Want to hear from someone else who experiences chronic pain? This is an interview from “Jeisea,” a wife and mother who lives in Australia. Her website, CRPS/RSD A Better Life, is a great mix of her thoughts and experiences about living fully with chronic pain. (As every patient is different, the treatments she discussed are not meant as medical advice. Please see my disclaimer, and discuss anything written here with your pain medicine doctor first.)
How to Cope wtih Pain: Can you tell us a bit about yourself?
Jeisea: I’m a wife of 35 years and a mother of 2 fantastic adults. In a previous life I was a teacher, creator, thinker, lover of life. In 1998 I broke my right wrist which is permanently stiff. In 2000, I was diagnosed with complex regional pain syndrome (CRPS). Drug treatments failed, and in 2004 I was told to look at alternatives as conventional medicine was not suitable for me. (CRPS is a nerve pain disorder characterized by pain, temperature instability and movement problems in the affected area. -HTCWP)
HTCWP: What’s been your personal experience with pain?
J: After my arm was put in a cast, I was shocked that I was in fairly extreme pain. I was told it was because of the severity of the break. Because of pain, I was anaesthetized to have pins removed. I began physical therapy straight away, despite the pain which I then believed was normal. Within 4 months, my right and left shoulder were very painful. I was told I had rotator cuff tendonitis.
I believe that as months turned into years, and I changed my perception of pain. I ignored it and “got on with my life.” I loved my job as a senior language teacher. But I wrote little and used lots of pre-prepared resources. I was lucky I was at new schools so everything was new to them. I clung on to work as I felt more valued. I struggled with home chores.
In 2000 I became concerned because my hand was getting weaker, despite so much physical therapy. I was then diagnosed by a hand physician with CRPS. I didn’t believe him. I read about burning, excruciating pain. That wasn’t me. From the start, I had nerve firing like being pricked with pins. My pain was constant in my hand and arm, with other areas gradually being added.
At this stage, I had deep bone pain, aching, hypersensitivity, and discomfort from clothing touching my skin. Sudden heat or cold caused pain, and if I stood or sat in any position for more than a short while, my skin and nerves seemed to become overstimulated. I didn’t have burning pain. I had free flowing anxiety, the anxiousness when you can’t pin down why you’re anxious.
Over time, I was aware I was gradually in more and more pain. Mid 2000 I developed burning in my lower back and the backs of both legs. Later I developed whole body waves of nerve firing. Very creepy and unsettling. By far the worst pain has been after migraines and dental work.
HTCWP: Overall, what have been your treatments for pain, for example, medication, procedures, etc?
J: For the excruciating nerve firing, I’ve found no treatment. However my pain psychiatrist found UK research about vitamin B2 preventing migraines. After the diagnosis, I also tried antidepressants and have found that low dose amytryptiline was very effective for pain and helped with sleep.
Professor Scott Reuben in the US has developed protocols for dental work. My dentist puts cream on the skin to deaden the area, injects a non-adrenaline local and follows at the end with another injection. We keep the sessions short and this so far works. Prevention is certainly the way to go.
While at a pain clinic, I learned Mindfulness meditation. I found that the silence took away distractions which left me facing the pain. At the time I thought this was counterproductive. The extraordinary thing about this mindfulness meditation was that every time I did it, my hands at the start were both freezing and a grey /purple colour. As the session progressed, on every occasion my hands became warm and finally very warm and pink. It was so remarkable that before the session people would feel my hands and were as amazed as I was with the change. Having read your interview with Dr Moseley, I think I’ll look again at Mindfulmess meditation.
Other medications I’ve tried include the blood pressure medication Catapres, Tramadol and Tegretol, but the side effects weren’t acceptable.
Next I had a Phentolamine Infusion. This had a remarkable result with much less pain. I had three more infusions with less benefit. It was at this point that I was told by my doctors that medication was not suitable for me. I was advised to look at alternatives.
HTCWP: What has been the most difficult part of your experience?
J: The most devastating for me was, when I knew I was getting progressively worse, being told by the loveliest, most clever doctor that modern medicine could do nothing. I felt I had lost control. I had made the mistake of abdicating management of my condition to another person. I then visited my very kind and clever psychiatrist who became very practical and started writing a list of possible alternatives. These included omega 3 oil for inflammation, magnesium for cramps and so forth. He gave me back control. Later he told me about Capsaicin cream. I’m allergic to something in the store-bought cream, so I found a recipe on the net and make my own.
