Fibromyalgia Community

Welcome to Terobar and all newcomers here,

We're sorry for your need to be here but glad that you found us. As you can see, you're not alone.

I encourage each of you to say hello on the board so the community can find you and support you.

To start your own new discussion to do just that... hold your cursor over the orange Post Now button on the upper right and choose 'Discussion' from the drop down menu which appears. Fill in the subject line and body of the message (you can ignore the poll part if you want) and Submit.

Hi All - this is my first post on an online site, but I am intrigued by all your comments. As a Brit, our understanding of what disables people may be different to yours in the US, but the bottom line is that Yes, I do think my diagnosis, my chronic fatigue and the pain that I experience daily disables me. However, this doesn't mean that I am broken, useless or cannot work. I have started a business with other disabled people that enables us to support each other and introduce the various access requirements that each of us need to work - anything from suitable chairs to flexible working hours and so on. For us as disabled people, we believe it is not the condition that disables us, but the barriers we meet daily in the society we live in - that could be stairs without a lift, inaccessible buses and trains, bad workers policies in organisations that can never work for us and so on. I do feel for those of you who find that your local providers and councils do not provide for your needs. Why not challenge them so that you begin to remove the stigma tha 'disability' clearly has in the US?
Look up the 'social model of disability' on the internet and ask your national and local government to meet your requirements, so that disabled people can challenge stigma, gain their dignity and have a fulfilled life with a real job, volunteering opportunites and access to all areas of the society you live in.
Best wishes from the UK !

The question posed was if our chonic pain and fatigue are disabling us. To be determined disabled by the system or file for disability is a bit different. When I filed for disability I was only asked questions regarding whether or not I could hold a job of any kind. Every question was related to putting in a full work day. I already answered earlier that I could not be a reliable employee. Pain meds limit my driving, pain and fatigue limit my abilities and my lack of concentration would be unacceptable in today's marketplace.

In saying all this, I am not a useless person. Taking care of my home on my terms is what I'm all about today. I used to work outside the home and keep up with the household but now I find that keeping my house clean, doing laundry, weeding, unloading the dishwasher, changing bedsheets, cooking and whatever else, takes all of me. Even my hobbies such as knitting have days that are ignored because of hand pain.

I have fought with the useless feeling but I have to stop and look around at times and remind myself that we have clean towels, clean clothes folded and put away, clean dishes and food each day. I may not be going on interviews for jobs and helping financially but I'm successful in taking a load off my husband as he goes to work each day. I am blessed to have a husband who doesn't mind grocery shopping with me or driving to run errands, as most days I just don't feel confident driving but as I walk through the stores to do what is necessary, I get that very needed feeling of accomplishment.

Yes, I am disabled in regards to outside work but no, I am not useless.

unfortunately do feel i'm disabled because i cannot work with this illness or surf like i used to. it has taken things i love from my life. sometimes the exhaustion is unbearable. luckily the lyrica helps a lot with the pain, however there are so many parts of my body that still ache with pain everyday. i only have one more year of disability so it scares me that i have to go back to work. i don't know how i will deal with the job and the stress and the illness.

ccinw: Why dont' you apply for disability from the government and get social security and medicare?? that way you don't have to worry about getting a job? There is no way that I can work, and I understand how you lost the joy in your life. People define themselves by what they do, even if it is a domestic goddess just like PC. I cannot do even as much as she does. PC puts me to shame. I am good for a couple of hours a day, and then that's it. My husband cooks for me because I cannot stand long, and he does most of the shopping too. my social life has bottomed out because I can't keep up with my friends, and really don't want to talk or go out with them. I just end up counting the minutes until I go home and can rest. The worst part of this is all the weight that I have put on due to the inability to exercise. I can't STAND the way society treats you if you are overweight. Like I CHOOSE to look like I do?? Like I CHOOSE to be in horrible pain every day and night of my life?? If I get five or six hours of sleep, I consider that a miracle, and a great night. Most nights it's just two or three, because of the pain. There is nothing more that can be done, and believe me I have tried EVERYTHING from the west to the east and back. The best therapy that makes me feel the best is massage, and guess what? It's not covered by insurance. Great. I can spend all the money from insurance on useless therapies, but the one that helps the most, they won't pay. Coming out of my pocket is too much. Then I would have to decide between insurance or food or massage. I need the massage at least twice a week for it to work. Otherwise it is not worth the money.

