Quote:
Originally Posted by fewdalord
i was diagnosed 4 weeks after symptoms (from the trauma of a bicycle accident) and will start PT next week. Anyone have this type of start?
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Fewdalord
I can see that you have been posting a lot given your recent diagnosis so apologies if I have missed anything and its in another of your posts. I thought I'd give you a bit of a "round up" of my thought rather than reply all over the board.
I don't quite understand your trauma injuries - I don't know what you mean by a "knot" for instance. I assume that you will have 2 desired PT outcomes - rehabilitation from your trauma injuries themselves and also the "treatment" of your CRPS. Just be clear that the physio you see understands what both goals are, how you will get there and that the treatment path for one aspect is compatible with the other.
I am not sure what symptoms you have that have allowed such an early diagnosis - maybe it would be useful if you gave us more detail on that? Then people could make other suggestions of how some of their specific symptoms have been tackled. I'd expect that any traumatic injuries needing PT would produce the sort of symptoms yyou described even 3 weeks after the injury. If you were given a certain diagnosis of CRPS so rapidly but with what sound like relatively "mild" signs or symptoms then make sure that you question the diagnosis.
Please don't misunderstand, I am not suggesting for a second that you don't have CRPS but it is a diagnosis that can only be reached after all other possibilities have been ruled out and it can really mess up your insurance and so on if you have such a potentially chronic and devastating diagnosis so it needs to be right. I think its pretty early after an injury to get a definitive CRPS diagnosis without showing fairly extreme and unmistakable symptoms.
Please don't go into this thinking that early PT makes CRPS vanish for anyone - you will only be disappointed. Whilst trying to remain positive, you need to try and protect yourself from unrealistic expectations because when they are dashed, you will find it even harder to recover and bounce back.
Make sure that your PT is actually addressing your CRPS and your injury rehab. Even people who achieve what they might regard as remission, usually have a longish and painful slog to get to that point and for many they have to keep up PT exercises to remain well. Embarking on early PT may benefit you and may not. For some people, like me, no matter how hard they try with PT and no matter how early it starts, it simply doesn't help.
As someone else said, PT isn't the whole treatment package you'd expect with CRPS. It would be normal to start a "cocktail" of drugs that are appropriate to your pain levels and it would also be normal protocol to carry out early sympathetic blocks which are used as both a partial diagnostic tool and for some people they also have a therapeutic value by providing symptom relief. Again there is no guarantee that these will work and for some people they seem to make things worse. I think you said that you had started cymbalta but it would be normal to be taking have a basic pain drug like paracetamol or ibuprofen which works at a more simple level on pain and/or inflammation.
The pain and other symptoms can vary a great deal over time and day to day. Some people have severe pain from the start and for others it is milder at times or it may build up more gradually over time. There is no way to predict what will happen to you. The idea that CRPS follows "stages" is largely regarded as an outdated theory since so many people simply don't follow the suggested symptom pattern that the staging theory suggested. It is better to think more generally about the fact that the symptoms you have now may progress and change over time. I have very significant and rapid changes in my symptoms over the first 18 months but over the last 3, they have stabilised. Some of that may be drug related, some may be time and some may be pure coincidence - nobody will ever know.
Keep a pain and symptom diary - this allows you to keep an objective record of what is happening. It is critical for medical appointments. Trust me, looking back in a few months you won't remember how you felt now so it is super-important to keep a record.
I think someone else suggested it but the single most important thing you can do is educate yourself. Use the rsds.org site and start reading your way through all the articles and information. You need to be a well-informed patient and take responsibility for your treatment - most doctors have no idea about CRPS so you need to understand what it is all about, what treatment options you have and then push for what you want.
I hope that it goes well for you. At least for now things seem to be reasonably managable for you and I hope that you do improve rather than ending up with significant pain and disability like I and others here have.