Its been a very long time since I last updated this small blog, but I thought I'd update on my progress for those interested.
I was re-diagnosed with Erythromelalgia in 2012 after seeing many specialists in and around the UK, finally seeing the right doctor at King's College Hospital London (Dr Robert Hadden). I had undergone 6 x regional sympathetic nerve blocks over an 18 month period to try and stem the symptoms to no avail. I also tried most tricylic and neuropathic pain inhibitors (lyrica, amitriptylene, neurontin, gabapentin, amitriptylene transdermal gel, aspirin, prednisolone, steriods) as well as TENS machine, acupuncture, all with little or extremely low symptom improvement.
Officially it was caused by 'trauma (surgery) by an abnormality of the distal small nerve fibres in the feet and not caused by the central nervous system. Selective abnormality of ion channels or certain neurotransmitters in the feet'.
I am no longer on any pain medication as the side effects outweighed the benefits. I modified my lifestyle cycling everywhere I can; working where I don't have to walk a great deal; wearing compression socks; not drinking alcohol very much and adjusting my diet according to my triggers. By not aggravating the condition (walking too far, consuming known triggers), I am able to have a positive improvement over many years. Five years later my symptoms are greatly improved to the point where my lifestyle is 95% back to normality. The trick to improved symptoms has been to stay within my envelope of limits and not to cause flareups by known triggers. Negative symptom fluctuations over several months have been caused by me 'over doing it' on a number of occasions. By staying very fit (LOTS of cycling) and very healthy and staying within my limits I have seen my symptoms thankfully improve over a long period of time.
I hope this can encourage other Erythromelalgia sufferers as well as those with CRPS.
I would thoroughly recommend registering on the following support site which has a wealth of knowledge on EM sufferers: http://www.livingwitherythromelalgia.org/
Tuesday, 6 October 2015
Saturday, 29 October 2011
First Pain Specialist Appointment
After being diagnosed with CRPS by a paediatric surgeon two months ago (and being prescribed 25mg Amitriptylene for 8 weeks); I've just seen a pain specialist who told me that it doesn't look like CRPS to him per se. His reasoning for this diagnosis is:
- Lack of severe hypersensitivity.
- Skin changes to white after pressure is applied (CRPS usually stays red apparently).
- After reaction trigger the symptoms can be alleviated by raising feet above the heart for 20 minutes.
Tuesday, 25 October 2011
Nail surgery possibly caused CRPS in both my big toes
In this post I will document my toenail surgery progression from initial intervention, to infection and the emergence of possible CRPS actually diagnosed as Erythromelalgia in both my toes. The photos are rather grim I'm afraid, but they clearly document my experience with toenail surgery and emergence and treatment of CRPS Erythromelalgia to date.
I have been suffering from ingrown toenails since my early teens and I knew I would eventually need to have toenail surgery to stop them ingrowing and causing infections in the sides of my toes (I had just been putting off for as long as possible - 17 years!). In April 2011 I finally plucked up the courage and went to see a Podiatrist who told me that I had incredibly wide nails and that I would definitely benefit from the procedure, known as a bilateral hallux nail surgery and phenolisation of the nail bed matrix. I went to see two Podiatrists who both came to the conclusion: I needed to have nail surgery to prevent the nails from ingrowing again.
The night before toenail surgery (extremely wide toenails)
I had local anaesthetic and somehow managed to watch the entire procedure. The nail surgery involved the following brief (non-technical) description:
1 week after nail surgery
After the toenail surgery I got infections in both toes quite severely (although not at all uncommon for this type of surgery). This required two doses of Flucloxacillin antibiotics for two weeks and this successfully got rid of the infection.
2 weeks after nail surgery
In the weeks that followed, I made regular trips back to the podiatrist to clean the wounds and get new dressings and the surgery seemed to be a success, i.e. no further nail growth at the sides or from the nail bed matrix. Considering there is a 30% chance of nail re-growth, I've been quite lucky not to have nail regrowth.
Once the infections had gone, I started to notice a red, hot, swelling sensations in each toe that became aggravated upon activity, such as walking or standing to cook after about 15 minutes.
3-4 weeks after nail surgery (infection nearly gone)
I went to see my GP and was told that it was most likely normal after such a procedure and was given another dose of antibiotics to treat the swelling and inflammation. I decided not to take the prescribed drugs as I felt it was not an infection issue.