Disabled, yeah, proud of it? no, but that's how even the disabled look and ask questions about you.

Hello Caprice and All ~

I am new to the discussions or forums. I was diagnosed with FM several years ago, at the age of 30. I have quite a few other life altering diagnoses also. But I have lived with chronic pain since my teenage years. Somehow, I made it through college and worked on a very busy hospital unit as a RN for a couple of years. It was very hard on my body though.

Then I married a wonderful man and was able to quit working. A few years later, an adorable son joined our family. But, we have had a nanny ever since. This makes me feel guilty. But, I can not keep up with an active child, a home, cooking, etc.

This past year, I had a major flare up that has lasted for months. Besides excruciating pain, the fatigue and total lack of energy is debilitating. Most days, I am doing good just to make it out of bed! If I happen to make it out of the house, it's a miracle!

I am not technically considered "disabled". But I know that I could never hold a job as a RN again, and I don't know what job I could handle. Besides having a nanny, my husband has taken over most of the household duties - cooking, laundry, grocery shopping, etc. He even has to drive me to my doctor's appts now.

So, I may not be technically "disabled" ~ but I sure feel it! The hardest thing is accepting it. Before this year, I have always pushed myself ~ even through the pain and fatigue ~ until my body finally put a stop to it. I still tried to be as active and involved as possible. It's hard to accept that I can't do things anymore. That I can't make plans ~ because most likely I won't be able to keep them. That I can't help others anymore ~ because I need so much help myself. I feel like such a disappointment!

Another hard thing is that people don't understand. I guess because I have always pushed myself, people just act like there shouldn't be anything wrong now. Because FM doesn't make me "look sick" and my husband says that I have always been too good at pretending like everything's okay even when I am in excruciating pain, people don't take my illness seriously. It's really hard when I have been the one who has always been there for everyone else (even when feeling horrible), but no one seems to care at all that I can't even get out of bed.

I am thankful for a wonderful, sympathetic husband (I know that's more than a lot of people have) and for a darling, sweet son who doesn't hold it against Mom that she can't run and dance and play like others can.

I guess that I need to accept what life has given me and focus on the positives.

I don't get out much at all right now. But, I think that most of the places we go are "disabled friendly". I'm sure that there are a lot of improvements that could be made though.

Thanks for "listening". My thought and prayers are with each one of you. Sadly, I know that hugs most often just hurt. Blessings to each one this Christmas season and in the New Year.

Hi Blessedmommyofone and welcome to WebMD!

Thank you for sharing your thoughts on this topic and so much of your story.

I hope you'll also say hello on the board so others can spot you and support you. To start a new discussion, hold your cursor over the orange Post Now button on the upper right and choose 'Discussion' from the drop down menu which appears. Fill in the subject line and body of the message (you can ignore the poll part if you want) and Submit.

Hi, Blessedmommyofone! Like you, this is my first post. While I can relate to most every post, yours resonated especially loud with me.

I was diagnosed with tendonitis and bursitis in my teens. When I was 28 years old (19 yrs ago) I was working for a Family Practice doctor and first read about CFS. I told everyone then that I had this disease. No one took me seriously.

As the years went on, my pain got worse and worse. I was diagnosed with Osteoarthritis more than 10 years ago, but not given any treatment alternative other than pain pills. Like you, I had a very busy life and refused to go down that road. So I continued to suffer.

I'll spare you the details of the last 10 years but I will sum it up by saying that reading the symptoms of Fibro now that I've been diagnosed is mind blowing. I am a text book case.

