Treatment that helped me mentally

Brain and nerves
1

It took a year of me pushing the doctors to gain a diagnosis of CRPS. I've now been living with the condition for 2 years in total.

My experience of the condition is pretty unique, due its location in my abdominal wall. It affects many of my daily activities - I'm sure you have already discovered threw your own experiences how hard it can be.

Luckily for me, I was quickly referral to a Cognitive Behavioural Therapist (dealing in the thought process), something I would recommend anyone suffering with the condition to look into.

The CBT team teach you how to live with chronic pain, physically and mentally. They help you re-learn the simple things like how to think positively about the situation, how to question your thoughts and feelings, what to do during a flare-up. They teach useful things like how your nervous system works and try to discover what your pain triggers are. The CBT team don't just deal with the your obvious issues of pain, they look at everything going on in your life, relationships, activities, work, fitness, people’s perceptions of you and much much more.

Although they aren't there to give out medication, the coping mechanisms and strategies they help you implement, go a long way to reducing the likelihood of a flair-up.

If you only take one thing from this post to help you cope, then let it be this: -

'Although i am in pain at the moment, it will not last forever and I will get through it.'

Try to remind yourself of how long your last flare-up lasted and as hard as it is, try and get out of the house even if it is just for 10 minutes two maybe three times a day.

Wishing you all the best in your own road to recovery.

2

Hi there, I have had this condition for 9 years now, in my right foot, and since a knee rebuild, now also at the front of my left leg, I cannot find anything to ease the pain, have tried all pain relief through the pain management clinic, they basically cannot help me anymore after attending for over two years with constant complaint of pain. But I will go to my doctor and enquire about a therapist as you suggest. You are the first person that I have found throughout 9 years that has the same condition. Take Care

3

Hi Brennie, I have just came across this website by chance & noticed your story. I too have Complex Regional Pain Syndrome in my right foot. I have had the condition for eight months now & suffer severe chronic pain. As well as my foot continuously feeling like its on fire, I also suffer from Allodynia so any sort of contact with my foot increases my pain further. I have a fantastic Pain Management doctor who is trying different drugs to hopefully help me. I had a pamidronate infusion which was done by intrevenous. Unfortunately this didn't help but instead put me in bed for two days with terrible flu like symptoms. I'm due soon to have another drug intrevenously, I'm unsure of the correct name but I know it involves using a tourniquet. I feel for you having this condition for 9 years it must be very hard work. Personally I'm really hoping my forthcoming treatment will help. May I ask how your ability to walk is? I currently still use crutches as I can't put any weight on or through my foot.

4

Hi DC

I was 39 when I broke my ankle and had a metal plate fitted as the break was very bad, pain constant, so had plate removed 7 months afterwards and took about 18 months to diagnose, by which time the pain was past being controlled. I have had all the bone scans, lumbar nerve block (which did not work), recently hypnotherapy which lasted about an hour. I've been on both medications Lyrica and Gabapentin, and am now increasing the gabapentin to max dose with Amitriptyline (trycillic drug), but still nothing seems to help very much. I am able to walk, nobody would think or know that I had this problem, however, my ankle does give way and so will see how this progresses. I try not to walk very much if I can help it and I'm uneasy when out on my own. Getting back to pain, last Monday I purchased a tens machine, I have been putting this on every evening until I go to bed and now after having it on all weekend, I am now going to use it during the day at work, I'm now reliant on it because it has most definitely taken away the constant throbbing pain that gets so distressing. I just wish I'd known about this a long time ago, I found out all my information all by searching the net, i'm persevering with the tens machine, and trying the different programmes so see which one works best, they say it takes a month to notice any difference,. I'm sorry that you are having problems walking, would be interested to know how you came to the stage that you are now at. I'm in the process also of finding some meditation/relaxation cd's and I've also come to the stage that now I treat the foot like it's in serious need of constant TLC, so I don't over do things and put it under any pressure or strain, if and when possible. I look forward to hearing from you, take care, Brennie.

5

Hi Brennie,

Apologies for the late response, I have been meaning to and just never got around to it.

It's interesting to hear your story and the different techniques you've been trying.

