I bet those days you were in that much pain and working your blood pressure was elevated and all kinds of not so good things were going on in your body. You deserve quality of life!!

Please look at the website http://homepages.sover.net/~devstar/myopain.htm
I have been directing everyone to this lately. For one thing, it has a ton of information about FM and trigger points. But it also has tons of resources, including data bases of doctors throughout the US who treat FM. Some of it is older information but maybe you could find a better doctor.

I thought of another thing too about groceries: online ordering. I haven't done it myself but I know many grocery stores will let you online shop, then you just park in a certain spot outside the store and they will bring the bags out to you. And I just heard something about Amazon doing a grocery delivery service. I don't know what Amazon charges but I don't think the grocery stores charge much, if anything. It might be worth scraping the money together if there is a small fee. Grocery shopping is a HUGE pain trigger for me--I think it is for a lot of us.

I hope things get better for you. You do not deserve to be living in that much pain.

--JR
 
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missist replied to Anon_10089's response:
Seaweedbits.. hi, boy I empathize so much! I no longer work--although I have been nudged to ever since I finally got my hubby to say ok to me just quitting 3 yrs ago. I was in so much pain! Really helped to stop. But I know not everyone can do that. I'm a Gramma now and closer to retirement age anyhow and I had no benefits coming up that would be damaged as I spent most of my younger years raising kids and homeschooling and didn't have that many years of work outside the home until they grew up. These days I babysit 3 days a week for my daughter. Her hubby is a student. Those 3 days wear me out! I was flared up Tu. night it came on and yesterday I had a full day of kids. I did push through but I took a nap when they did. and went to bed early.

I am sick of my doctor too--AGAIN. I just found a clinic in town that has an MD and chiros, accupuncture and a massage therapist. My ins will only cover MDs but I will see if ther's is in my network.

I am a HUGE fan of voting with your feet when you have made reasonable attempts to get through to a doctor and they just won't budge off whatever it is they are so sure of.

Pushing through fibro pain--for me ALWAYS ends ups in some kind of ugly situation. However it has been less the case as I get older---pacing always has worked better. Sometimes I realize I do need to push a little bit more--but even then I do it in such a way that I sit or walk around etc too-- so as not to push too hard.

I've had things happen that caused a painful are that lasted as long as 2 years after over doing it.

You need to start looking for two things---a more flexible job and a doctor with ears. Tell your doctor you are frustrated and feel like this is YOUR body that YOU have a better idea of what is happening than He/she does. I had a stupid young woman doctor who just could not allow me to tell her anything without giving her pat Medical/PC response.

She told me how her 90 Grandfather walked longer on treadmill than I do. (gee thanks)

I got "I can't believe its not butter" so I could cut cholesterol cuz it actually tastes kind of like the butter I'm so addicted to--she wanted me to get smart balance cuz its HealthFood/PC and supposedly better for you-- BS-- if it does'nt taste like butter--I'm not going to use it--so who cares?

I mean-- there are people you described as "in control" here's the thing

it is YOUR life and YOUR body.

YOU should be in control. I can see maybe having issues with a boss that might not be fixable-- if you can't find another job and MUST work--but so far I think we still have enough doctors that we can Switch.

At my age I've really had enough of it with these doctors. They are 'mindless' to my way of thinking. They read or hear what they are told by some convention or drug rep and don't stray from the text. Look for someone willing to question the Politically Correct Medical Dictocrats and help you.

You may need to drive a bit.

Will be praying for you.
Mary
 
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missist replied to missist's response:
Seaweedbits--- correction--meant to say "pushing through caused painful AREA, not painful are.

Also-- Tell your doctor-- The research and science on fibro is not final yet--there is no way they know that pushing through pain is good for fibro patients. They have not tested a big enough sample thoroughly enough. They do not even know the cause or exact mechanism of this disorder yet so ANYthing that is supposedly 'known' is BS and you want her to know that every person with fibro knows more about how it is in daily life than any researcher or doctor does.
 