Instead of taking antibiotics, I had several blood tests to detect if I had high CRP levels (which would indicate an infection in the blood or bone) that could explain the redness, heat and swelling.
9-10 weeks after nail surgery redness and swelling still there
Other blood tests included:
11-12 weeks after surgery, still swelling up and diagnosed with CRPS
I was told I had 'gross erythema from the hallux proximally to the ankle' and 'mild allodynia and pain on firm palpation' (as the images clearly show above and below). Basically both my feet were entirely red, swollen, hot and painful, but were not hypersensitive, as is a common effect of CRPS. I do not have abnormal hair growth on the toes either. The diagnosis was CRPS Type II as a sub-type injury caused by the nail surgery I had.
16-18 weeks after nail surgery about to take 25mg Amitriptylene drugs
I was told to take 25mg of Amitriptylene (also used to treat depression as it numbs the nerves) each night for 6 weeks, daily Vitamin C supplements and increase activity. There is a 30% chance that this drug will 'reset' the sympathetic nervous system response that causes the dilation of the blood capillaries, but in my case it has not resolved the condition, just mildly improved it. During this time I've felt pretty awful the first week and about 20% less awake feeling than I would normally, almost in a dream like state for most of the time. I have ~20% less feeling in both my hands as well.
I have been as active as possible, mainly cycling for 20 - 30kms when ever it is reasonable weather (in the UK, not that often but at least 2-3 times per week).
Whilst taking this medication I had the usual side effects but noticed a reduction in the spread of CRPS in my toes. It does not spread quite as far up towards my ankle. The time it takes for the inflammation to trigger has increased slightly, but has not solved the CRPS by any means. The intensity of CRPS in my toes is more or less the same.
Other triggers of the CRPS reaction include:
28 weeks after nail surgery: CRPS swelling in the right big toe.
The way I would describe the feeling of CRPS is this: imagine someone has struck both your big toes reasonably hard with a hammer. The feeling you would get 10 seconds after being struck - that warm, blood rushing, and swelling feeling you get when your body responds to a trauma, followed by emerging redness, swelling then pain.
I have now organised to see several specialists in CRPS in the UK (pain management specialists and further surgeons) to look at what options are now available to me. Once I have seen them I will post further blog entries and share my experiences.
I personally suspect that there could be other potential causes to this diagnosed CRPS such as:
*** UPDATE October 2015: I have actually been diagnosed with Erythromelalgia, not CRPS as was originally suspected. I shall update the blog with EM related info as soon as possible.
_________________
If you've been affected and/or have CRPS in your toes, please do get in touch and share your experience by leaving a comment. This will hopefully share vital knowledge between others in a similar situation. Lack of knowledge seems to be one of the biggest barriers right now for me and I'm sure also for many others too.
I have been suffering from ingrown toenails since my early teens and I knew I would eventually need to have toenail surgery to stop them ingrowing and causing infections in the sides of my toes (I had just been putting off for as long as possible - 17 years!). In April 2011 I finally plucked up the courage and went to see a Podiatrist who told me that I had incredibly wide nails and that I would definitely benefit from the procedure, known as a bilateral hallux nail surgery and phenolisation of the nail bed matrix. I went to see two Podiatrists who both came to the conclusion: I needed to have nail surgery to prevent the nails from ingrowing again.
I had local anaesthetic and somehow managed to watch the entire procedure. The nail surgery involved the following brief (non-technical) description:
- Three anaesthetic injections in each big toe.
- A sharp metal spike inserted into each side of the toes from the tip to the nail bed matrix to loosen the nail from the nail bed.
- Nails cut down at each side to where it meets the cuticle with a large pair of medical scissors (in my case about 5-8mm off each nail side).
- The cut sides were then gripped and rotated through 180 degrees and pulled, firmly out, ripping the nail from the nail bed matrix.
- At this point it was noted that the nail bed matrix (at the bone) was much wider than anticipated.
- A wax was then dabbed onto the top of the toenail to protect from phenol acid that was being prepared.
- Cotton buds were then dipped into Phenol acid and were inserted down the sides, where the old nail sides used to be, for 6 seconds on each side, twice.
