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TaylorAilehsNash posted:
Hi, my name is Taylor. I am twenty years old and got diagnosed with fibro last year but I have dealt with it for many years but docs just thought I was out for pills. My family does not believe in fibro and honestly I didn't either. I denied it and thought it was docs just being to lazy to find out whats wrong with me. But over the past year it has gotten so much worse that I cannot deny it anymore. It has ruined my relationship of 6 years. It has caused tension with my family. It is truly miserable. I'm mostly angry at my lost youth, I've never been able to hang out with friends and go do normal teenage things. On top of that I can't hold a job. No meds have worked or even come close. I live in Alabama and sexism is still very much alive here. Doctors assume that because I'm a woman that I have low pain tolerance and I should "suck it up". I'm tired of not being able to support myself. My parents are against me applying for disability and I believe they would disown me if I did. Besides how am I suppose to survive for the two years it takes to get it? I feel completely alone. I can take the pain, but the skepticism of those who are suppose to love me is what hurts the most.
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dollbug responded:
Hello Taylor and welcome....sorry that you are dealing with so much at such a young age...I am curious does anyone else in your family suffer from dealing with FM?
Do you have brothers and/or sisters? Any relatives who have it? If you do, perhaps you can speak to them about what they have found that helps them cope...of course, someone might have it and just think that it is a part of the aging process..

I would encourage you to be sure and ask your doctor to check your Vitamin D level...which is so important to a lot of people these days..low Vitamin D can cause additional pain and it can also affect other illnesses as well. This is just a simple blood test....BUT you MUST ASK the doctor to check it...as it is not included in the normal bloodwork that the doctors do..

As far as disability...since you are so very young...you have not worked enough to actually draw anything from your own benefits...which is what SSD is based on. Perhaps you could apply for the SSI though...check with your local SS Office about this...I think actually I read one time that under a certain age a young person can only draw from a parent's SSD...but I do not know if this has changed.,

As far as you getting enough to live on...that is probably not going to happen. It is not designed for people to actually be able to live on...with today's expenses.

People do not understand the wrath of the dragon, aka FM and just how bad it can take a toll on people's lives....family nor friends normally get it...unless they also have to deal with it.

I hope you will be sure and check out the info under *tips* and *resources* that you will find to the right of this page. There are some good *tools* that others have found that has helped them cope better...

Know that we all understand what you are dealing with and we know just how hard things can be....hang in here with us and I am sure you will find something that will make your life a bit more comfortable...

Take care and good luck..


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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endomchelle replied to dollbug's response:
Hello Taylor. I am so sorry to hear of your turmoil. It may be helpful to find a support group in your area. I felt very much like you & when I joined a support group, it opened up many avenues for me. Fibro is a chronic disorder, so it never really goes away. There are ways to fulfill your life and live with this condition. Some days are bad, some are good. The person who diagnosed you should be helping you with treatment plans. A lot is trial and error. You also need to find something that makes you feel good. Friends, Hobbies, your church/faith institution etc. Don't worry about the non-believers & non-supporters. Some people are skeptical, ignorant, non-compassionate. When you feel like you have no control over the fibro, remember you do have control on how you feel about the inner self.
 
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TaylorAilehsNash replied to dollbug's response:
Thank you very much for your post. No one in my family has it to my knowledge but I don't know my biological father's family so it's possible someone on that side does. The doctor that actually diagnosed me checked my vitamin D and I have been taking that. But unfortunately he moved his clinic to a distant area so I've been trying to find someone closer to home because long car rides exhaust me. Luckily I live in Bama so living expenses here are laughable. I recently had a new friends mom who has FM tell me about her doctor who is close to where I live so I'm crossing my fingers on that.
 
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TaylorAilehsNash replied to endomchelle's response:
I've recently come in contact with someone that has FM also so I'll likely be turning to her for advice. I've also forced myself to start doing the things I enjoyed doing before my FM worsened (in moderation of course) I really appreciate your kind words. It means a lot to me.
 
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1wareaglefan replied to TaylorAilehsNash's response:
Hello, Taylor....Taylor is my granddaughter's name..love it!

Anyway, I'm so glad you've met someone with fibro, so you can talk to them and get some support. I hope the doctor visit turns out to be a good one. Finding a good fibro doctor is a challenge, unfortunately. But if someone is recommending him, that's a good sign!