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seaweedbits replied to missist's response:
Thank you EVERYONE for your supportive responses. One thing I guess I forgot to mention is that I am in the Military. I cannot just change my job or doctor. They're currently trying to medically discharge me (which I think is for the best) but up until then I'm still a full member of the "team" and I guess I'm expected to be that, even though it is highly outside of my capabilities. The doctor I currently have was actually one I switched from before because he was so ineffective at helping be, but with the limited doctors we have on base I don't really have an option to switch. I DO have a rheumatologist that's separate, but she doesn't work with military much, so the strange recommendations I need (no situps, no running, etc) Are abnormal for her, very few jobs require you to be physically active outside of your work hours. It's just a very frustrating situation and I feel helpless.
I'm not afraid to say "Boo" to things that I know are wrong, or that I know will negatively affect my fibro, but unfortunately I need to try to be professional, which for the military means to suck it up and push through it I guess.
Also I'm in small town Texas, so the nly online ordering I can do is for deli trays and flower arrangements haha which is good to know, but I can't quite survive on deli slices, alone.
I really appreciate the suggestions and will try to use them to make my life easier.
 
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Anon_2912 responded:
Well I understand your situation, however, I understand your bosses as well. If you can no longer work than quit.

I worked because I had to, even if a doctor said to stay home, well financially I couldn't. I did have to suck it up, didn't want too, but bills had to be paid. If I had stayed home and bills werent' getting paid, then I would stress even more and I would get even more pain..A No win situation.

Maybe find a part time job, if you can.

Now I work because I want too, I would go crazy mentally if I didn't. I am blessed that I don't have to work if I no longer could. I am not saying I don't get bad days, but they don't kill me yet:)

I also understand your bosses position. I am over employees at work and I expect them to show up on time and do the job they are getting paid to do, if they can't I will find someone else, it is nothing personnel, but a business attitude. We have policies at work for missed time or days. Even I fall into that category.

My doctor would give me a note saying I had to stay home for the next 2-3 days, but I would put my co-workers in a bind and I don't think that is fair to them (unless it is truly a family emergency). I know the day will come when I can no longer work, but until then I do the best I can until I can no longer and will have no other choice but to hand over the reigns to someone else who can be more dependable.

With work it is nothing personnel, it is a business attitude.
 
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Anon_10089 replied to Anon_2912's response:
Anon 2912- You must have posted right after seaweedbits did and didn't see her explanation about being in the military.

Seeweedbits--that's a tough spot you're in. Obviously you have a good work ethic and do not want to leave anyone in the lurch, like all of us here. But sometimes our bodies just do not allow that no matter how much we want to keep pushing. I have been in that situation. Hopefully they can get you on the health leave (I have no idea how it the military works) soon. I bet you are willing to work and be part of a team but most of us here would not be able to do things like run and have to stay at a standard of physical fitness.

The only other suggestion I have is to make sure you're super organized when you see your rheumatologist so that you can make the most out of every minute of your appointment. I like to go to appointments with things written down. How my symptoms affect my life directly, what I'm doing to try to cope now, what I expect to be able to do with better treatment, or in your case, being off work. Doctors do look for things like not even being able to grocery shop as a reason for being off work. Make that very clear to her. Maybe ask her to look at you with fresh eyes and to know that you need some help. There must be forms or something for her to fill out for you? Offer to be her educator on military.

I wish there was more advice to offer. You are in a tough situation. Sometimes just talking about it can help, though, even when nothing changes. Hopefully coming here has helped a little. If nothing else, you're not alone!

--JR
 
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booch007 replied to Anon_10089's response:
I liked the comment of sharing cause and effect. Journal your stuff*. Tell them what you do to be better. What seems to be a trigger for pain and dysfunction. Chart it WHEN you are feeling it, describe it well.

The depth of pain, where it is and what parts of the body are involved. We use a scale of 1-10 for pain levels. Tell them the number and what you did to get yourself better. Heat, shower, massage, mads?

I had so many proactive things I was doing but in that I just said. "I need you to get this better". My MD is so much in my cormer to defend me and protect my ability to work.

The military is a whole other thing here. Your workouts alone are over MY line....I don't know why you don't have medical for that and not have to do it. I ,and I think WE here, can stretch and walk.....and that is it. I can't imagine your day and what they have you doing.

Take a good look into your days and see the body posture you use, the reaching out with arms is a big no no for me. Are you working above your head? All of this is a trigger I found. It is so important to look at your day and the isues you have that follow. What gave you an ok day and what killed you.

Make your list of triggers and fixes and bring it to the doc. It is so helpful to have concrete symptoms and activities to help be clear of the issues. Saying I hurt all over is too generic.

Good luck. Good stuff on here for you.

Nancy B


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