My name is Sarah Brade and I am 31 years old. I live in Manchester, England, UK and my pain problems began 13 years ago in 1996 when I was 18 years old. I suffered a severe UTI (cystitis infection) which reached its peak while I was abroad in France and it was very difficult to receive adequate pain relief and to tackle the infection as efficiently as I would have been able to at home. When I got back to the UK after a few courses of antibiotics no trace of infection remained but the pain in the bladder and lower back remained. Instead of hurting on urination as in acute infection, the only relief was now when urinating and the burning pain and sense of needing to empty the bladder was constant from that day until now. I was diagnosed with some kind of Interstitial Cystitis (IC) by different urologists and pain specialists over the subsequent years, but was often dismissed or not really believed.
Prior to the initial infection I had been an active person, playing hockey at quite a high level (field not ice hockey!), tennis, netball and swimming etc through my teens. I had just finished my exams to get into University and had been a ‘straight A’ student. I had had a very personally stressful year preceding the infection and had felt exhausted and worn down physically and emotionally for some time, but never expected anything like what was to come. I had to eventually forfeit my initial place at university and became very isolated from the lives that my peers were leading. Over the years 1996-2003 I was very housebound both with the level of pain but also the fact it caused me to continually need to be near a bathroom. I even had a bucket by my bed as I would need to pee so frequently it became exhausting going to the bathroom. Sleep has always been horrendous and the sense of urgency wakes me continually and makes relaxing in any way difficult. Distraction has always proved the best way for me to manage – watching TV, movies, listening to radio, arts and crafts etc, even when I can barely keep my eyes or ears open! Using hot water bottles (heat packs) and hot baths has been a key means of surviving the pelvic pain, even when they have caused my skin to burn in that area.
The interstitial cystitis pain was burning, raw like acid deep inside and responded poorly to analgesics and any other medication targeted at the bladder. Over the years I have seen endless alternative/complementary therapists and tried to find as much psychological support as possible but all to no avail in actually improving my symptoms. The pain over the sacral nerves and upper buttocks is intensely gnawing and burning and it can feel as if my back is breaking. Urologists were often surprised that more could not be found in the bladder itself to account for the level of pain and urinary urgency/frequency I was reporting. By 2000 I was feeling that something much more neurological was happening and with the help of the internet began to find out more about central sensitization and RSD/CRPS. By this time I could no longer discount the coldness / sensitivity / burning / numbness conundrum beginning in my feet. I often felt I didn’t know where to put my legs – they just felt wrong! My toes and feet felt as if they were in ice, but also burnt, looked discolored and from my knees down it felt paradoxically numb and hypersensitive. With little explanation of this at home I traveled to Florida in 2001 where I saw Dr. Hooshmand, unaware at the time that he was not a reputable expert in the field. He did however do a thermogram which showed very severe changes to my lower legs and indications of problems beginning in my hands.
None of the nerve blocks were by this stage effective. I returned to the UK after 1 month and with little else on offer and the bladder issues still the most severe problem, I decided to have a urostomy/urinary diversion (into a bag) in 2002. I subsequently had my bladder removed in 2003 in order to see if this would help relieve the pain in any way. Unfortunately it didn’t, and I was left with the same sense of bladder pain and urgency. This is hard to deal with
when you know you no longer have a bladder! I was, however, at least freed from having to be so near to a bathroom. The loss of my boyfriend who has supported me from before I got sick a year before, followed by the failure of the surgery and lack of any real hope on the horizon, led to my lowest point in the 13 years. I took a massive methadone overdose and was only just saved because I was found unconscious and resuscitated.
Following this various factors meant that I fixed on the seemingly impossible option of trying to attempt to do a university course. If I am honest all the way through the 3 years I was on the verge of thinking I just couldn’t physically do it, but I enjoyed doing something normal, being around people again, and the distraction and sense of achievement were all helpful. I still can’t quite believe how I did it, but there felt little other choice except to once again consider suicide. I got a first class BSc in Herbal Medicine and subsequently achieved funding for some post-grad MPhil/PhD research, which I was doing on the experience and narratives of young people with chronic pain. I loved the opportunity to do something I cared about so much, but after a year continuing to work in bed, in agony, on no sleep and heavy medication, I reached a point of total breakdown in dealing with my own pain. 2 spinal cord stimulator trials in 2005/6 had been painful and unsuccessful. The widespread symptoms had progressed to affect my hands and arms, head and face more and more, in addition to my feet and legs. I was struggling to eat and losing a lot more weight. I find the pressure of my body in bed hard to bear and am disconcerted by sensations of numbness and tingling etc body wide. I felt that the CRPS spread was increasingly out of control and I couldn’t keep trying to fight it alone.
I had exhausted options at home and I searched for some possible solution. I found out about the use of ketamine infusions and coma and it seemed one of the only things I had not tried. I saw Dr. Schwartzman in October 2008 and he recommended the ketamine coma in Germany. Unfortunately this route fell through and he referred me to Dr. Kirkpatrick and the study in Monterrey he hoped I could be part of. I know that my history is strange compared to many CRPS patients, but had found various journal articles via my university etc, which made connections between Interstitial Cystitis (IC) and RSD/CRPS. The hallmark burning pain and hypersensitivity seemed similar and was obviously related in my case. The clear evidence of central sensitization processes and the extent of the spread and nature of symptoms, which had subsequently developed in my limbs and head, gave me confidence to pursue this avenue. Thankfully Dr. Schwartzman and Dr. Kirkpatrick concurred with a diagnosis of CRPS and were open-minded enough to include someone with a less common and possibly more complicated history in the study.
I still hope mainly for relief of the bladder burning and 13 years of constant unrelieved urge to urinate. This visceral version of CRPS, deep inside has been the most emotionally and psychologically distressing for me and of course the initial and most long-standing problem. However relief of the subsequent more common CRPS symptoms and spread would be wonderful too! I am so, so grateful for the opportunity and for the many people who have helped to support and to fund this chance for me. I can barely imagine any longer what it would be like to be reasonably comfortable even for a period of time. For me at this point any improvement would be worth it, after no relief in all the endless minutes, hours and days of the 13 years. A decent night’s sleep would be priceless! If my case proves at all useful for others in future with IC connected to CRPS that would be a wonderful bonus. I feel very blessed to have this chance and appreciate everyone involved in allowing me to have it! I can barely explain just what this opportunity means, the words just aren’t enough – but THANK YOU!
May 12, 2009
Ms. Brade suffered abdominal pain following the ketamine coma procedure. Was it worth it? Watch Ms. Brade discuss her experience before and after the ketamine coma in the two videos linked below.
Research subjects must satisfy strict “research” criteria for the diagnosis CRPS.
The present case illustrates that the diagnosis of CRPS can be complicated by research subjects having more than just one ongoing pain mechanism.
In another case, a research subject with CRPS was enrolled in the study with an additional neuropathic pain diagnosis of Lyme Disease.
The goal of the study is to gain insight into both SAFETY and efficacy of the ketamine coma procedure while being sensitive to the risk / potential benefit ratio for each research subject.
Anthony Kirkpatrick MD, PhD
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