The other most difficult thing has been to accept what has happened. I’ve had to redefine who I am. I can’t do physically what I took for granted before. I could do fine portraiture. I now struggle to hold a pen. I’m no longer the person I was then. My relationship with people has changed. I find it hard to concentrate when people are talking. I am dumbed down by lack of concentration and forgetfulness. I thought I had dementia. I was tested for it and am grateful that I don’t. In reality I sleep poorly due to pain. At present I’m learning to accept and delight in the things I can do.
HTCWP: Have there been any “silver linings,” or positive things that have come from the experience?
J: Yes. Just as I was devastated by being told the medical profession couldn’t help me, in a sense it was my salvation. I’ve had to become strong and work hard at finding a solution and that has been a great distraction and comfort in itself.
I’ve learned to “smell the roses” and appreciate the small and beautiful in life. I appreciate each moment with my family. Life-changing experiences are apt to make you reassess. I cherish friendships which have remained despite my lack of effort in maintaining them. I plan to be a better friend.
HTCWP: My impression is that you have worked hard to understand pain, and to figure out what will work for you. What’s been helpful in learning to cope with having chronic pain? How about your attitude?
J: Distraction is wonderful. Focusing away from pain. I have to remember to stop often and change activities and pace myself. It really isn’t worth overdoing things because the time for recovery is greater than the time spent on the activity.
Last year I finally felt I was getting somewhere in my efforts to get some relief. The thing that has really helped me most is mirror therapy. I’d read research on the internet and in the book “Explain Pain” which Dr Moseley spoke about. I positioned a mirror at right angles to my body so that my painful side was out of site behind the mirror. I then watched the mirror image of my pain-free side (arm) move up and down in a way which would have been painful for my affected side. I only did the movements about 8 times. I repeated this exercise several times, with breaks in between, throughout the next few days. At first I noticed a slight relaxation. I thought I imagined it. After a few days I realized I was more comfortable. I kept doing the exercise several times a day until the pain finally was gone. This took about 3 weeks. The interesting thing I found was that I had pain in my whole side from head to foot. As time went on, the pain gradually decreased in area until it was isolated to my shoulder. Finally that settled as well. Unfortunately when the side settled, my back burned. However over time, I’m getting better at managing the flare ups. (More about mirror image work coming up soon in future posts. -HTCWP)
The next most helpful thing by far has been controlled breathing. I breathe in normally and then breathe out twice as long as in. I do this for 15 minutes each day.
HTCWP: You have a website, http://www.crps-rsd-a-better-life.blogspot.com, about your chronic illness experiences (with some great pictures of “triangle butterflies” and other unusual beings, too!). How did you get interested in that?
J: I wanted to make a journal of what’s working for me so I don’t lose the plot and my daughter suggested a blog. This has kept me focused. I made a list of what helps relieve my pain and symptoms, and I update the list as I discover more. When I’m having a lot of discomfort, I can’t always think so I refer to the list for something that might help. Because I’m responsible for my own recovery I look for research and developments, and put links to what I find interesting and relevant. At present I’m interested in “eating smart.” I’m looking at choosing foods higher in antioxidants and in particular vitamin C.
HTCWP: What is Australia like? How close are you to the sea? Any healing properties you feel at the ocean?
J: Thank you for asking. I live in a special place in Australia, near Byron Bay, the most Easterly point. The Aboriginal people call it Walgun, which means The Shoulder. It gives views, sheltered and sandy beaches, seafood, wildlife, rainforest fruits, and always clean spring water.
Just inland lies one of the largest calderas in the world. It’s one of the world’s great natural wonders. There’s a virtual semi circle of vertical cliffs around the western side of Mt Warning, which now stands at just over 1100 meters tall. Being so high and so far east on the Australian coast, it’s the first peak on the mainland in Australia to be touched by the rising sun at the Autumn and Spring Equinox.
HTCWP: Any other thoughts you’d like to share?
J: Just this – I’ve found it’s too easy to become overwhelmed or consumed by pain. This causes suffering. The way out of this for me is to actively seek happiness. I’m confident there’s a brighter future for people in pain and I implore researchers to keep thinking outside the square.
Thanks so much, Jeisea, for sharing with us so much about your condition, the challenges and triumphs, and letting us have a peek at a way of handling a difficult pain condition with courage and wisdom. For others who are on this path, it is difficult, and Jeisea can serve as a role model for progressing along a difficult, but life-saving path. -HTCWP
24 responses so far ↓
judy // Mar 11, 2007 at 11:37 am
Thanks for sharing your life with RSD. I was injured in 1999 and have had RSD in my Rt. Leg since then. Originally pain was in my rt. knee, when treatment was delayed the pain spread to my entire rt. leg.
