Originally Posted by coosissypoo
"Remember this is not wriiten for pity but to let all know where I come from and I am scared to death"
LOL it sounds funny but not if you are the one feeling the pain.
I will never be able to return the the job life I had due to the meds and contant pain. I now have no life. Will I ever? What can I do to beat this I refuse to lie down and let it take me but I can't even crawl now. I am at my end I just want things back as they were before the surgery.
Start working from home again and you'll be suprised at what you can do. I used to employ 17 people in central London during the first 10 years of my CRPS and have worked from home for the last 6 years. I'm not being flippant, working from home gives you something to do and focus on, and that can distract you from the pain. The first thing is to work out what you can do.
With me I was the owner of a web development company but before that was a photographer. I came to sell some of my camera gear because I can't carry it and found that some lens caps were tremendously expensive. I figured I could always put a lens cap in a packet and post it, so I hired a storage unit, sourced caps from india and had some brands custom made (no logos so as not to fall foul of trading standards). Started selling on ebay at a price I thought was reasonable and sold out almost immediately. Re-invested the money, put my prices up, still sold out. Got so susccessful I had to write my own custom software to deal with the 8000 invoices I was issuing every six months. Went through the back of the amatuer photographic magasines and suppied the second hand trade with caps. Inside a year I was the biggest personal importer of caps according to HMRC who keep a log of these things for import duty. Then when the profit ceiling was reached, I moved onto something else.
Now this was easy and working hard distracted me from the pain. There were stumbling blocks like when TNT deliverd 2 tonnes of caps to my front door rather than the storage facility. At this time I was on Gabapentin and had aphysia and slurred speech so couldn't talk on the phone, so I used email and letters to communicate. My brain was also sedated by the pain killers and I was looking after a 18 month old and a newborn. Now with regards to pain management. I thought my IQ as wiped out by the sedation, that's not the case, but it took psychologists and a test on a pain management course to prove it to myself I was that convinced. My memory is rubbish though so I have to be a bit more organised and frequently find notes to myself that I cannot remember writing.
Now at the moment you are in what I would call "pain panic", it's overwhelming, your pain probably increases your adrenalin and cortisol levels because of the stress you are under. Pain also buggers the serotonin and causes depression in a lot of people. Things that I find help. a) never think of yourself as a sufferer, it's a negative word and any negativity will cause you to decline. b) use a laptop and work from bed if you have to. c) if your pain is constant in bed or out, then get out of bed, because you are still going to be in pain an you might as well do something. d) set yourself goals and write them down and tick them off, it's very positive to have a notepad full of things you managed to do. If you don't suceed the try again later. e) accept the condition, there's no point beating yourself up about something that is not going to change. I'm still gutted at having to give up my large business but I balance it with the fact that with CRPS II I probably acheived more even though the financial rewards weren't as great. f) don't become a "pain bore" where your conversation solely rotates around your pain, I've done this, you'll loose your friends eventually and become more isolated.
My experience of pain management courses is that they work maybe for two years and then you need a top up. The only benefit I really found from my courses was the IQ test because it is so easy to kid yourself into believeing you are incapable of doing things.
With regards to medication, cut out anything that is not working and experiment. It will hurt short term but reduce long term side effects. There is a high suicide rate in the UK among chronic pain patients and most of them are on tons of medication, you are mucking around with your brain chemistry so a cautious approach is best. Most pain management treatments are based around a standard approach tailored for the majority, so one of your drugs may increase your depression, with me it was anti-depressants which it turned out increased my depression.
A lot of courses are based on getting you to use the limb again. Do as much as you can and regard any progress as a positive thing rather than if you don't get 100% use back, as a negative thing. Only you can change your attitude although psychologist can prompt you in the right direction, at the end of the day it's down to you to find what you can succeed at and work on the best ways of compensating for the disease.
Frustrations. I have severe CRPS II it took two years of riding a bicycle to get my legs working to the level of using a stick, the bicycle was great because it meant I wasn't carrying my body weight so could solely focus on the limbs. What I find frustrating is people with slipped discs and not CRPS on benefits doing nothing. CRPS is disproportionate pain so don't fall into the trap that because some people are wangling the system, that it applies to you too, you can do more than you believe. Frankly no-one understands CRPS and there is not a single drug on the market that was ever made specifically for it, everything is side licenced, like anti-epileptic drugs that may have a benefit, which means the research in the field sucks.
Make the disease your own and take control of it, rather than letting it control you. Yes I state to experiment with your medication (and be careful and only test things if you know you are not going to go into withdrawal or have a seisure if you stop gabapentin), but the point is that you are in pain now anyway, it's going to last a long time and you need to tailor things to yourself, the worst that can happen is a temporary increase in pain and you've been there and dealt with it. You (and yours doctors) do not knwo 100% for example that your medication is not conflicting. Pregabalin can cause Edema, one of the symptoms of CRPS/ RDS, so you need to know that the benefits outweigh the negative. I only recently started coming to the forums not because I'm depressed or need support, but because I have an issue where vibration increase my pain past the level that the medication deals with, which means I am limited to however far I can limp so I'm looking for a solution, there may not be one but that shouldn't stop me trying.
I am not a nice sympathetic person, but I look at it this way, at the end of your life do you want to have spent the last 20 years with the condition dictating your life, or do you want to be able to look back and think damn I was unlucky but I fought it tooth and nail and succeeded in so many things ?