Mayo Clinic Connect
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!
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@karen00 What good news. Must be a happy feeling to be going home soon.
Liked by John, Volunteer Mentor
@sandytoes14 It surely does hurt. I get the line of how I am making excuses. Worse yet I am depressed and feeling sorry for myself. There are people I have needed to shut out of my life. I am better because I have done so.
I am sorry about those suffering from this illness which is more of an affliction. It helps to know my symptoms are not imagined. Sorry to have company but thankful. Today has been better. I was able to be out in the sunshine and it felt lovely.
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@parus I'm so glad and feel lucky to have you, @lioness, @grandmar and a few others as friends who understand. I never feel judged by what I say. I'm really happy to hear you had a good day! Sunshine is a wonderful healer!
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@parus In my volunteer job I shared a little bit bout my maladies with the supervisor. She also has things that are going on with her but she does a good job masking, so she could completely relate. She always double-checks with me before passing on a new/different task just to be sure it is something that I'm okay with. Of course she knows by now that I rarely am going to say no! I am concerned about the training I have coming up in 3 months because I don't know what my physical quality of life will be at that point. Today I feel to be pretty good but I know it's not as good as it was three years ago five years ago 10 years ago. I can only hope that the stress of flying cross-country in the middle of the night and five days of intensive workshops and training is not going to throw me completely into a flare and make it impossible to work with for several weeks.
@gingerw I was wondering about thus since these flares are unpredictable. Where will you be going for these classes?? Are you practicing any??
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Hoping all my fibro friends rest well. We are all special in our own ways.
Liked by John, Volunteer Mentor, Jen, Alumna Mentor, lioness, Ginger, Volunteer Mentor ... see all
@parus The training is in Providence, RI. Long way from home as I am in Coastal California. I will be trying to bank my energy, but as we all know that's not really possible to do. Since it is a Friday night red eye out of here I'll be able to rest hopefully. But I haven't done any flying for almost 15 years. Imagining that I will have to talk myself down from stress. I have a booked a room to myself so that I can escape the pressures of groups and noise in order to relax and regroup. Being on the spectrum is not easy for me to take tackle this training.
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@gingerw I can easily shut people out are you able to by selective hearing My husband got mad at my son and me we both can do that Can you tdownload ypir favorite music and use your earbuds to relax I wish you well Let us know when your going we will gather our cyber energy for you
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@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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@gingerw WOW!! Definitely a challenge!! I can no longer travel and even thinking of all of this wears me out. That is a long way from home. What an adventure!! I am excited for you.
@lioness Just the opposite of selective hearing, I hear everything, and can follow several conversations at once. Guess that's why I was a good dispatcher. Calming down usually involves becoming very quiet for me rather than even having soft music on. The good thing is that I know what works for me just that I have to avail myself to it.
Liked by Jen, Alumna Mentor, lioness
@ginger We are all different are,nt we Well glad you know what helps you use all those tools in your health box I use to like to fly but havent for 10 years that,ll be an exciting trip for you ,wont see much on the red eye hope you can sleep I have to use a sleep mask light keeps me awake would it on a plane help
@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!!
@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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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!
@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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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.
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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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