fibromyalgia,anyone got it

@doormouse (4619)
February 9, 2010 5:55pm CST
i've had it for at least 5 years,and even though it's quite common,i've never met anyone else with it,which i find quite odd,if you have it please reply,just out of curiosity i'd like to know how many mylotters have it
3 people like this
9 responses
@alaskanray (4638)
• United States
12 Dec 10
I guess I'm going to have to resurrect this discussion. I was diagnosed with fibro in 1994, after my daughter was born. I had just been through the pregnancy from H*** and never recovered. When I went to my doc complaining about the pain, he actually said, "Well, you know, as we get older, we get little aches and pains." I was 36 for heaven's sake! He diagnosed me with the fibro and put me on ketoprophen and flexeril, once a day, and left me on it for two years. After two years I started having episodes with my heart every day. Flexeril is a muscle relaxant. I thought, my heart is a muscle. I stopped taking the flexeril. I have met a lot of folks who have the fibro...in my real life as well as here on mylot. One thing I have noticed is that a lot of them don't have the same severity as I do or it doesn't affect them the same way. The thing that really bothers me is that my body can no longer build stamina. If I exercise to build stamina, I actually lose stamina. I get unreal fatigue and when the fibro flares up I literally cannot move. I ache from head to toe. Also, stress can put me in bed for three days before I can get up again. I'm talking about stress like being yelled at or getting frustrated over a situation. In addition to the fibro, I also have osteoarthritis, degenerative disk disease and coccydynia...all of which combine to preclude my ever having a normal lifestyle again. I spend a lot of time in bed and have to watch the amount of exercise I get because it is so easy to overdo and then I pay. They have recently classified fibro as a form of arthritis. If arthritis is of the joints, fibro is of the muscles. Not all fibro sufferers have the chronic fatigue that I have but it is a part of the disease and can be present or not. Fibro affects many people different ways and can be less or more severe in any individual. I know for me it has made my life a living H***. I recently had both my knees replaced and with the first one I had many complications...a hematoma and an abscess...and it took forever to heal. With my second knee, it healed up really quickly and well but it has affected my fibro and arthritis and I still have pain. I hope with time that will clear up as my body gets used to the new knee but in the meantime I have to worry about fibro flareups. The thing about this disease is that if you don't have it, you cannot begin to fathom how painful it can be. I had a boss one time who could not understand when I couldn't move and that job lasted a whole week. For a long time I was able to pace myself with work and home because I drove school bus which gave me four hours between runs in the middle of the day so I was able to take a nap if necessary. I also had my summers free so I was able to relax enough to keep my fibro under control. Now between the fibro and other conditions I have I have become permanently disabled and I hate it. I'm trying to raise a teenage daughter on my own and she has no sympathy or understanding of what I'm going through...such is life! She fails to understand that when she stresses me out it brings on a fibro flareup. I have not noticed any connection with the weather but I do tend to hibernate when it gets really cold out, simply because I've become a total wimp in my old age. I'm 53 now and have been living with this since I was 36...the better part of 20 years. Now I try to go swimming at least once a week because in the water is the only time I am pain-free. During the summer I can go to the lake but during the winter I have to go to the motel's indoor pool here. Last night my daughter and I got into it over her schoolwork and grades and failure to do her chores and now my whole body is on fire and I can't make it to church because of the stress. I can't tell you how many times I have said, "I can't do this anymore." Then I pick myself back up and go on. My house is a mess which adds to my stress but I am unable to clean it as I would like which also adds to my stress all of which really makes for a lot of pain for me. This is a nightmare. Can any of you relate? How does your fibro effect you? Do you get the fatigue? Do you ever reach the point where you just want to throw in the towel? I have several theories about what helps and what hurts. What do you think?
1 person likes this
• United States
12 Dec 10
I usually keep hydrocodone on hand for when I feel a flareup coming on but am currently out. Since I have no more refills, I need to see my doc again to get some more. If I'd had my hydrocodone on hand last night, I'd have taken it then and circumvented this flareup. I'm glad you've found something that works for you.
