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Student w/ FMS looking for input
6 Replies
abattagl - April 12

(I have checked the rules and I hope I haven't missed something saying this isn't allowed.)

Hello Everyone! I’d like to be blunt for just a moment –
I am joining this forum because I am currently a graduating senior at a college and am doing an ethnographic research paper in which I need to interview and observe a number of people and put together my findings in an ethnographic study on gender and culture, and in my specific paper topic illness, in our world’s societies. I was hoping that a few people here would be interested in answering some questions and letting me follow their posts. As this is the internet, it is very easy to keep this all anonymous! No personal information such as full names or locations needs to be used in my study. I hope that by writing this paper, I can raise some awareness in my class and school about FMS, CFS and all of the symptoms and ills that come along with it.

That all being said, I am also joining this forum because I have recently been formally diagnosed with FMS and CFS (Summer 2010) after suffering with CFS and mild pain symptoms since my mid teens (I am currently 21 years old). Upon looking for support and information across the internet, I found forums such as this one. From my interest in helping myself while helping others with support, my paper topic was born.

I am not here to solicit anyone. I am here to gather information and support others and learn a thing or two about fibro, since this is still something I am adjusting to myself. If people wish to volunteer, I will post the survey and my email so that people can respond to me privately (Unless people want to post it here and share experiences with others).

Until then, stay positive, stay well and I will see you on the forums!
Lys

 

January - April 13

Hello Lys, I was wondering why you'd be interested, and then I got to the part about your own diagnosis. I want to COMMEND you for taking such a positive approach, and working to raise awareness about this syndrome. Most non-fibro/CFS people know next to nothing about it. Not sure from your post exactly what your paper topic is - illness as it relates to gender and culture? or something else?

I don't know who runs this website - but I'd say go ahead and post your survey and your email - I'm sure people will respond. You are welcome to read (and use) what I've posted. I'm a relative newbie, and I've found many postings here to be really helpful and informative, though we all take a somewhat individual approach to dealing with this illness because it's so different in everyone.

If you have FMS/CFS, making it through college is a special achievement, good for you! And welcome to the site!

 

abattagl - April 13

Hi January!
Thank you so much for your interest. I will post the survey shortly.

As for my paper specifically, our assignment was to literally write anything that would relate to gender and culture - very vague I know. While dealing with my diagnosis, I came across so many forums such as this one where people were talking about their day to day struggles to complete every day tasks, work and live up to roles. As I delved further, I also found differences between what men posted and what women posted. So my paper will focus on FMS/CFS - especially as an "invisible" illness - and how people cope with it and/or are received by others in our cultures. I hope that clears it up a bit! It's a little difficult to describe, especially since people's responses will shape the direction the paper takes.

Thanks again and thanks for the warm welcome!

 

abattagl - April 13

This is the survey. Replies can happen here or in private to email which is
lysFMSCFS at yahoo dot com

Replies can be as detailed as you wish. Feel free to omit a question if you feel uncomfortable answering. This is a positive thing and no one should feel stressed or uncomfortable answering. I truly hope that those who read my paper will understand what we go through. Thanks to those who reply.
Stay well, be positive. I hope everyone feels good today.


1) Name (Full, First name, Nickname or pseudonym, whichever you prefer):
2) Age:
3) Sex/Gender:
4) Country (No need to include state/region, just country):
5) Occupation or field of work (Remember, you can be as specific or non-specific as you wish):
6) How long have you been experiencing symptoms?
7) When were you diagnosed?
8) What is your diagnosis? (FMS, FMS and CFS, IBS, RA, etc):
9) Married or in a relationship?
10) Children?
11) Does/Did anyone else in your family have/had FMS or other rheumatic problems?
12) Have you told others about your diagnosis, such as family, friends and/or employers?
13) How did they react?
14) How do you explain your symptoms and/or diagnosis to others?
15) How has FMS affected how you do your job/performance at work?
16) What are some of your favorite hobbies? Have you found difficulty enjoying hobbies due to FMS or even doctor’s orders?
17) How has your diagnosis changed your attitudes about yourself or life? Has it changed anything?
18) Do you have difficulty doing tasks around the home?
19) Does this affect how you take care of yourself and/or your family?
20) Do your children, significant others, parents, spouses, etc have to help you with tasks you could once do yourself? Such as?
21) How often do you have to turn down social events or cancel plans you made with someone due to illness? How does that make you feel? Do you think the other party understands why you had to decline?
22) How do you feel about some of the treatments for your condition/s? Such as prescriptions, supplements, diets, specific exercise programs (such as Tai chi), etc? Do you take or partake in any of them?
23) How have the treatments or changes helped or hurt?
24) If you are on the fibromyalgia diet, has how it affected you? Do you feel constraints when it comes to social obligations? Has the diet helped?
25) Do you find it difficult to live up to public expectations, such as prescribed roles at work, in the family, in the home? This includes gendered roles, roles of strength at work, etc.
26) Please take a moment to think about public perception of FMS and CFS. Is there something you wish the public knew? Is there something about the public opinion of your condition that you wish you could change? What is it?
27) Please share something positive. Something that makes you happy or a small success.
28) Please share some advice, as if you were sharing it with someone who has recently been diagnosed.
29) Would you like to add or comment on anything else you are experiencing?
30) Are you open to receiving follow up questions if I have a question about one of your answers?

