VENT - nothing is helping me??

kait0220

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I have been trying literally every type of treatment and therapy and nothing has made ANY difference. I'm getting to the point where I think the fibro diagnosis was just the doctor shrugging and saying "well, can't be anything else." Chiro, PT, cymbalta, supplements, even prednisone (which works miracles on my mom for pain and fatigue) - Nothing!!
Every single test result is negative. Every scan is "fine". I was waiting for results of an MRI and I caught myself being HOPEFUL that there was something bad on it. I am literally the healthiest looking 28yr old woman on paper, but I feel miserable all the time. I used to be so chipper and happy, I was lifting weights all the time - I felt like a boss. Now I'm pathetic and weak, tired and in pain. I'm performing worse and worse at work and it's only a matter or time before someone catches on. I can't do any of my favorite hobbies because of the pain. I can't even walk my dogs for more than a few minutes. I can't play with my niece and nephew. I'm so angry and fed up and depressed. I hate myself for being so weak and I hate that nothing is making any difference.

Phew. Thanks for listening
 

sunkacola

Very helpful member
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Dec 2, 2016
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638
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DX FIBRO
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Somewhere
I have been trying literally every type of treatment and therapy and nothing has made ANY difference. I'm getting to the point where I think the fibro diagnosis was just the doctor shrugging and saying "well, can't be anything else." Chiro, PT, cymbalta, supplements, even prednisone (which works miracles on my mom for pain and fatigue) - Nothing!!
Every single test result is negative. Every scan is "fine". I was waiting for results of an MRI and I caught myself being HOPEFUL that there was something bad on it. I am literally the healthiest looking 28yr old woman on paper, but I feel miserable all the time. I used to be so chipper and happy, I was lifting weights all the time - I felt like a boss. Now I'm pathetic and weak, tired and in pain. I'm performing worse and worse at work and it's only a matter or time before someone catches on. I can't do any of my favorite hobbies because of the pain. I can't even walk my dogs for more than a few minutes. I can't play with my niece and nephew. I'm so angry and fed up and depressed. I hate myself for being so weak and I hate that nothing is making any difference.

Phew. Thanks for listening
Hi Kait,
We can all relate to what you are saying! The fact is, Fibromyalgia is basically a way for the doctors to say "we don't know what's wrong with you so we will call it this". But that's not their fault, it's a product of the fact that there has not been money funded to do the research required to find out what this really is. I personally think that if they ever do they will find that fibro is really not one thing, and it will be broken down into several different things, maybe with treatments that are effective. But that is not happening now.

The most important thing you can do for yourself is treat your whole body better. Please read my suggestions in the post I made about advice for managing fibromyalgia, especially for newcomers. It's a long post but it will give you some things to try that are likely to help you. The thing is you cannot expect a quick fix or for any one medication to make you feel better. This is something that takes an integrated approach to your whole body and lifestyle, and the doctors are not trained to help with that, only to give out pills. So we have to take this on our own.

I used to lift weights too and do a lot of things on a daily basis I cannot do now. But my life isn't over, and over the years I have learned how to manage it. Please don't hate yourself or feel pathetic. I understand...I felt that too...but it only makes everything worse. Recognize that this is not your fault, is no one's fault, and that you can help yourself by taking steps in the right direction to improve your overall physical and mental health. Ultimately that is all we can do because the drugs, even if they help, don't address the underlying problems. If you can address those it will help. Probably won't make you feel 100% better. But any improvement is worth working toward, right? Hang in there and come here for support.
 

Maxsmom

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Jul 22, 2020
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DX FIBRO
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09/1984
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I wanted to put in my two cents out there that there are tests out there.

Supposedly tests can tell you that you have fibromyalgia but it is also part of a larger study because it is hypothesized that fibromyalgia people make less cytokines making them less vulnerable to the cytokine storm that comes with co-vid - you may check with your doctor. And yes it is another test but maybe of help, hang in there and I’m glad you vented - it helps.
 
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Creola17

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Sep 11, 2018
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DX FIBRO
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00/0000
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Nv
There is a doctor that has fibromyalgia and treats his and others with diet. I find the paleo works for me. Also brain exercises. I don't have a good insurance so I could only go for short time and learned alot. While I was stuck in bed for a month and a half I studied essential oils
I make a pain cream that helps.
Never stop looking for help. These doctors don't get it. I had seen dozens and got nowhere except pills. I just visited my primary doc and when I talk about a flare up she just stares into space. But again DON'T GIVE UP find one who understands.
(((gentle hugs to all)))
 

Eff2013

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Jun 25, 2020
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Creola17 I just had to comment on the "JUST STARES INTO SPACE" I can relate to that look. My wonderful GP has given me that look so many times it's not funny. This look usualy comes after she has gone through my always perfect blood test results. I am now waiting the results of my final blood test....( 6 small bottles of blood taken). These are from the rheumatologist . But I will never stop researching non medical ways of helping myself. I believe diet plays a big roll in this. Sorry, and STRESS. 😊
 
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Jemima

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Jul 30, 2020
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3
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DX FIBRO
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11/2019
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PT
Hi Kait,

I feel so much for you, and am in exactly the same boat. I was also always an uber-fit, independent, weight lifting kind of gal, and have really struggled with all of the limitations that come with FM. I'm also finding so far that nothing seems to help, and swing between feeling determined, and totally crushed, which is why support from places like this are so important! Totally agree with, and am grateful for everything sunkacola said above.

