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Lyndsey

Active member
Joined
Dec 18, 2014
Messages
89
Reason
DX FIBRO
Diagnosis
04/2014
Country
CA
State
British Columbia
Hi everyone,

I am really having a difficult week, and just needed to talk to people that can understand and relate tonight. Today I feel like I just can't take this anymore. The pain in my head (chronic headaches) and the pain in my joints and hips is so unbearable, among so many other unrelenting symptoms. This week even my meds don't seem to be helping enough with the pain. Because of this I have been taking a higher dose, which in turn makes me feel sad.

I feel hopeless, and extremely sad that I need pain medication to have a few hours day where I feel that I can have any quality of life. I have been off work for a year now, and I cannot believe that I have not made any progress in terms of my pain. I feel like a loser being off work, but I know that I can't handle working anymore with how debilitating this pain is for me. I am sure everyone on here can relate.

I am so tired of feeling sick. I talk to other people who have no idea what it feels like. I wouldn't wish this upon my worst enemy, but it blows my mind when I speak to people who have never even had a headache before or chronic pain. I can't even imagine what it would feel like to wake up and be pain free for a day. How amazing would that be or feel!

I am so scared that the rest of my life is going to be like this and I am scared to death that things will not get any better. Because of this I am battling daily depression. Does anyone else wake up in the morning and have this overwhelming feeling of hopelessness? Or anyone else cry because of it?

I just feel like a complete failure and loser. And I continue to battle this anxiety I have when I talk to people from work, I worry they don't believe how bad this truly is. Like recently I had a friend say to me that someone she works with has fibro and that she is still working. It made me feel so bad, like I shouldn't be off work. I tried to explain to her that every case is different.

I just needed to vent tonight and hear from people that can relate to these feelings. I am just feeling so many emotions, and praying that I can just feel normal.

Thoughts and prayers with everyone who is struggling tonight. xo

Lynds
 
I totally understand Lyndsey! I have to believe that we are not helpless, that the mere fact that we are still breathing is a victory. You are not alone, and you are certainly not a loser. Everyday that we wake up to another battle with this disease proves that we are winners. I'm sure you know all about the tools to fight this disease, but here are things that help me most when I feel horrible: 1. Meditation 2. Arthritis Association Water Exercise class- the folks in the class understand pain, and are so accepting and generous. 3. Humor. I schedule time every morning ( well, most mornings) to watch cat videos or read crazy jokes on Pinterest or YouTube. 4. My dogs. They understand everything I tell them and always agree and sympathize.�� 5. Audio books. Pure escapism. 6. Anti depressants. I take Effexor and Lyrica.

I hope you have a better day today. You are strong and brave and definitely a winner.
 
Lyndsey,

I, too, totally understand. You are not alone in the struggle. I just worked my way through a couple bad weeks, which truly did a number on my psyche. Taking one day at a time helped me see the light. We are fibro fighters and while we may not win the daily battles all the time, we are winning the war. Take care and hope today is looking brighter.
 
Sorry your being bombarded! I know exactly how you feel. Who puts those thoughts your a looser.? When I give my needs to my Lord, He scoops me up and loves me like no other.
For myself 80% of my life working at home, the perfect housewife, leave it to beaver, no white picket fence though. My siblings would kid me for being stuck in the 50's.
Keeping house and kids was all I ever wanted. I went to Church, AND TOOK MY kids, Unless THERE Dad Said no. Now I have to make another life, the best I can. Ask what you can do on good days. I'm here for you if ya need to vent.
God bless, chin up.
 
I am so sorry that you are having such a hard time! I understand what it is like to wake up from a poor night's sleep to another day of constant pain. I don't know what I'd do without the Lord! When I cry to Him in my pain, He gives me a bit more emotional strength and hope to keep on going a little further.
 
Hi guys,

thanks so much for all the replies to my post. Helps to feel understood and I hope I can return the ear, and provide comfort and understanding to all of you when you need it to. Please message me anytime.

Thoughts and prayers with you all and hope everyone is feeling ok tonight. . . .

Lynds
 
Well first of all let me tell you, you are NOT a loser! People who have not had to deal with chronic pain or fatigue don't know what it's like. And I'm sure if you're like me, you get all kinds of people telling you what to do or what to try. I think THAT is one of the things that annoys me the most. If you don't have this, how can you possibly comment on what it takes to feel better?

I really hope you find some relief. I know that's not much, but I understand your pain and frustration. I too just went thru a really bad month and was praying for just one day without pain myself. I am lucky and my pain broke yesterday. I still have pain, but not like what I did. I am going to see my family doctor Monday and see if she will up my Cymbalta and my Nucynta. Personally I haven't found anything that really helps the pain, but if I take 100mg of Nucynta, I can at least go to sleep. I wake up several times thru the night, but it's a start.

I really hope you can find some relief. It's a struggle day after day with this pain and fatigue. And the hard part is that we look fine. People look at us and wonder what our problem is. Just because you can't see it, doesn't mean it isn't there. Try to be positive and talk to your doctor. I would think there should be something your physician can do.

Frankie
 
I figure a loser is one who quits and doesn't try-you DO NOT fit that category. I also know what you mean. I cried a lot and at times still do. But when I came to terms and made peace with my Heavenly Father my attitude changed. There are still many times I feel like crying, esp. when so tired. But I ask God to help me and He is merciful to me each time. I now start my days asking for strength for the day.

By the way, when others say stupid, hurtful things to you, you have to let it slid off your back. When my 2 yr old daughter had cancer and lost her beautiful hair a person in the grocery store told me the cancer was my fault for not taking proper pre-natal care! I zipped my lips and asked God to forgive her. (my response would not have been gracious at that time). People are very good at kicking you when you are down. Just forgive them and move on.
 
