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mvette80

New member
Joined
Jan 5, 2018
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1
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
TX
This is my first time posting in public about my fibromyalgia. I was a teenager in the 90's when diagnosed. The past few years have brought more pain, injury and devastating depression and suicidal thoughts that I ever imagined. I've tried patient rehab, support groups, friends, relatives, natural medicine, etc. While some things help make it bearable temporarily I've yet to find something that continues to help that does not cause more issues. I use humor a lot to mask my pain but the funny is being slowly sucked out of me.

For me sleeping and eating better makes a difference but the working out has left me hurt. I want to work out so bad. My mind is about to blow up!
Every time I introduce working out to my daily again I get hurt. I've tried everything and have found working with a pt to modify my workout and keep me motivated works best. I get passed those first hard few weeks then bam! Hurt again. My body is falling apart, ya'll! ;) I'm going to need a big bag!

I now feel like a burden on my husband and best friend. No one wants to have negativity around them. We all know the social media posts about how you are cutting negativity out of your life! So here I am feeling sorry for myself, embarrassed and experiencing a roller coaster of anxiety over the thought of venting to my top 2 people and still injured. No gym for almost 2 months.

My brain says go go go go and my body says.. wait what? I feel so lost.

Thanks for listening.
 
I feel you, mvette80. The physical challenges caused by fibromyalgia can be extremely tough in itself, but the unfortunate fact that fibromyalgia causes emotional and cognitive challenges as well, makes it so difficult to live with and makes you feel so overwhelmed and hopeless.

I suffer from regular moments of fibro fog and I forget things very fast and almost every day, several times a day. For example, if my wife told me today what she’s gonna do tomorrow, in five minutes I might ask her about her plans for tomorrow again. My mind wanders around and I’m unable to pay enough attention to what she’s saying. I hear her, but “the recorder” isn’t on. Sometimes, I remember asking the same thing twice, and I may say something like, “I asked you that question already, didn’t I?”. Sometimes, I can’t recall asking the same thing twice. Both my wife and I try to see the humour in these small moments of forgetfulness and confusion, but it’s still a little scary and makes you worried when you’re dealing with constant problems regarding your memory and consciousness.

Depression is an illness that is often associated with fibromyalgia. Like you, I’ve had my fair share of that illness, too, in my life. I’ve had several long periods of moderate to severe depression over the years. I don’t wanna go to the details, but I can say that depression can be a severe complication of fibromyalgia, and it can affect your life dramatically.

I believe that regular physical exercise and an adequate amount of good-quality sleep can help to decrease the probability and severity of depression, but it’s difficult, at times seemingly impossible, to have enough exercise and stay positive when you feel a severe pain in all your mobile joints and muscles during your exercises and when you’re waking up several times a night, after finally managing to fall asleep. It’s a vicious cycle that can only be broken when you get your physical pain under control and when you get an adequate number of hours of sleep that is of as good a quality as you can reach when being affected by fibromyalgia.

I hope you will start feeling better soon. I’m here for you if you need someone who listens and understands what you’re going through.
 
I also feel your pain, and frustration so very much.

What you said about your mind wanting to do so so so so much, especially when the depressive thoughts lift and vanish away (even for a few hours) and you feel like you can take on the world, your body is like 'what? you talking to me? No way honey, this body will lay down in the bed for as long as it can'. It feels like my body and brain are 2 separate entities.

I also use humor a lot, but it is almost always a mask. Either for my sadness/anxiety or for how crappy I am feeling. It makes my family laugh so that keeps me going, but otherwise I hate how much of a useless being I have become. But then I tell myself, no, no, I am not useless. I can be on this forum, listen to other people's stories and even if it is just to tell them they are not alone, I hope I can be somewhat useful by doing just that.
 
This is my first time here too. I was diagnosed following my trigger event in 12/2009. Ever since that little fall down the stairs, I have not been without pain. I thought my lupus was out of remission so I went to a rheumatologist who was amazing, and diagnosed my out of control fibro on that first visit.

Last summer, my former pain management dude (he doesn't deserve any more respect than that) chose to listen to my soon to be ex-husband who claims I am a drug addict - illegal drugs - and the practice gave me one last month of Percocet and dismissed me. A month and a half later, I weaned off in an effort to see if I could handle the pain without the opiates. Bottom line? I miss my meds.

I had several dental surgical procedures. Those helped due to short term scripts. I still don't do well without them. Then - for added fun - nerve pain started up in December - in my feet at first. Then in February, I contracted the shingles. I was flat on my back for 5 weeks. My primary care, who unfortunately was transferred to a sports medicine only practice, gave me back my meds. He said that I had more than proven that I was no pill seeker. They also put me on 1800 mg of gabapentin each day. They also put me with a new doctor, who after reducing my prescription to 5/325, informed me that she honestly didn’t believe in fibro. I was in the process of trying to figure out what to do about doctors when the soon to be ex decided to turn to threats, and a campaign to discredit me with numerous friends. It didn't work - my friends have stood by, but the situation was bad enough that I packed up a u-haul trailer, convinced my bestie to drive with me, and relocated from Golden, Colorado to Reno, NV.

I have been on SSI Disability since 2013, and I am in desperate need of a new doctor here. Anyone with insight? Please - help - I’m in so much pain I can barely walk to the kitchen..or the bathroom...or anywhere, actually...
 
This is my first time on this site. I joined a fibro support group on Facebook and find it all very depressing. I kept telling myself that “it will get better”, but the more I read about other peoples lives I am slowly accepting that “it won’t get better”. That is where the depression comes in. I have had physical issues since a kid (tight, achy muscles - muscles feeling like I have the flu), headaches, brain fog (as a kid I referred to it as “fuzzy head”), spinal stinosis, tinnitus, bulging discs in cervical and lumbar, rosacea and ocular rosacea, bone spurs in neck and feet, plantars fasciitis, light sensitivity, ibs, bouts with hives and scallop tongue. I could write a write a song titled “These are a few of my UN-favorite things”. I just didn’t realize that I it could get worse until I had a “flare up” and all these symptoms manifested at the same time PLUS some bonus items like getting dizzy if I turned my head too fast, nausea, and extreme fatigue.
 
Hi mvette80. This is my first time posting, my first time in a support group. It's gotten so bad I just felt the need to connect with others going through the same thing. My boyfriend doesn't get it. I also have Hashimoto's Thyroiditis and osteoarthritis. Yesterday I took care of my 4 month old granddaughter for 6 hours and then felt like I'd been hit by a bus. The chiropractor and massage therapist helped a lot today, but I'm still wiped out. It is depressing. It's hard to accept there are now all these limitations and challenges. I was diagnosed with Hashimoto's last August and Fibro in November.

I have similar issues as you do with exercising. I really want to, I make myself do something, and then I am sorry. Just a short hike (maybe a mile on flat ground) 2 weeks ago left me fatigued for 2-3 days. I have found that qi gong helps me feel better though. It is relaxing, stretching and working with pressure points. The Lumowell videos on Amazon are pretty good too. I don't do as many in row as I used to (4-5) I now only do one or two. Maybe that will help you? My massage therapist has recommended acupuncture. It's probably the next thing I'll try.

Thanks for sharing and for listening!
 
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