Originally Posted by Neurochic

Emily

At your stage in the process, its normal to desperately hope that the next drug or procedure will cure you. It won't if you have been correctly diagnosed. It will be part of a mix of things that may eventually make the pain reduce so that it is no longer limiting your life activities. The desperation and panic is loud and clear in your posts and this is normal too. You have an early diagnosis and are aware of the idea that if it is treated early and aggressively this gives the best hope. However, the stress and panic will actively make your pain and CRPS worse. You need to take a deep breath, try and take a step back and minimise the stress in your body and in your lifestyle. It's highly unlikely that even if you do achieve a remission, it will be an overnight magic bullet. If it is, it's highly unlikely you ever had CRPS.

You will have to work with a cocktail of medication, physical exercises, including really painful ones, equipment and therapies to achieve a remission or significant reduction over a period of a year, two or more to get there if you are lucky enough to manage it. During that time you will probably have to actively experiment with several medications at different doses in different combinations and the same goes for the non medical therapies.

My personal view is that patients need to try and put aside any theoretical or moral objections to taking various types of drugs to maximise the chances of pain reduction. You also have to accept that it is quite possible that you will have to take these drugs for many years. I expect to be on mine for the rest of my life. However, the quality of life that drugs can give CRPS sufferers can be amazing. Even without remission, each of my medications has an effect on my pain and other symptoms which, on balance, makes them worth taking, in spite of all of the unpleasant and difficult side effects. I couldn't live without the small amount of relief I get from them. You may never have remission but the medication can make your pain manageable. Yes, the drugs are only masking the pain. If you stop taking them, the CRPS pain is still there. That is what they do, nothing more. Some people do find that over time, if their pain is well managed and controlled, they can reduce the number or dose of drugs and the underlying pain has actually reduced though. This also happens with CRPS as the nature of the pain tends to change over time. Pain control is about allowing you to try and regain function in your limbs and life - this works in different long and short term ways. You will need to be your own advocate for treatment and support. You will need to fight the system and the doctors who are supposed to help you but aren't helping. This is reality.

..........At the moment you are trying to get to the doctor or ER immediately when you feel the pain is awful and you are in distress - you may have to come to terms with the fact that there isn't going to be a lot the doctors can do eventually. You will develop your own ways of coping with the pain though. Minimising stress is perhaps one of the most critical things you can do.

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