- Metail spike was re-inserted into each side (for a second time) to scrape away at the bone to destroy the nail bed matrix of the sides that had just been removed.
- Once phenolisation was complete the sides were packed out with an absorbent gauze.
- Both toes were then covered in gauze and tube grip bandaging.
After the toenail surgery I got infections in both toes quite severely (although not at all uncommon for this type of surgery). This required two doses of Flucloxacillin antibiotics for two weeks and this successfully got rid of the infection.
In the weeks that followed, I made regular trips back to the podiatrist to clean the wounds and get new dressings and the surgery seemed to be a success, i.e. no further nail growth at the sides or from the nail bed matrix. Considering there is a 30% chance of nail re-growth, I've been quite lucky not to have nail regrowth.
Once the infections had gone, I started to notice a red, hot, swelling sensations in each toe that became aggravated upon activity, such as walking or standing to cook after about 15 minutes.
I went to see my GP and was told that it was most likely normal after such a procedure and was given another dose of antibiotics to treat the swelling and inflammation. I decided not to take the prescribed drugs as I felt it was not an infection issue.
7-8 weeks after surgery, redness, heat, swelling pain becomes more apparent
Instead of taking antibiotics, I had several blood tests to detect if I had high CRP levels (which would indicate an infection in the blood or bone) that could explain the redness, heat and swelling.
Other blood tests included:
- Blood sugar, red blood count, diabetes etc; and they all came back negative.
I was told I had 'gross erythema from the hallux proximally to the ankle' and 'mild allodynia and pain on firm palpation' (as the images clearly show above and below). Basically both my feet were entirely red, swollen, hot and painful, but were not hypersensitive, as is a common effect of CRPS. I do not have abnormal hair growth on the toes either. The diagnosis was CRPS Type II as a sub-type injury caused by the nail surgery I had.
I was told to take 25mg of Amitriptylene (also used to treat depression as it numbs the nerves) each night for 6 weeks, daily Vitamin C supplements and increase activity. There is a 30% chance that this drug will 'reset' the sympathetic nervous system response that causes the dilation of the blood capillaries, but in my case it has not resolved the condition, just mildly improved it. During this time I've felt pretty awful the first week and about 20% less awake feeling than I would normally, almost in a dream like state for most of the time. I have ~20% less feeling in both my hands as well.
CRPS after 6 weeks of 25mg Amitriptylene drugs, showing mild improvements if any.
I have been as active as possible, mainly cycling for 20 - 30kms when ever it is reasonable weather (in the UK, not that often but at least 2-3 times per week).
Whilst taking this medication I had the usual side effects but noticed a reduction in the spread of CRPS in my toes. It does not spread quite as far up towards my ankle. The time it takes for the inflammation to trigger has increased slightly, but has not solved the CRPS by any means. The intensity of CRPS in my toes is more or less the same.
Other triggers of the CRPS reaction include:
- Warm showers or baths (more blotchy pattern emerges).
- Consuming Alcohol.
- Tight fitting shoes.
- Warm air/sun temperatures (sat down in the sunshine for e.g.).
- Running for 5-10 mins.
- Walking for 15-20 mins.
- Cycling for 30-40 mins.
- Standing cooking for e.g. ~15-25 mins.
28 weeks after nail surgery: CRPS swelling in the left big toe after running on a cross trainer for 30 minutes.
28 weeks after nail surgery: CRPS swelling in the right big toe.
The way I would describe the feeling of CRPS is this: imagine someone has struck both your big toes reasonably hard with a hammer. The feeling you would get 10 seconds after being struck - that warm, blood rushing, and swelling feeling you get when your body responds to a trauma, followed by emerging redness, swelling then pain.
You can see where the edge of the new nail after surgery creates a pressure point on the skin around the toe.
I have now organised to see several specialists in CRPS in the UK (pain management specialists and further surgeons) to look at what options are now available to me. Once I have seen them I will post further blog entries and share my experiences.
I personally suspect that there could be other potential causes to this diagnosed CRPS such as:
- Sharp edges from where the old nail sides were removed.
- Possible overactive sympathetic nervous system.
*** UPDATE October 2015: I have actually been diagnosed with Erythromelalgia, not CRPS as was originally suspected. I shall update the blog with EM related info as soon as possible.
