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How Long Have You Had Fibro?
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tremendousbrunette posted:
Hello Everyone,
I have not yet met anyone who has had Fibromyalgia as long as I have. I am sure there are others who do though. I was diagnosed at 19 with what my doctor thought was acute myo anxiety, problem was my symptoms are anything but acute. I am in my 27th year of having this condition or disease or disorder.
I treat it with a variety of lifestyle techniques, I make sure my diet has mostly fresh food nothing processed, nothing with lots of dyes, preservatives, fatty foods or high amounts of sugar & fried foods. The salt also left my diet I use Salt Sense and swear by it because I developed HBP at 40. I also have a Hypothyroid, so I take 3 maintenance medications, 1 for each condition. Daily stretching followed by mild exercise like walking or swimming when I can helps a great deal but I am always looking at the new information available to see if there is more that I can do. Besides pain points sensitivity I also have deep pain in my back, abdomen, shoulders, neck, poor sleeping patterns, regular fatigue, sensitivity to hot & cold and most uncommon my muscles get spasms all over my body. As if this isn't the worst when my symptoms onset I also find I have periods were my muscles do not operate like they should as if they are over used and have no strength in them. Look for fun things to keep smiling like most of you I have bouts from time to time with depression.
What do you do to live daily with fibromyalgia? Let's share so we can each benefit from what each other is doing to live with this condition, because over the years I have been an FDA Ginny Pig for medications. I want a good quality of life without having to be a test dummy for drugs. I taught myself how to deal with fibro fog so I can continue to work everyday since Social Security does not recognize Fibromyalgia as a debilitating condition. I refuse to be labeled depressed because I work and care for myself. Most of the time I am emotionally and physically spent & it seems as if I am the only one who cares however I am private about my condition because of the stigma society has put on Fibromyalgia. Some of my symptoms have worsened over the years and I am concerned that the day will come when I am no longer able to care for myself & that scares me to death for this is about the only thing I am afraid of in life. If the doctor on this page is reading please tell me what happens in the long term with Fibromyalgia do we know yet? Please I need to know.
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Lish2007 responded:
I am very sorry you have had this for so long. I know it's very frustrating. I, being 27, haven't had it quite that long, however i have had the symptoms since i was very young..(10 yrs old approx)..But was only diagnosed 3 yrs ago. My mom has it and has gone thru many different stages of it, good, bad etc. She's going on almost 35 yrs with it now.

I have tried several different medications and so far nothing seems to do the trick. I am on Savella and Tramadol now.
It seems that yoga, light walking or stretching seems to do the trick for me to keep from completly stiffining up or being completly out of commission.
On especially bad days, i use heat packs or soak in warm or hot water with Epsom salt.

I have created a facebook page recently to post new websites, links or just pictures or anyting i come across that could help out. If you'd like to friend me on it, simply put in my e-mail address in the search bar on your facebook account and it should pop up with my name. fms.cfs@hotmail.com

I found over the years as long as i do some sort of excersie or stretching everyday, i seem to be descent, most of the time.

I really hope you can find something that will help your symptoms. You have found a great place on here, the people here are so kind and helpful!!

Soft Hugs~ Alicia Haslett
 
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forgetful88 responded:
They told me about 3 yrs ago, but I don't believe I have it. The only pain I get every know & then are the bad deep thigh muscles aches. That's it. I use "icy hot patches" for that when they do hurt, & its only at night time. Now if they ache during the day I take OTC advil, aleve. I do get fatigued, but suffer from insomnia really bad. To me is a left over symptom of when I had graves disease. Sleep aides don't work for me. If i truly have fibro, I will nor do I complain, because I see what 99% of this boards goes thru. I do suffer from i believe IBS but I think that is due to me being clincially hypo. The only vitamin I take is B12.
 
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Socialwrkr responded:
Hi TB

Sadly on this page, there are several who have had fibro longer. My symptoms started with a bang when I was 7. I stopped trying to figure out what was wrong as a teen but was then diagnosed about 12 years ago now. I'm currently 39.

Your info on how you manage the symptoms is great. I would invite you to add it to a thread we have in the Tips box. It's the Orange box on the right, the thread that says FM Tips, living with FM Toolbox. That's a long thread where many of us have included our coping techniques and then we guide newbies there to read it. Its' been very helpful for the board.