I received a bad ankle injury whilst playing football last July 2011. I damaged my talus bone and they originally thought I had fractured it in A&E and therefore put me in a cast for a week until I seen a consultant. Eventually after seeing the consultant he removed the cast and gave me a Aircast boot to wear. After the x-rays they showed the damage to the talar dome which looked like a fracture but they were concerned with the size of the piece of bone that was practically floating around in my ankle. I wore the Aircast boot for a few weeks until I had a MRI scan. Between this time my ankle was swollen to the extent that it didn't even look like mine and as well as lots of bruising my ankle was changing colour quite dramatically, very red and often blotchy and blue with streaks. This continued for the next eight weeks with horrendous pain, burning pain as if you had ran a boiling hot bath and stepped in it thinking you had cooled it! I received my MRI scan which showed that I hadn't fractured my foot as first thought and instead I had dented the talus bone which left a piece of bone sticking out in my ankle. I also had completely ruptured most of my ligaments. At the same time as receiving my MRI results my consultant and two others had practically diagnosed me with Complex Regional Pain Syndrome. Once my consultant/surgeon knew this he told me I couldn't have the operation which would of smoothed the dent over. He explained how he thought it would make matters worse. The consultant then referred me to a doctor in the pain management side of things. This doctor is superb and has a great understanding of CRPS. He examined my foot thoroughly and diagnosed me further with CRPS. He organised for me to do lots of Hydrotherapy and sent me to see a Physiotherapist to try and gain some movement of which I had none, I also couldn't put any weight on my foot and therefore although the Hydrotherapy helped slightly I couldn't do much at all without severe pain. Medication wise I started on Amitriptyline and Gabapentin and Tramadol. I increased my medication over the next weeks and eventually was on 2700mg of Gabapentin a day, 400mg of Tramadol, 50mg of Amitriptyline daily. My doctor eventually treated me with a intrevenous drug called a Pamidronate infusion. It wasn't licenced for my condition and was what they use for patients who have Osteoporosis, I was willing to try anything to reduce the pain. This unfortunately didn't work, I did however suffer from one of the side effects which was flu like symptoms, this put me in bed for two days affecting all my joints to the extent of even hurting whilst moving my fingers. I have recently been taken off Gabapentin and now put onto Pregabalin which I believe your on. I'm due for more treatment next week again involving receiving a drug intrevenously. Can't recall the name of this drug but I know my doctor will be using a tourniquet. When I see him next week he will also be putting me on Tapentadol which is a strong narcotic drug I believe. I'm in so much continuous pain and also experience shooting pains in my ankle and up my leg. I also have Allodynia across my ankle which results in even further pain if something touches my ankle and even have difficulty with tight socks etc. I have now been on crutches for eight months whilst not being able to walk. Sorry for the long message and probably boring you but It's nice to be able to talk to someone sharing the same problem and I wanted to give you the full story of how my condition came about.

All the best Dave

6

Hi Dave

You're not boring me and believe me it's the same for me, not being able to talk to someone who understands what you're going through nearly drove me nuts! I'm much more hopeful now because I cannot believe the relief from the tens machine, I was only in about 20% pain the other night for five hours, first time in 9 years, normally 90/100% pain, so I've got rechargeable batteries and I won't be without it, and as it's early days yet, could become even better, let's see. I am not on pregabalin, I am on Gabapentin, 900mg x 3 daily, and rising. I was on pregabalin (have switched from one to the other two/three times) and I found no difference between the two tablets, however, a doctor informed me that the pregabalin is quite an expensive drug, so from that info, it must be worthwile staying with it for a while, I'm tempted to go back but will wait until I have reached my maximum on Gabapentin, also on 50mg Amytriptyline, I was on Tramadol, but they made me seriously sick for 12 hours and therefore I think I became allergic to them. I also wore the boot for three months, and my ankle looked extremely deformed, hence the reason for inserting the metal plate, am also aware of the burining sensation, feeling to me was like a kettle being poured over the foot, however, I cannot stand my foot cold, so try and keep it warm and of course it can get too warm, so still a lot of trial and error. How on earth are you managing without being able to walk, must be quite tough, I noticed over the three months that I was imobile, I put weight on, and that was quite annoying, but obviously lost the weight once I began to walk properly again, at the time of breaking my ankle I had four children, the youngest being 11 years old and the eldest being 16, so I was unable to do things anymore, kicking a football around etc, and going to Thorpe Park etc, I can't stand for too long and stuff, but they were fine with it, just had to get on with things I suppose. I get the feeling that you are quite young, how are you managing without being able to continue playing football? Presume you are getting plenty of help at home, I also tried a linocaine plaster on the foot at night time, which helped. However, one down fall was that I was told that if I had an operation in any other part of my body that the nerve damage would follow, I did not believe this whatsoever, thought that is impossible. But, in July 2008 I had to have a left knee acruciate ligament re-build, and yes, the damage travelled, it is now down the front of my left leg, but so far, not too many problems, only get weird feelings when I touch it, (shaving is a nightmare), but wearing socks and bed clothes etc, not I would say painful just a strange sensation. If I can be of anymore help, please let me know, and keep up the good work.

