Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Introduction. I am so lonely

Feb 02, 2015 9:51 AM

Glad to have found this place! Hope I am posting correctly. Long story short...in car crash over 2 yrs ago. Neck and back pain since, occipital neuralgia with debilitating migraines...a bit improved since cervical rhizotomy past November. Have to get fusions on neck and lumbar spine due to herniated discs and nerve impingement. I hurt.

No one understands. My husband tries, I shut him out. I am a therapist and without this as a profession, that I love and continue to fight everyday to go in and help my patients, I am not sure I would ever find strength to get up each day.

I have a 3 and 5 yr old. And the mommy guilt I endure is tremendous. Not being able to be the kind of mom I want to be...hurts worse than physical pain if this was even possible.

I have found solace in poetry, meditation, and just reaching out. But that's on my 'good' days. Sometimes I just shut down, isolate, & get so angry. Then hate myself for it :-(

Hoping to find others to connect with. As much as my family and "friends" (non-existent almost now) try to understand...they just cannot. And I am glad for this...as I wouldn't wish this on my worst enemy.

Wow, that was depressing! I meant to simply introduce myself sorry.

Anyhow, glad to have found this place and hopefully find and provide support to others ♡

Feb 02, 2015 12:37 PM

Hi TherapistUnveiled. I'm glad you found this community. I started posting maybe a month or so ago and I feel it does help me feel less lonely and isolated. I was (maybe still am?) a nurse for 30 years. I had to stop working 3 yrs ago due to chronic pain and slow healing from two surgeries, I have had fibromyalgia and a few other 'fun' diseases diagnosed since then....
It is so difficult for anyone who isn't going thru chronic pain, ongoing fatigue, poor sleep etc to understand what we deal with 24/7. I am grateful my kids aren't little anymore. I am so sorry you have to deal with that. I actually can't imagine how I could do it. I have had to help out my elderly parents (one with Alzheimer's) the last few years and more so when they moved clear across country to be 5 min from me so I guess there is some similarity there but at least I get to leave them in their own house when I'm done with helping them. Although my husband was pretty supportive since the start ( my health started going downhill in 2009) I would say it wasn't until early last year that he came to be really okay with me not working and being at home with a chronic and some days debilitating disease.
I hope you have some family or close friends that can help you with your kids and some of the household endless jobs. Maybe you can have your husband accompany you to one of your doctors appointments so that he can see what you are going thru in a different light.
There's a lot of supportive and great feedback here. Can't type too much due to some pain. Sending you gentle hugs.

Feb 02, 2015 1:14 PM

Hi therapistunveiled... Welcome to the group. I'm so sorry you've been having such trouble. I've been having pain since 1992. In the latest years, I've carried a pain level of 8.5 on a consistent basis. I have herniated discs in my cervical spine, spinal Spondylosis, thoracic Spondalytic myelopathy, Moderate Lodosis, fractures in my lumbar spine, degenerative joint disease, degenerative disc disease, scoliosis, long thoracic nerve palsy, fibromyalgia, among other things. I tend to isolate and I don't go to parties, gatherings, dinners, weddings, etc.. Because I don't want to ruin anyone else's time. My family tries to understand and have compassion but I feel like a burden to them and a useless waste of life. I forgot to mention, that like many of us with horrible pain, I suffer from depression and anxiety. I'm sure you're a wonderful therapist and your patients are lucky to have you.. I hope that you find some resolution to your pain or at least get it to a manageable level. We are all in the same boat with different problems but bad pain. We're all here to help each other through.. Hang in there and stay connected with the community. All the best to you.

Feb 02, 2015 1:50 PM

Wow I already feel so touched by the responses :) "gentle hugs" LOL so cute and hits home....I always have to remind family (extended, see at holidays and gatherings) about gentle hugs.

@sandi: so nice to hear your story and of being a nurse. I find throughout my plethora of doctors....mostly nurses who actually listen, care & pay attention. And to know that you were able to keep up your career for so long...amazing. I am lucky in the fact that I mostly sit for work and that I love it so much of course. I couldn't imagine going to a job I wasn't passionate about. I don't think I could.

