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Old 02-08-2013, 06:32 PM   #1
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Unhappy Lack of understanding, need some help!

I'm sure everyone can relate to this in some way - a lack of understanding from family, or friends, or work. My doctor doesn't even understand me. I am self-diagnosed with fibro (well self and many friends agree who know me well) since the doctor simply kept saying my symptoms were caused by stress. The only stress in my life is the symptoms I have - the constant pain, the bad immune system, the constant never-ending waves of exhaustion coupled with bouts of insomnia. I stopped bothering with the doctor a while ago because he depressed me and the last thing I need is to be depressed any more than I am already. Then there are my so-called friends. I say so- called because when you can't get to visit people as much you really find out who your friends are. A kit of them have not contacted me in months and when I contact them they say 'hey why not come over' but they know I have fibro and find travelling to see them hard yet they never offer to come see me. When I speak to people one of the first things they ask is what the doctors say about it. Like the doctors have all the answers and if the doctors don't tell you explicitly that you have this or that then it isn't true. My own sister doesn't believe me that I have fibro. And work? Well I get migraines and I think the fibro may make them more frequent. I get a lot of neck pain which has started moving itself forward to my head and causing my migraines to flare. My boss was sympathetic at first but now has told me I'm getting an official written warning if I'm off sick once in the next 5 months. I work in a nursery, only a few days a week since that is all I can handle right now, but there is always some kind if cold or stomach bug or other illness in the nursery and my poor immune system means I catch a lot on top of my migraines being too bad to work through (not only do they hurt but they effect my vision and balance). My boss told me I should work through my migraines, I think she thinks I'm just taking time off because of a bit of pain, and I don't know what to do. I don't want to have the fight with the doctors I hear so many people complaining about, I Dolby even know if an official diagnosis would help, I can't stop the migraines and now I'm really worried I will lose my job.

Sorry for the rant guys. I've coped for so many months without making a big deal out of my fibro and just working through the pain, pushing myself to live as full a life as I can, but I'm sick of pushing, I'm sick of trying do hard all the time to have people I love and people I respect not even try to understand.

 
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Old 02-09-2013, 09:05 AM   #2
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Re: Lack of understanding, need some help!

Hi, I hear you on the frustrations. The one thing that sticks out from all that I have read is you are self diagnosed. As much as any of us don't like it, a diagnosis from a Dr can go a long way when you are dealing with work situations. It validates your absence
and gives a slight advantage to keep your job. Plus it could be something that has the same symptoms as Fibro.

 
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Old 02-10-2013, 06:02 AM   #3
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Re: Lack of understanding, need some help!

If your doctor keeps telling you you're suffering from 'stress' you need to find a new doctor who'll take you seriously. Once you have an actual diagnosis, then you have something concrete to show your employer. Until then, you have no protection - you could be saying anything you like...

BTW, next time your boss tells you to work through a migraine, she deserves to have you puke all over her desk, pass out, and have to be taken off in an ambulance, because obviously she's never had one if she thinks they can be ignored!

As for the neck pain, have you seen a specialist about that? A problem with your neck can cause migraines etc, and it might be able to be fixed/helped/treated.
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Old 02-11-2013, 07:03 AM   #4
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Re: Lack of understanding, need some help!

When I was reading your message, I felt as if I could have written it myself. It has been a rough time. I still have family tell me that "I have pain too but deal with it" or "I wish I could nap like you do and be lazy". It hurts to think they think I am just a weak person and not realize the amount of pain I deal with on a regular basis. I have a doctor that is 'working towards the diagnosis of fibro'. I guess on one hand it is nice to have one that wants to be thorough and make sure of the diagnosis but at the same time its frustrating to 'try' different therapies to rule out other things. Yesterday was a good day for me and I managed to get a lot of things done...like grocery shopping, my Walmart trip, cooking and preparing a lot of freezer meals (I find that these really come in handy for me on bad days!) for the crock pot. I had a friend tell me I was superwoman...no, I just do what I have to on the days I can so on the days I can't I am prepared. I have felt so much love and support from this group that it is the only place I feel that anyone understands what I go through on a regular basis. You guys understand brain fog days, all over aches and pains and an entire day in bed, migraines, spasms, and all of the quirky things that come with fibro. You guys are so wonderful and I am blessed to know that you are all out there but here for me when I need you! Thanks to all of you and heres to good days!


 
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Old 02-14-2013, 10:52 AM   #5
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Re: Lack of understanding, need some help!

So sorry I have the same problem with my family understanding....it is so frustrating!
My sister has MS and I lived with her at the time and took her place, helped her out all the time and recently at my lowest of lows she is cold and distant and seems so like who cares if your so weak you can't do anything it's always "I don't know what to tell you" or " get a hobby"...REALLY?! It's hard when the one person who is sick herself bails on you.
I too diagnosed myself yrs ago after soooo many docs, but I did finally get a formal diagnosis and finally got to a point that I couldn't work anymore.
I wish you all the best of luck!!
God Bless,
sufferann

 
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