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Jan 26, 2016 3:34 AM

Feeling alone and frustrated.
Feel like I've lost myself and that I'm not the same person anymore.
Tired of taking drugs that make no difference.
Feel like family and friends and work do not understand. Like they think I can just 'snap' out of it.

Any advice??

Jan 26, 2016 4:04 AM

I am sorry keza that you feel alone. When you are in pain, you can feel very much alone because no one understands and they think that you can do everything that they can do when you can't.

My family feels that you live with mind over matter. So when I had my accident, they said that I wilL be back to normal in no time. Then they were disappointed when I was still on pain pills past six months. I really disappointed them when I went on disabilty. What they didn't realize more, was that I was disappointed. They thought I should snap out of it. But I couldn't. You are just going to have to realize that unless they could feel it, they have no idea what it is like. But they can have empathy. Empathy is based on imagination. They have to have to be able to imagine how you feel. They can only do this if you communicate with them and try to describe what you are going through.

When I said I was disappointed, it was because I felt like my life was over. I didn't think I was the same person anymore. I wasn't able to do the same things. When we deal with chronic pain, we go through a grieving period. We grieve the good health and life we once had. We go through the different stages of grief just like a death until you get to acceptance. Then you realize your life is not over, it has just changed. You can do different things now. You develop hobbies that you can do. If you can work, you change your work to something you can do.

And stay close to the group because this is where you will get the understanding you won't get from your family because we get it. We deal with pain every day. Best wishes to you.

Jan 26, 2016 4:51 AM

Profiler. Thank you.
I was dubious about joining a forum.
It's horrible to know that others are suffering too as I wouldn't wish it upon anyone...However, knowing that I am not alone and that others understand that no amount of trying makes any difference and that it is out of our control is comforting.

I understand that positivity plays a huge part...but am struggling to find mine.

Do you have any strategies or tips?

Jan 26, 2016 7:51 AM

Profiler, that was brilliantly stated!! keza34, I wish there was a way that I could help you to not feel The way you do. Know that there are times that we ALL have pity parties, we are feeling low and sometimes there are times that I don't even want to be positive, I'm wallowing at that point. The best thing I can suggest is distractions. I am referring to distractions that don't allow you to think about anything else. Sing your favorite song. You don't have to be a good singer, but you can't think of anything else when you're singing. Get lost in your favorite music.. Really listen to it, the words, the rhythm. Maybe you could do some doodling or coloring. On some days when I am feeling rotten, if a really good song comes on, I'll even dance!! I hope these suggestions have been helpful to you. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»

Jan 26, 2016 10:00 AM

Thank you for your response.
Music is something that has always been a huge mood changer.
I guess sometimes we just need to allow a little brief wallowing huh?

I think I'm going to make that my mission for today...to find my song! I'm in need of something empowering perhaps.
Any start off suggestions?

Jan 26, 2016 10:04 AM

One thing I like is when my wife and I go for a drive and we live by some mountains and wild flowers. I like to take photographs of those things. So my wife drives and I take the photos I want. Maybe taking some photos might be fun.. I enjoy it. Make a digital scrapbook. Play some games. My wife and I do that. Or I play a game by myself. I recommend getting out when you can especially if the sun is shining. I try to get out a few times a month. Don't always talk about your health with others is another tip. Here is a great place to do that because we are here for each other for that. But with our family and friends, we don't to wear them out with negative things. They need to hear about it. Don't get me wrong. They need to know how you feel. But remember that they love you and they would love to take away your pain if they could. So always reminding them would make them constantly feel helpless and they eventually would avoid feeling that way. Not parents though.

I hope some of these help. Best wishes to you.