I, too, was a "go getter"; always seen as the gal who had it all together. I'm known for always being dressed and coifed to a tee and for being the first to volunteer for most anything.

Am I disabled? Yes I am PHYSICALLY. I just completed my application for disability. I'm praying that my approval comes swiftly.

As much as I hate to admit this, there are times when I am mentally disabled. As you know, having your life turned upside down is depressing!!! I am VERY well known for my positive outlook on life and strong Christian faith. I have struggled tremendously with the realization that "down" days will come when struck with this level of life change.

Before I close I would like to share one more thought. Most of us have suffered from symptoms for years. Perhaps you have suddenly taken a turn for the worse and don't understand why. That's where I was a few months ago. I understand now, that trauma can push you over the edge, so to speak.

My daughter got married on May 14, 2010. To say this was a stressful time would be a HUGE understatement. Her now husband's mother has Bipolar Disorder and is not currently on medication. She made our lives hell before, on, and even weeks after the wedding day.

After the wedding on Saturday, I went to bed and did not get up again until Wednesday. This was the first "flare" I'd had of this level. I use this to get the point across to friends who don't understand the fatigue level. When they hear that I went that many days without bathing, they KNOW I must be in bad shape! LOL

Five days after my daughter's wedding, my 18 year old (and only) niece was killed in a tragic car accident. Based on conversations from the day and witness reports, we have reason to believe that her fiance caused the accident. The police did not find enough evidence to convict, however. My niece left behind a beautiful 8 month old daughter. As I type this post, my sister is being challenged for custody of her granddaughter by the same fiance. I am the person my sister turns to for help with the baby and for mental support.

The day we buried my niece, Joplin, Missouri was struck by a devastating tornado. I live in SE Missouri and am very active in ministry and service. Because I didn't realize yet what was happening to my body, my husband and I joined a team and headed to Joplin 8 days after the tornado AND burying my niece.

While I do not regret that trip and will forever be changed by what I saw, my body simply wasn't ready for another traumatic event. The ride home in a van full of people was almost more than I could bear. Again, I was bedridden for days.

One night weeks later I read my first FM/CFS blog. When I read that trauma can be the thing that pushes a long time sufferer to the next level of severity, I burst into tears. Talk about trauma!

My family is becoming more understanding every day. I've lost friends, tho. After my niece's death and my worsened condition, I was devastated to find that some friends thought I was "self absorbed"! I'm sure I don't have to tell you what that did to me. I'm better now mentally thanks to real friends, family, and faith.

Sending love to all

I am new and I say Thank You Anon_160275 -I am disabled and my professional,social,family ,and personal life has been severely affected this syndrome called fibromyaigia. I have a hard time typing right now and I know these posts are older but nI had to say Thank You...

Taken over my life and soul. I have many other health issues making it twice as hard. Have CFS and just took an on site test your knowledge. CFS can be as disabling as MS and heart failure. Stunned me. What about the fibro?

Hi Caprice,
I am glad I found this topic! I have been reading other's post and sadly I seem to be the only one who has been appyling for disability since 08. It has been one of the hardest things to accept. I haven't been able to work for four years. I have tried to work, but my pain is limiting. I am 50yrs old and have not only fibro but lower spine problems and neck problems. So, I am catagorized with chronic pain. I raised three kids and worked since I was 14yrs old...my life is a mess. I tried going to school and finishing my degree but my memory is awful and its hard to sit and my school is accomadating, but sometimes there just isn't any accomadations that help. With my neck and back its impossible to sit and focus. I suffer from severe depression and anxiety also...with the kindness of friends I have been allowed to have a place to live. But my independence is a big thing. I just signed up for voc rehab and I am hoping they can help. I find it disturbing that some people can fool social security and get benefits, I have known two people who faked bipolar so they could not have to work....one read up on the symptoms and one takes the meds and is so out of it, he is not functional but yet I take many meds and have long documentation and still can not get ssi or ssd. Did I plan this, NO!! I have always been a strong woman, but I feel my fight is giving up. I did notice another post similar to my loosing my balance, why is fibro linked to this? I have fallen so hard I collapsed a disc in my neck, and this causes horrible headaches. For anyone planning to file for disability I would not recomend it for fibro, it is not one of their qualifying conditions....I do have a cane and I hate using it, most days I don't. Anyway thanks for posing your question on disability...good topic!!

