CRPS Treatments...
The treatments for CRPS are many and varied. One of the huge frustrations is that what works well for one of us may do absolutely nothing for someone else. What seems fairly evident is that early treatment is important. The treatments I've been through to date -
Graded Motor Imagery: Graded Motor Imagery - Lateralisation and Mirror Therapy - hasn't been helpful to me personally, but there is certainly good evidence out there for its use. A big thing in its favour is that its readily accessible, and there's very little if any harm that can be done. Essentially it involves re-training the brain to view and use the affected limb/s normally. It's been used for different forms of chronic pain and phantom limb syndrome, as well as CRPS. A good, basic explanation can be found here.
Physiotherapy and movement: Activity is CRUCIAL. It's incredibly tempting to keep an affected arm or leg still. It hurts, naturally we want to protect it. In a normal situation, that's what pain does - it's a protective mechanism - it's there to stop us from harm. With CRPS the important thing to remember is that "It hurts, but doesn't harm". This doesn't mean that we should push through pain barriers until the pain is so intense that we can't move, but that a little bit of pain is okay. The ideal is to push a little bit further each day, to increase that tolerance.
It's harder than hard - and I'm the first to admit that it's a struggle. When you have average daily pain levels of 7-8/10, which is enough to have you persistently nauseated it's hard not to go overboard when you finally see a good day. Pacing is an important thing to learn - you get nowhere with physio or general exercise if you can't pace. Aim for 3 steps today, 4 steps tomorrow. Small goals.
Sympathetic nerve blocks: I've had little success with these, but they can be enormously helpful to some people. In the case of lower limb CRPS, a procedure called a Lumbar Sympathetic Block (LSB) is used. For upper limb CRPS, a Stellate Ganglion Block (SGB) The idea behind these is that the sympathetic nervous system plays a role in maintaining some of the pain and signs of the CRPS - and that blocking the nerves will relieve this. With a 'successful' block, the limb will be warm, pink, less painful.
My first LSB gave some relief in colour and temperature, but very little pain relief. What pain relief it gave wore off within hours. A prolonged block greatly improved the signs, greatly reduced the oedema, but began wearing off with the block still in place.
I have had only one SGB, for my right arm. I had no pain relief, other than for a couple of hours from direct effects of the local anaesthetic - during which time my arm was also paralysed.
Medications: There are an enormous number of medications used to try to manage CRPS pain. These most commonly include anti-depressants, epilepsy medications, anti-inflammatories, muscle relaxants and opioids. For each patient, it's a matter of finding the right medications, at the right doses and in the right combinations.
Transcutaneous Electrical Nerve Stimulation (TENS): TENS involves the placement of electrodes on the skin over the painful area, and the passage of a gentle current through the skin and underlying tissues. It is supposed to mask pain by creating a gentle tingling and is very helpful for some people. For me it was very painful.
Spinal Cord Stimulation (SCS): SCS involves implanting electrodes over the spinal cord, and attaching them to a small battery pack implanted under the skin of the abdomen or buttock. The idea is that it creates a different sensation - usually a tingling - and helps mask pain signals. For me, the SCS has helped to reduce my pain. I still have major troubles with deep bony and muscular pain, but it reduces the sensitivity and burning sensation over my skin. A major downside of the SCS is that the leads can move, requiring further surgery. This has happened to me several times now.
Botox, Bracing, Serial Casting: My CRPS has lead to dystonia - basically abnormally muscle tone - which has caused my feet and ankles to be pulled inwards and under. I have had two 'rounds' of Botox injections, which aim to temporarily paralyse the problem muscles. This gave me some, albeit very short-lived, relief but was incredibly painful. The use of Ankle-Foot Orthoses (AFO's) and serial application of casts hasn't been too successful either.