Jan 26, 2016 10:09 AM

Well, what kind of music do you like?? I like a good old honkey tonk, love Motown!!!! I also love, love, love Latin music. Also slow and lite music, oldies like Mills Brothers and Glenn Miller. Tell me what you like.. Get into it.. Sing, LOUD and PROUD!! You'll find your groove.πŸ€—πŸ˜‹πŸ˜‰

Jan 26, 2016 10:21 AM

Your funny Alwayz. I am just trying to picture that. Or maybe you sing and dance at the same time. I have done that. It sounds like a lot of fun though. I am really happy at those times. Music brings out a lot of feeling. I like that show so you think you can dance. Because it really does cause you to have a lot of feelings when people dance and my feet are always moving while theirs are moving. It is just another form of art.

Jan 26, 2016 10:22 AM

Thats a lovely thing to do. Your wife sounds like a great companion and nice that the positive things include her also.
I think you're dead right. I have suffered since aged around 17. Diagnosed at 21 and 27 going on 90 now :)
I have always kept as much as possible to myself. Embarrassed and afraid I guess. It is recently that I have had to discuss it more frequently as the pain has become persistently unbearable.
I have a meeting tomorrow with my Boss to discuss absence and sickness and how to proceed moving forwards.
I find it humiliating as I know deep down they think I'm messing them about. It brings me to tears thinking about it. In a meeting highlighting my weaknesses at the time when I most need to be reminded of my strength.

Jan 26, 2016 10:25 AM

All genres really.
Thinking about it... T-rex - we love to boogie
That always got me dancing!
Bringing a smile to my face already :)

Jan 26, 2016 10:34 AM

Profiler, I absolutely LOVE to dance. You name the dance, I can do it. If the man I'm dancing with is a strong leader, I can follow. I can polka, lindy, jitterbug, tango, rumba, salsa, merengue, cha cha, two step, east coast swing, west coast swing, mambo, freestyle. I've always loved to dance and I still do. Music has always had the ability to move me. I feel it to my very soul. I also love to sing so I usually do both at the same time. I love to have fun, to make people laugh, to just be a brigh spot in someone's day making them smile... Now that I'm thinking about that swim across the pond, I'd have to wear a dark swimsuit so people out whale watching don't get confused.. LOL!!!πŸ˜‚πŸ˜‚
Keza34, you know you're in pain and your bosses have to know that you have been suffering. Please don't think of what you're doing as a weakness, you're trying to preserve your life. If that means not working to help with pain and stress issues, so be it!!! I know that if I could work, I'd be out there still working. Unfortunately it's not possible and not knowing what each day will bring, doesn't allow me to have a job. Hang in there, lean on us and know you're not alone.. You got this!! πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jan 26, 2016 10:34 AM

Do you think you can remind them of your strengths? Can you tell them what you bring to the your work besides your weaknesses.? Tell them what you are really good at if they don't bring it out. Do they have any work that can be done at home? That is what a lot of people are doing over here and I imagine all over. Maybe that would be something good for you to look into. I know that doesn't help you right now. Right now you want job security. But maybe for the future, you can find work that can be done through the day but at times you feel more up to it. I mean at home. I know there are job websites that advertise these type of jobs. I hope things Go well at your meeting tommorow. I feel bad you have to go through that. That is a lot of stress. Let us know how things go. We really want to know.

Jan 26, 2016 10:46 AM

Alwayz, I love to make people laugh to. People say I have a sarcastic very funny humor. Everyone around me laughs. I am sarcastic without making someone the brunt of my sarcasm. I don't like to make people feel feel sad about bad about themselves. But I do like to cheer them up. The reason I use the tern profiler, is because with my friends and people I meet, I am able to look at them and watch the way they carry themselves, their socials cues, the way they look at others around the room, church, or office. And I could tell there story before they told me. They say if you come from an abusive family, you really get to sense people well. So I use that to know what others need. If they need a listening ear, some humor, some shoulder to cry on, I always try to be that person. Because I know a lot of people are uncomfortable doing that. I imagine you being like that.

Jan 26, 2016 10:49 AM

I really screwed up on that post. Sorry for all the mistakes.

