Fibromyalgia Community

Hello, my name is Teresa and I thank you very much for posting your comments about being dissabled.....I find that most people who do not suffer from any dabiltating everyday issues do not understand,,especially the social security system...i too have filed for ssi benifits and still waiting for a reply..in the process I feel like I am a usless person and cannot contribute my share to the world..all I can do in my world the same as you--take care of my husband and home the best I can everyday...so I really thank you for posting your opinion. It makes me feel that I am not alone anymore.....please have a great day and God Bless

I misspoke in my last comment with regard to sleeping positions. While lying on the back, the pillow should be placed under the knees (not under the lumbar region of the spine). This helps take weight off the spine.

Again, I hope this helps!

georgia

FIRST I HAVE TO SAY I AM UP SET THAT THESE RESPONSE'S MAKE ME FEEL THAT YOUR SAYING IF YOUR HANDICAPPED OR DISABLED WE SHOULD FEEL ASHAMED,WELL I AM DISABLED I FEEL DISABLED I HAVE A HANDICAP STICKER AND I AM ON DISABILITY,AND I AM NOT ASHAMED IT IS NOT MY FAULT. I HAVE FIBRO, CFS, MIGRAINE HEADACHES ,MENIERE'S IBS ,ACID REFLUX ,ANXIETY, PANIC ATTACKS,OCD.MOST DAYS I WISH I WOULD NEVER WAKE UP, SOME DAYS I HAVE TO WEAR SUN GLASSES IN THE HOUSE ,I HAVE BLURRY VISION AND FIBRO FOG, AND PAIN EVERY WHERE, AND CAN NOT PICK UP MY GRAND CHILDREN OR LIFT A CLOTHES BASKET, OR GO OUT OF THE HOUSE,I CAN NOT SLEEP ,AND SO DIZZY I HAVE TO HOLD ON.AND I AM NOT GOING TO GO ON BECAUSE I SHOULD NOT HAVE TO EXPLAIN ANY THING TO ANY ONE ABOUT HOW BAD I FEEL EVERY DAY, I PUSH MY SELF AS MUCH AS I CAN AND WHEN I CAN I APPRECIATE THE LITTLE THINGS LIKE TAKING A SHOWER AND LOOKING AT THE BLUE SKY AND THE BIRDS SINGING WHEN MY RINGING IN MY EARS WILL LET ME, I AM GLAD FOR THE ONES WHO CAN FUNCTION SO WELL THEY DO NOT NEED A HANDICAP STICKER,BUT DO NOT MAKE THE ONES WHO DO FEEL LIKE THERE LESS THEN A PERSON, MAY GOD BLESS US ALL.

Hello, I have all the things you mentioned in your post. I applied for Disability in Dec. 2011. I am not ashamed at all, I am acually mad that Fibro. had to come into my life. It not only affects us but our family and whatever friends we may have. It isn't our fault. I am with you on this. Sending many Blessings your way. I hope you are having a low pain day.

Sweetie, I am sorry to hear the pain you r going though. I'm 29 years old and yet I know the feeling oh too well. I have ringing from time to time in my ears, there's days I can't get out of bed or even walk, back outs, can't pick up my little girl anymore, it's hard to drive when all u do is see spots or you have blurryness is all you can see, tummy always doing flips and that feeling of always like your going to throw up, I as well have IBS, reflex, gastiritus, sorry dont know how it's spelled, tremors, migraine headaches, dizzy spells, freezing all the time,numbness and tingling in hands feet and legs,ADHD. The pain is not fun at all and not feeling like I once did. Last January I came down very sick within 6 months I dropped 150 pds and been in the hospital twice. Blacked out down 12 steps and hit my head. Been on two heart monitors since July. I have had so many test done, blood work, mri's, CT's, EKG's, X-ray's and tones more. I feel as if I live in the hospital's and Doctor's offices.Been wanting to know for so long what's really wrong with me I have all these things that they say is wrong. I Was able to keep up with 9 people in the house all by myself before I got sick. Now I can't even take care of myself or remember things do any of the normal day stuff. It kills me that I can't even take care of my two kids how r 9 and 5. I feel some days that they would be better off without me. I know I shouldn't think or talk like that, but there's a lot of days I feel as if I have failed as a mother and a wife.Finally after my heart Doctor saying hey look she needs to be checked out by a rheumatologist that he thinks that I could have Fibromyalgia or Lupus. I got my doctor after telling her over and over again that he said I need to get into one. She sent to one. I started Savella 2 days ago and seen the Rheumatologist for the 1st time today. She said I got Fibromyalgia. She took lots of blood and did X-Rays of my hands but I still don't get y the the X-Rays of the hands, she want's to rule out the Lupus. As well she said I need to get into Orthopedic Doctor again for my should I had Surgery on back in 2010. After she looked at my new mri and talked with another doctor they think I tore more in my arm. So when will people understand how I feel and why did ssi denied me? But I do have a lawyer that has taken the case. Now I pray they can win it. I feel as if I can't will. Sorry I keep going on and on.