Distraction is something that helps me, but distraction takes energy and sometimes I don’t have that energy. I find the medication gives only mild to no relieft. I will be back to check your web blog. Keep up the good work. Hoping that a cure is just down the road. Meanwhile we search and we wait. The danger is that life is passing and I am missing out on living. That is my assignment for today.
Do You Know These 8 Great (But Hidden!) Pain Websites? Here’s #1 | How To Cope With Pain Blog // Mar 23, 2007 at 3:43 am
[...] Today’s great blog is crps-rsd-a-better-life.blogspot. The writer, Jeisea, was previously interviewed here on How to Cope with Pain. I love this blog for the information it has, her great attitude – “actively seeking happiness,” and her beautiful Australian pictures. [...]
Kris // Jun 13, 2007 at 1:31 pm
Hi Jeisea,
This is a very beautiful site with lots of great information. Thank you so much for sharing this!!
I too have RSD and other misunderstood Chronic Pain Diseases. It is comforting to find others that understand and that are able to share what has helped them.
Usiku // Nov 9, 2007 at 9:07 pm
A very well-written and candid interview. Thanks for showing us how you cope with pain and live with hope.
Diane // Jan 9, 2008 at 8:40 pm
Hi Jeisea,
I appreciate all the information. And I admire your Self-Empowerment in your Healing Journey!! HOORAY!!
I have been living with RSD for 5 years. I was recently reading The Brain That Changes Itself and learned about mirror box therapy. This sent me on a search and is how I found your site. I would love to have more (specific) information on the box that you used. Did you purchase or build one? And how did you use it for your affected areas?? I feel confident that this is part of my own Healing Recipe and would love to talk with you about this.
Sincerely, Diane 0:)
How to Cope with Pain // Jan 10, 2008 at 5:37 am
Jeisea has her own blog, CRPS-RSD A Better Life, which has a lot of information about how she uses the mirror.
2 other posts here are How Pain Can Be Helped With Mirrors and CRPS – How Mirrors Can Help.
2 websites that have the mirror, Noi Group and Mirror Box Therapy.
Good luck, and let us know how you do!
jeisea // Jan 11, 2008 at 4:49 am
Thank you so much Diane. Just as you have read something about mirror therapy and want to know more , so it was with me only late 2006.
Mirror therapy with a box is great for single sided hand/foot problems but mirror therapy can be used for far more than this. Personally I have never used a mirror box as such as by the time I learned about the possible benefits, I had a whole body problem. I waited till I had a single quadrant flare up such that the pain there was significantly greater than in the other opposite quadrant.
I’ve just posted pictures of some of the mirrors I use. I suggest you click on “mirror therapy” in the list of “tags’ to the left of my blog for lots of information about this.
http://crps-rsd-a-better-life.blogspot.com/
(January 2008)
Mirror therapy is brilliant for reducing and removing pain and symptoms and is very effective for retraining the brain. I suggest you read the current post on this site
http://www.howtocopewithpain.org/blog/194/wii-chronic-pain/
Could The Wii Make Chronic Pain Sexy? | How To Cope With Pain Blog
Thjs post shows another way of retraining the brain. Moving and doing physical activities in a normal way also reinforces the “it’s ok” message to the brain.
Other ways to retrain the brain include self hypnosis, guided imagery, controlled breathing, acupuncture (recommend laser), doing activity with different inputs eg when it’s hot/cold/noisy/quiet/wet/dry munching etc. David Butler, co author of “Explain Pain” recommends nude mirror therapy. Makes sense as you see the actual body part and not the clothes.
Diane, taking an interest and looking for ways to help yourself is empowering. Please let me know if I can help you further. If you comment on my blog with an email address, I will not publish the comment so that you email isn’t made public. I will then email you.
How to Cope with Pain // Jan 11, 2008 at 10:59 am
Thanks, Jeisea, for following up. Jeisea, and her blog, are great resources! And she’s always so helpful with people’s questions.
Btw, this is one of the great things about blogs, helping each other.
jmac49 // Feb 25, 2008 at 6:50 pm
I’ve had rsd full body since early March 2007, and you know how painful this can be. I Lyrica for nerve pain and long acting Morphine for the pain. I also take Cymbalta for the depression and pain combined. I also take short acting morphine and valium for the bad muscle spasms. Which brings me to this point, How in the heck do you keep on keeping on? You really inspire me, you must have a high pain threshold, or God must really be on your side, and helping you through this! that is if your a Christian. God Bless you for enduring this horrible disease without any meds, I don’t know how you do it. By the way my daughters’ name is Jessica.
jmac49
jmac49
jeisea // Feb 27, 2008 at 6:59 pm
Hi jmac
Thanks for your kind words. Love the name Jessica which means “God sees” I believe.