@alwayz: thank you and I do believe this has made me more empathetic. I have changed my views on chronic pain. After watching my druggie brother abuse vicodin and dealing with abusers in the line of work prior to private practice, I was wired to read chronic pain or ddd as drug seeking immediately. Now, I have so much more compassion in this area and also speak up and out about the stigma associated with pain mgmt meds. It was the people like my brother who created this stigma but this doesn't mean that everyone is taking medication or complaining of pain for this end result. I now understand this so much more and never generalize/clump them into some label/group of drug seekers as I shamefully admit I may have done prior to this. I also have changed my therapy practice to a more holistic and healing type strategies...since meditation has worked so well for me. So yes, I have found meaning despite...or because...of my struggles.

I hate the loneliness. I feel like a burden to my family and like I am always complaining. But if I isolate and keep it all in, my pain comes out with verbal outlash and anger of others "not understanding".

I am just struggling to find a balance there...

Feb 02, 2015 10:35 PM

I am very sorry about your health. Short story before I say what I want to say;
My mom was always sick. I can barely remember a time when she could just get up and do things. After my little sister was born, things turned awful. A doctor stopped giving her prednisone, which left her unable to walk at all. She'd be in such a fog in the morning, we'd go to "wake up mommy" and she's yell at us for hours. I'd cry every single day, until eventually I went numb to my mom. I love my mom. But my childhood was less than perfect because of her. All I can remember sometimes is her telling me exactly why I didn't have friends, why I'm so selfish, how ugly I am. Then a few hours later she wouldn't remember a thing. She'd wonder why I was crying, why I wouldn't look at her. My mom and I now have a great relationship. But one thing I wish she did was; see a therapist herself. I know you're a therapist, but everybody needs someone to listen to them for a while. Sometimes it's hard when you feel people don't understand. I try to talk to my mom about my problems now. She tells me I can't have what she does because I was nothing like her. She still refuses to be sympathetic to any pain but her own. Now, I know she's always in way more pain than most people on the planet. She has too many diseases to count, she doesn't think she'll be around much longer. She's surprised she made it past 40. My mom and dad have been in "the process of divorce" for over 11 years. My dad was unsympathetic, my mom screamed all the time, they called each other names until they were blue. But my dad stayed, he knew my mom could not live without him. Don't be that mom. Please, for gosh sake. Please. If you're struggling and you cannot find peace in talking to the people around you, find a therapist. Find a support group. Because an 8 year old should never have to be told she's selfish and ugly for waking up her mother. A 9 year old shouldn't have to go through the cabinets while daddy is at work trying to find something to feed her little sister without waking up mommy. My mom was in such a depression, she pushed everyone away. Don't do that to the people around you. Don't do that to yourself, either. You deserve to feel happy, and to make memories with your kids. It'll be worth it for all of you.
Also, don't push your husband away. He tries, I'm sure. I know I push my boyfriend away all the time. My mom and dad are practically on opposite sides of the universe. I'm sorry for writing so much. It's late here, and this just hit something within me when I heard your kids ages. It made me cry for my childhood. My mom will say that I got everything material I wanted, so I should be happy with my childhood. But I would have traded everything I had for my mom to at least look at me and say she loved me, turn on the TV and watch something with me, ask me about school, eat dinner with me and my sister and my dad. I would have given anything to not have to go to my grandma's every day after school because eventually they realized it was too much and practically raised my sister and I. I'm sorry again.

Feb 03, 2015 12:13 AM

Therapist, welcome to the group, we are glad you're here. As mentioned previously, we all are in pretty significant pain & we all have our issues in coping.

Just coming across an entire community that helps itself & others has been a HUGE relief for me. And it's not just the ability to compare notes of pain, as it were. Learning that others were having issues with their cognitive functions as well almost made me jump for joy. I don't know who termed it (or even who said it first) but "pain brain" & "brain drain" have been added to my lexicon.

