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Chronic pain, looking for people with the same

Jun 16, 2015 3:34 AM

I have looked everywhere for a place where people with chronic pain could discuss their struggle without it being a message board about drugs. It may come up because its part of our lives but should be the focus. My pain has made be feel like a burden to my love ones and has complicated all of my interpersonal relationships. I guess I would like to find a group of people to talk to about the internal battle we fight daily with people who understand how hard it is.

Jun 16, 2015 3:36 AM

Yes I have had chronic pain for 30 years now and it affects every loved one.

Jun 16, 2015 3:42 AM

I have had two back surgeries spinal fusion l4 to s1. 6 screws 4 plates and 12 ESIs currently on nuertontin roxicodone and fentynal patches. My pain sits at about a 5 and I have a very high pain threshold it would be a 9 to most people. I have 28 but have my fusion at 23. The constant pain makes me moody I am on disability and I hate it. But the worst part is that people seem to treat u different years later. At first every one cares and checks in but years go by and it's like people thing because u have dealt with it for years it has gotten easier or the pain has gone away.

Jun 16, 2015 3:47 AM

I don't really have people to talk to. People who know what real pain is and when it never goes away it changes you. In a way it makes u the worst version of yourself I am judged at the docs office and the pharmacy as if I asked to be this way or that after 5 years any of the drugs get me near high.I don't know how u have done it for 30 years some days I wanna give up and I'm 28. I some times need help getting in and out of the shower and some days its hard to even get out of bed. How have u done this for 30 years

Jun 16, 2015 3:48 AM

I know what you mean. Aside from a very close ppl to me I don't discuss my pain. Ppl don't understand.
I feel like a burden also. I'm assured in not but sure does feel that way. To go from being active.. Gym, hiking, soccer just being on the go. To not being able to sit or stand for too long.... constant pain. Now can't even work.
I fight with depression at times. Slipped into it for a bit... withdrew from most of my family and friends. This just sucks!!

Jun 16, 2015 3:56 AM

Just dance, I don't take about my pain either I just say the words I'm hurting and they know its time I have to rotate from standing to laying down. To be honest i am so afraid of another surgery I can't do 6 months recovery. I just want the people I care about to understand and they never will unless they are where I'm at. And as for depression I'm bipolar so all these meds mess with other meds and I have so many downs I don't remember what an up feels like. Looking at 4 walls all the time feeling like your body is a prison and ur pain is the warden would drive anyone mad

Jun 16, 2015 7:36 AM

Over the years u have learned that as people can't see your pain they don't understand what we are going through. The people that do understand are true friends and I have a small but very understanding circle of friends. These people are not in pain but have a genuine understanding of what life for my family is. My beautiful wife, 2 sons and their wives have grown up with my disability and are fantastically supportive and loving. My journey started 28 years ago with severe back pain and remained undiagnosed because of technology like MRI not being accessible. After 12 years and finally an MRI I was diagnosed with severe spinal cord compression and operated on the next day without much success as it was all to late. A second surgery was performed in 2007 and disks removed and rods and bolts out in my lower spine. Today I have learnt that I now have further compression again. Because of on going pain trauma I have developed fibromyalgia, osteoarthritis and osteoporosis. My wife and I are involved in running a pain support group which myself and a clinical pharmacist began 4 years ago. We have 450 members on our books and about 40 to 80 meet regularly on the third Saturday of each month. The first thing to do in helping treat chronic pain is to accept that this is how I am now but I can do something to make a difference.