Have you tried giving your parents info on fibro to read? Hopefully they would do that for you. Maybe even take them to your doctor's visit to explain to them what you're going through.

I hope you'll continue coming here with questions and all. We understand how you feel.
 
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thenikki64 responded:
Taylor, hang in there, girl! I am much older than you, but I also come from a stoic southern family. I am saddened that your parents aren't able to emotionally support you right now. I agree that if even just one of them is willing to learn more about FM, get them whatever information you can find. Perhaps you can check out a book from the library on FM.

Definitely be as socially and physically active as you can be. It helps the mental attitude and the body. Finding the right doctor makes a world of difference! Maybe one of your folks would sit in on the visit and listen to what the doc has to say. Worth a try.

If you can get your symptoms under control, then you have a better chance of finding a job, even just part time, that you can manage. Not only will that make you feel better about yourself, but financially you can help yourself and your folks.

Try not to be too angry or depressed about your parents' reaction. I have had more than 1 doctor tell me it was all in my head, even though they could see abnormal nerve conduction tests, etc. If some doctors still don't believe in FM, it should not be surprising that laypeople don't either. Parents have hopes and dreams for their children, and when they see that slipping away, many of them don't know what to do. Frustration and lack of understanding can lead to some pretty nasty reactions. My stepson with whom I am very close actually 'ran away' after he tried to tell his mom and dad he didn't want to go to college. They wouldn't listen, so he sold his truck and left town, not telling any of us where he went. It took my husband and me 3 months to find him. He is now happily a Marine, has a great relationship with us, but his mom couldn't handle it. He does not talk to her because of all that, and it saddens me greatly.

My point to all this is please don't shut your parents out. Give them as many chances as they need, as much patience as you can muster. Do as much research as you can to help find what will give you some relief. The toolbox on this site is great. There are also posts from other young folks. Perhaps you could start a Youngsters with FM thread:) As hard as it is, keep trying, and know that this board will always understand.
Pam in Savannah, Ga
 
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TaylorAilehsNash replied to thenikki64's response:
Thank you both for your replies. I'll try to educate them the best I can, but they have both been to appointments with me and just brushed them off. At one point my doctor told my father that it was like having the flu all the time without the fever. It was hard for me to accept me having it and I have to look it in the mouth everyday when they only see it when I allow them too. I've been brought up to think that pain is a weakness and not to show it so I try my best to act like everything is fine. I'm sure in time they will come around. I've actually had a really good day today. I love it when I have days like this. It almost seems like a blessing sometimes because we can appreciate what others cant.
 
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taxlady49 replied to TaylorAilehsNash's response:
I hope you have had a few more good days. You might talk to your dr about possible depression regarding your condition. When I finally got my drs ear about how painful everything was he suggested a antidepressant. There are many out there and a lot of them have been around for a long long time, but it only took 3 days with the one he gave me to get my pain back to a decently tolerable level. I have had very good luck with more than one of them, not at the same time, and am without pain most of the time. There are times when I realize tooooooo much stress as the pain breaks through, but at least I am able to function, even on those days, because I know that the meds will help..... good luck to you, you must learn to work through all that happens, regardless of how you feel, otherwise you will spend your life feeling sorry for yourself. You are much stronger than you realize. Continue with finding good things to do and try to find something that will give value to your life, regardless of how you feel. Positives are what counts....
 
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Shilo43945 responded:
Hello Taylor, I don't think I can say anything more or different than anyone else on here, but I want you to know that you are not alone. It broke my heart to hear how your family won't accept your condition. I've been very blessed to have a family that not only understands, but strives to help in many ways. I just wanted to respond and let you know that there are many others out here that hear you and care.
 
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AnnaJacobs responded:
I've had huge relief from fibromyalgia from a combination of l-carnitine (half teaspoon morning and evening, and it takes 1-2 weeks to start working) and magnesium. 4 magnesiums a day, mostly dolomite tablets, as you need calcium to digest magnesium.

I really feel for you, but I've got over chronic fatigue syndrome (otherwise known as ME) and fibromyalgia to become a world class novelist with nearly 60 novels published.

Try everything you hear of that sounds reasonable. Something will work for you.
 