I am not dissabled but my twin and I both know we won't work until retirement age. We just know we can't. I have not even been diagnosed with anything yet. I don't want to either. To have a name to put to what my body and mind have gone through in the last coupe of years would be comforting. At least then I would know where to go from here.

I have an enormous respect for illnesses that we can't see. If people can't see what is wrong with you they too often think nothing is.

I'm 37, I have worked 50-60 hr weeks from 18-30, lots of odd labor jobs before that to buy my own clothes when since I was about 13. I'm going on 20 years of factory labor work it pays good and I live close to work. I have it better than a lot of poeple do so I am greatful, but fearful for the future. I don't even catch cold but what seams to be Fibro has changed my life in the last couple years.

My mother has terrible fibro and threw in the towel long ago. She has no fight left in her. She has a morphine pump and is 87 lbs, and a heavy smoker. If she gets a cold it's pnumonia and a ER visit. One of my aunts has it and degenerative arthritis. She was the fun wild auntie when we were kids who would take us for a weekend and spoil us. Her once powerful spirit is all but gone as well.

Some days I am scared to death I won't be able to support my family. I will fight as long as I can, it may be a couple years, it may be 40, I just don't know, but I'm not giving up. I will just keep trying to work smarter and not harder.

Our town still has most of the original sidwalks from the early 1900s. The main street has hadicapped and vision impared crosswalks. It's a step forward.

Xperky put it very well:

We really need to support each other, care for our neighbor, help those who need it, and generally love one another. Compassion is wonderful...pride and judgment, not so wonderful. It takes daily mindfullness to move in the direction of compassion.

Dear Caprice:

