Fibromyalgia

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!

@clairecas

Bravo ❤! So well said.
Your note just came directly for me (from God).🕊🕊🙏🕊🕊
Thank you from my heart and kudos to you and your great attitude 🙏❣🕊

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@claire….whelp, it's a work in progress. But at least it brings me forward and not backward. Blessings to you and yours!

Liked by clairecas

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@jmjlove The last thing I want is pity!!! The difficulty I have is I do a kindness here where I live and then I am expected to do their work all of the time telling me how pitiful they are and need me to blah, blah, blah.
I participate where and when I can. Mayhap I sounded too pathetic. Did not mean to sound thus.
I would love to be able to go on family outings with my son and his family and have fun with the grand kids, go bird watching, hike. I have adapted to this even though I know some people believe I am making excuses.
apartmen living is difficult. I am just in a a hard place trying to encourage those around me. It is pointless. It drags me down. I have a roof over my head, food to eat, can still maintain and drive a car to get groceries and the things I need.
Need to be grateful. Realized the only social life I have is here at connect which is sick in some ways.
I apologize for being in a hard place. Fibromyalgia is only part of it. I can deal with that okay enough.
I will bolster myself once I can get the head pain under control. The fear this pain will stay again and nothing can be done is overwhelming right now. This is not a head ache this is head pain which I describe as having a spike driven in the back of my head!!! Nothing helps this pain.
My social life is the grocery store. At least that is safe and if I need help they are pleasant in doing so.
I tell myself if I would try harder things would improve. There are times when I cannot do more. I tell myself it is okay.

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@parus….Oh, my, if the idea that I think you may want pity was conveyed in my words, then I take them all back! I know that is NOT what you were saying. Sometimes I am a blathering idiot, ramming around, and offending people, AND too blind to notice. Nope, I know better. We do not want pity, but a wee bit of help and understanding would go a long way. I don't hold my breath regarding understanding. No matter how I try, at this point, I can not truly understand what cancer patients have to endure.NO you did not strike me as pathetic. Frustrated, tired, scared…not knowing how long you will have to endure. You are in a dark place, and you are in good company. Chronic pain is a dark place. I want to get better at living in the light despite everything. When I don't do well, and yes, I have my days, but when I go dark part of me wants to stay there. But another part of me hates it and wants to live in the light.

Head pain here 24/7. One of many clingons left behind from stroke. In my cerebellar region, but not only there. Head pain creates a veil between us and everyone else. When with kids and grandkids, I really despise its a constant wet blanket on our visit. But to be with them is ever so much better than to not see them. Sometimes even talking is hard, so I just enjoy watching them play and listening to them.

Parus, you are not pathetic. Pathetic is the person who quits even wanting good things. Pathetic is not being able to acknowledge our blessings. Seems I have given offence. If I did, your response was very gracious. Thank you.JMJ

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@parus

This fibromyalgia thing has kept me from getting the help I need. I have a better day and do more things. A pain level of 5 (the pain scale 1-10) is a good day. I tell myself I can do this all of the time. I tell myself I am not trying hard enough. I tried again to do physical therapy. Before this thing that has been labelled fibromyalgia I could do the things to keep muscle tone.
Now even on better days I am hesitant to be out because I then look like I am faking and I am just lazy. These are people that never knew me before the fibromyalgia. They see me as a burden on society.
Is it any wonder I have chosen to be solitary?? I see myself as not trying hard enough .Maybe I am not. Physical therapy worked a number on me. I keep trying to get back to where I was. This is how they weed out the ones that are lazy and don't want to get better. Maybe I don't. Maybe I am all the things I think I am.
Confused. Even spell check does not accept the word fibromyalgia.

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@parus. I'm so sorry to hear this This just won't let you go ,sorry I wish you could find the help you need Virtual hug for you Praying for you Maybe you need your group today or what means something to you My heart hurts for you

Liked by jmjlove

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@jmjlove

@parus….Oh, my, if the idea that I think you may want pity was conveyed in my words, then I take them all back! I know that is NOT what you were saying. Sometimes I am a blathering idiot, ramming around, and offending people, AND too blind to notice. Nope, I know better. We do not want pity, but a wee bit of help and understanding would go a long way. I don't hold my breath regarding understanding. No matter how I try, at this point, I can not truly understand what cancer patients have to endure.NO you did not strike me as pathetic. Frustrated, tired, scared…not knowing how long you will have to endure. You are in a dark place, and you are in good company. Chronic pain is a dark place. I want to get better at living in the light despite everything. When I don't do well, and yes, I have my days, but when I go dark part of me wants to stay there. But another part of me hates it and wants to live in the light.