 

Fantod - April 13

abattagl - Welcome to the board! I agree with January - post your information and those people who wish to participate will do so. FYI you may have to break up the links that you want to provide on this forum. Just break them up and we'll figure it out.

Good luck with your project and congratulations on your achievements thus far.

 

lucky13 - April 13

1)Name: Tracy
2) Age: 30
3) Sex/Gender: Female
4) Country (No need to include state/region, just country): USA
5) Occupation or field of work (Remember, you can be as specific or non-specific as you wish): Collections (office work)
6) How long have you been experiencing symptoms? 4-5 years with pain, almost 20 for IBS
7) When were you diagnosed? 2008
8) What is your diagnosis? (FMS, FMS and CFS, IBS, RA, etc): FMS(2008), IBS(1995, age 15)
9) Married or in a relationship? Married
10) Children? 4, ages 12, 4, 1 and 6 mths old
11) Does/Did anyone else in your family have/had FMS or other rheumatic problems? Restless leg syndrome runs in the family on my mom’s side, so does arthritis.
12) Have you told others about your diagnosis, such as family, friends and/or employers? Family
13) How did they react? Mostly supportive, some were non-believers at first, but then came around.
14) How do you explain your symptoms and/or diagnosis to others? I tell them to imagine the last time they had the flu, no energy, tired, achy all over. Then I tell them to imagine feeling like that every day, because that’s what it’s like to live with FMS
15) How has FMS affected how you do your job/performance at work? It makes some tasks more difficult. I had a bad flare last week and felt as if I couldn’t climb the 1 flight of stairs to get to my office. Typical office work is hard and cause extreme pain in my hands.
16) What are some of your favorite hobbies? Have you found difficulty enjoying hobbies due to FMS or even doctor’s orders? I enjoy traveling to car shows, or going to sporting events, but my fatigue makes me dread getting out of the house.
17) How has your diagnosis changed your attitudes about yourself or life? Has it changed anything?
18) Do you have difficulty doing tasks around the home? Yes, housework can’t get done, feeding my infant hurts my hands.
19) Does this affect how you take care of yourself and/or your family? I don’t let it affect how I take care of my family, but I do put myself and the things I enjoy on the back burner for my family because the FMS makes it difficult to do everything.
20) Do your children, significant others, parents, spouses, etc have to help you with tasks you could once do yourself? Such as? Yes, my son helps me by loading and unloading the dishwasher and cleaning his bathroom, my kids have to pitch in to straighten up things in the house, vacuum and sweep. I hate that I have to have help, but after working all day, I can barely do anything else (especially when I have 4 kids to care for)
21) How often do you have to turn down social events or cancel plans you made with someone due to illness? How does that make you feel? Do you think the other party understands why you had to decline? Yes I have had to cancel plans, I feel bad when I have to cancel on my family (mom and brother), I think they try to understand, but not sure to what extent they really do. I also don’t attend as many car shows with my husband that I’d like to because of my pain and fatigue. I sometimes get discouraged because I can’t do the things a 30 yr old should be able to do.
22) How do you feel about some of the treatments for your condition/s? Such as prescriptions, supplements, diets, specific exercise programs (such as Tai chi), etc? Do you take or partake in any of them? I hate taking meds, and refuse to take pain meds. I enjoy yoga and have thought about taking up Tai chi, but with working full time, and 4 kids at home, it’s hard to find the time (again putting myself on the back burner)
23) How have the treatments or changes helped or hurt? The antidepressant I am on seems to help somewhat, but not completely, not sure if the yoga helps.
24) If you are on the fibromyalgia diet, has how it affected you? Do you feel constraints when it comes to social obligations? Has the diet helped? Have not tried the diet
25) Do you find it difficult to live up to public expectations, such as prescribed roles at work, in the family, in the home? This includes gendered roles, roles of strength at work, etc. Absolutely! I am a wife and mother, so I should be able to be wonder woman, come home from a day of work, cook a meal, help the kids with homework, and bathes. Do some housework and then get up and do it the next day. Not in my life, I don’t have the energy on a good day for all of that, let alone if I have a flare, forget it.
26) Please take a moment to think about public perception of FMS and CFS. Is there something you wish the public knew? Is there something about the public opinion of your condition that you wish you could change? What is it? I wish people wouldn’t assume that we are healthy just because they don’t see anything wrong. I also wish that people would stop doubting FMS and its diagnosis. FMS being invisible sometimes makes life a little harder, the judgment and dirty looks from people thinking that you are faking your pain or being tired.
27) Please share something positive. Something that makes you happy or a small success. My kids make me happy, if it weren’t for them, I’d probably not even get out of bed most days.
28) Please share some advice, as if you were sharing it with someone who has recently been diagnosed. Find a good, knowledgeable Dr, a good rheumatologist, one that takes you seriously and will listen to and address your concerns. Be your own advocate, speak up and do your own research. Things constantly change so don’t stop learning about FMS.
29) Would you like to add or comment on anything else you are experiencing?
30) Are you open to receiving follow up questions if I have a question about one of your answers? Yes

 

abattagl - April 15

Thanks so much, lucky13! Your response mean sso much to me.
I identify with a lot of things you said, actually. When I flare up, I can barely climb a step or two. I am struggling to currently find a 1st floor apartment. And I put myself on the back burner too.. I should be doing tai chi and doing light exercise, but I can never find the time with all of my coursework and helping friends in the theater. I really understand!

 

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