I don’t know that I’m one to be admired. I’ve searched for information and found ways to help myself because of a strong desire to survive and because I felt desperate. There’s an expression I’m sure you know “The Lord helps those who help themselves” so you may be right about God being on my side. I was brought up a Christian but am not sure now what I believe.
I keep going because along the way I have found things which help and I’ve been encouraged by my doctors to look for alternatives. I now feel in control. I know if I have a painful flare up I can do a range of things that will together ease the pain and in time resolve the symptoms. Right now I’m receiving Yamamoto Acupuncture. This was devised by a Japanese Anaesthetist and is used by him to treat single sided stroke. It’s used to treat neurological problems and in particular, in Germany, to treat chronic pain. Only doctors are trained to use this type of acupuncture which is done only on the scalp. I’ll be posting about my experiences with this treatment soon on my blog.
I’m a practical person so making a list of things that work to which I refer at difficult times, really does help me. Being informed and making my own decisions gives me control which I find empowering.
I hope your days are better soon.
jeisea
How to Cope with Pain // Feb 28, 2008 at 6:37 am
Thanks for your thoughts, Jeisea.
Theresa // Apr 3, 2008 at 6:52 pm
Jeisea and all who have read these stories, I am in the beginning stages of this horific disease and know nothing at this point. My Drs. have me on the ususal routine, PT, Cymbalta, Valuim, Ambien. I have severe memory loss and have been out of work for four weeks. Is the memory loss from the meds or part of the RSD? Also, is this a disease that just flares up when it wants? Are there warning signs I can look for to catch it early enough? Please help me to understand more about what I am facing. I have very positive people around me that are keeping me mentally alive, but this is one of the most frustrating experiences I have ever had..
How to Cope with Pain // Apr 4, 2008 at 9:03 am
Hi Theresa,
Very sorry to hear of another person with RSD, but glad to know you’ve found this site for help and guidance. There are a lot of resources out there for RSD. I’d suggest 1) starting at the RSD Syndrome Association for both info and support, 2) looking thru Jeisea’s blog, and 3) taking some time to look over this blog. It is possible to feel better and certainly suffer less.
To address some of your questions…
In general, memory problems are caused by several factors, including meds, loss of good sleep, high pain levels, and possibly RSD itself.
Regarding flares… there are definitely triggers for higher pain levels, including overdoing activity, weather, and stress. But RSD sometimes also has a “mind of its own,” and can flare for no apparent reason. As you go along, you’ll learn about your own individual condition.
Learn a good amount about RSD and pain (but don’t go overboard – especially on some of the exaggerated info out there on the internet), work with your doctors, particularly a specialist in pain or RSD, and keep up with your life, as much as possible.
Good luck, and stop by again!
Jeri // Aug 30, 2008 at 2:57 pm
Dear Jeisea~
Thank you so much for putting together this website. I have found so much info. I have been batteling RSD for 5 1/2 years. I have had the spinalcord stimulator implanted. That has worked great for my right leg. The rsd started out in my right knee after a fall which has resulted in 3 knee surgeries. It then took over my right leg from hip-to- toes. It has now spread to my lower back. (the old bettery site) They had to move my bettery from my stimulator to the front. I am in search of info to try and help me get through this. I have been off work for 6 months. Not sure if I will ever return. I have heard a lot about the Ketamine infusion. What do you know about that? Also you mentioned the vitamins B2, omega 3, and magnesium?How did those work for you? Thank you again for all your time that you spend on this wonderful website.
How to Cope with Pain // Aug 30, 2008 at 6:28 pm
Hi Jeri,
I’ll contact Jeisea for responses to your questions. You’re also welcome to check out her website and inquire there.
~ HtCwP
jeisea // Oct 26, 2008 at 12:36 am
Hi Jeri
I’m so glad you’ve taken the trouble to look through this wonderful site “How to Cope with Pain”. It’s run by a chronic pain medical specialist. The doctor in charge has interviewed me for this website. You may have clicked on a link to this from my blog “CRPS/RSD A Better Life” and found my interview.
Thanks again How to Cope with Pain for taking the wonderful work you do and the support you give to so many people.
jeisea
Ang // Jan 14, 2009 at 10:26 am
I had corrective foot surgery, April 08, got an infection which my consultant dug out with a scalpel without any freezing or pain meds. From that day on, I have had boiling, hot, stabbing pain almost as if someone is stabbing my foot (underneath) with a sharp knife, or walking on glass.
