1. < Fibromyalgia

Fibromyalgia: How do you cope?

Posted by sandymom @sandymom, Mar 8, 2019

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

Parus | @parus | Mar 20, 2019
In reply to @karen00 "@Parus Hey Parus, it’s also s scary feeling. Can I do the ramp? Will I be..." + (show)
@karen00

@Parus Hey Parus, it’s also s scary feeling. Can I do the ramp? Will I be able to negotiate going outside and getting in car? AS

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@karen00 Are you referring to leaving the hospital or when you arrive home? How long has it been since you have been out-o-doors? Happy first day of Spring cyber friend!!

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1 reply
karen00 | @karen00 | Mar 20, 2019
In reply to @parus "@karen00 Are you referring to leaving the hospital or when you arrive home? How long has..." + (show)
@parus

@karen00 Are you referring to leaving the hospital or when you arrive home? How long has it been since you have been out-o-doors? Happy first day of Spring cyber friend!!

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@parus Hey Parus, it’s been a month since I’ve been outside! I’m scared about being at home. I’ll be by myself Friday from 11:30 to 5:30. Here, I’m NEVER by myself! So it will be a real challenge! .....Karen

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tdib | @tdib | Mar 21, 2019
In reply to @jmjlove "I agree about exercise being helpful. Though I did easily injure myself due to fragile inflamed..." + (show)
@jmjlove

I agree about exercise being helpful. Though I did easily injure myself due to fragile inflamed connective tissues. If able, and despite pain, I ran, miles, miles and more miles. Ran through fibro, ran through RA, knee replacements (both knees). I did aerobics, any and all. Until, 52. Could no longer move past the pain. Just. Had. To. Stop. Could no longer bear the pain. Having reached my limit, I just had to accept that part of my life is over and hope my years of exercise will serve me well in my later years.

But, no reason to avoid stretching. I've become flat out lazy. There. I said it. Lost my sense of balance, coordination with a large cerebellar stroke. Even lost the natural inborn ability to regain my balance after losing my footing. I slip, I fall. trip, I fall. Despite that, life is good. Been married 41 years, have 6 beautiful kids, 14 grandkids. Life is so much bigger than fake knees, stroke, fibro, and numerous other annoying issues. Those things are part of my life. They have their compartment. But, oh, the joys are great. Greater than my deficits are annoying. 🙂 Wishing all the best!

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@jmjlove , can can certainly relate until my late 40s I continue doing what I wanted to despite the pain, I was going to let it stop me. Then something changed with what my body was going thru , I suddenly started putting on weight despite no diet change ,began to have balance issues ,would just stumble and fall, trouble walking stairs. I lost confidence in my body abilities. The less mobile I was the more pain and weight gain. Vicious circle had begin. My anxiety got worse to the point I was scared to drive at times . I became a shut in spending most my time in my room . The few friends I had drifted away I don't have many family members left. I've found myself lonely with little support. Feeling pretty much alone in this world. Things changed so fast and so drastically for me there was no time to adjust or learn coping stills. I feel like I'm live in someone else's body, this can be me but then I look in the mirror and can't believe the image I see. I feel pure disgust with myself. The meds I been put on plus hypothyroidism make losing wait a challenge but im trying hard to shed some lbs, but it's slow...extra weit means extra pain of course, and worry has made my anxiety un controllable. I try to take one day at a time , but patientous is not my strong suit.

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2 replies
grandmaR | @grandmar | Mar 21, 2019
In reply to @tdib "@jmjlove , can can certainly relate until my late 40s I continue doing what I wanted..." + (show)
@tdib

@jmjlove , can can certainly relate until my late 40s I continue doing what I wanted to despite the pain, I was going to let it stop me. Then something changed with what my body was going thru , I suddenly started putting on weight despite no diet change ,began to have balance issues ,would just stumble and fall, trouble walking stairs. I lost confidence in my body abilities. The less mobile I was the more pain and weight gain. Vicious circle had begin. My anxiety got worse to the point I was scared to drive at times . I became a shut in spending most my time in my room . The few friends I had drifted away I don't have many family members left. I've found myself lonely with little support. Feeling pretty much alone in this world. Things changed so fast and so drastically for me there was no time to adjust or learn coping stills. I feel like I'm live in someone else's body, this can be me but then I look in the mirror and can't believe the image I see. I feel pure disgust with myself. The meds I been put on plus hypothyroidism make losing wait a challenge but im trying hard to shed some lbs, but it's slow...extra weit means extra pain of course, and worry has made my anxiety un controllable. I try to take one day at a time , but patientous is not my strong suit.

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@tdib

Good morning!
I am so sorry for all that you have been experiencing.
Fibro can be very insidious.
It can start slowly with a small ache then before you know it, your entire body hurts.