Jan 26, 2016 10:54 AM

Thanks guys.
I need to remind myself of my strengths...that's tough sometimes eh?
I'm still learning this self love thing! :)
I know that I am fortunate to be in the post ion to have worked up until this point. I think I'm upset because as you stated alwayz, I don't know that I can cope with it much longer. And I'm scared about what that entails.
Unfortunately Profiler, I am a duty manager in a leisure centre. No take home work for me.
I need something flexible. Not sure where to even start looking :(
I'm sorry that you have been unable to work, altho, it sounds like you've got enough dancing on your hands to keep you occupied! Wow!

Jan 26, 2016 10:57 AM

I am told that I'm funny. I do like to try to be. Making people smile and or laugh is one of the greatest pleasures in life....and you don't even need to get out of bed to do it!! :)

Jan 26, 2016 10:59 AM

I like you keza. I can tell you are a very pleasant person to just by your post. They sound very humble and kind.

Jan 26, 2016 11:01 AM

LOL @ Keza34!! That's a feet in itself!!
Profiler, you hit the nail on the head, I think you know me well.
Keza34, I only dance when I can walk.. LOL!! (It's a bit difficult otherwise). The other day I walked across the bedroom, lost my balance and fell. Totally jacked my lower back... Maybe a few gyrations around the floor will get it back in. Try not to put too much pressure on yourself about not working. Do what you can. You're not "giving up" or "giving in" you're just trying to manage. Now that you have us to lean on and you know you're not alone, maybe you'll find it a bit easier.πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jan 26, 2016 11:08 AM

Thanks! Profiler. You too!
Same to Alwayz.
I'm so glad I joined this morning.
Huddled on the floor in the cupboard at work (It's my secret place where I can just collapse in the dark a no one can see me if I fall apart or need to try and stretch out or just have a good old cry) Perhaps not the thing to bring up in my meeting tomorrow ;)
But anyways, from that desperation and loneliness to smiling and feeling as though, you know what, it's ok.
Lots of gratitude to you both. You have truly lifted my spirits today!
Yiu wonderfully beautiful people! Xx

Jan 26, 2016 11:10 AM

Why walk when you can polka, jitterbug, salsa, tango .......

You go for it!!!! :)

Jan 26, 2016 11:17 AM

LOL!!! Have the Latin music blaring right now!! 😘😜

Jan 26, 2016 11:28 AM

I think you would love bluegrass music! It is Alwayz favorite. She even plays her own fiddle. She is good. She usually does Squre dancing to it. Right Alwayz? Tell her about it.

Jan 26, 2016 11:30 AM

Haha. Yeah Alwayz.
That sounds like the sort of thing I'd love to hear about right now :) xxx

Jan 26, 2016 11:32 AM

Oh yeah, you believe the fiddle story, there's a bridge in Brooklyn I can sell you... LOL!! 😝😜😳
(I do like Blue Grass Music tho).

Jan 26, 2016 11:35 AM

What does sea sick Steve count as?
Is it kinda folkie?
Ray lamontagne is cool. Ever heard any?

Jan 26, 2016 11:38 AM

Um, no.. But I'll google it and give it a listen.. I like folk music

Jan 26, 2016 11:39 AM

My favorite music is like classic rock. My favorite group is Journey, Def Lepeord, Heart, Doors. I also like Billy Joel. I am ashamed to say it but I like Justin Beiber's new Album.

Jan 26, 2016 11:41 AM

Try it. It's not all happy though so I wouldn't necessarily listen on a low day but I like his lyrics.
There's one called empty. Great lyrics in there. :)

Jan 26, 2016 11:41 AM

Never be ashamed Profiler!! I love Billy Joel, The Doors, The Stones, Journey.. All of that...

Jan 26, 2016 11:42 AM

Keza34, I must say that chatting with you and Profiler this morning has made for a nice day!! πŸ’•πŸ™πŸ»πŸ˜

Jan 26, 2016 11:42 AM

I was hating Justin Bieber and am ashamed that I have also enjoyed his recent releases!
Guilty pleasure. .. but ssshhh. That stays in the forum!