_________________
If you've been affected and/or have CRPS in your toes, please do get in touch and share your experience by leaving a comment. This will hopefully share vital knowledge between others in a similar situation. Lack of knowledge seems to be one of the biggest barriers right now for me and I'm sure also for many others too.
Video clip of a CRPS flare-up in both toes
Here is a short clip of a CRPS flare-up after taking a shower. Both feet go very warm, red, swollen and uncomfortable. I have fortunately not had any hypersensitivity (as is fairly common with CRPS), but instead a blotchy-red pattern that spreads to my other toes and up the bridge of my foot to my ankle.
If you have any experience of this condition in your toes or feet, please do get in touch. I am undergoing treatment to try and sort this out, but knowledge on CRPS is very sparse, so any feedback and knowledge is vital in helping to solve it.
7 Myths of CRPS
7 Myths About Complex Regional Pain Syndrome and the Facts that Dispel Them
Article by Karen Bishop, Yahoo! Contributor Network
The lack of awareness about Complex Regional Pain Syndrome has led to many myths. These myths can hurt the perception of CRPS that other people have. Here are seven myths about CRPS and the facts to dispel them.
Myth #1: CRPS is a rare/new disorder.
Fact: CRPS has been around for approximately 145 years. Doctor Silas Mitchell Weir and his collegues first wrote about CRPS during the Civil War. Some of the names it has been known by are: Causalgia, Post-traumatic Dystrophy, Shoulder-hand Syndrome and Reflex Sympathetic Dystrophy. In 1995 the International Association for the Study of Pain(IASP)felt Reflex Sympathetic Dystrophy did not adequately represent the whole of the disorder. They changed the name to Complex Regional Pain Syndrome.
Myth #2: CRPS does not spread.
Fact: In 70% of the cases of CRPS, it spread from the original location. It can affect any part of the body, including internal organs.
Myth #3: CRPS will go away in six month, a year, or 2 years.
Fact: Once you have CRPS, you have it for life. There is no cure and at this time, the treatments for this chronic condition do not work for everyone. If you are one of the lucky ones who go into remission, it can come back if there is another injury or for no reason at all.
Myth #4: Opioids do not help the pain of CRPS.
Fact: Using opioid medications can be very effective in lowering the pain level. They are used to help control the pain level in order to allow the patient to go to physical therapy. They also allow a patient to have a somewhat normal life. Without them, most patients would not be able to move or participate in daily life.
Myth #5: CRPS is a psychiatric disorder.
Fact: The pain is very real, as are the symptoms associated with it. No one can see the pain, but there are physical signs such as, color changes of the skin, loss of hair, and osteoporosis. Sometimes atrophy or contracture of the limb is also present. This myth is widespread among medical professionals.
Myth #6: Minor injuries do not cause CRPS, only major ones do.
Fact: The number one cause of CRPS is a minor injury or surgery. A sprain or broken bone are often the reasons heard when asking, "How did you get CRPS?" Minor surgery is a common reason as well. Surgeries for carpal tunnel, or to remove a neuroma from the foot.
Myth #7: If you don not get pain relief from a sympathetic nerve block you don not have CRPS.
Fact: Getting no pain relief from a block only means the pain is SIP, Sympathetically Independent Pain. Patients who get pain relief from a block have SMP, Sympathetically Maintained Pain. A series of blocks may be successful in putting CRPS into remission. It also may result in longer periods of relief with each block. This myth has caused delayed treatment for many people.
[Via: http://www.associatedcontent.com/article/1771382/7_myths_about_complex_regional_pain_pg2.html?cat=5]
Article by Karen Bishop, Yahoo! Contributor Network
The lack of awareness about Complex Regional Pain Syndrome has led to many myths. These myths can hurt the perception of CRPS that other people have. Here are seven myths about CRPS and the facts to dispel them.
Myth #1: CRPS is a rare/new disorder.
Fact: CRPS has been around for approximately 145 years. Doctor Silas Mitchell Weir and his collegues first wrote about CRPS during the Civil War. Some of the names it has been known by are: Causalgia, Post-traumatic Dystrophy, Shoulder-hand Syndrome and Reflex Sympathetic Dystrophy. In 1995 the International Association for the Study of Pain(IASP)felt Reflex Sympathetic Dystrophy did not adequately represent the whole of the disorder. They changed the name to Complex Regional Pain Syndrome.