Head pain here 24/7. One of many clingons left behind from stroke. In my cerebellar region, but not only there. Head pain creates a veil between us and everyone else. When with kids and grandkids, I really despise its a constant wet blanket on our visit. But to be with them is ever so much better than to not see them. Sometimes even talking is hard, so I just enjoy watching them play and listening to them.

Parus, you are not pathetic. Pathetic is the person who quits even wanting good things. Pathetic is not being able to acknowledge our blessings. Seems I have given offence. If I did, your response was very gracious. Thank you.JMJ

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@jmjlove No, I did not think you were being critical. I typically say the things you were saying about getting out, etc. I know I am in a funk and the darkness has returned. Like you, I need to enter back into the light. It is a beautiful sunny and warm day. I tried to go out for a walk. Just couldn’t do it. Wondering how long this pain will last. Hard not to be angry with an over zealous physical therapist over stretching my muscles and all of that pressure on my arthritic jaws and neck. May as well have gone to a chiropractor which I have been told to never do. I am too old for headlocks!!

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@jmjlove

@parus
Yes, it's easier to stay home. The challenge is in doing the better thing. Which is to go out and face the day. To interact, even in small ways. Try to do the small things you can do, well. I set small goals…get groceries, check in on 88 year old father, enjoy my grandkids. The more I laugh and enjoy others, the more charitable I can be about them "not getting it". Every time I go out that door, I do myself a favor. I am more inclined to be alone, reading, or just staying in my comfort zone. The more I do that the easier it is to forget, hey, I have something to offer. Even if it's just helping an elderly person with the door, reach items on a high shelf, carry stuff for a struggling young mother. I am only as good as I give. Life comprises so much more than the sum total of my infirmities. We are valuable. Maybe we can't do big things. But we can do small things well.

The more we turn inward, participate less in life, we diminish our quality. Yes, it requires effort no one can know. And yes, it hurts to just get ready to go out. And NO, people aren't gonna get it. But, they don't need to for chronic pain sufferers to participate in life. I can't wait until those that should understand (because they know me) me, actually DO understand. I can't wait for that because life will pass me by. I miss too many opportunities to GIVE. There are no exercises, therapies, supplements or meds that can provide the boost to my wellbeing mere participation does.

I truly know how you feel. One part guilt, one part uncomfortable in your dysfunctional body, one part scared to get out there, and one part questioning our own sanity. I get it. Fibro is just one of my conditions. Conditions that would have crushed me years ago. But with each health challenge, instead of taking me down, I experience victories. Yep. Small ones. Not significant . But every single time I get out and do something, there is a satisfaction I won't have in seclusion.

I don't thrive on pats on the back, don't need sympathy, but I do need to participate. My husband buttons and zips me. Carries my drinks, helps me clean the house, helps with all the things I can no longer do because of brain damsge. Then he let's me go out and about, doesnt hover over me, because he knows it's good for me. I'm glad for his help, but prefer to do all I can on my own. Unfortunately, that doesn't include my hair. Dysfunctional left arm. Yes he even tries to help with my hair, lol.

Forgot to add….yes, there are days I can't get around, days I can't psyche myself out, days I lay around, throw up, rock my sorry head, but those days are not all my days. Do I like the new me? Not much. Am I a better person having to struggle with things others take for granted? Probably not. The new me is different. I cant go back, but neither do I want to waste the days ahead. God has given me time to use. He didn't take me with the stroke, the aneurysm, the ruptured uterus. Could have. But for some reason He saw it better to keep me here, which I am grateful for. The opportunity to rise above my disabilities and just grow up, give, and love. And yes, it's been so stinking hard, but well worth it. My family makes the efforts so very worth it.

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I so get it…it's like u r a burden and why should they waste their lives with you. Are taking something from someone when u know this will only end one way. Maybe I won't die , but I'm always in pain. So u take those few minutes when you are feeling good and do something amazing!!!!!!!! There is always HOPE left in pandora box.

Liked by Parus, lioness, jmjlove

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For the past couple of weeks, I have been in a real funk. It's one of those things I can't put my finger on why. I don't want to go anywhere or do anything. Among the meds I take for Fibro, I take meds for depression and anxiety, yet I have had two panic attacks in the past week. I feel really alone although my husband and grown son live with me.
.In the fall when the clocks change I suffer from SAD- seasonal affective disorder. It generally occurs when one is in less sunlight. Do you think this could be part of my issue? Mornings went from sunny at 6:15 AM to dark until 7:15 AM. It is light later in the evening now.