Intrathecal Pump (Baclofen - muscle relaxant & Bupivacaine - local anaesthetic): Initially I had a trial in hospital lasting a few days. I had repeated injections into my back to gauge whether the baclofen would be helpful for me or not. Although it took a high dose, I had a lot of relief. My feet have remained in a fixed inverted posi
Ketamine Infusions
In Progress... please bear with me
Graded Motor Imagery: Graded Motor Imagery - Lateralisation and Mirror Therapy - hasn't been helpful to me personally, but there is certainly good evidence out there for its use. A big thing in its favour is that its readily accessible, and there's very little if any harm that can be done. Essentially it involves re-training the brain to view and use the affected limb/s normally. It's been used for different forms of chronic pain and phantom limb syndrome, as well as CRPS. A good, basic explanation can be found here.
Physiotherapy and movement: Activity is CRUCIAL. It's incredibly tempting to keep an affected arm or leg still. It hurts, naturally we want to protect it. In a normal situation, that's what pain does - it's a protective mechanism - it's there to stop us from harm. With CRPS the important thing to remember is that "It hurts, but doesn't harm". This doesn't mean that we should push through pain barriers until the pain is so intense that we can't move, but that a little bit of pain is okay. The ideal is to push a little bit further each day, to increase that tolerance.
It's harder than hard - and I'm the first to admit that it's a struggle. When you have average daily pain levels of 7-8/10, which is enough to have you persistently nauseated it's hard not to go overboard when you finally see a good day. Pacing is an important thing to learn - you get nowhere with physio or general exercise if you can't pace. Aim for 3 steps today, 4 steps tomorrow. Small goals.
Sympathetic nerve blocks: I've had little success with these, but they can be enormously helpful to some people. In the case of lower limb CRPS, a procedure called a Lumbar Sympathetic Block (LSB) is used. For upper limb CRPS, a Stellate Ganglion Block (SGB) The idea behind these is that the sympathetic nervous system plays a role in maintaining some of the pain and signs of the CRPS - and that blocking the nerves will relieve this. With a 'successful' block, the limb will be warm, pink, less painful.
My first LSB gave some relief in colour and temperature, but very little pain relief. What pain relief it gave wore off within hours. A prolonged block greatly improved the signs, greatly reduced the oedema, but began wearing off with the block still in place.
I have had only one SGB, for my right arm. I had no pain relief, other than for a couple of hours from direct effects of the local anaesthetic - during which time my arm was also paralysed.
Medications: There are an enormous number of medications used to try to manage CRPS pain. These most commonly include anti-depressants, epilepsy medications, anti-inflammatories, muscle relaxants and opioids. For each patient, it's a matter of finding the right medications, at the right doses and in the right combinations.
Transcutaneous Electrical Nerve Stimulation (TENS): TENS involves the placement of electrodes on the skin over the painful area, and the passage of a gentle current through the skin and underlying tissues. It is supposed to mask pain by creating a gentle tingling and is very helpful for some people. For me it was very painful.
Spinal Cord Stimulation (SCS): SCS involves implanting electrodes over the spinal cord, and attaching them to a small battery pack implanted under the skin of the abdomen or buttock. The idea is that it creates a different sensation - usually a tingling - and helps mask pain signals. For me, the SCS has helped to reduce my pain. I still have major troubles with deep bony and muscular pain, but it reduces the sensitivity and burning sensation over my skin. A major downside of the SCS is that the leads can move, requiring further surgery. This has happened to me several times now.
Botox, Bracing, Serial Casting: My CRPS has lead to dystonia - basically abnormally muscle tone - which has caused my feet and ankles to be pulled inwards and under. I have had two 'rounds' of Botox injections, which aim to temporarily paralyse the problem muscles. This gave me some, albeit very short-lived, relief but was incredibly painful. The use of Ankle-Foot Orthoses (AFO's) and serial application of casts hasn't been too successful either.
Intrathecal Pump (Baclofen - muscle relaxant & Bupivacaine - local anaesthetic): Initially I had a trial in hospital lasting a few days. I had repeated injections into my back to gauge whether the baclofen would be helpful for me or not. Although it took a high dose, I had a lot of relief. My feet have remained in a fixed inverted posi
Ketamine Infusions
In Progress... please bear with me