Emily
I have been a regular reader of posts on Neurotalk but never a poster. I struggle with these kinds of boards because although I think they can provide great support to people who feel alone and desperate at times when they most need help, I always worry about the inevitable misinformation and incorrect medical opinions and advice that people share which can end up doing harm. I just want to be honest, not to decry this kind of board.

I felt I had to post when I've been reading your desperate and very sad posts. You sound as though you are drowning in the pain and fear and I know exactly what that feels like. I have had CRPS type 1 for over 5 years. I have this from surgery to my right ankle. I rapidly experienced the same pain in my left ankle. In time this pain developed in my fingers, hands, arms, shoulders and back although it isnt always present in my upper body - it comes and goes there. Amongst a myriad of symptoms, I live with constant pain in both lower limbs from my knees to my toes and I seem to be noticing the pain moving up into my knees. I am in the 5% minority with 'cold' CRPS which has the highest rates of associated movement disorder and the lowest rates of remission. Both features have sadly been true for me in a very significant and utterly life changing way.

For more information about your condition, I cannot recommend strongly enough that you start to read as much as you can and the website of RSDSA is the most reputable US source. The Dutch Professional Treatment Guidelines for CRPS are excellent and easy to read. The Netherlands government has invested in an 8 year programme of international research into CRPS which recently ended. Their understanding is without doubt the most coherent and up to date in the World. If you look online and search for the TREND consortium you can read all about the research and the people and organisations involved. I have personal experience of the Professor who ran the whole TREND programme - supremely knowledgable and very human.

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.

Try not to assume every single thing you feel or see is CRPS related. It's easy to do because you naturally become hyper vigilant looking for things going wrong. However, often this only makes you even more stressed. If you can maintain perspective and stay as relaxed as possible you have a better chance of minimising your existing and future symptoms.

You need to prepare yourself for the possibility that you might need to live with pain in the long term. The sooner you engage with both pain reduction and pain management techniques, the better your quality of life will be, both in the short and long term. You may well also have to cope with depression and anxiety into the bargain. I certainly have had to learn to live with depression as a consequence of both my chronic pain and the other severe, disabling features of my CRPS. I have throughout worked on coping with and trying to overcome my depression and I still do. 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.

I fear that your partner is not engaged with supporting you. This is important in two ways. Firstly because you are suffering and need help and support from others and secondly because you are unlikely to be able to provide much support to anyone else during the time that you are struggling so much yourself. Only you can decide how to deal with this but don't do anything too hasty especially if you could be in a depressed state. You must keep communicating though and I'm sure that eventually you will resolve your relationship issues one way or another. Many partners find that they simply cannot cope with the significant illness or disability of their loved one. Others rally round and do an amazing job with the end result being a closer relationship. Sometimes it merely speeds up the end of a relationship that wasn't going to last anyway. If your partner is unable to help you, use your friends and family as much as you can - you will need them and they will want to help you. I know many people who have suffered serious medical conditions and disabilities and generally they have gone on to find fantastic partners who simply accept them complete with their medical and physical impairments. It's not the end of the dating game!

I'm not meaning to sound harsh, I just want to give you the honest thoughts of someone who has been where you were but who is now in an emotionally better place. This is the reality of a diagnostics of a condition like CRPS for so many people. If you can accept that, I promise you it will help you cope more and panic less. Accepting it doesn't mean that you are giving up on your aim of finding remission. Managing CRPS and coming to terms with accepting the condition is a marathon not a sprint and at times it will feel like the worst full time job you ever have. It is incredibly hard to deal with all of this through the misery of unrelenting pain but it can be done and you will get there. Many people have gone through this and they manage to have good lives in spite of CRPS but you need a lot of patience.

If I haven't helped you then I apologise but I would have been dishonest to you and myself if I'd said anything else. Keep posting and people will support you.