• United States
10 Feb 10
Hi! I was just diagnosed with FMS in November 2009,by a Rheumatolagist at the Mayo Clinic in Rochester, MN. My own doctor wasn't sure what to do with me so she sent me off to the specialist! Now that I have actually been diagnosed with it, I think back and realize that I have probably had this for many years! I'm 50 now, and can always remember having terriby cold hands and feet, feeling depressed, achy etc. I don't want to make this a pity party post, but since you have it too, you already know how much fun it can be! I can handle the day to day aches and pains, but when I have a flare up, I can't get out of bed, really. I can't move, unfortunately my bathroom is down stairs from my bed room so I have to force my self out of bed and believe me, its not a fun trip to make when every part of your body aches! I have had three of these episodes since being diagnosed, and who knows how many times it has happened in the past before I realized what was happening to me! I've never met anyone else with it either so, maybe you can share with me, how you feel? Do you notice if the weather affects your symptoms? Do medicines help you? Are you on any meds? I'm curious also! Thanks for sharing! beesugarpie
@doormouse (4619)
10 Feb 10
i don't let it bother me,if you dwell on it you feel worse,my M.E affects me more than my fibro,yes weather does affect me,the cold makes me hurt and the heat makes me very tired and i get lots of headaches,i've tried meds but none seem to work,but i do use wrist,ankle,knee and elbow supports if i'm in too much pain,i've also been known to use crutches and a walking stick in the past aswell
1 person likes this
• United States
12 Dec 10
Beesugarpie, I would never be able to handle it if my bathroom were not handy...I would be getting a bedside commode just for my fibro. My heart goes out to you, hon. I live in a mobile home and my bedroom is right next to the bathroom. I have had many modifications done to my trailer, too, to make it more compatible with my mobility restrictions. I put a handrail in my hallway, grab-bars in my bathroom and a ramp down my front porch. I keep Vicodin (hydrocodone) on hand for my flareups. I found that if I can anticipate a flareup and take the Vicodin the night before, then I can prevent the flareup altogether. Of course, I don't always anticipate and then I'm in the same boat as you...unable to move when I wake up. One thing that I have found is that stress really exacerbates the fibro so guard against getting too upset. Talk to your doc about it, too. There are always new meds being produced out there and you never know what might work. My doc tried me on some meds that I reacted badly to so I just stick with the Vicodin. You need to pace yourself and not try to do all that you used to be able to do, too. Be gentle to yourself, hon, and kind. Best wishes and hugs!
@dawnald (84471)
• Shingle Springs, California
10 Feb 10
20 glorious fun-filled years...
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@doormouse (4619)
10 Feb 10
i find mine quite entertaining,especially when i have a nerve go in my arm,and the sky remote goes flying out of my hand
2 people like this
@dawnald (84471)
• Shingle Springs, California
10 Feb 10
I haven't had that happen, just back pain...
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@Lakota12 (42607)
• United States
10 Feb 10
I was told that I had it back in 99 and got shots in shouolder to releive it which after awhile it has stopped hurting but then I have to watch out not to do repetitive work as it was work related. from running drills and sanders and doing the round and round motion. I might have been diaognoised wrong for other peoplle I know really suffer along time with it
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@doormouse (4619)
10 Feb 10
getting a wrong diagnosis is quite common with fibromyalgia
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@Lakota12 (42607)
• United States
11 Feb 10
yup the way they told me was I had muscles on my muscles and the shots tok them down and infamation all gone. Heck the Doc. wanted to replace my rotor cuff and it wasnt even hurting any where near it!
1 person likes this
@ElicBxn (61189)
• United States
10 Feb 10
I've got it, I've met others who have it, but I do live in a large city... There's better than 50/50 chance I got it after the car accident - in 1972
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@doormouse (4619)
10 Feb 10
they're not sure what caused mine,possibly either my 3 c/sections or my abusive relationship with my ex husband
2 people like this
@ElicBxn (61189)
• United States
10 Feb 10
they aren't sure anything causes it in some cases Mine is probably aggravated by my acute food allergies... All I can say for sure, is I've felt ROTTEN a LONG time now...
1 person likes this
• United States
10 Feb 10
doormouse, I just sent you a post, I don't know where it went but, anyway! Yes I have FMS also, was just diagnosed with it in Nov 2009. I've thought about it and realize I have probably had it a very long time, it just didn't have a name back then! I'm 50 years old and have had most of the symptoms of this illness since I was in my teens! WOW! Never knew what it was before! I'm wondering how much the weather affects me, I live in SE MN and it's always cold here for me, people laugh at me in the summer, I always seem to have a sweatshirt handy, I tell people once it gets below 80, I'm puttin on my jeans and sweatshirt! Thanks for sharing your thoughts! beesugarpie
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@doormouse (4619)
10 Feb 10
i have great trouble controlling my temperature,most of the time i'm in little skimpy tops and jeans
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@GoAskAlice (5168)
• Antarctica
10 Feb 10
Hi doormouse! Have you seen the fibromyalgia interest? It's here: http://www.mylot.com/w/lists/9_4424/default.aspx
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@doormouse (4619)
10 Feb 10
i took a quick look at it,but i'd rather not keep discussing my illness,that's why i don't post there,i was just curious how many mylotters have it
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@coffeeshot (3785)
• Australia
10 Feb 10
My Grandma had Polymyalgia, I"m not sure what the difference is.
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@doormouse (4619)
10 Feb 10
i was told the difference is,polymyalgia can go,but fibromyalgia is life long,,not sure how true it is though
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@GardenGerty (140357)
• United States
10 Feb 10
I do not have fibromyalgia, but I will comment that I have met lots of people online who do, and have other illnesses as well, like Epstein Barre and Crohn's disease. I think MyLot is much better than a website dedicated to one disease. In a way it is dedicated to wellness, and wholeness. That is why it attracts so many people
@doormouse (4619)
10 Feb 10
i was on a disability website,but didn't like it as all everyone spoke about was there illness,how boring
1 person likes this