Jan 26, 2016 11:43 AM

Alwayz... its been a true pleasure.
Thanks for the moral support! :)

Jan 26, 2016 11:45 AM

You really like blue grass. You really have a broad palette of music. I can't handle blue grass when I can handle much other things. I really have no desire to just listen to opera but I would like to go to one. I think I would understand it more. I like folk music. This is not folk music but when I was a little kid, I would listen all day to Karen carpenter. That was how sad I was. She was depressing.

Jan 26, 2016 11:49 AM

I love The Carpenters. Have all their albums.. (Yes, I'm old, I said albums..LOL!!!) the only music I really can't deal with is opera and heavy metal. Other than that, I like most music.

Jan 26, 2016 11:57 AM

Even I know and can enjoy carpenters!
Same here. I do enjoy some classical...Defo not an opera fan tho. All that drama...just make me feel drained haha.
Motor head is probably my heavy limit. :)
Music is very emotive huh? Do you think maybe we are an empathic breed of people. Is that the right word?

Jan 26, 2016 11:58 AM

I hate heavy metal. It grates my nerves. If someone wanted to make me more insane than I am now, they would put me in a room with that stuff. I think it would only take an hour to make a severe nut job out of me compared to the mild nut job that I am now. I was so sad when Karen Carpenter died. It made me so sad. I even cried. I couldn't believe how sad she really was and how bad she felt about herself. But when I thought about the music she sang even though I was twelve at the time, I realized she was expressing a lot of her sadness in her music. It was a terrible loss.

Jan 26, 2016 12:00 PM

Yes, I would say we are. Because we feel through music. We imagine feelings through music.

Jan 26, 2016 12:12 PM

Definitely!! πŸ€”πŸ™„πŸ’•

Jan 26, 2016 12:21 PM

That's a great strength of ours surely.

Jan 26, 2016 12:32 PM

I am going to go take a nap ladies. It has been my pleasure to spend part of my day talking to you both. It has been a real pleasure making a new friend in you keza. I will look for you in our forum and ask you how you are doing. I hope you keep coming hear. I sometimes take a few days off when I am in bad pain. I just usually rest. Sometimes, I talk about it before it comes on strong and then I rest while it is bad. I mostly come on here to comfort others because I know what it is like and I like being there for people and listening. Plus, I have developed some good friends like Always, Flappy, and now you. And a lot of others too.

Jan 26, 2016 12:32 PM

Best wishes to you both today. I hope your pain is light.

Jan 26, 2016 12:35 PM

I'm off to watch a movie with my Mr before an early bed time.
Best wishes to you both across the water! Peaceful and painless dreams x

Jan 26, 2016 3:07 PM

Profiler... You always make me smile. You are a dear friend. I am so happy we go to chat today. I had to go to the store and while I was driving I was singing to Rod Stewart. Great American Songbook. Songs like, I only Have Eyes For You and I'm In The Mood For love. Awesome!!! Big smile on my face!!! Yay!!! πŸ˜ŠπŸ˜€πŸ€“

Jan 26, 2016 6:03 PM

Keza34, first of all I'm sending you big hugs! Second, I can't say it any better than Profiler did. Don't press yourself too hard. Grieving for the old you, your old healthy self takes time. And not everyone gets through it at the same pace. I had to leave work in 2010 for a tumor to be removed. Long story short, in 2014 I finally accepted that my constantly new diagnoses and continued deteriorating health was not going to improve for me to return to work. It took me 4 years to accept my new normal health. And even to this day I sometimes struggle. Depression and anxiety go along with many of my other illnesses, and chronic pain is a constant companion; sometimes worse, sometimes better, but always there. At my very lowest, feeling alone and misunderstood, I chances across this app to find a way to track everything. I'm so glad I did. Though I hate knowing so many suffer, it's wonderful to have support from others who really get it, who don't chastise or judge me. Here you will find nothing but support, care, encouragement, a shoulder to cry on, a listening ear, a laugh or two, advice or suggestions, and prayers if needed. And if you need to vent that's ok, no apologies necessary. Hugs, love, & prayers you will find a coping methods to help you through you time of grief and adjustment!!! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 26, 2016 6:08 PM

