Does anyone else think that Fibromyalgia is a disability?!
Question: I am in pain 24/7 and it controls much of my daily life. I have 3 kids and it is hard to care for them let alone myself. I have a injured right ankle that also prevents me from living a normal life so it is extra hard to live this way each day. I use braces for my ankle, hands, wrists and arms. I have used resources only to come up feeling empty I feel so alone in the world cause noone seems to understand just how disabling it is to be me. I am trying so hard to live a life and go to school so that my future is something worth living. I can't go to school full time so part time is as best as I can give and even then I am in so much pain and fatigue. I am on medications but they only help for so long. Does anyone else have a disabling illness and feel so alone in their daily life as well? I am so tired all the time. So sick of being sick, tired of being tired. How about anyone else? I am in my late 30's trying to accomidate for my many disabilities is so hard to do. Support group
Answers: I am in pain 24/7 and it controls much of my daily life. I have 3 kids and it is hard to care for them let alone myself. I have a injured right ankle that also prevents me from living a normal life so it is extra hard to live this way each day. I use braces for my ankle, hands, wrists and arms. I have used resources only to come up feeling empty I feel so alone in the world cause noone seems to understand just how disabling it is to be me. I am trying so hard to live a life and go to school so that my future is something worth living. I can't go to school full time so part time is as best as I can give and even then I am in so much pain and fatigue. I am on medications but they only help for so long. Does anyone else have a disabling illness and feel so alone in their daily life as well? I am so tired all the time. So sick of being sick, tired of being tired. How about anyone else? I am in my late 30's trying to accomidate for my many disabilities is so hard to do. Support group
Dear Dee 3.
I don't know much about your disability! But I sure feel for you. There has got to be someone out there In the medical practise who can at least point you In the right direction. You are at such a young age to be disabled soo much. I hurt for you, I'll make you a deal OK. I'll take as much of your suffering as God will allow me to do, Just to give you a break for a while. I can't stand to see anyone suffer, So please say a little prayer and I'll hear you, And I sure will answer It,
( I promise)
Fibromyalgia is a disease but it is not a disability. Pain is an issue to it but you are able to do everything without much help. For me, disability is when you need someone at your side all the time in case you hurt yourself accidentaly.
HONEY, YOU ARE NOT ALONE NOR ARE YOU GOING TO BE ALONE AFTER THIS. THERE ARE SUPPORT GROUPS ON LINE THAT I CAN GIVE YOU INFORMATION ON. I HAVE BEEN ON DISABILITY SINCE DEC. 2003.
CONTACT ME AT BAPTISM_BY_FIRE_2000@YAHOO.COM
I CAN GIVE YOU RESOURCE INFORMATION.
I have a family member with Fibro. She is also trying to juggle the stresses of taking care of herself, others, and her illness.
The best things she has done for her self was to get help! She joined a support group through the hospital, and she meets with others who have Fibro and other disabilities. They share helpful hints, uplifting stories, support for one another, and they also have discussions on the various medications they have or will be on...
You might want to look into any support groups in your area. If there aren't any, their may be ones online. Having someone to talk to that is going through the same this is very helpful.
Good luck.
I used to have a client who suffered with fibromyalgia. In answer to your question, it most definitely is a disability but keep fighting.
My client was not is as much discomfort as you. She had her good days and her bad.
She used to come to me for Pilates and found that the sessions really did help her physically. If you aren't aware of Pilates, it is a method of exercise that lengthens, strengthens and tones the body without adding bulk.
Try to find a good matwork class in your area. You can work at your own pace in these and won't get hot and sweaty.
I also have online Pilates based exercises that you can do from a chair. Have a go to see if it is your cup of tea
http://www.daily-exercise.com
yes sir it is!!!!!!!!!!!!!!!!!! i just went this week to sign up for my SSDisability. mine is so bad i caqnt stand to be touched when it is really actting up. the pain is not in your head it is real i have had it since i was in my late 20's and honey it has gotten very very bad now!!!!
Yes, Fibromyalgia can be disabling. The widespread body pain can be enough on it's own to force someone to go on disability. Most Fibromites do not go on willingly. As you, most of us try to go on with our lives - as normally as possible - for as long as possible. Usually, the disability comes when we are no longer understood by our employer, school or other entity. Employers have often forced the Fibromites hand in the issue by not understanding the need for time off or the abbreviated schedules often needed by the employee. Fibromyalgina is a disease which was recognised by Social Security Disability even before many doctors or pharmacuitical companies recognised it officially.
As for your day to day strugle, I suggest you get involved in a support group. It can be very healthy to have contact with other people who understand what you are going through. Many of us are devistated by the social quarentine we go through. It is not unusual for many of us to loose contact with our normal support group of friends and even family. We often hear -Hey, you look the same! What's wrong with you, snap out of it? You look great, are you feeling better? - These words can cut you to your very being, but most people with Fibro can not see it. It is one of several Invisible Illnesses that does not afford the patient the rightful attention it should. You are in pain and your pain is very real. You are not just tired, you are exhausted! I like to say, 'I am sick and tired, of being sick and tired'.
I hear your frustration and your pain. Please know that you are not suffering alone. Some people have Fibro for years before the devistation hits. Others get slapped into the real world immediately after a major life change or illness. No one can tell us with any certianty, why or how. They know that there are predispositions for the illness that we have in common, but each of us is triggered differently and the severity is different. My sister and I both have Fibro, non of our symptoms are the same. It is as individual as we are. This is one of the things that makes treating the disease so diffilcult. What works on one portion of the population does not for another. Please, don't give up and don't stop trying new things. All we can hope is that one day, they will find the right combination. Until then, we need to stick together and support each other. Good luck my dear!~~Mayr
Check out http://www.fibromyalgiasource.com for lots of information about Fibromyalgia, including my experience living with it.
Yes honey I do ! I'm 41 and i'm in pain all day every day. Other people that aren't suffering with it don't understand. Some days are good and some days are real bad.I've been in pain for along time and have tried alot of differant pain meds and stuff ,we just can't give up ! I do know that the water areobics at the ymca helped mine. I also stay warm and dry at all times otherwise. Try behavioral techs. like guided imagery and bio feedback. I have a program called Journey to the Wild Divine ,kinda game meets biofeedback.Helps train your brain so you don't focus on the pain.If we let the pain get us then we are done living and I don't know about you but i'm not done living(in pain or not)
Fibromyalgia is very much a disability-just like other disabilities you can see such as cerebral palsy-there are various degrees-from minimal limitation to beign completely bedridden.
I like teh ivillage.com message board for Fibromyalgia (under health/chronic helath)
even though the so called experts give flase info-the people with FMS are good-the experts claim it is a musculoskeletal conditon-when it is believed to be neuro by the researchers-they used to call it autoimmune-which also seems to be wrong