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reason to breathe

Jun 21, 2015 2:39 PM

I don't have the energy or will to keep going to drs. I am in constant pain, exhausted, isolate, excruciatingly depressed and 97% hopeless. This is going on decades and worse over time, after major life stressors. I am not young and fate has it that I have no family.

Jun 21, 2015 3:38 PM

Pain can be so exhausting. Reaching out to others is a good thing. We do understand. I may have family, yet they do not understand. I believe that they believe that my pain isn't as bad as I say. They do not have a clue, nor do I want to make them understand. However, by reaching out to us and sharing, we do understand. You have to keep looking for what makes your pain easier for we are all different.

Jun 21, 2015 3:48 PM

Thanks for the support ginger. It is indeed so hard for others to understand.

Jun 21, 2015 4:31 PM

I just learned that "severe" degenerative disc disease is part of this whole neck/shoulder/hand misery. The pt said some people can have the same or worse mri's and be symptom free?? Already had bad arthritis in hands from lupus. Ain't it enough.

Jun 21, 2015 4:55 PM

Oh marsemouse, I feel you. I could have written the same thing. I have a congenital medical condition, and I have never known a day without pain. Most doctors haven't even heard of it, and the ones that have tend to be condescending jerks. Like, I've lived with this for 34 years, I know my body way better then you! Doctors don't get it, they don't understand or care how much we suffer. I've just about given up actually getting the help I need. ((Hugs))

Jun 21, 2015 5:14 PM

Hugs back Amir! One of my drs looked up after 20 minutes of dictaphoning our appointment (just learned I can ask him to wait until after I leave) and asked what my diagnosis was again, after six years. And these are the guys that shame pain meds and figure you have resources for unlimited physical therapy. He said I could do a week of high dose oral prednisone for this flare, then said I was "1 in 300" people to have a bad reaction to prednisone when I groaned in protest. Even I know that's not true!! Thanks so much, maybe we can help lighten the burden for one another.

Jun 21, 2015 6:43 PM

and the brain fog is also helpful.

Jun 21, 2015 7:02 PM

Bur maybe it's the rotator cuff causing the searing pain. Which would mean another mri. But first I need one for the lumbar vertebrae. Because surgery there would be less dramatic than neck surgery. And the left meniscal tear doesn't matter and the right ligament sprain hurts worse anyway. And the neck mri "bore my symptoms out". Weren't my symptoms borne before the mri?

Jun 21, 2015 7:08 PM

Marsemouse I am so sorry that you are having a such a hard time with your pain , and Dr's that you are seeing. Besides Fibro what other problems do you have. I have Syrinx, Syringomyelia, Osteoarthritis, and Fibromyalgia as well as other problems degenerative disk disease, and spondylosis as well as type 2 diabetes, high blood pressure. I also have a herniated disk @L 4 S 1. It gets so agravating dealing with the Dr's and living with the pain we all have to deal with. The pain can get unbearable at times and if we are dealing with a lot of stress in our lives, it seems that there is no end in sight. We just have to hang on to our faith in God and he will bring us thru.

Jun 21, 2015 10:39 PM

Marsemouse, I'm very sorry for your pain and physical loneliness, that you have no family. The fact that you reached out to our community is a very good thing. We can be your online family, your friends, & support system.

From what you're saying you sound overwhelmed with too many medical issues, all at the same time. I've been there many times, and I'm there right now. One of my docs is a psychiatric doc (for my depression), and he's been so helpful in helping me prioritize my medical conditions and needs. Do you have a doctor or someone you can do the same with? If not, maybe you could make a list and how badly each condition is causing pain and/or affecting your daily life. Then place them in order from least priority to the highest priority. You are not alone, we are here, and God is too. I'll be praying for you too, like I do for everyone. πŸ™πŸŒΌ

Jun 22, 2015 6:14 AM

I'm praying for you also were here for you any time day or night there are many fine ppl in this the C M P family we all have a lot in commen here .

