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mshears

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Nov 26, 2014
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5
Reason
DX FIBRO
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00/0000
Country
CA
State
ON
I wish we could find a cure right now.
I'm 24 and I've had fibromyalgia since I was 15 and I am so so tired and everything feels so hard. I've wanted to make movies for as long as I can remember but I just don't know if I can take any more stress because it makes the pain worse. But not doing what I love feels terrible and everything about life with fibromyalgia feels so exhausting.
I know that everyone here must be feeling this way, how do you cope? What makes you feel better? I don't really feel like looking forward on to a life where apparently there is no cure to what I have and nobody even believes that it's a real thing.
 
I am so sorry for how you are feeling. My daughter is sixteen, and has fibromyalgia, CRPS and CFS/ME. She spent a year in bed, and couldn't even do schoolwork. There are several ways that we cope. When doctors didn't help us, we helped ourselves. There are many people who believe fibromyalgia is the real thing, and that's mostly people who have it, and people who are close family and friends to someone who has it. They helped us. The told us about their experiences with doctors, so that we knew our experience was typical, and they told us what else they did that helped them. We found one thing that helped, one little bit. The first thing was accuptuncture, with infrared heat and electrical needles. Then, we found something else, that helped a little more. Then something else. She tried different diets. She took different supplements. She changed schools to a virtual school. Then we started looking into genetics with 23andMe, and found some better supplements, and got a lot better about taking them regularly, and she started getting more energy back. There was a low point, when she totally froze up and couldn't move, and I went to the ER, and they said "we don't treat pain" and turned me out on the street with a child in pain, with no help. That's when I realized that the doctor is not the place to go for help, in some situations. Sometimes, we find our answer somewhere else. I had no choice that night, so that's what I did. And, that's what we did. We didn't find a cure. But, we found one thing, and then another, and then another, that helped a little bit, and when we put it all together, it helped a lot. And, since we got this far, we know we will keep finding things that help.

I posted some of what we're doing in the alternative therapies section. I hope you find some of the things that work for you, soon.

She loves to write and paint, and that helps her every day. I wish you could find a way to use your art to help you through it. She found out that being sick gave her a new way of looking at the world, and she could use that in her art. if you can find the energy to do what you love, maybe it will add a new dimension to it!
 
Mshears, I'm sorry you started at such a young age, it sounds tough right now.
Let's start with giving up your dreams...you have to continue puting one lead weight foot in front of the other either way. I personally would keep working towards what made me happy. It may just take longer.
What makes people feel better...everyone is different with just a few things in common. You didn't state what meds. Your are taking for fibro. What supplements? I'm sure you know by now vitamen D and magnesium are essential to all fibro suffers. Grywolf has a post listing a slew of things that have improved her daughters life. Me, I'm still learning. Malic acid and alpha lypic have helped a lot. Along with ionic detox baths, Epsom salt baths, coconut oil with clove oil as a topical. I wouldn't fall asleep or be able to get out of bed with out my heating pad!!! Lots of little things can add up, but you have to find what works for you through trial and error. On good days I love to think about what I'll do when I get better. GOOD, deep SLEEP.
Something I've posted many times but I feel is always worthy to repeat. In 1973 my mother died very young of breast cancer, back then there was no mammograms to catch it early and even when caught chances were not good. Last year my sister beat the BRCA1 gene caught in stage 3. You are young, the cure or real treatment could be just around the corner.
You are not living for the life you have today but for the life you dream to have tomorrow.
Non-believers, how to deal with them is really a case to case. Someone you love is obviously worthy of more effort and/or tolerance, a medical professional you just move on, friendships you have to weigh out. Ultimately them not believing doesn't make it go away, your energy is preciouse to you you must decide who you want to spend it on. This forum is a great place to bring your relationship issues one at a time and others will do their best to help you sort it out.
Everyone has days they feel hopeless now and then. I think fibromyalgia just sometimes gives more now's and then's. I think you'll have better luck asking for advice in the general forum. I think often people come to Moan and complain just to vent not so much to converse.
As usual my response is to long. I hope it helps if just a little.
Hang in there and really start trying some alternative treatment. And perhaps discuss changing your meds with your doctor.
Blessings to you
 
So sorry to read you are feeling this way, you are still very young. But don't worry, after a couple years more you will have learnt new ways to cope with this disease, very soon you will stop caring if the others believe in this or nor (unless it's your doctor the one that doesn't believe - in that case, better look for another doctor). Don't worry, I promise you things will get easier, you just have to find better ways to cope. For me writing in my diary and being grateful for what I have works (I try to write 3 things I am grateful for everyday - even the smallest things do, like for example when it rains... love the smell of the wet soil, etc).
 
Thanks everyone so much for your support and letting me complain. Knowing that there are supportive like you reaffirms my confidence in the world. I'm so happy this forum exists and will definitely check out more alternative therapies.
I hope that more and more studies come out to help us and wish you all the best in dealing with fibro.
 
I wish we could find a cure right now.
I'm 24 and I've had fibromyalgia since I was 15 and I am so so tired and everything feels so hard. I've wanted to make movies for as long as I can remember but I just don't know if I can take any more stress because it makes the pain worse. But not doing what I love feels terrible and everything about life with fibromyalgia feels so exhausting.
I know that everyone here must be feeling this way, how do you cope? What makes you feel better? I don't really feel like looking forward on to a life where apparently there is no cure to what I have and nobody even believes that it's a real thing.

9 years with the disease is a long time... Have you tried alternative medicines like osteopathy?
 
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