Jun 16, 2015 8:04 AM

Yeah my mom and husband both care for me and understand. I have juvenile degenerative disc disease I dealt with the pain for 15 to 23 with ever doctor saying nothing was wrong I had a car wreck and blew 2 disc that doctor asked me if I played sports I said no never he said I see a bad injury that's about 5 to 8 years old which was on point when the pain started. Had the fusion and got function back in left leg but my body is reject the hard ware for the last 4 years and since the fusion took they want to take it out with mean another 33 stables down my back I'd rather leave it there than cause a new problem. I do everything else take meds right the best I can we all take extra on bad days and no one should look down on us for it.I get my esi ever 4 months. But I take bipolar meds pain meds and heart pills and it gets sooooo old living on a clock I can't schedule doing somethings ahead of time. I'm just frustrated being so trapped and crippled so young in life. I'm an artist I have a degree in sociology and started nursing but had to stop because they wouldn't let me have rest breaks to rotate from standing to sitting. I am glad I found this app I have been looking so hard for a way to reach out to others just for the nonjudgmental atmosphere

Jun 16, 2015 8:11 AM

hi I understand your pain I had a traumatic brain injury I broke both eyesockets my jaw my neck has two plates in it 2 bars to rods 8 screws I have hardware and both shoulders and I broke my pelvis and hips all at the same time and before that I suffered from migraines my whole life and neck and shoulder and back pain I've had many surgeries about 9 following my accident but then I became really sick and went to every doctor and I finally tested positive for Lyme disease and many Lyme co-infections like Bartonella and anaplasma Mycoplasma And ehlrichia. I had to test for lyme thru igenex. Reg lyme tests r so poor they turn false neg . Look into Lyme. Assume lyme unless proven otherwise. Not joking at all. Youtube. Google. Dr Horowitz. Dr lee cowden. Also mold toxicity is something to be aware about

Jun 16, 2015 8:13 AM

Join support groups on fb. Find me on fb

Jun 16, 2015 8:25 AM

I have Fb but I only use it to talk to my family other than that I try to stay away for the drama. That's why I'm in this group. Also my best friend had 2 brain surgery one to remove 4 tumors and the other to put a shunt in because the surgery caused hydrocephalus and she was getting a form of aphasia she couldn't understand words but now she is fine. My psy doctor asked me why I was on pain meds I told her I had a spinal fusion and now its caused more pain her comment was I had one too and I'm fine.... I'm thinking about bringing a Doctor case study on spinal fusion they are 50/ 50 it works or make it worse so I did that speach from the doctor that's support to be supportive

Jun 16, 2015 8:26 AM

Add me on Fb my user name should be lycan_1987 its under Joe mcdaniel Jr I think

Jun 16, 2015 10:06 AM

Of your the one that went to broken arrow high there is no add friend option for u you'll have to add me I checked and my son on Fb is lycan_1987@yahoo.com.. I'd love the add so u can help me find some support groups

Jun 16, 2015 10:26 AM

I'm part of some sort groups on fb also. Yes there is some drama at times but mostly its full of support and understanding.

Jun 16, 2015 10:48 AM

Well just dance add me like I said I'm just looking for a group to talk to that understands j guess I'm just in a bad place right now the pain has taken almost every thing from me and just to know people get it would help alot

Jun 16, 2015 12:22 PM

Back pain and sciatic pain sufferers is the group:)

Jun 16, 2015 1:43 PM

I know I've looked for people with chronic pain, but is hard to find people my age because it's either invisible or they are at home.
I've been lucky though, I found a friend who also deals with chronic pain and illness, she had had multiple surgeries, and her mom and brother have lupus, but she doesn't know about herself yet.
There are 2 other people who I'm still friends with, one is energetic and super ADD like me, the other also had chronic nausea/really awful periods, and only moved here in the last year.
I'm part of a bunch of Facebook groups, but too many people will post positive quotes and then I leave.
Two of my favorite groups have been CRPS and CRPS Oregon.
My family has a history of chronic pain, but I didn't realize what that meant until recently.
My mom has asthma, had at least 1 heart surgery before the age of 3, had several tumors, is bipolar, got early arthritis,etc.
My dad has migraines, ADHD, neuropathy, dystonias, a MTHFR gene mutation (I forget which one), and massive allergies/chronic sinus infection.
It should not be surprising that I too have chronic illness, allergies, asthma, crps/rsd, etc.
But it still came as a shock to learn what pain really means.
My first 10 on the pain scale would be a 2 or 3 today.
I am to relate to "older" people more, and I think it's because they are more open about medical information.
Other 15 year olds don't often relate to the frequent doctor appointments, and parents (of my friends) are worried by the sight of my meds.
My dad takes care of me, but he's been understanding. I also know that some nights he will need to take care of himself.
It's nice for me to be on forums/in groups because then I don't feel as alone.