Jun 22, 2015 11:04 AM

Thank your prayers. I worry I've got nothing to look forward to anymore. I'm extremely depressed not to be able to do the things I love, not to mention demoralized by not being able to care for myself properly or manage simple tasks. But the hardest part by far is the loneliness. I can't even have a pet right now (!) I am just over a long arduous divorce. The ex tried to bring my disability under scrutiny so he wouldn't have to pay more in spousal support. While the judge didn't allow it it was invasive and humiliating. I wish more than anything I was able to work; I need the money and sense of purpose especially having no kids, married (and divorced) later in life. I was diagnosed with breast cancer a month and after my mother died from ovarian/peritoneal cancer. She survived breast and bladder cancers, a sarcoma in her thigh and harrowing episodes of temporal arteritis. Her decades long health struggle haunts me, I'm twenty years younger at the onset. After radiation I was too weak to work and the ex resented me from then until I finally got the courage to leave. I was diagnosed with lupus after radiation, low wbc and c4 complement, positive ana high titer, joint pain, etc etc. After that it all seemed to go downhill. I feel like I'm trapped in this body, my spirit is willing... The results of my neck mri last week really disturbed me. I think it's my fault, I overdid things, should've done the mri long ago, why didn't the dr pay closer attention to years of my complaining of hand and neck pain, why didn't I push it before it got this bad, on and on. They also found a thyroid nodule and now I need an endocrinologist, it never stops. I got punctal occlusion last week and my eyes still burn. We hear "at least you've got your health" or more importantly, your loved ones. It didn't work that way for me. I'm not saying I'm worse off than anyone else but I don't understand the purpose of life if it's just to manage dr appts and financial concerns. Surviving-in pain-does not feel like a prize. I knew when I left that it wouldn't be easy. It's hard enough when you're still young and relatively marketable. Sorry to sound so cynical but illness and chronic pain aren't exactly confidence boosters. I have withdrawn profoundly in the last year, after the final court appearance. There are days I can't stand in the shower, many of them. I'm still here, still trying but it is so scary doing this alone. I had to put my stuff in storage and I don't know if I'll ever be able to get out, it's been almost two years. Well I've certainly done my share of belly aching this morning. I'm grateful for finding this forum and nice supportive people. (I just hope none of my posts are discoverable.) And Amie I'm sorry I spelled your name wrong! Ok another day, here goes. Thanks again.

Jun 22, 2015 11:05 AM

That would be thank you for your prayers, sheesh.

Jun 22, 2015 4:36 PM

Marsemouse, you have certainly been dealing with an enormous amount of stressful situations & health issues. Do you have a center to go for professional counseling? They're able to speak one on one and help you sort through, to find the easiest pathway to get through it all. Most counties provide free clinics and dealing with all you mentioned, you need someone close by. We are all here for you, and we will help however we can with advice. Depression is part of chronic pain & health issues. And getting counseling gives you support in the event you subconsciously become suicidal, as I did last year. Mine was due to a meds sideeffect, but I didn't realize what was going on.

I wish I could give you a hug and let you cry. It's best to let it all out, so don't try holding it in for fear of complaining. That's why we're here... to help each other. I'm sorry about your mom. And I can relate to the getting sick earlier. I see my grandmother in me, ten to fifteen years to young. I'm 53 now an finally accepted in disabled, and I can't ever see myself working again. I miss it and the life I had with my hubby. He's healthy, and I'm blessed, supportive too. But he has no idea what I deal with physically because many days I hide it from him. My dad & stepmom had to come to town and they took me to lunch, they're 75 & 85. They were upset to see my hand tremors and my need for a cane to walk. Protecting them I had hidden much from them. This is my life. I'm past the anger and bitterness stage, and am in acceptance now. It's really a grief of losing ourselves to these multiple issues, a death of our old lives. I'm praying for you! (((Hugs)))

Jun 22, 2015 9:38 PM

Marsemouse I am sorry that you have had to go through all of this. I know it gets to be over welming at times,to where we just want to pull the covers over our heads and let the world pass us by. But we can't do that we have to seek help ,like Flappsy said check into getting help from the free clinics. Cling to your faith and don't think for a minute that you are alone because you aren't. We are here for you and each other. You can rant and rave and no one will judge you because each of us has done it at one time or another and will probably do it again. I wish we all lived close together and could get to gather and help each other when we need it. Just keep your faith close and no he hasn't forgotten you. I will pray for you and I'm sending you a hug.