I'm a mom too & am grateful to God that my children were basically grown when the worst of my problems started happening. My youngest is a 22 autistic & still lives with me for that reason. I have been mean to him in the past because my pain got the better of me & it still breaks my heart. Fortunately I found a terrific therapist & together we are working on taming that anger beast.

While my children are grown, I am a grandma & it's been hard these last few years because I can't chase the grandkids around the playground or even, as most days would have it, take them to the playground. It's really hard when little ones are involved. But, you can talk to your kids & be honest to their level. Kids can handle much more than most adults give them credit.

So welcome, Therapist. We are happy you found us though I know I would rather you be too healthy to be here. Don't be afraid post, ask questions or offer advice. You never know who you will be helping (besides yourself).

Feb 03, 2015 12:24 AM

Bio, your story breaks my heart. You sound like such a wonderful young woman. Your pain cuts so much deeper because your mother used her pain to slice you to ribbons.

While I would love to be able to raise a magic wand & make that pain go away, we all know that I can't. So I will keep your story in my heart & I'll send up a prayer everyday.

You didn't say so I'm going to assume you haven't gotten any help for all of this. Might I suggest (in case you haven't already) that you find a local therapist to help you deal with all your pain, both old & new, physical & emotional. I say it a lot around here but it's only because I have gotten so much help from my own therapist.

Be safe, Bio. Sending you long distance «hugs».

Feb 03, 2015 7:58 AM

@bio: hun, no worries that I am anywhere like that with my kiddos. I find my ways...even amidst my pain storm days...to be with them and snuggle, read, or play board games in bed. What I meant is just that I wish I could be the one running around with them or throwing them in the air etc. But I am always there somehow, problem solving a way to be involved. I never blame my babies but the pain and accident if I have to go to bed due to migraine/noise etc. My husband stays at home now to do things here I can't any longer and we are now thinking of developing a kind of visual scale so they can read where I am at...like a 7/frown face to let them know no climbing on mommy, lights down and quiet voices etc.

I am sorry that my post hit you so hard and brought that up for you! Please trust I am not that...and I am sorry you went through that...how strong you must be to be where you are. Everyone needs a caregiver "mommy" who loves and supports un unconditionally etc. You must have learned to rely on yourself.

Like deena mentioned, seeing a local therapist long term is a VERY good thing to do. Having such an upbringing impacts development which is not something to just "get over". So, I am so sorry that my story hit that chord with you and I very much hope u find peace ♡

I am never above seeing a therapist. I do speak to colleagues etc and utilize my own coping techniques etc. Any good therapist should always be open to seeing one themselves. Due to external factors I was unable to though until now, and have just begun my search (kind of picky when it comes to that lol...us therapists make crappy patients sometimes!). I am excited to see someone though. I know I need that.

Feb 03, 2015 5:54 PM

Hello Therapistunveiled, & welcome. So many here have so much in common. Yet we rarely, if ever meet someone in person, in public who suffers similarly. In my opinion there's definitely a stigma to admitted pain in public places, especially at work. Even admitting to migraines can cause secretive discrimination, even though it's against the law to discriminate.

You are going through a lot and feel lonely, but here you'll not be alone. I've learned many things since I've joined the group. And whether I'm having a good or bad day, I try to check in at least once. When I worked I use to relish my alone time. Since my 2010 surgery, from which my health has continued to crumble, I too get lonely, being alone most every day all day. Thanks to CMP I don't feel so alone now because so many here understand.

I'm 53, married to a very understanding & supportive husband, with 2 children and a granddaughter. My husband wasn't as supportive until I asked him to go to a doctors appointment with me, and he heard things from the "horses mouth." He's my biggest advocate now to others who don't understand.

I'd write more but today's a really bad day for me. They're trying to find what's causing my recent SOB & chest pain. I'm glad you joined, and I will add you to my prayers.