I have been dealing with Fibro for decades and I have found what works for me in spite of other health issues I have had to deal with throughout the same period of time.

I am concerned that there might be multiple things going on with you.
Have you been to a doctor, recently, for a complete and thorough physical?
Blood work and other tests done????
If not, I STRONGLY suggest you get it done.
I am not saying that you don't have Fibro, I just suggesting that you want to make sure that nothing else is contributing to your issues and that meds you take are working well together.

Good luck!
Ronnie (GRANDMAr)

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jmjlove | @jmjlove | Mar 21, 2019
In reply to @tdib "@jmjlove , can can certainly relate until my late 40s I continue doing what I wanted..." + (show)
@tdib

@jmjlove , can can certainly relate until my late 40s I continue doing what I wanted to despite the pain, I was going to let it stop me. Then something changed with what my body was going thru , I suddenly started putting on weight despite no diet change ,began to have balance issues ,would just stumble and fall, trouble walking stairs. I lost confidence in my body abilities. The less mobile I was the more pain and weight gain. Vicious circle had begin. My anxiety got worse to the point I was scared to drive at times . I became a shut in spending most my time in my room . The few friends I had drifted away I don't have many family members left. I've found myself lonely with little support. Feeling pretty much alone in this world. Things changed so fast and so drastically for me there was no time to adjust or learn coping stills. I feel like I'm live in someone else's body, this can be me but then I look in the mirror and can't believe the image I see. I feel pure disgust with myself. The meds I been put on plus hypothyroidism make losing wait a challenge but im trying hard to shed some lbs, but it's slow...extra weit means extra pain of course, and worry has made my anxiety un controllable. I try to take one day at a time , but patientous is not my strong suit.

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@tdib.....wow, you have surely suffered. I have been pampered by my family. I have 6 kids, 14 grandkids so I have plenty of support. But....stroke, fibro, aneurysm, and trigeminal neuralgia seem to rule. Those things make me feel so vulnerable and rightfully so. Same with you. We actually are more prone to injury, due to inflamation, loss of balance. You are trying to function. Look, you came here for motivation and support. Good for you. Considering you do not have the kind of people support in your life you need, this forum can be your support group. I too feel disgust at myself. My lack of progress. But I do have up days for which I am most grateful for. Trying to help care for my dad. Like you, though, I try to take it one day at a time. God bless!

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Parus | @parus | Mar 21, 2019

I believe most of us can understand feeling more vulnerable. I do Tai Chi to help my balance and keep muscles as active as I can. I no longer expect people to understand. I can no longer allow others to control how I think and feel about myself!

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Parus | @parus | Mar 28, 2019

Anyone else been having endless flares?? I think I am better and start to join life again and whoosh I am once again swept away to that fibromyalgia pain. Frustrating as I don’t know what is causing thus. I guess there is not always a reason with this fibro grab bag.

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1 reply
lioness | @lioness | Mar 28, 2019
In reply to @parus "Anyone else been having endless flares?? I think I am better and start to join life..." + (show)
@parus

Anyone else been having endless flares?? I think I am better and start to join life again and whoosh I am once again swept away to that fibromyalgia pain. Frustrating as I don’t know what is causing thus. I guess there is not always a reason with this fibro grab bag.

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@parus I think the westher everytime it changes I hurt I just went through a flare I noted thre weather went from on 60,s her to 75 next day Im becoming to believe weathetr has alot to do with flares

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lioness | @lioness | Jun 27, 2019
In reply to @rnicoletti "Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to..." + (show)
@rnicoletti

Hi I have been diagnosed with fibromyalgia. 6 years ago. The past week I've had to work hard at home and work. Lately I get waves of pain. Overwhelmed with anziety. I feel sick. cant eat like I used to. I Wake up starving feeling past year I'd say. Lower back and hips are the worst . But pain is wide spread. Super weak. Sore muscles. High joint pain. The pain rarely goes away. I'm unsure how to help myself in this situation. I am struggling to make it thru the day at work. I dont know what to do anymore....I dont give up but I'm feeling like I have no options left...it only gets worse as time goes by. Any thoughts that may help me? I need to go to the doctor but I am so overworked I rarely find time or money to do so. Not sure where to turn for the proper help...

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@rnicoletti Welcome to connect we aren't Drs but maybe give you info about what helps us.First of all your health is important ,you need to take time to take care of yourself.See a good rheumatologist and have him give you some pain medicine or have you done this? I've had fibro since the 90,s it doesn't go away but there are ways of controlling it except when you have a fibro flare Ginger Tumeric tea is anti inflamatory as well as ice,Hot shower when you hurt Epsom salts in bath or washcloth on spots I use a tens unit for stiff muscles this relaxes them Magnesium is important I take 600 mg.a day Fibro malic is great for this or Mag.Malete Other people have other things these are a few I use But it's important to see a rheumatologist Take your health seriously.

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