First off, my beautiful fibro supporters have given you some wonderful supportive comments. I completely agree with them and just reading their comments has lifted me up. I am so sorry you are struggling right now. Quit beating yourself up about it. I have been where you are. I have been dealing with the constant pain and daily headaches with migraines at times, and also extreme fatigue. When I was working, I was constantly beating myself up. My counselor had some great advice.....Take some time for you. Mourn the loss of who you were and learn to embrace who you are today. Like me, you are obviously unable to work. Start working toward a permanent solution to your situation. My counselor is probably the first person who put the bug in my ear that there are always options.

I was having major anxiety and depression because I couldn't work like I wanted and thought I needed to. I was owning the comments people made, out loud and in their heads (I assumed) about me. I would work hard to defend what was going on with me. If you are doing the same.....Stop

Truly take the time and think about what you used to be able to do....I was involved in sports. I was a pretty decently paid manager and did a lot of good work, both for the agency I worked at and the people that I managed. I smiled and cried and laughed at my past life.

Next, think about the options you have. We all have them, some more and some less, but we all have options. My first response to my counselor was, "I have to work. I have almost 30 years in with the state, but I'm too young to retire. I'm the major breadwinner! I want to have my house paid off before I retire. We just refinanced and consolidated. I have a plan on how to do that!.....blah, blah, blah." She looked at me and told me that I should not be working. I should be taking care of me so that I can be there for my family. (I should mention that besides all of my fibro issues, I also had a heart attack at 49. That was in October 2013) My time of carrying the family, being the responsible, strong supporter should be done. She couldn't figure out how I had done what I did for as long as I did with as many health issues I had and still have. She planted the seed. And you know what? She was right. Could her advice apply to you? If so, what are your options?

When I stopped to think about what those options were, it became very clear.....I couldn't do it anymore. That was who I became. I needed to learn to embrace the me now. Take things one step and one item at a time so you don't get more anxiety and overwhelmed. On days you can muster the energy, do a little research, like could you qualify for disability? If you could, what would you get each month? Could you live on that? If not, can you and your family survive without your income? Can your debts be consolidated? I'm just throwing out random questions. I don't know enough about you to know which apply or don't apply.

You mention that your meds don't seem to be working anymore. That's definitely possible. There are a lot of medications for fibro out there. Talk with your doctor. If your doc is good, talk with him/her about your depression and anxiety as well. My counselor (who I paid for outside of insurance, but she's so worth it) has been my godsend. Consider finding a compassionate counselor.

Lastly, you talk about your friends.....True friends won't question your disability. They may not understand it, but they will not make you feel less than. True friends will be compassionate and make you feel good. You deserve to have people in your life who will show you love and compassion. My hardest change I've made is selecting which friends I spend time around. I have found some friends have become better friends than I imagined and others, it's been so hard, but I've distanced myself from them.

Your life is yours to make as good or not so good as you choose. Hang in there with feelings of hopelessness. Don't try and solve YOUR worlds problems in a day, a week, or a month. I'll say again, give yourself a break and let negativity from coworkers and so called friends, just roll off your back. Take care of you. You'll get where I am. It isn't perfect and I still have horrible, horrible periods of time, but when I do, I give myself permission to do nothing that day. Well, I do have to get my daughter to school, but you get my meaning.

I'm sorry this is so long. I hope it's helpful. Gentle hugs to you Lyndsey.....
 
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YES! I understand. Sometimes I am so tempted to give up. Staying in a dark room because the headaches are so bad you don't think you will survive it is so hard I've had some that lasted weeks and when you get through that another part of the body is hurting or you pass to fatigue because your body has been at war with itself. This week every bone in my body hurts. Twenty years ago before I ever heard the word fibromyalgia I had a doctor that gave me cortisone injections in the muscles going up into the neck for muscles spasms and tingling in my arms what relief I had. I just went on line to see if cortisone injection are used for fms and I found out that they are and they can give relief for long periods of time and can help the entire body. I am calling my doctor tomorrow. Maybe I can talk her into doing it if not it will be time to look for a new doctor. I take savella; the best thing I can say about it is that it has helped with the depression side of this monster we fight daily. Don't give up. I'm new to this support group I joined because no matter how much another person cares for you only someone going through this can understand. I have spent hours trying to educate myself on this condition and now have to take the stand to talk to doctors with research in hand and be assertive in my treatment. Having said all that I give GOD glory for sustaining me day by day.
 
Welcome Higherhope! This forum has been a godsend to me. It definitely helps to know you aren't alone and to hear about the different ailments that are tied to this disease. And yes, I see it as a disease.

Hang in there and read my earlier post. Taking the time to mourn who you were and learning to embrace who you are now greatly reduced my depression.

Gentle hugs...
 
Hi guys,

I was just reading through all of these posts again with regards to my initial thread. I just wanted to express my gratitude to everyone on here again for the comforting words, suggestions, and for sharing stories. When I start to get overwhelmed with this anxiety about being off work I come to this site, read the posts and I feel so much LESS alone in this all. There are so many of you with similar stories and struggles. It is very helpful, and I feel that this forum is a blessing in itself. Anyone who ever needs to chat I am here for you all as well.


Thoughts and prayers to everyone.

Lyndsey
 
I know exactly how you feel. Your not a product of other people's opinions, They don't have a clue. Take each day as it comes, Lean on God, He understands.
And the handfull of people that encourage you.
 
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