Jun 22, 2015 9:54 PM

Oh marsemouse, it's all good 😊. I've struggled with depression, suicidal thoughts, and anxiety all my life. I'm having a really hard time with life right now as well. I'm on Cymbalta, and it used to work, but for a while now it's done nothing good for me. All I feel is hopeless, useless, worthless, exhausted, irritable, and angry. All I ever want to do is cry. I'm about to quit my second foray into pain mngt because they're being arrogant. Everyone has an opinion on me, but no one will listen to me. What's the point of this? I feel like I have no future. They expect me to live with the pain the way it is, but that's insane. They tell me I should be able to all my ADL's without breakthrough pain meds, but don't manage my pain well enough. They don't give me nearly enough breakthrough meds either. I've given up. I have no faith in the system, since it is designed to screw us over. The DEA has limited the amt of narcotics that manufacturers can produce, which means less at pharmacies, which means going to other pharmacies that aren't out yet, which is what doctors and the DEA think is "pharmacy cycling" or some such. There is no winning.

Jun 23, 2015 6:01 PM

It is so frustrating Amie, I hear you! You can cry to me any time. Arrogance is the last thing you need when you're in pain. I wonder what these people would have to say if they had to live in our bodies for awhile, you know? I tried cymbalta years ago and it had a "paradoxical" effect--made the pain worse and didn't help depression. I see my rheumetologist tomorrow. He'll tell me to take prednisone and go to physical therapy--if he remembers my diagnosis. Hang in Amie I need you here with me! And Weezy and Flapsy, bless you all.

Jun 23, 2015 6:07 PM

Flappys thank you so much and yes, I've been to counseling but not lately. I did a year of cognitive behavioral but that wasn't the best match for me. Lately I'm exhausted just getting to drs appts but if I can find someone close by and affordable I would go again. I need all the support I can get! Weezie I am trying not to lose faith but it's really tough right now. Thank you for yours!

Jun 23, 2015 8:16 PM

Amie, your description of how you're feeling is exactly where I was at a year ago. I didn't want to commit suicide but I began wishing I was dead and envisioning. My rheumy doc in a physical exam asked questions, and she weather me of the cymbalta. She said the symptoms I had were typical side effects. Let your prescribing doc know this is happening. I'll keep you in my prayers. It's probably the hardest, the doctors listening but not hearing! (((Hugs))) πŸ™πŸŒΌ

Jun 23, 2015 8:21 PM

PS... Besides the psych effects, after 6-8 months I started hurting worse instead of feeling better. Another side effect of the cymbalta.

Marsemouse, we all need each other. πŸ™πŸŒΌ

Jun 24, 2015 10:00 AM

It is grief Flappys, you said it so well. It feels endless-- I've cried so much I need punctal occlusion!

Jun 24, 2015 10:29 AM

I am afraid to go to the dr today. I took so many meds to get to sleep that now I'm groggy. My blood pressure is spiking 20 points during pain episodes. It is intolerable and has taken my life. This dr has been way too dismissive--please let him be alert today and stop judging me for one thing or another. He's afraid to do a nerve block because of the area and I'm afraid now too. I only have the one body God, if you're there...what am I supposed to do, I can't do anything anymore.

Jun 24, 2015 10:17 PM

Marsemouse, keep strong in your faith. If the doctor isn't listening of its unwilling to help, ask him to refer you elsewhere. Maybe you "need a new set of eyes" as my neurologist put it, to evaluate you. Try not to over-medicate to get to sleep, that's dangerous. The saying is it's always worse before a storm, then after a storm comes the rainbow. Try to find ways to focus on anything but the pain; reading, music, TV, call family or friends, etc. When I can't sleep I read my Bible. Not only does it relax me, but I usually fall asleep and sleep better.