Liked by Parus

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@sandytoes I am same way with time change I was in a depressive mood the last couple of days but my body is accepting it now but the time change messes our circadian rhythm Talk ton@merpreb she has the SAD light and loves it

Liked by Parus

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@sandytoes14

For the past couple of weeks, I have been in a real funk. It's one of those things I can't put my finger on why. I don't want to go anywhere or do anything. Among the meds I take for Fibro, I take meds for depression and anxiety, yet I have had two panic attacks in the past week. I feel really alone although my husband and grown son live with me.
.In the fall when the clocks change I suffer from SAD- seasonal affective disorder. It generally occurs when one is in less sunlight. Do you think this could be part of my issue? Mornings went from sunny at 6:15 AM to dark until 7:15 AM. It is light later in the evening now.

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@sandytoes14 Hi Jen, I had not thought about the seasonal time changes affecting our moods. Could well be. We will get through this funk.

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@parus since you feel this way plus Jen maybe there is something to it It's sunny here and warm today and I feel good have to keep better track if this to see start to journal about weather hummmm ?

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@sandytoes14

For the past couple of weeks, I have been in a real funk. It's one of those things I can't put my finger on why. I don't want to go anywhere or do anything. Among the meds I take for Fibro, I take meds for depression and anxiety, yet I have had two panic attacks in the past week. I feel really alone although my husband and grown son live with me.
.In the fall when the clocks change I suffer from SAD- seasonal affective disorder. It generally occurs when one is in less sunlight. Do you think this could be part of my issue? Mornings went from sunny at 6:15 AM to dark until 7:15 AM. It is light later in the evening now.

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Have you tried going to church for Spiritual food? Or if you don’t feel like doing that you can always watch church on TV or on your phone or computer. I love Joyce Meyer she has changed my life.

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@lioness

@parus since you feel this way plus Jen maybe there is something to it It's sunny here and warm today and I feel good have to keep better track if this to see start to journal about weather hummmm ?

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@lioness I have thought of keeping a journal as to weather/time changes. I know I was not pleased when they went to the time change. Messes up all of my rhythms.

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Good Morning!
As you all know, dealing with chronic pain, like that of Fibromyalgia, can cause us to be depressed about our situation.
Well, some drugs that we use for the Fibro, might be adding to those depressed feeling.
Please read the following:

Over 30 percent of adults take medications that may increase risk of depression or suicide: Here's how to protect yourself.
https://www.aarp.org/health/drugs-supplements/info-2019/depression-side-effects-prescription-drugs.html?cmp=EMC-DSO-NLC-WBLTR—NMCTRL-031519-F1-3638047&ET_CID=3638047&ET_RID=8426170&mi_u=8426170&mi_ecmp=20190315_Webletter_NM_CTRL_Winner_685000_1009402&encparam=JhroBFvDhdqKSRvuiZYWnFU93kHt%2fyyxTjsBbtXPqkE%3d

Happy Weekend!
Ronnie (GRANDMAr)

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@grandmar

Good Morning!
As you all know, dealing with chronic pain, like that of Fibromyalgia, can cause us to be depressed about our situation.
Well, some drugs that we use for the Fibro, might be adding to those depressed feeling.
Please read the following:

Over 30 percent of adults take medications that may increase risk of depression or suicide: Here's how to protect yourself.
https://www.aarp.org/health/drugs-supplements/info-2019/depression-side-effects-prescription-drugs.html?cmp=EMC-DSO-NLC-WBLTR—NMCTRL-031519-F1-3638047&ET_CID=3638047&ET_RID=8426170&mi_u=8426170&mi_ecmp=20190315_Webletter_NM_CTRL_Winner_685000_1009402&encparam=JhroBFvDhdqKSRvuiZYWnFU93kHt%2fyyxTjsBbtXPqkE%3d

Happy Weekend!
Ronnie (GRANDMAr)

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@grandmar I just read what you sent from AARP Why take any drugs then with all these side effects What are Dr,s @drug companies doing to us it's shameful they are not helping us just lining there pockets

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@lioness

@grandmar I just read what you sent from AARP Why take any drugs then with all these side effects What are Dr,s @drug companies doing to us it's shameful they are not helping us just lining there pockets

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@lioness Sure seems this way. My hope of a better future has been destroyed.

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