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Laquince responded:
I am so sorry to hear of your suffering. I am a chiropractor and my protocol is to treat the root source of your fibromyalgia. I utilise a specific protocol to address the fibrotic tissue called Sedative Physical Medicine whereas the patient is put under light sedation and then a team of chiropractors stretch the involved muscular system to actually break up the fibrous tissues that are inherent in your muscles, ligaments and tendons. You then go through a six week recovery program whereas you will EWOT or exercise with Oxygen therapy. Yes you finally will be able to move because all of the fibrous tissue will have been loosened up and the EWOT helps to prevent the fibrous tissue to rebuild. The final step is a natural approach to correcting any faults that you have with your thyroid whether it is hyper or hypo active.
 
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gammygam responded:
Hi, Taylor! This is my second attempt at posting a response. Although I have visited this sight often I have never replied to anyone before, and not sure which button I pushed on the computer but my response disappeared. I am so sorry that you are fighting doubly hard - having fibro as well as having to deal with your family's nonsupport. I can't help you with any advice on supporting yourself financially. Wish I knew what to tell you!

Anyway, I just love the way many men still believe that women have low pain tolerance! I love my husband of 31 years to death, and even he admits, after teasing me a bit, that if it were up to men to repopulate the earth and give birth the human race would have died out years ago! I am much older than you, but was formally diagnosed at age 30. I went to a rheumatologist who was wonderfully understanding, especially because VERY few physicians knew anything about fibro back then! Now that they know a little more about possible causes (physical and/or emotional trauma) I believe that my symptoms can be traced back to when I was 23 and pregnant with my first child. At 35 weeks along my appendix ruptured and our baby and I almost died as it took hours for them to correctly diagnose me. Now I am a very happy grammy to my daughter's two fabulous children, but I think that trauma started me on the fibro path.

Okay, I agree with other readers that there are wonderful tips in the toolbox, but I would like to tell you some things I have learned for myself. First of all, be kind and gentle with yourself. Acknowledge that even if others do not understand, you know how you feel during a flare, and you need to treat yourself with gentle kindness. If you are tired, and you are at home, take a 20 minute nap. I fought that for a long time until I realized that giving myself permission to do what I need to do to be kind to myself made my pain a little less severe. Learn to say no to others with no apologies. If you are flaring and are exhausted and in pain, just tell people you can't do whatever it is they are asking of you. My kids would be laughing knowing I was advising this because I am just learning how to do this and I am 53. Reserve your good days for things you really care about. Don't overdo (and I agree with you - those lousy days make the good days so much more precious!) and be prepared to get more rest the next day. Exercise gently - take gentle walks in nature if you can. Read good books or watch a sitcom - do what makes you laugh and feel better. Schedule things for the times you feel best. I try not to make appointments like parent conferences early in the morning as I never know how long it will take for my muscles to loosen up! It is hard when those you love don't understand - and I am sorry that they didn't even understand when the doctor explained that it's like having the flu without the fever. Everyone should be able to relate to that.

I had a wonderful friend I worked with who also had fibro. She was my fibro friend who would give me gentle hugs when I needed them - and I hope I gave her comfort too. We would explain to the other teachers (I taught grades 3 and 4 and now teach kindergarten) when the fibro fog and stiffness and pain was at it's worst. Now with sites like this you can find support from many people.

I did try medication (Savella) that worked for awhile, but the side effect of hyper-sweating was awful - especially because I have hot flashes already! Yikes! If I have a bad flare, though, I might try it again.

I hope it helps to know there are those of us out here who know what you are going through! Maybe your family could meet with the family members of the friend you mentioned you met recently?

Good luck - be kind to yourself. You are not alone. Allow yourself to get angry at the fibro once in awhile, too. Just don't get stuck in that anger - acknowledge it and move through it. I will try to follow the posts to see how you are doing!
 
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TaylorAilehsNash replied to gammygam's response:
I appreciate all your posts very much. I'm doing a little better, I hhave and appt with a new doctor in September so I'm hoping she'll be the real deal. I took cymbalta and it didn't do anything eexcept make my bipolar disorder worse, so I'm worried about taking anti-depresents. I think it's something that comes with time for a while I was very depressed just because I felt like I lost my youth but I've realized this is the hand I was dealt and I must make it what I can instead of whining about it. And if someone can't handle it then they aren't the person for me. I think in time my family will come to terms with it it's probably a bit of a loss to them too. To think you're child is in pain and there isn't anything you can do about it would probably be very hard to deal with. But having support from other people helps me not feel like I'm crazy and there's nothing wrong with me like I've been told for many years. This means a lot to me it really does.


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