My consultant didn’t notice I had crps, even though I informed them of my excruciating pain, black hair growth on my foot, and colour changes as well as temprature change. He signed me over to physio with 1 stiff metacarsal. Physio took 5 minutes of questions, then asked if he could examine my foot. I cried and as the tears rolled, he asked what’s the matter??
It’s the first time anyone has asked my permission to touch my painful foot. Usually Dr’s and nurses just grabbed and examined. Chris told me at that point I had crps at a stage 3, and he couldn’t help until I could desensitise my foot, as even the slightest touch made my whole body sweat up and my foot would go black instantly.
That was 5 months ago. Since then, it has been an uphill struggle as not many Dr’s or physio’s know much about crps. Much of my info comes from the net or forums. I’m really struggling to get on top of this condition as I want to return to work this week, but none of my medical team can give me a straight answer as to whether I should or should’nt return to work. I’m a foaling assistant on a thoroughbred stud in England and I love what I do. What do you think??
How to Cope with Pain // Jan 14, 2009 at 12:50 pm
Ang, what I’d recommend is finding healthcare providers who have expertise in CRPS. For example, PT’s who are used to working with patients with CRPS can work with you to desensitize painful areas.
Regarding work, if at all possible, it’s good to return to work if you’re able to. It’s usually not a matter of ‘yes’ or ‘no,’ but how to return. In other words, how can you function despite having pain, and what are ways to work so you don’t exacerbate your condition.
Please check RSDS.org, the RSDSA website. As well, CI Coach is a great website for work-related questions when you have a chronic illness. Please look around this site, too, for help! Good luck!
jeisea // Feb 2, 2009 at 1:24 am
Ang I just noticed this so hope you signed up for HTCwP emails of posts to see this reply. As you live in the UK there is an excellent website http://www.mirrorboxtherapy.com/
This site is run by DR Ilan Lieberman. At the top right of the site if you click on “contact” you can send a message to Dr Lieberman. He’s involved in research into CRPS/RSD. Napp Pharmacuiticals donated mirror boxes to pain clinics throughout the UK. There’s a lot of research going on in your country. If you google “Candy McCabe and RSD” you’ll come up with some of what is going on. HTCwP has posted about DR Lorimer MOseley who is currently doing wonderful research in Oxford I believe. If you look on my blog at links on the left as you scroll down, you’ll see links to UK information and research.
Tony Tobin of UK RSD World News Yahoo group is a great help so I encourage you to join the group and contact Tony. His group isn’t a forum but Tony posts latest articles and helps members where he can. HTCwP interviewed Tony on this website. If you go to “archives” and click on the tag “interviews” you can read what he said.http://health.groups.yahoo.com/group/RSD-WorldNews/
I also encourage you to take the time to have a good look at posts on this website in particular recent posts.
jeisea
Barbara // May 27, 2009 at 7:41 am
I am amazed at how much information about RSD, pain, chronic illness and treatments is available on the web. I cannot read,actually I do not have the time to read even a fraction of it
I have had RSD since1987 and the Internet since 1992, yes I was an early convert. I ran a website called RSD On Line. It was one of the first,if not the first on line. Now I can’t even keep up with reading little of what is there
I live a very full life. I do push myself too hard so I pay for it. I no longer allow RSD to control me. I am currently setting up my third photogrphy show
I would love to start a site where I could share the adatptations that I have developed to help me live a full life with RSD and in a power wheelchair with almost no use of my right hand, legs and limited he’d movement….but right now I am too busy
Barbara
Jay M. // Aug 30, 2009 at 5:58 pm
Nice write up…usually I never reply to these thing but this time I will. Thanks for the great info.
Leticia // Sep 27, 2009 at 3:49 am
I have had CRPS since 2008 . Thank you for sharing information on CRPS. I am in the early stages of CRPS and taking Lyrica, Cymbalta. Since I have had early treatment will the CRPS continue to spread?
Leticia
How to Cope with Pain // Sep 27, 2009 at 8:45 am
Leticia, glad you’re getting treatment early. While there are no guarantees with CRPS, that may help prevent spread. Also, having comprehensive treatment, which can include PT, guided imagery, antioxident diet, and perhaps mirror therapy, (in addition to medication), you have your best chance to recover.
Let us know how it goes!
Rachel // Oct 23, 2009 at 3:23 pm
I have begun integrating Mirror therapy into the other methods I use w/ RSD/ CRPS. The methods I’ve developed for dealing with this terrible pain issue have arisen from needing to save myself from RSD in my leg. Also, my studies in traumatic stress and PTSD, have also helped me develop special tools for pain relief. I am currently building a website to provide teaching and self- help or partner assisted help for RSD. If anyone wishes to email me about what they need help with, I will respond and provide support tools. Rachel
Leave a Comment