Also, just as an FYI, SS does recognize fibro now as a possibly debilitating disorder. There are a few here who have been approved. It is very difficult to still work, so I applaud you that!

Hope to see you posting more. If you want Dr. P's attention, you would need to start a new thread with his name in the title. Then our moderator emails all of those to him. He's so great, answering us a couple of times a week.

As to your question though, I can say that as research is finding out more and more about fibro, it's so hard to say. Each case is very different and I think a big part of being able to be independent throughout life comes with the things you already do. The healthy eating, good management of symptoms, mild exercise are all great precursors for being able to manage the fibro, instead of the other way around.

Take care
Be Gentle on Yourself!!! ~~Aimee
 
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An_198952 replied to Socialwrkr's response:
Hi Everyone

I am 50 years old (feels like 80) and have had FM symptoms for at least 30 years. I remember my mother taking me to see a Dr. about severe fatigue when I was a teenager. I would fall asleep at the dining table. Would this have been FM?

I have been on SSD for 8 years, due to back issues. Because of the back problems and FM, I threw the towel in! Totally gave up!!
My body and mind are both currently shot!

I am, however, currently working on some major life changes, like starting a mild exercise program, eatting healthier, fully educating myself about FM, and incorporating vitamins, minerals, supplements, and herbs into my diet. I do feel a change for the better.

I have been abanded by my husband, mother, father, siblings, and freinds. I know I need to reach out and establish new relationships, but that may be way to hard for me to do.

I hope and pray that someday I will be independent again. To be in control of my mind and body. To take care of myself financially.

Always remember, the mind can accomplish great things!!
 
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Socialwrkr replied to An_198952's response:
Anon 21709

I just have to say something. Your first couple of posts here where so overwhelmed with the hurt you have endured. I was so saddened to see all you have been through.

And then I saw you see that maybe there is a good lifeline here for you, a chance to learn some new things and definitely to make some new friends.

And then this post... you actually sound like you have some hope back! Oh I so hope you do. I hope you know you are already a part of the FMily and I hope you come here every day to learn a little more, give a little (as I'm sure you have tons to offer too) and that each day finds you healing.

This group of men and women is the kindest, most knowledgeable and supportive group of people I have ever known. And I'm just so glad you found it!
Be Gentle on Yourself!!! ~~Aimee
 
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booch007 responded:
You beat me, but I have had it too long as far as I am concerned...IT IS FOR SALE!!!!! Nancy B
 
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An_198953 replied to Socialwrkr's response:
You know - I do feel hope! I feel like it is time for a change. I feel that maybe I have accepted FM and all the damage it has caused in my life.It is time to move forward!

Am I really typing this? Wow, this feels so strange!

Thanks for your support and kind words.
 
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Grampa_Bear responded:
Hi T.B....

Gotcha....I'm clicking over 33 years this summer...time flies when you're having fun, eh? - NOT.

From my observations....FM won't kill you, just make you wish it would, and I'm not being glib on this either.

My policy with FM has been the same for the past couple of decades...."I do what I can, when I can, if I can...anyone who doesn't like that....too bad, they'll get over it".

Hang in there...you've found a good group here...very supportive and helpful.

Take care of you,

Jim
Bringing Faith to the Doubtful, Doubt to the Faithful, Comfort to the Afflicted, Affliction to the Comfortable and Funk to the Funkless.
 
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georgia888 responded:
Hello TB,
I can relate to just about everything you've written about. You are doing a wonderful job with your treatment plan. I am 54 & have some osteoarthritis which combined with the fibro is not only painful but scarey. I often feel a pulling sensation within my muscles & fear that I will become crippled. I also fear the future as I've always been fiercely independent and live alone with my two cats. I have looked everywhere online to see how fibro affects the aging but find nothing on the subject. My former financial planner told me one of her clients had it & was in a wheelchair at 80. I've read on this site where a few much younger than that are in wheelchairs. I think you & I need to continue doing all the right things for our bodies & fight this battle. The only med I take is low dose (25mg) amitriptyline. I tried going off it & worse pain returned with a vengence. Do you take any meds? I continue to work but wonder how long I'll be able to. No one at work knows of my condition although I sometimes just can't hide the stiffness when getting out of my chair & difficulty walking at times. I believe Social Security does now recognize fibro & age & having other conditions along with the fibro can help one win a case. I guess I'm holding out as long as possible.
This site is so therapeutic for me. I don't share my fibro with anyone but the doctors & we all know how most of them just don't get it. It's hard not to be obsessed with our conditions because we hurt in some way all of the time. Again, continue eating right, taking vitamin & mineral supplements & doing regular light exercise & stretching.