@BioMajorY1, your story made me cry. It somewhat resembles my childhood too. I agree with the others, if you haven't worked with a therapist on your pain, it truly helps. I did and feel much better about it all; I still cry hearing similar stories.

Feb 03, 2015 11:50 PM

I feel very alone and isolated I've lost many of my friends because they just don't understand chronic pain and I also recently separated from my partner of six years because of my chronic pain if you're in Edmonton Alberta I'd love to have coffee with you

Feb 04, 2015 7:24 PM

@ Oxycodone, I'm sorry for your losses. Not everyone can handle being around those like us who are different than they are. My own real life friends have become far & few between. But I remind myself, maybe its not all their fault... After all, I was the one who declined invites, or failed to call them back. But I've met many on here who can relate, and I think that's great. Its actually brought me out of my shell I wanted to crawl into daily. I don't feel up to going out, but hanging out on CMP I can do. Maybe you'll find some near you to have coffee with. GA, USA is pretty far away. Have a good night.

Feb 04, 2015 10:00 PM

Hello everyone!

I was encouraged by the introduction by therapist unveiled who started this thread. Thank-you "TherapistUnveiled" (cool handle), and to everybody else in here this is an open note:

On topic: "...I'm so lonely"
I'm so very sorry to hear your emotions. I can relate.

Because of the pain isolate myself from from my family and friends because nobody likes a whiner;and unfortunately because of my distractibility – I also suffer with ADHD:hyperactive variant – that's all I can think of to talk about because it's dominating almost all of my thoughts – – unless I find something that draws my attention more intently when I have those fleeting moments of relief that I can hyperfocus on.

There are so many different pains that show up all over my body sometimes they're attacking me and sometimes it just lay on top of me.

And what makes things worse is that this kind of pain makes you very selfish: your thoughts seem to be always turned inside.

On that note even know it sometimes more painful to get up and get outside, From an emotional standpoint how to fight depression and selfishness it's imperative to get outside and have fresh stimuli that takes your mind off of yourself and your own pain. Many experts experts and even The oldest book in the world recommends getting out and helping others as the best medicine for depression and depression related pain.

There's so many responses to your original post I couldn't take the time to read all of those, in fact I'm embarrassed to say I didn't even read all of your first one. But know this, while there are many that really understand what you're going through strike that what we are going through, there are actually a lot of people that want to help. Let them help.

Often times when people just listen, it can be very comforting. But by the same token the right word at the right time can be very uplifting and comforting.

I'd be happy to strike that, we would be happy to meet you maybe at a Starbucks or Dunkin Donuts and just have a cup of coffee. (BTW did you know that caffeine is a potent painkiller?)

We are in Duluth Ga. I don't know how we could communicate directly to agree on a time and a place cause I really haven't read the terms of service on thisApp/community forum.

I'm going to take a chance: I have a throwaway email address you could use:

Also, you might want to consider this:

