Emily

I know this isn't going to feel like im helping here but you need to remember what I said about CRPS being a marathon not a sprint. You have got to try and stay calmer than this because I promise you, the only person you are hurting is you. The stress and extreme anguish you are feeling is normal at this stage in the process but I guarantee you, its making your pain countless times worse.

I do know how desperate you feel, I've been there. I spent a long time there. It's a horrific place to be and I can't tell you the magic 'answer' to getting to a better place. It's a mix of time, meds, good people, psych support, physio, distraction, exceptional determination, using my painful limbs, coping strategies, finding a new identity and ultimately some level of acceptance. I know you are not ready for most of that and are frantically looking for medication relief.

Even at this stage you need to be a bit patient. Sometimes you need to be prepared to wait for meds to start to work for you. Cymbalta has been good for me but it took time - the starter dose of 30mg was ineffective and it wasnt till i got to the max dose of 60mg that it had any effect. I know some US doctors prescribe higher doses but that is not the manufacturers recommended max dose and whilst it might work for individuals, there is no clinical trial evidence that these non-recommended doses are any more effective.

I also have to be honest and tell you that my main pain relief comes from fentanyl (which is a narcotic) at a dose that means the side effects limit my lifestyle drastically. It's that or unbearable pain - this is the reality of the only life choice I have. Raise the option of opioid medication with your doctor sooner rather than later - at least discuss the options but you will likely need to bring it up. I am lucky that in the UK we don't have any of the issues you have in the US being prescribed these drugs nor are there problems with continuous prescriptions or insurance companies refusing refills etc. I see our system being slated often on these boards but there are many things that are better than in the US, especially for people with expensive, chronic conditions.

The unfortunate thing is that nobody else can or will understand your pain - it's unique to you. Someone else with the diagnosis can try and will know how bad their pain feels to them so its easy for them to empathise. A decent medic will be sympathetic and understanding, they will be knowledgable about the condition and treatments and they will do their best to ensure you are not waiting unnecessarily for medication but that is really all they can do. I have been so frustrated and angry many times with the lack of understanding and interest from many doctors but that is something you will need to come to accept for yourself.

Doesn't your PCP have a system for emergency appointment slots? Can you access one? Find out who is really in control of getting you an appointment at your doctors office (receptionist, admin etc) and go out of your way to make a good relationship with them so that they know you are genuine and might go the extra step to get you seen. I know you are miserable but waiting a week is truly nothing in this journey but feels like a lifetime.

I think you could get a lot of positive help if you also look at other ways of managing the pain. Lots of people on the site have non-medication tricks and coping strategies that they have worked out over time to cope with their pain. I may not be able to help because I have cold CRPS - no burning pain and no heat. My temperature and pain issues are all cold so I have various things that I use to help manage that. Ultimately though when its really bad I just have to go to bed, stay still and sleep. I know it will be better for a bit after sleep.

You need to talk to your partner soon about the options for him going out to work and contributing more. He somehow needs to step up to the plate and do more. You probably also need to find an age appropriate way to talk to your daughter to try and be honest with her about how bad the pain is and why she needs to do more to help in the home. I know that you are hiding it from her and she is young but is it possible you can explain it to her in such a way that she isn't frightened but realises why things are going to need to be different for a while so she has to step up and do more to help? Do you have any family or friends you can turn to to help you out a bit? You really need some real life (ie not Internet) support and help with coping and practical help. Friends will not hesitate to rally round and won't thank you if you don't go to them! Forget the cleanining and house chores if you can't do them - I promise the world will still turn!

Above all please try and not get yourself wound into a state because it will make everything worse. The most critical thing you can do is try to stay calm and reduce stress as much as possible. Stress, especially the constant negative sort you are currently having, has massive physiological effects on the chemicals in your body and the systems that control pain signalling.

Like I said, I am not sure this will be any help to you. I don't know what else I can say except useless platitudes (not my style im afraid) and I didn't want to say nothing since you are reaching out.