Best wishes to you.

georgia
 
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Thomasinaa replied to georgia888's response:
Hi everyone
I have had Fibro for just over 20 years, officially, but also feel I've had it a lot longer than that.

Georgia, I am 54 also and have just recently been diagnosed with end stage hip arthritis on my right side and am waiting for a total hip replacement. My Doc couldn't figure out my groin pain and I went to a physio therapist and he figured it out in 5 minutes... Fast forward... an xray told the story... I was shocked as this all happened within a one year period.

As a result of the advanced Osteo, my fibromyalgia has flared up something awful. I got to the point where I had to move into a room of my own, as I was keeping my husband awake alot.

Right now I take 900 mg of Gabapentin, 50 mg of Amitripyline, 5mg melatonin, fluoextine 20mg, for the Fibro and for the Osteo, 200 mg of Celebrex, and tyelnol as needed.

I stopped working 5 years ago as I just couldn't handle a full day and would be so wiped out by the end of each week that my weekends would be spent just resting to get ready for the next week. I was fortunate to get approved for disability first time around.

I live a very quiet lifestyle and have to rest every afternoon, otherwise I'm a wreck in the evenings. Even with the rest, for me it's a warm bath around 8 each evening and then bedtime by 9. Even then, I wake up some mornings so tired.. the fatigue has never left me....ever...

I hope and pray for all of us FM sufferers... It's not a picnic and yes, my social circle is now pretty well Nil.... folks just get tired of asking me to do things and get bored visiting... Oh SIGH...

Thanks to the internet, my isolation factor has gone down alot.
 
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TCL38 responded:
My uncle is in his 47th year. In that time he has had over 30 surgeries and is also suffering with leukemia. Other than that he's as fit as a fiddle. You'd think with all of that he'd be worse off than what he is but to look at him you'd never know. He's still active as much as his FM will let him be. It's a pain but he still lives life on his terms. He's my hero.

If I live to his age I will have FM just as long as he has had it.

My daughter is 16 and has had it since she was 11 so if she lives to be his age she will have had it for 67 years!!! She's my other hero

Tanya
 
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tremendousbrunette replied to georgia888's response:
hi georgia,
I take Klonopin it eases the spasms my muscles give off from stiffness that is my only med. You are right we all need to keep together. When first diagnosed I took a 250 mg soma compound and a 5 mg Valium every 4 hours and could not function. I was a teenager fresh out of high school.
So I began to experiment with diet and exercise and medication so I could work and take care of my self. I think most of us are private about our FM.
 
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exhatfield responded:
I got Fibro when I was 11 after falling off a horse and broke my tail bone. I know my entire spine was jacked up after that fall.

I have several friends from Fibro support groups that are on SS Disabilty, the one of course was a Lawyer so she was able to fight it, if you can get a Lawyer who specializes in SS cases you might be able to fight the system?????

I'm doing the same as you are - light exercise every night before bed, lots of walking and keeping active, the less active I am the more I hurt. I only take Gabapentin for restless leg syndrome and sometime Melatonin to sleep (but it knocks me out so good I don't want to get up). I also have to take water pills (Hctz) to keep from retaining water and swelling up! I rarely take anything else and haven't had health insurance for awhile so I have to self medicate so I do what I can. Diet is the best help right now!

I have severe stomach bloating which I can't find a cause for. I stopped drinking pop/soda - Nov 2008 and that seemed to help. I avoid anything unnatural if possible. I eat a lot of homemade foods and fresh fruits and vegetables. Exercise and activity is what I've found to help the most with any of the pain! Now if I can find a cure for the lack of energy that would be awesome! I haven't had coffee in over a month!
 
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tgteresa61 responded:
Yes, I have had fibromyalgia for 6 years and also have migraines. It is most frustrating to deal with but somehow I manage to keep going. I mainly walk for exercise, do stretching exercises and do meditation/relaxation exercises which help with the pain.
I got off of the one antidepressant I was on because I was having such terrible side effects from it including short term memory loss.


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