Jun 16, 2015 3:00 PM

We are all in the same sinking boat. I have stainless steel Harrington rod fused in my entire T spine for scoliosis back in 1981, two rotator cuff repairs same shoulder OA and RA. The interesting one is Essential Thrombocytosis about 8 times the amount of platelets in my blood than a normal person. But here's the kicker they don't work. So according to hematologists I will have a stroke 300% greater chance than anyone else but they do not know if it will be a clot or a bleed. Yippie. Also most Harrington rods leak sending toxic metals and rust into your body and this all adds to my autoimmune issues. However I look healthy and my fine government does not think I need disability. Gotta love this country. So I have not been able to work for a bit over two years and I do not have insurance. Glad that I was really good with money I pay for all of my meds and doctors visits. I miss working I loved my job. I have busted my ass obtaining a dregree in invasive cardiology. That was how I wrecked my shoulder. Hospital beds never move the way they should. Anyway welcome to the group.

Jun 16, 2015 4:43 PM

Dance I know what u mean those positive comment and just pray and it will get better or this one I love if u move around more u wouldn't hurt so made... Really.... U think spending 18hrs in bed a day is my ideal lifestyle at 28. Then there's those friends that pop up because they find out u have a pharmacy in ur house. My cousin is a junkie he has been since he was 15 and we are both 28 now he's on subutex now so he basically condescending stairs from the pharmacist in the crappy comments from the doctors and I mean gp's my pm doc let's me refill every 28 days because I told him I'd rather be 2 days short than u give me 30 more pills I don't need right now he's really good as long as I do what he says and all my pee test are good. But people see what I take and say how do u function my only response is without with I can't move. As if the pain wasn't enoight because we are mean are snappy on bad days we have to deal with being treated like dope heads 5 years on the same meds for me and they have only been upped each one 3 times and the first to was just finding the right effective does and then upped for tolerance in combo with the degenerative disc disease it will never get better back will only get worse and I now have random allergic rashes and psoriasis from the stress that the pain and doctor's visits and driving and I also have to watch my bipolar when they ask do I want to try a new med I always say nope that means there is a chance I will get less relief and what I take works the best anything could. I don't think people understand that 80% of chronic pain doesn't respond well to opiates all it does is push the pain in the back ground I used to be an amazing artist but the meds and pain have just drained me.... Do u ever feel like u don't think u can do this another 10 or 20 years? I also have an over active live so its extremely hard to keep me sedated or to maintain a steady level of pain meds if the print out says it last 12 hrs it last a max of 8 for me. Its just always a struggle and some days I'd give anything just to have one week as a normal person

Jun 16, 2015 4:45 PM

Ferret your 15 and already have sever chronic pain? Oh BTW I mean that last post to u not dancer

Jun 16, 2015 4:53 PM

Lbm u never get disability the first or second try. It took 3 appeals before I got it and I have bipolar panic disorder twith agoraphobia and degenerative disc disease with spinal fusion l4 to s1 and after my second surgery to remove my internal bone stimulator and the degenerative part helped because it a lonely progresses but if ur in that bad a shape fight hard send in every xray ever MRI every in or out patient ever steriod shot or esi every pain pill and other medications u send them a freaking book and get your doc to write a letter too

Jun 16, 2015 4:55 PM

I know I guy in town that is on disability because he's an alcoholic but my best friend can't get disability because he's diabetic and that's not a life-threatening illness I beg to differ because I've seen him have full blown seizures and it looked like he was dying his sugar with in the single digits