Our pain won't go away like magic. But if we trust God to give us the strength, He will help us get through it, one minute, one hour, one day at a time. Eased other posts and look for alternative ways to help with pain, along with your meds. You're not alone. We're here for you. What is it God says for us to do in times of trouble? Be still and listen and wait for Him to answer. My heart breaks hearing your plea, for I was there a year ago. I hit rock bottom, and then I looked up. I'm praying for you, and may God comfort you with peace tonight so you can sleep! πŸ™πŸŒΌ

Jun 28, 2015 12:14 PM

Bless you Flappys. I am searching for faith--it seems to be hiding right now. I'm still recovering from the med this new dr wanted me to try---yuck. I'm afraid to do the nerve block but we'll see. Thank you so much for your support and prayers. {{{flappy}}}

Jun 28, 2015 8:22 PM

Marsemouse, I am so very sorry for your suffering. I understand where you are coming from. The despair from the pain is often totally incapacitating. It becomes a vicious cycle. You have pain, then you are stressed and become depressed and irritable, you're exhausted from lack of sleep because the pain keeps you up and it just keeps going around and around. Then throw in the stress of family illnesses, your own diagnosis piling up one after another with no resolution, etc... I have been suffering with pain for over 22 years and I have been diagnosed with Fibromyalgia, Degenerative Joint Disease, Degenerative Disc Disease, Scoliosis, Cervical Spondalytic Myelopathy, Thoracic Disc Degeneration, Spinal Spondylosis, Long Thoracic Nerve Palsy, Severe Lordosis, TMJ, (Being tested for Lupus and Lyme's Disease), Grave's Disease, GURD, (on the verge of Barrett's Esophogus) among other things. I have had 28 surgeries in the last 22 years to try to rectify some of the issues I have as well as Implants of Neurostimulators in my cervical spine which failed and had them revised 5 times. I currently have a non working neurtostimulator implanted in my cervical spine at the base of my brain stem that has scarred in so deeply that I can't have it removed without being paralyzed. My pain levels are anywhere between 8-8.5/10 on medication and that is 24/7/365. I can no longer work and often feel useless. Almost like I am breathing the air that someone useful could be breathing and why am I still here. I have been there on the brink. I have to say, once I found this wonderful community that I call my community family, I have been blessed to have created some really wonderful bonds with folks (Such as FlappsyLady, who I adore). There is always someone here to listen to you and let you vent, cry, scream, joke, ask for help, etc.... I feel so much better when I speak to people here. There have been so many who are always willing to talk to me when I need an ear and I also feel so much better when I can reach my hand out to someone who is reaching for someone to grab onto and am able to help them. I feel that this site has given me not only solice in knowing I'm never alone but given me purpose in that I can offer my experiences and my compassion and my shoulder for someone to cry on. I hope that finding us and hanging in there with us gives you the support you need and that you will find your way and find strength knowing you are not alone either. That when you speak to us, you are speaking to people who understand what you are talking about because we live it as well. You will be in my prayers. I hope that if there is ever a time you need to chat that you feel comfy enough to reach out to any one of us because know that when you do, there will be several people reaching back to hold you up, including me.

Jun 28, 2015 8:34 PM

Marsemouse, I've asked God to give you that little seed of faith, then help it grow. It's when I vessel my lowest that I look up and ask God to give me the strength for the next step. He has not failed me yet, and He won't fail you either... Just trust... (((hugs))) & prayers! πŸ™πŸŒΌ

Jul 01, 2015 3:39 PM

I almost wish I hadn't gotten the mris. What do you do when there are so many problems and they all hurt to the point of distraction.

Jul 01, 2015 3:40 PM

There is nothing I can do about the degeneration. That word is haunting me.

Jul 01, 2015 4:15 PM

I was told my jaws joints and gum line bones are deteriorating, as well as the spine. I had a bone scan and it said I'm osteopenic (pre-osteoporosis) and stand a high chance of bone fractures within the next 5 years. Say what?!! It was like a kick in the gut.. I'm already at risk of falls due to my right side weakness & imbalance. For about three months I went around depressed thinking I'm aging so fast I'll likely die young. But then while at the rheumy doc appt I saw an article about patients strengthening their bones, even with osteoporosis. I started drinking more milk and doing 5 lb weights for my arms. And I'm trying to walk as much as I can (weight bearing exercises). I can't repair the bone I've lost but I can try to strengthen what's left & slow down the loss. I also take 2000 IU of Vitamin D3.