I wanted to respond to your question about feeling disabled. I was diagnosed with Fibromyalgia in 1999. My left knee swelled up so bad I couldnt walk and had to use a cane for three months. I was only 33 years old, an avid rollerskater and ddancer, and very active. It took the doctors years of poking, drawing blood, thinking I had lupus and multiple sclerosis, to make a diagnosis of Fibromyalgia. Well, I was also diagnosed with arthritis so I have a double wammy. I have irritable bowel syndrome, fibro fog, depression, and chronic fatique syndrome. I have worked since I was 14 years old and have been experiencing difficulty with working for the past 8 years. I am now having problems with feet pain to the point that I cant walk or stand for long periods of time without the severe pain in the feet. To make a long story short, I suffer from pain all the time and am trying to work. I filed for disabilty twice and was turned down twice. However, I know people with the same diagnosis who have gotten disability. I still hear the common statement from doctors, "you are too young to have anything wrong with you". What the heck does that mean? People at any age can have a disability. I was given a handicap decal for my vehicle by my rheumatologist because there are days that my legs and feet hurt so bad. I have been aapproached by strangers who have confronted me about parking in the handicap spot even though my decal is in plain view. I am afraid to answer the question on job applications aabout having a disability because the state that I live in is not consumer friendly. In addition, I have carpal tunnel syndrome in both hands (had surgery on one and may have to have surgery on the other soon) and am in constant pain. I have recently began counseling sessions due to my depression and chronic pain (I too am a licensed counselor). People, including ddoctors, have a hard time believing that we are in pain. They look at you and you seem to be healthy and they make judgments. Most believe it is all in your head, especially if you aare a woman. There are some days where I have to rest most of the day, and then there are good days. THE PAIN IS REAL!!!!!!!!!!! It has impacted my social activities and how active I used to be. People, including doctors, need to be more sensitive to people with chronic pain disorders like Fibromyalgia. It is not in our heads and the pain is real. What ddoes being young have to do with anything? It is very difficult to go from an active person to one who recognizes that there are some things that I can no longer participate in. When I bump my knee or my arm the pain is excruciating. Filing for disability is a joke in the state that I live in. I sought counseling bbecause my pain has gotten worse and it has impacted my ability to be a productive person who is used to being employed. Most people do not understand our illness and even the medical profession still has misguided information and a lack of compassion and understanding when it comes to Fibromyalgia. You would think that with all of the new medications to treat fibromyalgia, the medical society would be more accepting. I reside in Georgia and I can honestly say that this state is not very friendly to those with disabilities. Recently a man with a seeing eye dog was kicked out of a popeye's restaurant because of his dog. Absolutely absurd. Many believe that if the disability is not clearly visible, there is nothing wrong with you. I beg to differ. Not all disabilities are visible to the naked eye. In summation, Fibromyalgia is real and for some of us, severe. No one person is alike or experiences the same level of pain and/or symptoms. We need to be treated with respect, dignity, and compassion. But most of all we need people to believe what we say and how we feel. Nobody knows us better than ourselves and the pain that we are feeling. People with Fibromyalgia are not lazy and our pain is real!

Hi Fibroreality and welcome here!

You shared your perspective very well!

I hope you'll continue to post here on the community.

I know exactly how you feel. I am in chronic pain everyday and night. I have IBS, chronic fatigue syndrome, insomnia, carpal tunnel syndrome, and arthritis. I have been turned down for disability two times and have tried to work since. However, I have been let go of jobs due to missed days at work. I am afraid to inform employers of my medical condition when I apply for jobs because Georgia is not an employee friendly state. I have recently begin to suffer from depression and have sought counseling. There are so many people, including doctors, who believe that we are "faking", and that makes me upset. Hang in there.

Caprice:

Thank you for your response and I will continue to be an active participant in this community; it is very much needed.

I am 32yrs and I have pain all over my body and it seems like it get worser by the year. I worked since i was 15yrs and right now I cant work like i once did My back ache my arms shoulders legs and toes the back of my neck and my hips. I was diagnosed with fibromyalgia about 6 yrs ago and my doctor said i have neuropathy too in my feet and legs from diabetes I wish it was something that could be done because I feel like i cant make it sometimes its hard to walk and just walk in the store to shop for my family.

Hi thereTNDixChix Sounds to me that you and myself are almost in the same boat other than myself having vertabrae problems at the base of my back and again up to the top of my spine. I am unfortunately on Disability not that it iss any big deal. When I am able to doing h/work, vaccumminng etc. I feel it the next day. So now I limit myself on the bigger cleaning and usually my son will help me out very well. I am on Humira for the P/Aas well as psoriasis break outs. I find that it works well once it is where it needs to go. Although I shouldn't do this, I can get alot more done after receiving the meds' and injecting myself.They list many side effects which I am sure many would turn their back and run, however I have none of these but they have to list it alll. I hope you yourself gets some alonne time and dont' just jump into something to quick. I call these baby steps, only because again, you know the pain will come back on you. If not the second day but thereabouts'. I do hope you do take some me time. Stress is a big issue with P/A. so pick a day out of every week and tell the family "your on your own" as much as this seems mean to yourself or them, the fact remains there. Take care of yourself and hope to hear fom you again!!