Regards

Brenda

7

Hi Brenda,

I'm 37 but young sounds good thanks. ha ha

Yeah being on crutches for so long is a real strain but I tend to still try to get around as much as possible. The Gabapentin & Pregabalin seems to put the weight on me also, another reason to get up and move often although I'm not the type of person to sit around anyway. I attend hospital on Wednesday for the treatment that I mentioned in my previous email/essay! Maybe if I still have my marbles after getting pumped with all these strange drugs, I will let you know how I get on. Hope your as well as possible under the circumstances and hopefully speak soon.

Take care

Dave

8

Hi all

I am new on here and its so good to hear that I am not the only one who suffers from CRPS (so I am normal then). I have had this dibilitating condition since 2006 after an accident with a lawnmower ( don't mow the lawn in sandals like i did as you end up with half a foot like i did) not only did I have to cope with what happened to me mentally but also phantom limb pain.

I kept going back to the doctors with the burning sensations and 'stinging nettle' feelings and I was very persistant with my doctor as I knew something wasn't right and the pain was not from the amputation.

Finally after seeing 3 different consultants in North Wales and South Wales I was finally diagnosed with CRPS in my right leg where the amputation is.

Over the years I have had injections which involved a tornique and a hell of alot of pain, didn't work, intravinous injections of something where I had to sit there for 4 hours for the bag to empty, this one didn't work as I had a severe reaction to the Nitrogen that was in the drug.

As for tablets I have tried everything available Lyrica, gabapentin, amatriptaline and lots more and nothing took the edge of this awful pain that we all have and experience.

Currently I am on Voltoral suppositories 100mg which work instantly, Morphine 30mg which I am coming off at a slow rate, Diazapam 5mg for the spasms in by back due to having 4 prolapsed discs and the CRPS spreading to my normal working left leg and also it is spreading into my back but that is another story, and I also take Oramorph (liquid morphine) when I am desperate.

I was chosen to have a Spinal Cord Stimulator fitted and the Welsh Government agreed to pay the £10K for the operation but then as I was being assessed and tested it turned out that it would make my back worse so I was taken off the list. I attend the Chronic Pain Clinic in England twice a year to see my consultant who now wants to put a morphine pump inside my body but I can't get me head around having metal and a forgein body inside me. I have also attended a Pain Management Clinic which was live-in for 3 weeks and I didn't get any benefit from it at all, I know there is no cure for this condition and sitting around talking about pain is not my sort of thing as I felt so depressed when I came home as talking about pain for 9 hours most days was making me go to sleep, so that didn't work.

I am a positive thinker and yes I am in chronic pain daily, don't sleep at night because of the pain but I do try to keep my house clean and tidy by doing a little bit then rest and this is how my days go and I try to save my energy for the weekends so that I can go out with my very understanding husband and children.

I look normal and walk with a limp, sometimes I am with my crutches or in my wheelchair and I find people staring at me as I am well under 40 but I think well its your problem for staring not mine and its the same when I park in the disabled bay, put my badge on display and if I am on a good day I will walk unaided and people are staring at me and I just ignore them.

My message to all sufferers like myself is stay positive, yes it is hard but I finally feel as if I am getting on with my life.

Take care to all

Sarah

9

I have just found your discussion on CRPS and thought I would add my bit of knowledge.

My daughter suffers from CRPS as a result of an injury to her knee. She no longer has to take morphine for the high levels of pain she has experienced which is wonderful as her CRPS journey started when she was 14.

For her, the procedure that broke her pain cycle was receiving cold laser therapy from Cline Medical Centre. This didn't stop the pain cycle - just broke it so that it is now at a manageable level most days.

During her journey I have been her support person, event coordinator (ensuring each specialist she visited had all information and test results from previous tests and medical appointments she had endured to that point) as well as a researcher because we found that very few people in the medical system in Canada are aware of CRPS (also known as RSD - reflex sympathetic dystrophy).

As a parent, I felt helpless because I couldn't fix her condition so I chose to be pro active and won't quit until we are able to find something that will completely eliminate the pain.