The thought of ditching fitness all together was totally heart breaking, so I've been playing with what I can and cannot do. I found that some of the really light weight workouts by Tracy Anderson are handleable on my better days. I used to scoff at such tiny dumbbells, but maybe you'll find it helpful! I've also found that swimming is the best thing I can do to move without setting my body off. Not being able to keep fitness up when you've always considered it part of your identity sucks, but there has to be a way through.

Don't give up, and if you find something that helps, I'd love to hear about it! What's for sure is that you are not alone 💪 xx
 
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kait0220

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May 28, 2020
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VA
Thanks so much everyone ❤ I was having an extra bad day and venting really helped. Sometimes I just need to get all of my thoughts out. My family and friends don't quite understand. Even my doctors says "oh it's a GOOD thing to not have RA/Lupus/MS/etc.". Which, yeah, I don't want to have a terrible disease but I also don't want to be told that I'm healthy. It's just really hard for me to accept that maybe I just can't do the things I've dreamed of doing. Maybe I can't ever learn to play an instrument, maybe I can't study and pass my actuarial exams, maybe I'll never be able to strengthen my body and do one of those super fun mud-running obstacle courses. Just sometimes I feel like everything about my life - cooking, crafting, traveling, playing and dancing around like a fool - is over. How can I just accept that I need to reinvent myself into someone who dreams of only doing things that they are physically capable of doing? Luckily I do have a couple of great doctors that are helping me try some new things to see what helps. And I have a FANTASTIC therapist. I try to stay positive and take one day at a time, but I can't help but look toward a future of negativity, weakness and failure.

Jemina, I totally love what you said. Yesterday I had SO much energy, I almost felt like a normal person. I was all pumped and determined to do all these things I've been wanting to do aaaand then today I feel like I can't even do the most basic tasks for work. I'm fortunate right now that I only have mild pain, but the fatigue and fogginess is unbearable. I just looked at my calendar and I have some doctor appointment on Friday and I'm like ".....what appointment? WITH WHO?" lol 🤷‍♀️

I TOLD my boyfriend we should put in a pool - I do think swimming would be a good compromise for my joint pain and help me feel more active. And I love the idea of brain exercises. My memory is getting worse and I find it hard to focus on tasks.
Lots of love everything, thank you for your suggestions ♥♥♥
 

sunkacola

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Dec 2, 2016
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It's just really hard for me to accept that maybe I just can't do the things I've dreamed of doing. Maybe I can't ever learn to play an instrument, maybe I can't study and pass my actuarial exams, maybe I'll never be able to strengthen my body and do one of those super fun mud-running obstacle courses. Just sometimes I feel like everything about my life - cooking, crafting, traveling, playing and dancing around like a fool - is over. How can I just accept that I need to reinvent myself into someone who dreams of only doing things that they are physically capable of doing? Luckily I do have a couple of great doctors that are helping me try some new things to see what helps. And I have a FANTASTIC therapist. I try to stay positive and take one day at a time, but I can't help but look toward a future of negativity, weakness and failure.
Kait, please allow me to suggest to you that you might be looking at this in a way that is opposite to what will help you.

These are my suggestions; I am not telling you what to do. but having struggled with FM for many years now I know that what I say is tried and true.

First, stop spending you time thinking " Maybe I won't be able to...maybe I can't...." and then finishing that sentence with all the things you like to do. You do not know if you won't be able to do those things! Maybe you can't do all of them right now, but you have no idea what the future holds for you. spending time worrying about what you might not be able to do in the future is spending time causing yourself unnecessary stress, and stress will exacerbate your FM problems, guaranteed. So, by using your energy to worry about the future you are making it a lot more probable that the future will not be what you want it to be. So stop.

Everything you love in your life is NOT over.
Now, it is probable that, at least for a while and possibly for the long term on some things, you will have to find a different way of doing what you love to do. Maybe you have to cook other things, and sit down while you cut things up to cook. Maybe you will have to dance for a shorter time. Maybe you will need to find some other things about which you can be passionate. But your joy in life is not over.

I once had a teacher who said to me, "Women are often not as strong as men physically. That doesn't mean they can't do anything a man can do - it just means they have to find a different way of doing it". I took that to heart, and have applied it all my life. And I applied it again when I developed FM. No, I don't go out dancing all night any more. b ut I can still dance. I can't do 5 hours of yard work any more. But I can get all the yard work done anyway, just doing it one hour a day. So, it takes longer. Oh well. It's not the end of the world. I cannot work out with a 35 pound barbell any more. So, I work out with 5 pound dumbells. So what. I am still working out. You can strengthen your body even with FM, and in fact it is imperative that you do so.

