I need help I have Complex Regional Pain Syndrome?!
Question: I need help I have Complex Regional Pain Syndrome.?
I have CRPS and I am confused. I have been to several Doctors 2 who were pain management drs who basically told me after injections etc still in pain they cannot help me anymore. I am on pain killers and muscle relaxers for the pain but I want to try and live a semi normal life. The pain started in my left leg and now it is my right leg my feet and my right arm and hand. I have lost strength in my hand and wrist. I live in the NY area. If there is anyone out there who can suggest Doctors who specialize in the horrible dysorder. Please help it seems to be getting worse and I feel noe this (chill) I cant find the word for it, it feels under my skin and it feels like my skin is crawling. I am scared it is progressing quickly. Please help!Health Question & Answer
Answers:
Hi. I'm so sorry about your situation. Quite frankly, you need to find yourself a new doctor as soon as possible. Even if they are pain management doctors, the people you are seeing plainly have no idea about CRPS or its treatment.
It might be easier if you email me (seeing as though you don't allow either email or IM contact), but I'll give you what information I can here. There are so many more treatments available.
The most important thing is physiotherapy. You've already lost the strength in your hand & wrist, and you need to stop that from getting worse, as well as preventing the same from happening elsewhere. Keeping the CRPS-affected areas moving and maintaining your strength is crucial - just gentle movement, desensitisation, etc., to begin with, and gradually increasing this as you're able to tolerate it better.
I'm not sure what sort of 'injections' you've had, but I can give you a bit of a list of the treatments that are out there. (This is why it would be easier if you get in touch with me!). The first line treatments usually involve sympathetic nerve blocks and medications such as an antidepressant or anti-seizure drug. This can help make it easier for you to do some physio. If you've not tried them, I'd also highly recommend that you look into mirror therapy and graded motor imagery (Google the 'Recognise' program). There are then things like epidural infusions and intravenous ketamine infusions, which are usually continued for 5-6 days at a time. Moving on, there are also surgical options. There is the spinal cord stimulator, which relies upon electrical impulses over the spinal cord (which helps to modify the pain signals) and intrathecal drug pumps, which supply painkillers, muscle relaxants, etc., directly into the spinal fluid.
Please try to stay positive. If you want to talk, please feel free to email me. I've been living with this for 9 1/2 years. I have severe involvement of both legs & several complications, and am now in a wheelchair, so I know what a bastard it is.
Health Question & Answer
It might be easier if you email me (seeing as though you don't allow either email or IM contact), but I'll give you what information I can here. There are so many more treatments available.
The most important thing is physiotherapy. You've already lost the strength in your hand & wrist, and you need to stop that from getting worse, as well as preventing the same from happening elsewhere. Keeping the CRPS-affected areas moving and maintaining your strength is crucial - just gentle movement, desensitisation, etc., to begin with, and gradually increasing this as you're able to tolerate it better.
I'm not sure what sort of 'injections' you've had, but I can give you a bit of a list of the treatments that are out there. (This is why it would be easier if you get in touch with me!). The first line treatments usually involve sympathetic nerve blocks and medications such as an antidepressant or anti-seizure drug. This can help make it easier for you to do some physio. If you've not tried them, I'd also highly recommend that you look into mirror therapy and graded motor imagery (Google the 'Recognise' program). There are then things like epidural infusions and intravenous ketamine infusions, which are usually continued for 5-6 days at a time. Moving on, there are also surgical options. There is the spinal cord stimulator, which relies upon electrical impulses over the spinal cord (which helps to modify the pain signals) and intrathecal drug pumps, which supply painkillers, muscle relaxants, etc., directly into the spinal fluid.
Please try to stay positive. If you want to talk, please feel free to email me. I've been living with this for 9 1/2 years. I have severe involvement of both legs & several complications, and am now in a wheelchair, so I know what a bastard it is.
Health Question & Answer
Wow, that's scary. I'm not too familiar with this disease, but I hope you find what you're looking for. Health Question & Answer
Treatment
The general strategy in CRPS treatment is often multi-disciplinary, with the use of different types of medications combined with distinct physical therapies.
Physicians use a variety of drugs to treat CRPS, including antidepressants, anti-inflammatories such as corticosteroids and COX-inhibitors such as piroxicam, vasodilators, GABA analogs such gabapentin and pregabalin, and alpha- or beta-adrenergic-blocking compounds.
Elevation of the extremity and physical/occupational therapy are also used to treat CRPS.
Injection of a local anesthetic such as lidocaine is often the first step in treatment. Injections are repeated as needed. However, early intervention with non-invasive management may be preferred to repeated nerve blockade. The use of topical lidocaine patches has been shown to be of use in the treatment of CRPS-1 and -2. [16] [17]
Neurostimulation (spinal cord stimulators) may also be surgically implanted to reduce the pain by directly stimulating the spinal cord. These devices place electrodes either in the epidural space (space above the spinal cord) or directly over nerves located outside the central nervous system. Implantable drug pumps may also be used to deliver pain medication directly to the cerebrospinal fluid which allows powerful opioids to be used in a much smaller dose than when taken orally.
Surgical, chemical, or radiofrequency sympathectomy
The general strategy in CRPS treatment is often multi-disciplinary, with the use of different types of medications combined with distinct physical therapies.
Physicians use a variety of drugs to treat CRPS, including antidepressants, anti-inflammatories such as corticosteroids and COX-inhibitors such as piroxicam, vasodilators, GABA analogs such gabapentin and pregabalin, and alpha- or beta-adrenergic-blocking compounds.
Elevation of the extremity and physical/occupational therapy are also used to treat CRPS.
Injection of a local anesthetic such as lidocaine is often the first step in treatment. Injections are repeated as needed. However, early intervention with non-invasive management may be preferred to repeated nerve blockade. The use of topical lidocaine patches has been shown to be of use in the treatment of CRPS-1 and -2. [16] [17]
Neurostimulation (spinal cord stimulators) may also be surgically implanted to reduce the pain by directly stimulating the spinal cord. These devices place electrodes either in the epidural space (space above the spinal cord) or directly over nerves located outside the central nervous system. Implantable drug pumps may also be used to deliver pain medication directly to the cerebrospinal fluid which allows powerful opioids to be used in a much smaller dose than when taken orally.
Surgical, chemical, or radiofrequency sympathectomy
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