diagnosis of CRPS

Brain and nerves
1

Can anyone please advise me on the most appropriate way to obtain a diagnosis of CRPS? I have had symptoms of pain, oedema (ankle) and cyanosis (foot) and in my left leg/groin/back follow lifting equipment at work in 2010. The pain has never resolved and I'm now medically retired due to the problems as I can only walk very short distances and I limp all the time. I presently take Pregabalin 100mgs 3 times a day and amitriptyline 30mgs at night, I also add in paracetamol and codeine as needed. I used to use TENS but I now use a pain pen as needed. I'm presently under the care of a excellent neurologist and a hip surgeon.

Many thanks

Sue

2

I am in a similar situation to you Suzanne. My injury dates from 2002 (left foot) and only in January this year was CRPS diagnosed. Last year I found out I had spina bifida related spine problems and the nature of the pain makes me suspect the CRPS has spread. Basically the diagnosis is clinical- a physical examination comparing the affected limb to the normal and running through the Budapest Criteria for clinical examination. The medic should also look at a differential diagnosis- such as Paget's disease if you are diabetic. I was fortunate (?) that I also have changes to the bones in the foot and that the patchy osteopenia and bone marrow oedema are classic signs of CRPS. However, I still find specialists put "CRPS (?)" or "possible RSD " or "painful neuropathy" in letters and reports so the situation regarding an affirmed diagnosis is still poor in the UK. I have had to do a lot of my own research so I am an expert patient.

The one thing I have found really difficult to do is explaining the nature of CRPS pain (without seeming like a hypochondriac) as no-one has a clue unless they also have CRPS- I have yet to meet another person living long-term with this condition. Sometimes I find a bit of empathy is a boost but pity makes me very uncomfortable.

3

I've just joined patient.info as it was recommended from a Facebook user on a CRPS group (that I joined when I got diagnosed in August 2013). I too broke my left ankle in 2002 (Sept). However I have been living a pain free life having never heard of CRPS until July this year when my left ankle became very swollen and painful after I'd been out for the day in hot weather wearing new wedges. After seeing 3 different doctors over the following 8 weeks the 3rd doctor immediately came up with the diagnosis as he was a specialist at the local hospital for years prior to joining the GP's.

I agree with you Karen in that its hard to explain

4

hi im new on here and have been suffering for the last six yrs to be finally told i have crps an physical depression but my specailist has just informed me that she will only be seeing me every six mnths and im still on the waiting list for a psychiatarist i know how you feel its so annoying not being heard an moved alone like it dont matter i have problems walking due to the pain an very rarely sleep but all i can recomend is lots of feel gd films it may not last long its better then waiting to be told take these tablets an go away xxx lol

5

hello michelle . i am sorry that you have got CRPS and Depression.

which specialist is this ? ( is it Pain Management )

6

i have been suffering with crps with vascular complications since march 2007 after my legs were crushed. it took over 5 yrs for my doctors to fully diagnose the symptoms, this is a very difficult condition to live with. in 2011 i had a neuropathic stimulator fitted. the device is fitted internally and wired to the nerve ganglions in the lower spine, with the support of a vast amount of medication it has improved my mobility. but i have resigned myself to a life of constant intense pain. on a more positive note to have a diagnosis does make me feel less insane!!

7

what is your medication ?

kind regards - richard007

8

pregabalin, tramadol & paracetamol at present. tramadol should be replaced with ketamin as better at at controlling pain with smaller doses.

9

Hello nicholas90480,

I'm in the exact same boat as you are. My legs were crushed by a forklift about a year ago. Now the doctors seem to be looking into CRPS. My last doctor referred me to a pain specialist who gave me Gabapentin and now wants to do a nerve block in my spine. From what I've been vastly researching, these pain blocks on the spine don't work and usually end up making people worse and could potentially be very dangerous causing more permanent damage. I don't think I can allow this doctor to do this procedure. I'm in such a rut because I can't take any more pain and I sure don't want to be somebody's Guinea Pig so they can make about $6,000 bucks profit a shot "just to see how I react". They haven't even been approved in the U.S. for diagnosing or treating CRPS. For what? Especially when the shot is only temporary relief, only for the very view. Why do people like you get these implants and keep them in if they don't work? I understand the desperation some may feel like I feel myself and sometimes I say to myself I'll do anything to stop this pain including putting a gun to my head but you've got to be good to yourself first and always do anything to make yourself feel better. Did this implant really improve your mobility or does it help you psychologically knowing that it's there to help you move along. I'm having such a hard time accepting this being told I would have to be in pain management the rest of my life. I've researched what these drugs do to people long term and it's never good. What helps me just a little is to stay warm, massage, keep moving my joints without force, and a strict diet. But then within 10-20min. symptoms right back. Constantly back and forth. Sometimes it's hard to breath. How do you cope? If I didn't have a wife and 2 kids I would of probably ended it by now.