Or better than AlwayZ. My posts only showed the first 2 comments until I clicked to add mine. Then I saw all the others and read through them! Lol

Jan 26, 2016 7:09 PM

Just like Fibromyalgia said he will be visible to people who will not know what you going through , but Your pain suffer in the community like us

Jan 27, 2016 12:46 AM

Thank you for the comments. I am dreading today but feel like I can take it on knowing I have an army of supporters here if I need to vent. I hope that I can be asmuchof help to you all when needed.

Flappylady, totally get it! At times I do feel as though I'm grieving for the old me! And it sounds as though within our community, that's totally normal and acceptable. :)

Jan 27, 2016 7:31 AM

Keza34 You got this today. We're all here for you if you need us. Keep a song in your head and know that it's going to be ok. {{{Hugs}}} πŸ’•πŸ™πŸ»πŸŒ»

Jan 27, 2016 1:36 PM

Thabks so much!
It wasn't too bad. We are going to review Monday and put an action plan in place. Has been agreed that I can use my annual leave flexibly for the time being to help cope with flares etc. Monday we are going to discuss the possibility of them creating a part time position for me and the pros cons etc. If the HO approves it.

I also had a meeting with my line manager about the guilt tripping phone calls I get from her.
Explained that I work as much as I can and many times when I shouldn't be. That if I have taken a sick day it is because I literally am bed bound in pain and therefore regardless of how desperate she is I cannot be there. The call does in fact make me guilty without the power to do anything to resolve it.
She said that she cares about how I'm feeling, to which I explained that I do not need her to care, just to understand that I am doing my very best.

She then dropped my most hated comment...
"Remember, it could be worse, there's always someone more worse off than you are"

While I understand that this is true and that I have things to be thankful for...I do not find comfort in the pain of others, and feel as though I am being told that my pain is not valid.
Maybe that's a selfish way to view this statement?

Either way a more positive outcome than initially expected.

Thank you for the words of wisdom from this group, I went in to the meeting ready to explain what I needed and what I am still able to offer and deliver despite the pain.

Jan 27, 2016 3:20 PM

This post made me cry because I'm feeling every word. Gentle Hugs!!

Jan 27, 2016 7:37 PM

Keza34, I'm glad it went well for you. Praying everything works out as a blessing. Hugs!! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 28, 2016 12:30 PM

Gentle hugs back guys.

Jan 28, 2016 12:43 PM

I understand how you feel. I try to get up and do stuffs, bur is hard, the pain consume my energy. I am tired of medication, shoots, therapies. I really miss how I use to be 9 years ago, my vision, is gone, not totally , but I can't put make up because everything is blurry, my hands donot help to do my hair. Aghhh is horrible, and then this cold weather kill me. Please how I can deal, and continue be strong for my family. I wish I can stop the time and be the lady who work 8 hours, who clean, cook, take trips, we'll sorry but I hope I can get get help and support from you guys. Hugs from TN

Jan 28, 2016 2:01 PM

All the hugs you can tolerate.

Jan 28, 2016 6:23 PM

Keza, I feel so relieved that your meeting went well. I was truly worried about you. I just could imagine what it would be like to worry about work and not be able to at all times. It sounded like they were trying to be sensitive except for that one persons comment. It was worried they were going to fire you and you would be without income. But it sounds like the meeting was much more productive and a surprise to what you expected. I am glad for you if it is what you wanted. Do you think this new situation can work out or do you still think you may need to find other work? Best wishes to you and I am hoping you are feeling lighter pain today.