You will find that "acceptance" doesn't have to mean accepting defeat or accepting a severely diminished life. What it means is accepting today as being what it is, knowing that tomorrow may be different and you have no idea what tomorrow will bring.

And remember how fortunate you are, also. I find that helps. If we can't do what we used to do all the time and have to find other things to love, that is pretty easy compared to the lives of millions of people who have lost everything: their homes, families, livlihood, and even country. I think about the refugees, of which there are tens of millions in the world. I think about the people who have never had a clean glass of water to drink in their lives. And I am thankful that my problems are, in comparison, so small. I have food, clothing, a roof over my head, and even a car (15 years old but it still runs!). And I can have fun in my life and don't have to spend every waking moment just trying to stay alive.

Take heart, and stop worrying about the future. Do your best today and let tomorrow take care of itself.
 

RLG

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Aug 2, 2020
Messages
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DX FIBRO
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07/2020
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I caught myself being HOPEFUL that there was something bad on it
Yes! Me, too. Not MRI, but in general. I actually visualized a diagnostic answer of any kind--a bottom line--a name for it. I just wanted to KNOW.
And now I know the name of my enemy. I look at my legs sometimes and think, "I know who you are." When nerve pain shoots down my arm and takes my breath away for a few moments I know it will pass. I acknowledge it and know that I am making steps toward betterment.
So much I'd like to say to you, and you have been given excellent advice here already, I see.

Yes to brain exercises. Write it down, sticky note it asap with notes to easily recall dates, etc. Ask others to remind you.

Exercise. In any way or at any level you can. If you can't do it today, try again tomorrow. Keep trying.

Gratitude. Feel it. Live it. Express it.

Empathy. For yourself as well as others 💞

Hope. For a quick end to THIS flare and for very long stretches between now and the next one. Hope for new studies, research, treatments.

Patience. Be patient with your body, it is telling you important things. Be patient with your medical providers (soooo hard), your loved ones, too.

Your future self may one day look back at this present day's version of you with gratitude for following your bliss and good advice!! Because yes, kait, there are tomorrow's! What would future you wish to tell present you?? Bad news never has good timing. You never know what absolute joy tomorrow can bring. YOU may be the one to answer the ever burning question or say the exact right words to better someone else's life some time, you know you have that in you.

Best wishes. You got this!
 

RLG

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Aug 2, 2020
Messages
33
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DX FIBRO
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07/2020
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MI
I just want to add this--I really do understand the very real impact and silent worries. Trying to plan a short camping trip soon and I worry, will I be ok? What if I flare and can't help with all the work? What if I let my family down? What if I can't sleep and feel miserable? I THINK it will be ok. I KNOW I've been there before and survived. And it was totally worth the effort.
We make new and unusual choices in a new normal (or old stalkerish one like fibro), based on a feared but real suffering.
Ever onward...
 

Creola17

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Sunkacola, couldn't of said it better. We have to think positive. I grow pretty much all of our food (dog food too) and harvest and process so I stay busy and find it helps. If I start to hurt I take a break and use whatever makes me feel better. I find that when I'm working in the garden or kitchen I have less stress and less pain. So my advice is to do what you love and you will feel better. Of course some nights I hurt pretty bad but worth it.
 

Eff2013

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Hi Kait, you are only a year older than my daughter and I feel like I want to give you a big hug and tell you that all will be ok because that's what I would be telling my daughter. You have been given some really good advice here. I don't have too much to add but just stay positive. You have your entire future ahead of you. Be strong and try not to dwell on the things that you might not be able to do. Focus on the things you can do now and take it one day at a time . Stress will only make things worse. You're already doing so well ❤❤
 
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sunkacola

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Sunkacola, couldn't of said it better. We have to think positive. I grow pretty much all of our food (dog food too) and harvest and process so I stay busy and find it helps. If I start to hurt I take a break and use whatever makes me feel better. I find that when I'm working in the garden or kitchen I have less stress and less pain. So my advice is to do what you love and you will feel better. Of course some nights I hurt pretty bad but worth it.
Your post makes me smile!
I will admit that I have a little envy, though, that you have a garden in which you can grow food. I have enjoyed having vegetable gardens many years of my life and have found gardening to be one of the most peaceful and calming and therapeutic activities in the world. But I live now in a desert. It's not impossible to grow things here in the winter (forget May to October), but the soil is impossible. It is either sand, clay, or caliche or a combination of all those. On my land it is sand and clay. To have a garden where I live means digging down your whole garden area to at least 4 feet, and filling it with decent soil. Then, of course, you need an animal-proof fence and a complete shade cover. And of course a lot of water because it may not rain for months. All in all, it's not something I have been able to do. Some people I know have raqised beds but that is going about it backwards in my estimation.
Anyway, enjoy that garden!
Maybe one day I will again live somewhere where things can grow.
 

Creola17

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I'm in the high desert and it can be trying at times but I still love it. We have 5 acres but don't use all of it. We're getting up there I'm 68 and he's 76. We still grow way too much. The food bank and seinor center love us. Lol
 
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