I am new to webmd, but have gotten some great information from here in the past and decided to join to maybe get more understanding.
I was diagnosed with Fibro 2 years ago. I am also being monitored for MS leisions on my spine as I show the physical symptoms of it (the shakiness, eye issues, and other visible to the common person symptoms) as well as other disorders that show the same symptoms. I pray that Fibro is the worst thing I get diagnosed with, but they are still watching.

In answer to these questions I do think of myself as disabled, but not the can't work type. I work 30 hours at my local Wal-Mart. I am a boy scout leader who camps, hikes, and does everything else my boys do. I am a wife and mother. I am disabled in the literal defination of the word, meaning I am not at the normal level of ability for someone my age. I have a disability because Fibro can't be called a good thing, but I still fight through the pain and do what I want and need to do, even if I am slower most days than most people.
I chose my username because I was in a car accident in January (which hasn't helped the symptoms any and they now think I may have a heriniated disc as a result) and I was in a sling for four days because I severely injured my right shoulder. I worked anyway, I folded clothes, hung clothes, put away boxes of clothes and other things (i worked in clothes at the time in case you couldn't tell). I had my work done in four hours in a sling and it took the other girl working my department 8 hours to get half that amount of work done. My manager started calling me superwoman because he is lousy with names and felt that if I was that good I diserved the name. He still uses it because he sees me limping, and working one handed when the fibro is worse on that side of my body and other obvious signs that things aren't working normally and I still get help for customers faster, keep up with my work, and keep up outside work AND balance the two (though it doesn't feel like it to me).

I have a cane that I do use sometimes when my legs are the worst. I refuse to use it at work though and I can't even explain why. I use it at home and when I am doing a large amount of hiking for scouts (though I also have a walking stick that I use more often for scouts). I am 29 years old and use a cane, the electric carts at stores, and other assistance as needed and get yelled at by older people for it. I was once told by a 70something woman that if she can walk through the grocery store I should be able to too. I said that I had a medical reason for needing help and that not everyone can be blessed to make it to her age without needed something to get things done. She didn't like it but she didn't say anything else about it. There are a lot of people who seem to think that using wheel chairs, canes, walkers, and other devices are for the 50 group and that it isn't right to see people under that using it unless they are former military, born deformed, or paralyzed for one reason or another.

In my community it is true that work needs to be done. They closed down one grade school because there were too many stairs and it would cost too much to make it handicap accessible. The major stores are all on one level, but some of the older family owned ones are not and have a "most of our stuff is on the first floor so if you can't get up to the second one, oh well we'll find it for you if it's up there." The handicap bathrooms in two grocery stores and a farm supply stores are always out of order and no one seems to know why, but it makes it hard when I'm having a bad day and need that support bar to balance with and I can walk into the stall. Wal-Mart does have a handicap accessible fitting room and it is the only store that sells clothes that does.
Well thanks for reading and I hope I can learn from these discussions and maybe help someone else.

Linda,
I have only been dealing with Fibro for 2 years, but I agree that if I quit than I wouldn't live. I've had days where I've thought "okay, I quit, get me the wheel chair, I'm done" but than one of my kids falls or a couple comes into Wal-Mart looking for a wedding set (I work at the Jewelry counter) and I help them get it and I realize that if I were in a chair I couldn't pick up that injured child or dirve him or her (I have one of each) to the doctor if necessary or reach the counter or most of the jewelry in the cases at work. There is a policy at work that if I were to need a wheel chair they couldn't fire me or let me go for it, but I couldn't work where I enjoy working either. I then talk myself out of it. It is a constant fight that noone really seems to understand unless they have Fibro too. Thanks for sharing and my community probably won't improve in my lifetime either.

My mother has FM and RA and has got a disability sticker and when I drive with her I thank God she does on my bad days. It is so much easier when we go somewhere and I can walk a short distance. I don't have one myself because my doctor says that he doesn't want me to consider myself as disabled until I am at least 40, but the car accident I had in January has made him reconsider the idea of needing a bit less of a walk into work or to the store because of severe back damage on top of the fibro. I don't like the idea, but if it will keep me from hurting as much or as soon as I do now than I am all for it.