Jun 16, 2015 8:33 PM

Killbill: everything you have just stated I feel the same exact way. One tip that I can tell you for those seeking your meds is I went out & bought a lock box for my meds so I don't have to worry about people taking my meds or that my little niece or nephew or friends kids don't get a hold of them as they have easy open caps on them for me... Just knowing all my meds are labeled (so I don't mix them up) & locked makes me feel better. I honestly can't understand why people like pain meds so much recreationally but then again I am in such pain they don't work & I guess me not understanding people wanting it is the same as them not understanding my pain or the amounts of meds that are necessary just to get out of bed .

Jun 16, 2015 8:52 PM

Yeah I know I don't get it either I'm at 3 Roxie 30s and a 100mc patch every 48 and I would give my left leg and my car to never HAVE to take them I need them to move not just get out of bed and I've been on them since 2010 and like I said they have only been upped 2 times since I started I do not get high they aren't fun they make like almost Barrable. I have a safe bolted in my closed floor I put mine in a pill divider these days dose has a place and since I my doc is nice and understand in the real world its take an extra break thru pill or east 900 dollars for a shot of zofram and toridol I know I spell them wrong point being I wasn't throwing up and it wasn't inflammation so its wasting money I don't have imma take the pill and my doc said he completely understood just have it in my urine for the record we all know we have to sign a 50 contract every year we can't get pain meds unless its an emergency life or death. But I left for the weekend 3 years ago and my house was broken into they stole my computers my TVs and cut the floor up to get the safe so its nice to have but junkies are creative. Its just like a spit in the face my junkie cousin goes ones a month doesn't have to take a drug test and instead of giving him subozone with the opiod blocker they give home subutex it have the high but allows him to keep takes pills. We are judged constantly by doctors pharmacys friends and family and they don't get that we don't enjoy one second of it. My aunt has a disorder I don't know the name is weird but her blood vessels in her arm megs and head dilate and cause extreme pain and my grandmother told her she would feel better can could get out if she wasn't popping pills. I should prolly start therapy again just to have someone to vent too just thought maybe this could do that because there are people like me and understand I just never saw myself literally falling apart slowly this early in life sometimes its just over whelming at times

Jun 16, 2015 9:06 PM

I just started biofeedback therapy about 8 months ago & all I can tell you is that it doesn't work however my therapist has been a godsend. I see her every week. I never liked going to therapy or I would dread it when I was younger,however I now look forward to seeing her every week. I walk out of her being able to breathe & the connection I have with her even though she doesn't understand the pain nor tries to pretend to for some reason most days I go to her I cry about things that I don't even realize affected me that week of I walk out feeling somewhat relieved & can actually leave some crap behind & not continue to carry it with me... I have never been able to get that before so in that sense I feel blessed.. Also I have a mom & pop pharmacy I use & they know me & my family for years so I know they don't look at me like some other places would or put a stigma on me when it comes to pain pills. I also see my neurologist for my pain meds not a pain management dr as I have CRPS type II so it works out better for me with him & I have to be drug tested every so often but it's different then pain management & he specializes in my disease so I don't feel like he thinks I am looking for anything more then relief. I have actually told him no to several medications & I have lower dose meds , but I don't take the exact amount each day. It all depends on the day. Sometimes I take less & sometimes I take more. That's why I keep it at a Low dose & on bad days I walk around like a zombie but on what are my normal days or what people would a pain scale of 7, I can take a lower dose & be as good as it gets for me... Sometimes I know not taking my meds at a higher dose does more harm then good but I don't want to feel drugged out all day everyday. But that's just me.

