Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

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blizzard2014 03/25/2018

I quit my part time Janitor job four days ago due to the pain and stress of the job. First I had to take half of an extra pill to make it through my shift. Then I had to double up on my meds to make it through the shift. For the last three weeks, I was almost going to have to triple up on my meds in order to make it through my shift. I was barely hanging on my a thread. Going to the bathroom every 20 minutes would not fly on any other job. I was lucky to be unsupervised and able to go to the bathroom frequently without anyone noticing. I was also not completing all of my assigned tasks. But on this particular job, the boss pretty much left us alone as long as the customer did not call and complain. I was doing just good enough to stave off complaints, but there were many areas of the building that were being neglected. On some rare days I could get a massive amount of work done. It was like I was super man pumped up on steroids, then I would be in pain and dragging for a week afterwards. My only redeeming quality is that I was dependable and friendly with the customer. Everyone liked me and I was always on time.

It's been four days now and I'm barely starting to feel like a human again. I am on less pain meds and back to limiting physical activity in order to control my pain. It was getting to the point that I would rest all weekend long too tired sometimes to even watch TV or come onto the internet, and I was still jacked up when going to work on Monday. I would sit i the car literally trying to psych myself up in order to go into the building and do my job. Without the double dose of pain meds 15 minutes before work (of which my pain doctor knew about and was ok with) I would have not even been able to do that much. I used to work 12 hour days and go home and still have energy to do stuff and to run around on the weekend. This four hour a day job literally sucked every ounce of life and energy out of me to the point where I didn't even have the energy to go to doctor's appointments. I was only getting my blood draws for blood thinners once every 2 months. Now i'm afraid to even try another job knowing I might fail even that.

So, if we CP'rs are going to feel like death at home, and like death at work, what is the upside to livig like this? I thought a respite from work would help me feel better, but it isn't helping as much as I thought. Are we supposed to fight tooth and nail and suffer just to hold down a job and then crawl into bed 12 hours a night and shut ourselves in all weekend while on the mend, then wake up on Monday and force ourselves to do it all over again. Even sitting on a couch all day brings pain and discomfort. I don't see where there will ever be a happy medium working, or even living on a disability check. I am having a hard time acceting all of this again. I gave up and that didn't work, I went full bore to work and that didn't work. Now I have to figure something else out. If it were not for the cat I adopted who howls every time I leave the house for an extended period of time and needs me, I would be in a much darker place right now.

Even if I won the lottery today, it wouldn't change anything. I would still wake up every day in pain and feeling like crud. I still wouldn't have the energy to go out there and enjoy life. I'm just struggling to find my way again. I know for certain that an 8 hour day, or even a six hour day is never going to happen. I might be able to do a six hour day and then a day off etc, but never an 8 hour day, or a back to back 6 hour day. I worked a few 8 hour days and limped for a week afterwards. Maybe it's time to go back to driving one way again. I used to do that in 2009. I used to drive east then drive back west and then take 2 weeks off and net 1200 a month after expensis. I know it will take a toll on me bigtime, but at least the engine will be doing all of the work. I'm just looking into surviving until I die these days. No more big plans for the future. I just want to survive until something big happens and then be done. I would not be able to go to school and work at the same time. I would have to do one or the other. And yet I can't figure out why I am in such rough shape. My hands are tight and cramping with charlie horses just typing this.

blizzard2014 03/25/2018

Sorry to be Debbie downer. I am really not looking forward to another however many years of this pain and mobility problems. I don't know how some of you guys find the strength to carry on. I need some motivational pills.

AngelaSpar7 03/26/2018

Hi my name is angela and i suffer in chronic pain. Our medications are being cut off. We are leading a national rally on april 7th all across the nation. Called patients not addicts. We must fight and march or we lose them. Are you willing to join us?

OlderCPer 03/26/2018

Jer,

You don't get to lump all CP'ers into one basket. Some of us work and manage our pain and are able to deal with being at home and doing thing.

It sounds like you need to see your Specialists (Nephrology, Diabetes Docs,) and see what needs to be done to get your meds straight to keep your BP straight.

You may not be able to do physical work anymore. But there are work from home jobs, there are jobs where are you have to do is make phone calls. There are data entry jobs, transcription jobs...those all you have to do is sit from home and do.

OlderCPer 03/26/2018

and Angela wants a man who can't handle 4 hours of work to join her for a March, give me a break!

blizzard2014 03/26/2018

That's funny OCP about the march. I used to travel 5000 plus miles in 7 days 6 years ago with no problems at all. I would be in a different state each day. Now I dread having to drive 20-30 miles at a time. I'm not saying there aren't some jobs to be done. I'm just saying how do we swallow the pill of things possibly never getting better. I would still be miserable sitting here making phone calls like I was when I was dispatching for my friend. But then again, I was pulling down 18 hour days. I have been considering starting a non-profit though. What I've seen is that a lot of disabled people/chronic pain patients actually have their own small businesses. They work when they fell well and take breaks when they do not feel well. I want to have a more flexible schedule. Not, ok, you have 4 hours to do this and that. But more of, you have to do this and that each day/week, but allow me to decide when to do it. A lot of jobs cannot be set up this way because of the way business operates, but some can.