Seven years later, my daughter still suffers from pain - especially when the weather is about to change. Her pain can mirror from her right leg to her left leg and because of the pain, can be very irritable. Fortunately, she doesn't have to take pain medication because the pain usually only elevates for a few days and then is manageable without medication.

She has said that the best thing for her is a job where she is required to move, walk and keep busy. She has a wonderful spirit and determination to get her through the not so good days.

For those who are reading this post and dealing with CRPS, I wish I could wave my magic wand and heal your body! Since there is no known cure for all cases of CRPS, I encourage you or your advocate to continue researching and trying the treatments that feel as if they may be the best for you.

For those of you who know someone with CRPS, please remain positive no matter how heart breaking this journey may be. Let the person with CRPS live as normal a life as possible. The hardest thing I did was insist my daughter return to school when she could have remained at home to complete her schooling. That day was a turning point for the two of us. At the time, it was a very unhappy, frustrating, mad, angry, tearful day for both of us. My daughter now thanks me for that day.

Be strong, be positive, celebrate successes (even if it means that you walked 10 steps more today than you did yesterday) and don't give up.

Joan

10

I've been through a lot of treatments over the last couple of years and none worked effectively: currently weekly acupuncture sessions help for up to two days. My routine now is 2 paracetamol last thing and an hour's TENs. This relaxes my muscles and makes the first 6 hours sleep bearable.

It took from 2002 to 2013 to get a diagnosis and even in 2012 when I had imaging confirming abnormalities in the left foot and lumbar spine (bilateral pars defects and more as result of spina bifida) the diagnosis was not confirmed.

I have found being involved in my community helps distract me from pain and self-pity so I am slowly,slowly building resilience. The pain is still there and if I set my goals too high I know the pain will last far longer than the activity. i acknowledge bad days (usually rainy and dull) and rest, read, listen to music and eat soup. I have found my path took me from anger, self-pity, helplessness to studying, reading and understanding CRPs to growing self-knowledge and resilience. There is a long way to go and winter is always a time when the pain can get on top of me and fear of more injury is always present as falling over on the ice is a possibility.

11

I've recently been directed to join this forum. Unfortunately I'm several months too late to add my info to Kevscar's petition, but I did click on the link and found the post of information stated from the CRPS hand specialist based in Cheltenham (only about 50 miles from me) very useful.

I've got CRPS in my left foot/ankle. I was diagnosed quickly (it didn't feel quick at the time!) after only 8 weeks of having my foot and ankle swell up after a hot day in the summer where I did not fall or drop anything on it. probably not ever going to know what I did that day to trigger the onset of CRPS, but I had broken/fractured it 11 years earlier, though it healed well at the time. It's assumed I must have slightly twisted it on that hot day which reactivated the original injury.

I've spent a lot of time reading about the condition every since my diagnosis and joined a few forums, but although I've read that early diagnosis (like mine) and starting physio is the key to managing the pain, when my NHS physio signed me off after 3 sessions with a series of exercises I have to do daily/regularly. I was a little confused that Physio wouldn't be ongoing.

Having read the CRPS hand experts post it would seem its not seeing the Physios himself that will keep me mobile but making sure I follow his advice so I'm moving the right muscles to prevent seizing up.

I've also found that most people that comment on forums are in severe pain where as I'd say mostly I'm only on a scale of 1 or 2 of 10 and seriously hoping it can stay that way. I still work fulltime (but it is an office sitting at my desk job) and drive as well. Am nervous about the approaching winter as haven't experienced what the cold does to my symptoms yet, but know the heat made my foot swell so the only thing I could wear were cheap flip flops. We are re-locating next week for 6 months and I may have to walk to work when it snows which is 1.5miles away. I have always been nervous about walking in snow/ice ever since breaking my ankle years ago - but now it would be a lot worse if I slipped. Apparently we are heading for a bad winter. Worse than 2010/2011.

Was wondering if anyone suffering with CRPS had slipped over since the condition started and whether it did make matters worse?

12

Hello again all...

It's not often I find time to speak on here but reading some of the comments and have decided to get myself involved again!

So, to update you.... I've had CRPS since 2008. Initially it began in one side of my stomach, it quickly spread across my tummy, (a year later) down my leg and into my groin - also due to a small cut I received whilst gardening, I now have CRPS (covering approx. a 5mm square) in the palm of my hand (quite randomly!)