Feb 04, 2015 11:16 PM

Welcome therapist unveiled, I just had to comment when I read your post. Let me address the parent guilt, I too was in a car accident but was released with no dx but I was never the same I begin to have random aches and pains but was still going to college and working and functioning and basically ignored my body. I did not know it was all from my accident. About 7 years later I had my two sons 15 months apart and my health went downhill rapidly. As it turns out I must have had whiplash and my cervical spine detoriated and after going to multiple doctors for various aliments including a trip to the ER with my left arm numb and I was dizzy and confused, (which they did cardiac protocol and sent me home) for about 10 years a PA ask if I had ever had a MRI of my spine of course no one ever mention my spine before anyway after the MRI results I had emergency surgery C4-C7 discectomy with fusion and plate. My spinal cord was nearly severed. I thought everything would be ok then but no my fusion did not take and bone spurs grew behind my plates (which are not meant to ever be removed). I was also diagnosed with fibromyalgia many years ago which in itself is enough to drive one mad. Ok so that's a generalization of my past 20+ years. Every since my boys were born I felt terrible quilt that I could not be the mom I had always dreamt of being. But let me share the good news. My boys are now both in college. My oldest graduated with a 4.0 and was Outstanding Graduate. He is continuing his education for a masters. My youngest has a 3.8 and will graduate this term. Both of them graduated high school with high honors, they are black belts in karate, they are eagle scouts but even better that all of that they are extremely capable of managing a household, cooking, cleaning, shopping etc and they are very compassionate people. So what if I could not take karate with them I managed to get them to class most of the time myself, so what if I could not go on the boy scout camping, hiking, or canoeing trips. I took them to the meetings even if I stayed in the car in the parking lot. I spent a lot of snuggle time with them in bed with me we talked about anything and everything from what was happening in their lives, world events, family stories, our religious beliefs and other world religions, we often did their homework together and expanded on the subject with research or conversation, we talked about everything. I openly express my mourning over not being able to do the physical things with them. I told them when I was having a bad day and better yet we really took advantage when I was having a good day. (I even let them skip school on occasion) I wish I knew then what I know now I would have saved myself a lot of heartache. Being a good parent means spending quality time with you children when and however you can and when you can not, be honest with them and allow then to help you. My grandmother aleays said, "A parent's job is not to do for the children but teach them to do for themselves" and that I did 😃 and even though it was not how I envisioned it was my life and my children are amazing in spite of me not being super mon.

Feb 04, 2015 11:24 PM

One more thing my phone is my therapy reach out and call the people you never get around to talking to when your body hurts. You may start off the conversation slowly but get a girl from the past on the line and it won't take long to become emersed in the conversation and forget how miserable you are. Just avoid your issues for these conversations these are just friends chatting leave the heavy stuff for those close to you.

Feb 05, 2015 4:41 PM

Natty, I applaud you for your fantastic attitude in raising your boys and it sure sounds like you are a Super Mom even though you don't think so. Your boys are very lucky to have you. And it's a great take away message for those with younger kids. As moms we want to be everything and do everything for our kids but that really is not necessary. Mine are 18 & 24 now and the younger one is at home. When I am feeling down and can't move well, he is wonderful at helping out. I think it definitely instills some compassion and caregiving qualities when they have the opportunity to help out in that manner.

Feb 06, 2015 12:04 AM

Thank you SandiBeach. It means a lot to me 😃

Feb 06, 2015 8:00 AM

Natty, what a wonderful outcome for your boys, to see you struggle and become compassionate & independent. You did a wonderful job!

Your accident and surgery was very similar to mine. I had multiple cars accidents over a 15 yr period, only 1 was my fault. I had one neck surgery to 2 discs in '92, then following another accident in '95 I had emergency surgery to 2 more discs, but they joined them all with titanium plates & screws. When those surgeries happened my youngest was 4-7. I couldn't hold & carry her like I did her sister, and I felt awful for it. When she was in band I barely made it through 4 football games because I couldn't handle the cement bleachers. Her dad went to every one though. Like you I did what I could when I was able. Both my girls, and now my granddaughter all understand as they watch my health deteriorate. My granddaughter puts her hand on top of mine on the cane, to assist me walking. And I agree with you on fibromyalgia. It really is a beast!

Feb 07, 2015 3:54 PM

Thank you to everyone for the kind words of support :) I have been MIA past few days because husband is sick therefore it is the end of the world ;) JK he actually is using his (minor) illness of tonsillitis (I'm trying not to lol here...) to relate with me and is telling me how he is being a baby and has validated quite a few times with "I have no idea how you constantly deal with this!" (Referring to body aches, head pouding...like my minor symptoms. And watched a video on the spoon theory and was in tears for me. I for once feel validated a tiny bit. Although he cannot understand he is trying and that's all I can ask.

But in the meantime...I am working and taking care of the kiddos (sick also) so haven't been on much but do get very excited when I am notified of new posts and love reading and relating to you all.

Glad I found this community. Hope to be contributing a lot here :)

Thanks again for the warm welcome!

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