Jan 28, 2016 8:36 PM

Sandvila, welcome to the community! You will have support for sure. I had to stop working in 2010 for surgery on a mass. Long story short I cannot return to work because of continued failing health. It took me until 2014 to accept my new normal health & life. I grieved for the life I had, hating where I was. But once I accepted that it is what it is, I started learning what I could from others here and online. I also take every step one at a time, one hour, one day, one week at a time. On good says I try to do a little extra, to make up for things not done on bad days. Listen to your bodies signals for when you need to take a break, when to sleep, when to stop pushing yourself. And don't feel guilty because you can't do what you use to. None of us asked to have these chronic illnesses, and if we do the best we can then that's all we can do. You have to grieve for all you've lost. Feel it, let it out and cry. This is a safe community to do this because we don't judge each other. We all get enough of that from others in life. After you grieve, you need to be able to accept your limitations, your new normal life from this point forward. Once you get to the acceptance point, you will already know some of what you can, can't, want, or don't want to do. The new life may have limitations that require lots of changes to how, when, and who does things. But it takes everyone a different time, because no two of us are completely alike. Not even me & AlwayZ (inside joke of was are sisters separated at birth! Lol). Anyway, were all are different, with different diagnoses (dx) and needs and medications and pain levels. We adjust to our lives on our own time. But we have everyone here to help us through it! We make adjustments to our lives according to our needs. Not every method is for everyone. For instance, I'm allergic to makeup and many things, including pain meds, so I've had to develop a high tolerance to pain. I cut my hair very short because I can't style it long with my neck & hands. AlwayZ has very long hair and says she doesn't dry it but wears it down. And you can let your family be part of making adjustments in the home, car, shopping, etc. Talk to your family to let them know how they can help you when you are having a bad day or a good day. Let them know you love and appreciate their help. I hope I've given you some suggestions that are helpful. Hugs, love, & prayers! You can get through this because you have friends to support you. πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 28, 2016 9:09 PM

Keza, I'm sorry for hijacking your thread! I didn't know my response to Sandvila was going to be so long. My bad! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 29, 2016 9:04 AM

Not a problem. It's not my thread...I just kicked it off ;)
Profiler. Me too. I thought I was about to totally get struck off. I think it's hard for her because she is trying to run a business, but she is definantly making an effort.


Jan 29, 2016 2:26 PM

Hey guys I have lost some very dear friend who just couldn't understand why things changed so much for me, I stopped giving answers as they just couldn't or wouldn't try to understand how I was feeling. The thing is you either give up or try a little bit so I decided I'd rather have a little rather than none so I bough a book called "pacing yourself" and it really really helped me no I totally get that although I can't do the same amount of things as I use to I still can do what makes me feel comfortable. I now have a good friend who says I have taught her how to pace and she doesn't feel worn out by the end of her week. It takes time to get to know your limits but just listen to your body coz it sure a hell will tell you when it's done enough X x

Jan 29, 2016 2:33 PM

Hi Fibrogirl
I'm so sorry to hear about your friendship falling apart. I seem to have lost touch with so many of my friends. I don't have much energy to keep up with it anymore really. But when it's because they constantly expect you to just be able to do it it makes it harder I think.
I personally still find it hard to pace myself and so end up suffering a fair bit :(
Now that I have this app I'm hoping to start being a bit kinder to myself and look after myself a bit better. :)
Do you have any useful tips?

Jan 29, 2016 2:39 PM

Do what you can even if it's dusting one day and hoovering the next, small steps will lead to marathons take 1 hour out your day to do housework and 3 hours for YOU TIME honestly once you start you will deffinatley notice the difference and wonder why you would have ever wanted to do all your housework in one day X Oh and every month I treat myself to a little pampering session just coz I got through the month x

Jan 29, 2016 3:09 PM

I like the idea of that!
Something to look forward to. We could all use something like that right!

