hey again --
i want to give you some really *strong* advice! the blocks need to be tried ASAP after diagnosis for the best results. the theory goes something like this: in the early months, the pain is "sympathetically maintained," still fully involved with just the sympathetic nervous system -- so sympathetic blocks sort of break the circuit and allow it to reset itself.
YOU NEED PHYSICAL THERAPY!!! actually, and no one know exactly why, our hands are treated by "occupational therapy." occupational therapists also deal with "activities of daily living" -- lovingly known as ADLs. like cooking! all the myriad ways we use our hands everyday -- and i bet you never thought about that until suddenly one hand was out of commission. i am still surprised daily by something that i am used to doing but cannot now.
a claw is a very bad thing and until your doctor orders OT for you (call him today! this has me upset...) -- you need to "work" that hand, no matter the pain. i know it hurts... but contractures can easily become permanent. an OT can arrange for a customized splint, too, and while that's unwieldy and stuff... it will help. i am going to get one in a week or so. pain is always the issue
-- there are straps, etc.
so... let me be more cogent. the ideal situation is to have a block (for the upper body, a stellate ganglion block) and if it takes away the pain and warms up the hand -- you go IMMEDIATELY for an intensive therapy session so that they can treat the hand aggressively without causing you to scream bloody murder. that is the ideal and to tell the truth, i've yet to know anyone who has experienced that! the doctor dickwad, who did my first series of lumbar sympathetic blocks for my right leg, did try to have that happen -- but the blocks never worked. i was over 19 months out from the onset of crps/rsd and that made success much less likely. after each block, my foot did warm a few degrees -- but i also had horrible spasms and cramps, such that touching the leg was impossible.
ask your doctor to refer you somewhere where OT or PT is *immediately* available after a block... there is no reason not to try for the ideal!!!
i've been heavy-handed [ar ar!] in this post and apologize. it is just that time really is of the essence...
hang on. i'm going to go try and find a section of the official guidelines for treatment... be right back!
i'm baaacckkkk. and you know what? these treatment guidelines explain EVERYTHING and i urge you and all of us with crps to read them, study them, print them out, and give them to every doctor and member of our medical "teams." i keep forgetting about them but every time i go back to them, i am reinspired. i've spoken with dr. kirkpatrick down at usf (my brother teaches there) and while he is not the most optimistic person i've ever talked to, the man knows his stuff. he got into a spat with the people at rsds.org because he talks about some of the psychosocial aspects of the disease and for some reason they took that to mean he thought people with crps were nuts... which ain't the case, right? right??? anyway, they have thrown the baby out with the bathwater.
here's where the clinical guidelines are:
http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html
here is a handy section from that protocol:
Treatment
The single most important modality for treating the patient with RSD / CRPS is education. The informed consent process should be the focus of education. The physician defines the potential benefits, risks, alternatives (and costs). From the start, the therapeutic goals must be defined and accepted by the patient:
- Educate About Therapeutic Goals
- Encourage Normal Use of the Limb (Physical therapy in some cases)
- Minimize Pain
- Determine the Contribution of the Sympathetic Nervous System to the Patient's Pain
The cornerstone in the treatment of RSD / CRPS is normal use of the affected part as much as possible. Therefore, all modalities of therapy (drugs, nerve blocks, TENS, physical therapy, etc.) are employed to facilitate movement of the affected region of the body. Although physical therapy is an important treatment modality, significant misuse and overuse of this modality may occur. Often the physical therapist will treat the patient with RSD / CRPS the same as a stroke or a nerve plexus injury, (which will fail due to extreme pain and possible injury with passive manipulation). The primary goal of the physical therapist should be to teach the patient how to use their affected body part through activities of daily living. Swimming pool exercises are very helpful, especially for RSD / CRPS of the lower extremity where weight-bearing can be problematic. The goal of physical therapy should be to create independence from the health care system in the shortest period. Learning that "to hurt is not to harm" is difficult, but it is essential to avoid reinjury.
Learning the non-protective nature of pain due to RSD / CRPS takes time. For patients who are significantly impaired in their ability to mobilize their extremity, it is urgent to offer the patient the opportunity to determine the contribution of their sympathetic nervous system to their pain. This is accomplished by a sympathetic nerve block to the affected extremity (Figure 2). Future therapeutic options for the patient will depend on whether their pain is determined to be sympathetically maintained pain (SMP) or sympathetically independent pain (SIP). Published reports suggest that the best response to sympathetic blocks will occur if the blocks are given as soon as possible during the course of the disease.
The "LET'S TRY THIS NOW" approach is to be deplored because it indicates that the physician has not defined a strategy to achieve specific therapeutic goals in the shortest period of time. It also adds to the confusion, frustration, anxiety and depression of the patient, which may intensify the patient's pain and adversely effect the doctor-patient relationship.
Figure 2 
In Figure 2, a series 3-6 sympathetic nerve blocks refers to when
the first comprehensive update report would be helpful. Some patients
might require more than 6 sympathetic nerve blocks over
the course of treatment.
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be well and excusez-moi -- too much coffee.
prof