Jun 16, 2015 10:26 PM

I don't think my chronic pain is as bad as a lot of people's, I was functioning for a year longer than I had expected. Yes I do often think I won't be able to take another 10 - 50 years, but I'm just trying to keep moving so there is less stress. I guess all I can do is just look at the close future (like the next year), and what I want to do after high school.
I go to an arts school, so I can relate to losing any ability to do art. During second semester, I dropped down to 3 classes: Writing Group, Spanish, and Acting Theory. I am usually pretty active (mostly hiking and swimming) and have a fast metabolism so that most things wear off in half the time they are supposed to.
I have to take melatonin 10 minutes before bed to get any effect from it, and it wakes me up 1/3 of the times I use it. Ialso wonder what it's like to be normal. I'd bet is tough, just different. Maybe there would be more emotional pain, but I have no idea.

Jun 16, 2015 10:46 PM

I had to quit music. I was considering becoming a professional musician (basically, the difference was getting paid for it). I would have liked to have been a musician. In high school, I wanted to go to RISD for visual art, but my dad said no. So then there was music. Then no music.

Then my flute was stolen--like losing a kidney... It was an expensive instrument--basically the one right below professional (the pro one would be like buying a car).... I had it for 14 years. I took it to Italy to play concerts when I was 16. I bought it with a good friend (she was a singer) who died when we were 23---we went to LA, and bought it from a flute player in the LA Phil. One of my flute buddies--she's gone on to a great career.

I've got pain. :P... I'm thinking about buying another flute if I can get the money together. I've got the procedures now. ??

Jun 17, 2015 1:19 AM

Killbill87 did you find the group on fb?

Jun 17, 2015 2:17 AM

No not yet I'll look it up in the morning I just took my phenergan to get some rest haven't set in 48 hours had a flare up that's what led me here. Long story short I sleep walk on ambien and lunesta is to short acting it makes me pissy like xanax does I have to take long acting benzos for a muscle relaxer and for my panic disorder two birds one stone lol. So phengeran is the only thing I'm comfortable taken an only when ive pass the 35 hr no sleep mark. I was stacking my pillows in a pile the only way I can sleep is if I'm sitting up and I got a beep from this app to check it. I'll look in the morning when I get up if u feel comfortable just add me u have no worries I'm a married gay man lol plus I definitely don't have the energy to cyber stalk u the only reason I would post any thing with u in it would but a tag to do with pain management or the like. But I respect u off ur not comfortable adding me if u don't and I still can't find it I'll drop u a message on here thanks for reminding me though

Jun 17, 2015 1:17 PM

Killbill87, welcome to the community. I have been in chronic pain for close to 30 years. I have several auto-immune diseases and it has really destroyed my life in many ways. It takes a lot out of me and I have to say that I try very hard to not let it run my life or to completely take it over. Finding this wonderful community has made me feel not so lonely, useless and a burden. I do as much as I can for my family (and friends when they need me) and I try to never, ever ask for anyone to help me unless I absolutely need the help. There are so many people here that have so many different illnesses and diseases but we all have one common denominator.. We all suffer chronic pain. This is a no judgement zone. We talk, laugh, cry, vent, give advice, reassure one another and try to make each other's day a bit brighter. I hope that you can find that to be helpful coping with your pain. Many of us discuss natural and organic methods of treating out pain with different kinds of foods and herbs, spices and also through meditation, yoga, breathing, biofeedback, singing, gentle stretching, etc. hang in there and keep on checking in on the posts. I'm sure you will find it very helpful. All the very best to you. I hope you have a peaceful and less painful day.

Jun 18, 2015 9:38 AM

Up until 2008 my chronic pain was all in my spine and knees; DDD, osteoarthritis, and chondromalacia of the patella. I started having pelvic and abdominal pain in 2008, along with extreme insomnia, general all over deep arches, and fatigue. In 2010 a doctor found a 10cm made in my pelvis. By the time they removed it it had adhered to all my pelvic organs and muscles. They did 5 surgeries in one, causing damage to my bladder, and the outcome has caused a continued rising of new diagnoses and deteriorating health. This year alone I've developed Sjogrens, Hypothyroidism, tremors of unknown cause, and issues like my pelvic floor dysfunction & pelvic congestion syndrome, that are affecting my bladder and bowels. I had no idea why I was staying so fatigued. The fibromyalgia alone is hard enough but it didn't make sense to me. Then the thyroid and sjogrens jumped on board, along with changes in my heart (leakage and low suggestion of the blood) so that explains the fatigue.