My house is such a tip at the mo. I've not been able to do anything and the man of the house works and has been doing the dinner for us.
Tomorrow I'm thinking of writing a list to break it down in to chunks and prioritise. Defo the bunnies first altho now they are litter trained so long as I keep on top of it they only need a full hutch clean once a week. We'll worth it for the fluffy cuddles :)

Jan 29, 2016 9:49 PM

Fibrogirl, pacing myself to become more organized is what my psych counselor is helping me work on. I get distracted easily. Who wrote the book? Couldn't find it on Amazon. That's a first! Lol πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 29, 2016 10:45 PM

Thank you everyone for sharing.
For me this is a new chapter in my life. Self acceptance, trying to figure out what to share with who. Loosing some relationships. Priorizing and repriorizing. Educating and advocating for myself. Appreciating the little things like being able to take a shower or the big things like having my daughter in my life.
Cheers to everyone for trying your best.

Jan 30, 2016 6:18 AM

Totally agree with you Beets.
It's a total learning curve. Like how I imagine it felt as a child to learn to crawl and to progress to learning to run. Lots of falls along the way but eventually managing to stand on own 2 feet and to face the world differently to the way you did before.

Outside, the people that struggle to understand us, a lot of them may see us as weak individuals. Some precious few see us for who we are and for what we are able to achieve despite the bad days. Throughout this group, I have seen nothing short of remarkable strength at all times.

When I'm feeling low and defeated I sometimes feel as though my strength has gone. There's no more left. And yet I'm hearing the same feelings from others on here and seeing that they're strength is still with them...they've just lost sight of it! :)

The people in this group help us to find it again by showing us the empathy we need at the time and by reminding us that we are not alone and by being positive enough for us all until we find our strength again.

Our best may not be good enough for some, but it moves mountains for the rest of us here!

Jan 30, 2016 9:35 PM

I feel defeated every day. Now my daughter has fibromyalgia too and 8 blame myself for her suffering. Does anyone know of anything that definitely helps? I am so tired of hurting and laying in bed all the time. I feel like a recluse because I never feel good enough to even walk to the mail box.

Jan 31, 2016 4:02 PM

I feel your pain I feel like u nothing matters anymore my kids are not there for me anymore it's just me and my husband

Feb 01, 2016 3:49 PM

I knoe how you feel

Feb 01, 2016 6:17 PM

There isn't any one sure thing that helps completely, or at least not in my experience. I think everyone has to use trial and error to find their own method to cope, because what works for one won't necessarily help another. There are some proven benefits to exercise, like gentle stretches, walking, yoga, and other.

I use to suffer awful flares, but after I developed Sjogrens, and was put on Plaquenil, my flares have been on average 5-9 days. The intensity hasn't decreased, just the time span. I'm just coming to the end of one that started early last week. Two years ago I was on a regular exercise routine and felt better, with less flares. But then I developed asthma exacerbations along with vascular problems, which brought all exercises to a halt. I couldn't believe the rapid change in my body, and the weaknesses that developed, or the pain increase. I started back walking on a treadmill last late- Spring or early-Summer. I've just gotten up to 20 minutes, 3-4 days a week. But I started at 10 minutes and its been at least 7 months, so it's been a slow go. On days I can't walk, due to pain, I actually feel more tired and hurt more. I also do gentle stretches, warm showers, use Voltaren gel, and heat, muscle relaxers, Tylenol Arthritis and pain rx. I cant stand too long, not can I sit too long. I have multiple chronic pain issues besides sjogrens & fibromyalgia, so finding an even balance is hard. What's good for one hurts another. Typical, right? Lol. Anyway, this is some of my method for coping. I hope you ladies can find what works for you. If one thing doesn't work try another, until you get some relief. Hugs & prayers for you all! πŸ™‚πŸ™πŸ’•πŸŒΌ

Feb 06, 2016 9:30 AM

I am a photographer and we also drive around on my husband's days off, which is uncomfortable but also worth it. Photography is what I love and yes, it gets my mind off the pain for awhile. β™‘

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