Myth #2: CRPS does not spread.
Fact: In 70% of the cases of CRPS, it spread from the original location. It can affect any part of the body, including internal organs.
Myth #3: CRPS will go away in six month, a year, or 2 years.
Fact: Once you have CRPS, you have it for life. There is no cure and at this time, the treatments for this chronic condition do not work for everyone. If you are one of the lucky ones who go into remission, it can come back if there is another injury or for no reason at all.
Myth #4: Opioids do not help the pain of CRPS.
Fact: Using opioid medications can be very effective in lowering the pain level. They are used to help control the pain level in order to allow the patient to go to physical therapy. They also allow a patient to have a somewhat normal life. Without them, most patients would not be able to move or participate in daily life.
Myth #5: CRPS is a psychiatric disorder.
Fact: The pain is very real, as are the symptoms associated with it. No one can see the pain, but there are physical signs such as, color changes of the skin, loss of hair, and osteoporosis. Sometimes atrophy or contracture of the limb is also present. This myth is widespread among medical professionals.
Myth #6: Minor injuries do not cause CRPS, only major ones do.
Fact: The number one cause of CRPS is a minor injury or surgery. A sprain or broken bone are often the reasons heard when asking, "How did you get CRPS?" Minor surgery is a common reason as well. Surgeries for carpal tunnel, or to remove a neuroma from the foot.
Myth #7: If you don not get pain relief from a sympathetic nerve block you don not have CRPS.
Fact: Getting no pain relief from a block only means the pain is SIP, Sympathetically Independent Pain. Patients who get pain relief from a block have SMP, Sympathetically Maintained Pain. A series of blocks may be successful in putting CRPS into remission. It also may result in longer periods of relief with each block. This myth has caused delayed treatment for many people.
Paper: The Management of Complex Regional Pain Sydrome (CRPS)
There is a good journal article on managing CRPS by H. Hooshmand & E. M. Phillips, Vero Beach Florida available to download for free.
Abstract
The first step in the management of complex regional pain syndrome (CRPS) is coming to the arrival at an accurate diagnosis. CRPS is diagnosed by inclusion and not by exclusion. No laboratory tests can diagnose CRPS 100% of the time. The use of scintigraphic triphasic bone scans (STBS) may help diagnose CRPS in approximately 55% of the cases in the first six months(1). The research of Chelimsky et al., found STBS to be abnormal in no more than 25% of CRPS . The use of infrared thermal imaging (ITI) is useful in the diagnosis and management of CRPS pain. It provides an overall picture of temperature changes in superficial deep structures (27mm). ITI provides useful clinical information when applied with proper technique. It provides diagnostic and therapeutic information limited to diseases involving autonomic, neurovascular, and neuroinflammatory changes.
Abstract
The first step in the management of complex regional pain syndrome (CRPS) is coming to the arrival at an accurate diagnosis. CRPS is diagnosed by inclusion and not by exclusion. No laboratory tests can diagnose CRPS 100% of the time. The use of scintigraphic triphasic bone scans (STBS) may help diagnose CRPS in approximately 55% of the cases in the first six months(1). The research of Chelimsky et al., found STBS to be abnormal in no more than 25% of CRPS . The use of infrared thermal imaging (ITI) is useful in the diagnosis and management of CRPS pain. It provides an overall picture of temperature changes in superficial deep structures (27mm). ITI provides useful clinical information when applied with proper technique. It provides diagnostic and therapeutic information limited to diseases involving autonomic, neurovascular, and neuroinflammatory changes.
Monday, 24 October 2011
CRPS after Toenail Surgery
I've just started putting together this blog with information I have so far gathered about CRPS. I have recently been diagnosed with CRPS after I had routine toenail removal surgery (or bilateral hallux nail surgery) in April 2011.
I'll be adding a case study of my surgery and subsequent CRPS complications over the next few weeks with the aim of getting feedback from others who may have had similar complications and/or CRPS in their toe(s).
More updates to follow.
I'll be adding a case study of my surgery and subsequent CRPS complications over the next few weeks with the aim of getting feedback from others who may have had similar complications and/or CRPS in their toe(s).
More updates to follow.
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