I'd say I had a very healthy life, in spite of the spinal issues, until 2010. And regardless of all these chronic conditions & pain I now have, I still feel blessed. And like everyone else here, I had no one who understood until I found this wonderful community. AlwayZ described us best, understanding, supporting and caring! I wish you all blessings! 🙏🌼

Jun 18, 2015 2:55 PM

Thanks everyone. And it seems like after they found the juvenile ddd and the spinal fusion the pain for worst like 1000x worse than before the fusion and the pain cause my bipolar to bring me way down because the pain meds cause all kinds of side effect its an internal war. I think what really got me down lately was my psy doc told me I should be on all these meds she had the same thing done and isn't in any pain well that's fantastic but back surgery is only around 50% successful the other 50% are in misery the 12 esi I have had give me horrible mood swing its like we and I mean chronic pain sufferers its never just one thing its multiple things we have to deal with

Jun 18, 2015 3:50 PM

Killbill87, Not everyone responses the same period. It just shows, by her never having gone through any of this, she has zero understanding. 🙏🌼

Jul 14, 2016 10:39 AM

Hi all,
I too have been suffering chronic pain for near on thirty years since I was knocked down and got spinal and nerve damage, several ops later and lots of drugs, I'm currently going to have a pump fitted next month, it'll be inserted directly into my spine and deliver morphine liquid straight to my spine hopefully giving me some degree of pain relief, I'll keep you all posted has to how it goes, my sympathies to all out there who are suffering as I am Xxx

Jul 15, 2017 4:48 PM

I feel for you and have a similar battle. It's hard to know how to answer when someone says "how are you" many people say it in passing not really looking for an answer. Or the "are you ok" lol obviously not so I just started saying "no but than you" and most feel released and carty on with thier lives some say "no really can I carry that for you" or "what do you need"...people that really know me know not to ask just look at my face. I wish I had found this app two years ago when this all started....I have to take medical leave so my husband has become the only provider and it is stressful but I am proud of him for doing it in love and not holding it against me. I have a hard time keeping up with my house chores that are all mine as my husband is gone and drives truck. Its hard when I can't have my house as clean as I would like and people come over. I wish you the best of luck on your pain/health path!

Jul 18, 2017 12:29 AM

@killbill87. I am also bipolar. If you need someone to talk to pm me. I do understand. ☺ welcome to our group

Jul 18, 2017 10:37 AM

KillBill, you mentioned being afraid to have the hardware removed. I had a bunch of metal put into my knee. After the surgery I lost nearly all of my mobility. The pain NEVER stopped. I did a bunch of research on my own and went to dozens of doctors trying to find someone who would be willing to remove the metal. It took over eight years, but when I woke up from the surgery my knee hurt less than it had since getting the metal. It turned out that I am allergic to titanium and I have an autoimmune rejection response to anything foreign in my body. If you are truly rejecting the implants, or if you are allergic to them, then your body is under enormous stress just from having them. I'm so glad I had mine removed! Good luck

Nov 17, 2017 12:06 PM

I have post stroke pain a constant 7 I gee s burden to my loved ones. I'm new here today. Need help

Apr 28, 2018 8:09 AM

Killbill87. Wow if I didn't know better I would swear it's me posting what your saying. I haven't had surgery "yet" they want to but I'm scare to death. I see my primary Dr.on the 2nd of May. I'm going to have him exra my back because I think I'm rubbing bone on bone in my lower back. You can hear the grinding and hear the popping. So thanks for listening. Jenette

Apr 28, 2018 8:16 AM

Fatigued Fighter, glad that you were strong enough to stand up and says somethings wrong till you found a Dr. to listen and believe you. Your comment will help a lot of people stand up for themselves. Thank you

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