I just wish companies would listen a little bit more. If you tell them you can do this much work, they always push for more. On the last job they would push me to cover the entire 8 hour shift whenever the other worker would flake out and it caused me to burn out off the job faster. I just wanted to do my four hours and not be bothered. I want to try fast foods next, a job where I merely stand in one position for 4-6 hours and not walking. It's mostly the walking around that big building and climbing the stairs that did me in. I think if I can stand in one place, I will be fine minus the peeing issue. But, again, companies will not honor the fact that I can only do six hours every other day. They are going to require me to work whenever they want, not when I want. So, the non-profit might be better.

blizzard2014 03/26/2018

I might even go for the medical billing thingy too. That's if I can con the hospital into letting me work for free for a year or two a couple times a week in order to get my 2 years of experience. I will than study for the certification. You can't get a job in that field without the experience. Since I have a place to stay, I can work for free as an intern for 2 years without going broke. So I might actually try that. I'm not going to just do nothing. I just need something that fits and then do it.

ItsJustMe2012 03/26/2018

You need to find out what your state requires if you want to start a non profit corporation. They are 501 (c) (3) under the IRS Code.

If you get to the point you cannot work. You can file for SSDI. If you have at least 20 work credits for 5 out of the past 10 years before you had to stop working. If you don't have enough credits. You can file for SSI. For SSI you must have little to no income or resources. If you do not qualify for food stamps due to finances. It is doubtful you are eligible for SSI on non medical. The medical requirements are the same for SSI and SSDI.

blizzard2014 03/27/2018

Thank you for the info It's. I do quality for the SSI. I still don't have enough work credits to qualify for regular SSDI. I have 6 more diagnosed medical impairments since I last filed, some of which are moderate/severe. But they are still going to fight me tooth and nail for benefits and a keep on doubting myself. Even though it was really bad when working, I start feeling a little bit better and then I doubt myself again until another flare comes, or until I try to do too much and get put back into my place. I know that if I do too much on the good days, I will pay for it, but I keep on allowing myself to fall into the same trap. Also, no matter how many times I try, due to the intense choking sensation I have whenever I try and use my BIPAP machine, I cannot use it for more than 3 hours at a time. I literally cannot fall asleep with it on. Without treating the apnea, all of my other conditions will not improve says my doc. But the doc's do not have any suggestions on how to get used to the mask other than reducing the pressure which will then not be enough to alleviate the apnea.

So, maybe I can get better with actual rest at night, but I will never know and SSDI will say I'm not compliant with wearing the mask and deny me. I can control all other medical issues, injecting, testing, but the pressure setting on that mask is the highest setting they have. I have severe resistance in the airways. I have even thought about getting a permanent treach hole put into my neck to alleviate the apnea. I know it contributes to this because my pain levels go off the charts whenever I have a rough nights sleep. So in a way I blame myself for some of these issues and feel as though I'm not doing enough. I even tried using Ambien and then putting the mask on, only to wake up with the overwhelming feeling of being suffocated and unable to return to sleep with the mask on. I take the mask off and right to sleep. I wish I could try harder. I will keep on trying. I kind of hate to go down the disability route again without exploring all options to get better.

I am on half my usual pain med dose. Not really even enough to be physically dependent now. But I am staying in the chair all day again. Laying in bed for me really eases the circulation related pains. Standing up for longer than 10 minutes starts to bring the pain levels back, so does sitting in a chair without my legs elevated. So I guess even if I was to start using an exercise bike to keep my legs strong, more meds would be needed. Just don't know what to do because the pain waxes and wanes. It tricks me. I wish I had someone to put me through some physical testing and tell me if it is as bad as I feel it is, or if it is all in my head.

blizzard2014 03/27/2018

The non-profit would be related around educating people on how pain affects those who have it and bringing awareness about people with disabilities.

jarrey 03/30/2018

Blizzard2014, sorry to hear about your troubles with CP and work. Have you heard of vocational rehabilitation? Each state has a department that focuses on helping people that have disabilities find employment. Each state is different in which services they can provide but most can help with retraining. Vocational Rehabilitation Counselors will help with career exploration if you don’t know what you want to do. Once you receive the training they have companies that their sole job is to help you network and find employment that works for you. Many say these departments are the best-kept secrets due to the multitude of help and services they can provide you. Depending on the state, they may be able to provide an assistive technology assessment and purchase adjustable desks, a computer, Dragon Naturally Speaking software (talk to text), etc.

blizzard2014 04/02/2018

Jarrey, I'm going to look into that rehab. I know they have job training for free if you are on unemployment here in CA. It's called unemployment development department.

blizzard2014 04/02/2018

They do help people with disabilities here in CA. There is an office close to me. I just need to get a doc to write that I am disabled first which my docs say I have severe issues, but have so far been unwilling to write a letter. The pain doc says it's the vascular surgeon's job to write, but the vascular surgeon has an office policy they do not get involved with disability paperwork. My PCP also does not fill out disability paperwork. Only a psychiatrist I saw briefly in 2016 will do it, but I really don't want anything to do with therapy after being told I'm playing the victim card because of my chronic pain.

blizzard2014 04/02/2018

I forced myself to work in pain and torment every single day for 8 months straight and the therapist said I'm playing the victim card because I was describing how much this stuff impacts my life.

jarrey 04/03/2018

blizzard2014, I have some experience with CA Department of Rehabilitation (DOR). The DOR is separate from the Economic Development Department (EDD) which handles short-term disability and training for people on unemployment. You should be able to walk into a DOR office and tell them about all of the disabilities that you have and they can attempt to help determine if you are eligible. Request that you would like to attend an orientation. The DOR can request records from your psychiatrist and may be able to determine eligibility that way. As long as you are serious about finding work that will fit with your abilities and remain active, the department should help you with finding that employment. If you are prescribed any medication it would be good to let the DOR know that as well. You can find the location nearest you at the link below. Good luck.

http://dor.ca.gov/DOR-Locations/index.asp

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