10

hi i have been see my pain consultant , who has told me that i will not get better.

11

I would like to ask those who are suffering from CRPS, if any of you have had excess fluid removed from the affected Area? I was diagnosed recently and have been making a point for a fair while now, that the swelling doesn't seem to be subsiding. After researching it for a fair while, one thing I noticed is that there is no mention whatsoever of draining excess fluid from the troublesome area. My reason for asking is, that seeing some of the pictures and reading the prognosis , the one thing that stood out, is discolouration and persistent swelling. Does it make sense to anyone else, that the trapped fluid, is becoming poisonous, therefore travelling to other parts of the body and affecting them as well? Your feedback would be much appreciated. Cheers

12

Hi Everyone,

By accident I have just come across this site and thought I would share my experiences of CRPS with you all. I have had CRPS since 2009 after an accident involving my left foot, a shoe and 3 toes. I accidently kicked my foot on the shoe as I was getting ready for work, I didn't break the toes but did splice the peroneal tendon in 3 places as it ricchocheted around the ankle. After toes had healed was having mad days when I couldn't walk and unbearable pain which felt like my foot was falling off my ankle, I now weird. Anyway, eventually saw the right doctor who tried in vain to get it to heal but couldn't, and after plaster casts didn't work I had the op. Peroneal Debridement, well on one thing left to say about that 'CRPS' was on its way. My Pain was through the roof, I couldn't and still can't let anyone touch my foot and have a lot of days when I can't walk, I know it sounds silly but its as though I am stuck on the spot and cannot move away. I did however eventually after a lot of doctors even acupuncture get referred to the UCLH in London who confirm that it was CRPS and was now chronic. I take 30mgs of Pregablin as the side effects are not as harsh as Gabapentine, plus Co-Codamol plus paracetamole on and off. I have seen a Psychologist who has helped me accept that I am now disabled and that I also cannot walk very far, or stand for too long. I have also just retired early from work as I never got to go back, I couldn't commute on the trains. I do get daily pain and this has also spread into my right foot, but I try to keep moving as much as possible, but the pain management team has taught me to recognise the triggers, don't try to do too much, keep positive as stress can make the pain worse. I wouldn't recommend trying to get the fluid drained as I had that done in my op and now have a large bubble type lump which is very painful just under my ankle and discolouration so I would say put your feet up as much as you can. Keeping positive helps me get through each day, as each day is slightly different. I know it may sound strange but I felt better once they told me what it was as you can research it yourself and learn what you can and can't do without waiting for the doc's to tell you. I hope this is helpful and that you are one of the lucky ones that it goes into remission. Thanks

13

Sorry that's 300mgs of Pregablin not 30, I wish it was I would have a lot more energy.

14

Helo everybody,

it's good to find a site where people know what you're talking about. I have been suffering from CRPS since December 2013 when I was hit by a car and broke my wrist and forearm. I'd never heard of this condition and I wish I still hadn't! I knew something was very wrong before the cast came off, because my fingers were all swollen and twisted and the pain in my arm and shoulder was excruciating.

It's 5am as I write. I've been up since 3am. Nothing kills the pain without sending me into a zombie state or making me vomit so I have to put up with it.

On my website, I'm attempting to make the best of things and reporting on my treatment. You're welcome to have a look. Send me a message if you like.

Best wishes,

Celia

Emis Moderator comment: I have removed the direct link. If users want the web site address pelase use the message facility

15

Hi Sue

I am in the same boat as you and currently being referred to a Neurologist so see the extent of the Nerve damage to my spine which is an industrial Injury cause by Poor Health & Safety as a young Nurse. Sufferd this since 1981 a fall down stairs in 1984.. kept going till 2009 then retired from the stress of work and pain in my back and left leg..Now I have CRPS 2. No diagnosis as such but I was informed by an Internet Physio this is probably the condition.. GPs do or say very little, little help reall NHS accepted Liability but are only paying me £463 amonth to live on.. They have blatantly lied in thier report. Crps 2 Nerve Injury from existing Trauma is not often recognized because it points to a previous Trauma and often degeneration is blamed if it is a Back injury.

Have you had Nerve Conduction study done Sue? What does the neurologist do for your treatment.. Have you bee offered a Fusion? What has he said that it is permanent?

My trouble is I hate all the Medications .. they make me dopey and when an episode arises I end up in bed.. I also use an Ice bowl to cool the foot when its raging and painful.. Helps alot. Pain Pen what is this new never heard of it can you explain?