Marsemouse, I'm overwhelmed to, just this year's new problems, added to what I was dealing with the past 6 years. Sometimes I want to cry, and I do. There's just some things I can't do anything to change, but I'm not giving up living the best life I can.. The past 3 days were awful but thank God today has been 70-80% improved. I'm just making sure I don't overdo it while I feel better. I was supposed to be on the floor organizing meds records to take to Mayo. But I was afraid of relapsing tomorrow, so I'm doing other less physical things.

My Ortho NP really listened to me today and did an exam like he should. He's sending me to PT, the first recommendation I've had since 2009. He's hoping I'll gain some strength back. The disc in my thoracic (I feel is out of place) is arthritic bony growth. He hopes the PT will help the thoracic pain. I'll be doing thoracic & lumbar rehab. I can barely push open public does to walk through them; that how weak I've become.

When I'm really feeling overwhelmed, I read my Bible, and listen to K-Love radio, and talk to God. And sometimes I let myself have a good long cry. I may be down but I'm not out... Not yet anyway! I do what I can and don't feel guilty for what I can't. (((Hugs))) to you & prayers that God will help you find your way through all this. You're not alone. We're all here for you. πŸ™πŸŒΌ

Jul 01, 2015 4:54 PM

Flappys I got the same comments about my bone scan! But that was nothing compared to the neck shoulder and lumbar mris (!) Flappys my marriage wouldn't have worked anyway but he resented me when I got ill and that still stings. It was only weeks after my mom died and I went into some kind of fugue state trying to appear well to save the marriage. He was alcoholic and ranted, it was a mess. I thought I was starting a new life when we divorced, that I would resume work and be thriving by now. I honestly don't understand what my purpose here is anymore. I was not brought up religiously--I do wish we were encouraged to have faith. The hardest part is this searing loneliness. I don't have a family of my own though I wanted this more than anything. People say go create family...well I'm far too old now and it will take more than my five feet of shrinking skeleton! I'm not always so dismal, I can forget when I'm with gentle good people. I can laugh with the best of them. Thank you so much for being one of those people-- I wish you lived next door!

Jul 01, 2015 4:59 PM

And I am so very very glad you had a good day and encouraging dr visitπŸ™πŸŒΉ

Jul 01, 2015 10:16 PM

Marsemouse, I'm very sorry about your marriage and divorce. You deserve better than him. Family isn't necessarily blood relations. Heck, there's some of those in sure people would like to throw away at times. Family can be closeness, having things in common, enjoying each other's company, etc. My stepmom never had children, but for years and worked out volunteered with youth groups and vacation bible schools. She told me, after she and my dad has been married there years that God told her she would have children one day. She said we all openly accepted her. She has 5 children through marriage to my dad. But before us she called the boys at the youth home here to. I wish we lived closer by to. There are so many on here that have hearts of gold... and my doggone dementia/fibro fog makes it hard to remember all the names. But I've never been good at named or faces, just the opposite of my hubby. We are complete opposite except where it's important; morals, values,beliefs... I hope you have a good night! πŸ™πŸŒΌ

Jul 02, 2015 2:06 AM

Thank you FlappysπŸ’• I think the reason I even mentioned that is because I see now how I ignored my own pain signs. I find myself feeling guilty and alarmed that so much damage occurred as a result. I just learned the results from these tests so I'm also trying (desperately) to come to terms with the information but it is truly overwhelming. And I must remember that I fall into profound depression which skews perspective, kind of like the side effects you got from that pain medication. Regret and guilt will not help. I didn't purposefully get the c word those years ago. I wonder sometimes if radiation isn't the cause of all of this degeneration...whoops, more ruminating! Hopefully I will be able to find some kind of acceptance and come out of this dark place. Your husband sounds like a kind and loving man--you have a wonderful family! I hope you are sleeping peacefully and please know that you helped marsemouse today πŸ’

Jul 02, 2015 3:12 PM

My grandmother always said, "Home is wherever you hang your hat or coat." πŸ‘’ I've always loved that way! πŸ™πŸŒΌ

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