You make some really good points! I live in Oregon, and I am on the medicaid program. It is odd how fibro affects people.Some have it way worse than others, and some are hardly affected. I live in a damp, cold winter, and it kills me. I also have a really bad back, nerve problems etc. I don't have a parking permit when I asked my previous doc she said I didn't need one, my current doc I have not asked yet. I do have a cane, that I rarely use. BUT my point being is YOU are so RIGHT about the treatment. I do not qualify to get even PT. I definatley can not afford it. I have no income. I filed for SSD/SSI four years ago, and still denied. I am 50 and worked up til four years ago, when I finally realized I couldn't work. I am on some heavy meds for chronic pain, and meds for fibro pain..neurotin. Insurance companies (i have worked for one) don't care if you need something....but you can do an appeal. I don't know if you have tried...alot of people don't. But they will review your case, and sometimes will allow your treatment....With my insurance they don't. I could have the nerve burned in my back that causes alot of pain, but my insurance won't cover it. They also won't cover my pt for my lower or upper spine....which would be beneficial for my wellbeing. But, rather they will cover narcotics which help, but in the long term, I need hands on. It doesn't make sense...good luck and you make really good points!!

Welcome to our Fibromyalgia community, Walksoftly and all who are new here!

I didn't thnk of myself as really disabled until a little over a year ago. All of my conditions have gotten to the point that they work against each other. I was diagnosed with Spinal Stenosis last year. Added to acute Bursitis in both hips, Osteoarthritis-knees-back-hands-neck, Diabetes,Fibromyalgia, Veinous Insufficiency, Neuropathy, Foot problems. It all has become too much. I can't sit or stand for any length of time. There isn't a good position laying down either. I have had to move in with one of my daughters & her family. I try to stay active but it's hard. I know that I need to walk but it is extremely painful. My balance is compromised at best. I'm only 58--way too young for all of this!

A positive attitude keeps me moving most days. I have daily stretching excersises which help some but not enough. When I have a major fibro flare it is ten times as bad. Any suggestions or coping strategies?

Hello spcosc,
I'm sorry to hear of all your suffering. I share some of your conditions, spinal stenosis, osteoarthritis of the hip, knee, spine & neck, & of course, the lovely fibro, which brings us to this most helpful web community. I was diagnosed with the fibro 4 years ago & since, the arthritis has progressed creating more pain & less flexibility. The fibro exacerbates the arthritis. I am 56 years old.

As you well know, every day is a challenge. I no longer work as my job was a desk position & sitting for too long is unbearable. My new full time job is managing my health. Staying active is difficult but we must push ourselves into motion. Last spring I joined a fitness club that has an 89 degree therapeutic pool. I visit there every morning
& feel it helps me mentally & physically. If this is feasible for you, I highly recommend it.

I also perform stretches & simple yoga throughout the day. I think this could help you with your balancing issues.

I can understand your feeling overwhelmed by it all. It's hard not to think about it when our bodies are in a nearly perpetual state of discomfort. I fear the future but try not to dwell on this by living in the moment.

With regard to sleeping positions, are you aware that it's wise to place a pillow under the lumbar spine while on your back or between the knees while lying on the side?

I hope this helps you some. Before closing, I should comment on diet & nutrition. Keeping our weight down is a must with regard to the arthritis & for general well being. A balanced diet with supplements of calcium, vitamin D, magnesium & others listed in the tool box section are also very important.

Best wishes to you.

georgia