16

It seems to be very difficult for some people to get this condition diagnosed. I was lucky...if you can call it that! I had a routine tendon operation in my foot four years ago due to heavy walking and fallen arches. Whilst in plaster my pain was unbearable but thought it was normal following surgery. After I had the plaster removed and stitches taken out (which caused me to faint in pain) I saw a physiotherapist. He had seen this condition before and I will always remember the shock on his face when he saw my foot. He referred me immediately to the hospital for hydrotherapy, mirror therapy and to see a pain consultant. As I said I was lucky to have someone know the condition straight away. 

Unfortunately after all this intervention I still have the condition four years on. I walk with sticks and on my toes. I do work full time as I'm a line parent and have no choice. I have an adapted car to drive and can park under my work. My mum who is 75 does all my housework, gardening, DIY, cooking. The future does worry me as it's clear it will not go away. 

I take gabapentine, amatriptyline, co-codomal, naproxen, an anti depressant and use lidocaine patches. The patches are good but the pain on taking them off is unbearable. I have had guenethadine blocks and Botox which can help...but didn't in my case. The most helpful thing to me has been mindfulness exercises. I had 26 sessions and can now zone out in work when need be! I would say that the only reason I managed to get to see a psychologist and psychiatrist was due to the condition causing me to become suicidal. If I hadn't got so low I would still be waiting. 

I would say that to remain mobile and positive, no matter how hard, is the best way to keep this condition from taking over your life. My consultant tells me the best way to treat this condition is to tell your brain every day how much I love my foot and look at it constantly. Sounds weird but it really is the way forward with CRPS. The more you loathe that area the worse the pain. 

As I said I have been lucky...to still manage to keep a job (by keeping my tablets at a level I can work at during the day), to have an amazing consultant at the pain management clinic, to have had mental health input, mindfulness sessions, every kind of input which may help and my car on dla. Without all of this I would be in wheelchair by now. 

The pain is unrelenting and without a doubt the psychological side to this is so very debilitating. I live my life around when I can take my tablets and worry as to whether I can manage a few hours sleep before getting up for work. Each morning I reach for my crutches and hate them so much but I have no choice but to keep going for the sake of my son. 

Push all you can to see a specialist in the condition and to see a psychiatrist who can refer for mindfulness sessions. It isn't the answer and the trouble is with any health condition , one illness leads to another. I have reflux, hiatus hernia, insomnia , sciatica , stomach ulcer, fibromyalgia, mental health issues.....all due to CRPS or a side effect of too many tablets.

This condition is eventually being believed but unfortunately some still think it all in the mind. I guess it is....but the pain is very real. Sometimes people ask me what is wrong and I just cannot be bothered to try and explain this frankly unbelievable condition. 

So just keep pushing for anything you can get to help. It may not cure it but it really helps knowing people are at least trying. 

 

17

Helpful!! The only way to get over this condition or to stop it from getting worse is to be positive about the area you have it in. Some people do go into remission with it. I have had it four years and walk with crutches so I've not been so lucky. But I have had enough treatments and input ...physical and mental...to know it can get better in some cases. 

Not too sure why a consultant would say this to you. Being negative about the condition only makes it worse. 

18

Medical people DWP say that because it is easier for them.. and costs nothing ..I want a diagnosis and a nerve conduction study.. I get DLA but lucky to get that really.. I dont work any longer diue to my back.. AND suffer depression from this when I am immobile and static with the pain.

We need to get the NHS & Professionals to understand the condition much more and research it. this link I have found is most useful and heavy going.

https://www.rcplondon.ac.uk/sites/default/files/documents/complex-regional-pain-full-guideline.pdf

19

Your statement is unconstructive and without the proper information , in which you cannot comment ! as you don't know my personal circumstances and medical information! 

The Disease is " Complex" as it changes patient by patient. all my Consultants and my Occupational therapists , physiotherapist's  ,CPN's, GP all have come to the same conclusion . they just manage the pain best they can. 

I have been to numerous hospital's leading in CRPS. who have come to the same conclusion 

i agree some people do go in remission .

20

I agree...I don't know your personal medical details. People on this forum all have the condition caused by varying injuries or trauma to the body and it affects everyone differently. 

Like you I have had numerous interventions both physical and mental over the years. By far the most informative were sessions run by a professor who suffered from crps and fibromyalgia and how he managed the conditions whilst still working. 

Yes the pain consultants manage it the best they can and I have had so many attempts to help..hydro therapy, mirror therapy, botox, guenethadine blocks and mindfulness lessons. All, apart from mindfulness, have had no effect. I am now waiting for.a spinal block.

What I do know though is that stress or anxiety increases the pain. I go to work only because of adapted car, a.parking space under building but mainly because when working the pain reduces

 However, anything in work that causes stress increases the pain immediately. To be told by your consultant it won't get any better surely increases the stress and anxiety which in turn will increase the pain. My ex had an amputation and it is similar to his phantom pain,.in as much being positive and.relaxed reduces the pain. 

I just felt for you to be told it will not get better is very negative,.causing you anxiety.and in turn would  increase the pain.