I've been through all the 'treatment' the NHS can offer and more - travelled to UK specialists for advice and treatment - I've even been in communication with friends living abroad who also suffer with CRPS, sharing information and treatments we each undergo. Safe to say the UK doesn't do too badly and at least offer Pain Management Courses!

>>>>>

At one of these courses I was told about a machine (not available on the NHS, although they do occasionally offer a similar more permanent version to patients) this is called a ** TSE Machine **

http://www.acticare.com/home/aboutTSE.asp

This is Very Unlike a TENS although it does look similar – I found that a TENS machine would aggravate my condition with its pulsing and that ultimately it wasn’t powerful enough to distract me from my pain…

Anyway TSE – check it out the site and if you can I would defiantly recommend you at least trial the machine – It’s been a godsend for me and is the only thing that makes a difference. I do not feel it when it’s turned ON and yet it makes a significant difference to the amount of pain I feel – I wouldn’t ever be without it now! ** Defiantly check it out if your pain is unbearable like mine was! **

<<<<<

Looking at the last post from ‘Simone100’, and reading about the fear of pain / fear of the CRPS spreading. I could totally sympathise (as probably most of you will) - the truth is that nobody can tell you if this condition will remain stable, spread or even disappear completely.

I’ve had injuries since developing CRPS which have healed ‘normally’ and I’ve also have injuries (like my hand) which have left me suffering with more CRPS. There is just no way of telling what will happen.

I think the fear of the CRPS spreading and the fear of what might become, is a lot of the time, more frightening than the reality!

The only thing you can do is to protect yourself - Never let the condition dictate your life and what you do but find ways to work with it…

Ø If need to get a Taxi because it’s icy outside then get one

Ø If you need to cut up footwear to make something more suitable for you in snow then do it… maybe open top Wellington flip-flop combo? -It just needs to work for you!

In winter I use the detachable shoe grips but also if there’s someone about I get them to help me negotiate my way to my car and back over the ice. Walking on roads or grassy verges can be less slippery than pavements and my best piece of advice quite simply > if you don’t need to go out in the snow and ice, then don’t because it’s not worth the risk!

Items such as; heated blankets, thermal clothing, hot water bottles, microwave teddies and heat patches are also good to keep the affected part warm.

Hopefully some of this lengthy response will be useful to you.

13

Simone, wrap up warn for this winter! Keeping warm and dry is so important. As you are in an office job try and keep active- despite the pain. Ditch the flip-flops and slip on slippers- they won't help- go for sensible shoes and boots (unsexy, but what the heck). The most important thing is moving and keep moving. I bought "Yaktrax" for winter- great in compacted snow and slush (useless in black ice)- they go onto boots and sturdy shoes and prevent most of the scary slides on pavements. Now is the time for buying Yaktrax (or similar products).

Like you I dread winter this year. my tips- I never go out without the mobile, a LED torch and contact details on me. Keep to places I know and never be complacent that the council have gritted. Stock up on salt to grit my own steps and path. Have a couple days supplies of food including long-life milk (yuk). I have learned the hard way that walking sticks are useless in the snow and ice so that is why I use grips on my boots. Winter is also the time for me to strengthen core muscles so that any falls probably don't have the worst effect, so my next mission is to invest in an exercise ball and make the effort!

14

Thanks for your advice Karen

15

Hi all - I am sat in bed after being in hospital with CRPS reading all of your discussions! I have been

trying to find people to talk to who have the same condition i do, it is really refreshing to hear all your

stories and how i am not alone in this!

Here is some information about how i came about to have CRPS:

I am 16 years old and have had CRPS for around 4 years now. When i was first diagnosed only had it in my leg, but since then it has spread to both legs, my back and arm. When i get the symptoms really bad

like now for instance, i cannot walk as my feet are so sensitive my feet can't touch the ground! I have had

physiotherapy, counselling and been all all sorts of meds to help me out - right now i am on

paracetamol, diclofenac and amitriptyline. I do have those 'remission' points, i went for a year and a half without medication, although i still felt it all the time it was no where near as bad as it was, but

unfortunately it is now back and has spread. It is really fustrating as i am still in education/sixth form so when i get a bad patch where i can't go to school and i miss a lot of work, and i miss out on amazing

opportunities such as trips and being with my friends. It also sucks that it is now in my arm as using

crutches now is difficult!

I hope to find more people with this condition to talk to and especially around my age group as i know it is a rare thing to happen to 'young adults'.

If you are reading this thankyou for your time and i hope you can give me some advice if you are suffering too.