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diagnosis of CRPS

Posted , 19 users are following.

suzanne83
suzanne83

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

1 like, 39 replies

39 Replies

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  • karen04540
    karen04540

    Posted

    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.

    • edith06160
      edith06160 karen04540

      Posted

      I had never heard of CRPS. I fell and twisted my ankle as I went down and hit my head on a hard surface. My shoulder and hip twisted as I lay on the floor. I lost my speech for two days. I was in pain which I attributed to the fall. Days later my head was exploding with centralised pain on the spot that hit the floor. Thought I had a clot the size of my fist in my head. My shoulder and neck numb with pain. My left leg throbbing. My doctor was very dismissive. Gave me tramadol, amitriptyline.  About 4 weeks after the fall, I started getting some kind of weird pain. Felt like I was being scalded by hot water. Never in my life had I felt this kind of pain. My ankle was swollen. My skin darkened around my ankle and up my whole leg. Tears rolling down my eyes. My doctor was dismissive. Tried to show him the discolouration, brushed me off. I felt like screaming. Oh I wanted to die. Shooting pain like lightening struck my body. Pins and needles. Excruciating pain. I was in hell. A friend came to visit and brought along a friend, a retired  neurologist from USA. I showed him my swollen leg and the burn like patches. He asked me certain questions and that's when he said this is definitely Complex Regional Pain Syndrome. Told my doctor.... dismissed me. One night I had serious convulsions, my daughter found me. My whole body quaking. She called 999 and I was rushed to hospital. Thought I had died and gone to hell. Was immediately put on Gabapentin and tramadol and paracetamol. The shakes have eased.l but am still in a lot of pain. My left leg is numb with pain. Have had falls. My son, a sports therapist is helping me with physio. Waiting to see a neurologist.
    • Ginagirl
      Ginagirl edith06160

      Posted

      I too have asked to see a neurologist about the Nerve damage to my Lower spine.. My Doctor does not seem to know anything about this condition..This is probably due to it opening cans of Worms for Injury claims as a proof of that injury.. Physio and passive excercise is good..COLD ICE FOOT SPA IS GREAT HELP TO ALLEVIATE PAIN I FIND. HAVE BEEN DIAGNOSED BY An internet Doctor the symptoms fit GP knows nothing suggested cellulitis I said no its not am a Nurse I know what cellulitis is! ..When it flares it is excruciatingly painful and makes me cry too..I find massage good with baby oil. I have to be careful what I do physically ..too much walking sets it off.
    • Ginagirl
      Ginagirl karen04540

      Posted

      Pain is relative and each person deals with it in thier own way..No two people are alike. Me I have suffered it since 1995 an ongoing debilitating condition, been told its tendonitis Gout cellulitis ..you name it been through all the conditions..But it is CRPS it fits the symptoms perfectly and it is permanent condition it is related to a Back injury L4/5/s1 damaged Nerves ...caused as a Nurse post 33yrs service.. Heavy Lifting/accidental Fall down wet stairs at work( No Sign)..
  • simone100
    simone100

    Posted

    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

  • michelle08284
    michelle08284

    Posted

    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

  • richard007
    richard007

    Posted

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

    which specialist is this ? ( is it Pain Management )

  • nicholas90480
    nicholas90480

    Posted

    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!!
    • janet_011267
      janet_011267 nicholas90480

      Posted

      Hi Nicholas could I ask you what vascular complications you've had please. That's if you don't mind . Kind Regards Janet 🙂

  • richard007
    richard007

    Posted

    what is your medication ?

    kind regards - richard007

  • nicholas90480
    nicholas90480

    Posted

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

    Posted

    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.

    • Brennie
      Brennie RogerB

      Posted

      Do not bother with the nerve block in the spine, I had it done and made no difference whatsoever, I broke my left ankle and suffered nerve damage, which I've had for 11 years, on gabapenti and amitriptyline, the only relief that I found two years ago,was a tens machine, the minute it is turned on the tens sends signals to the brain to say that the pain has stopped and that is exactly what happens, the pain goes away, may not work for everyone, but it has helped me immensely, just cannot use it during sleep, only works whilst its on, does not give long term relief whilst off, however, I have it on for 12 hours a day, my nerve damage travelled when I had a knee operation on my left knee, this pain is not as bad, however, it can travel to any part of the body that requires surgery, I now have neck pain, worse than the foot and so am going to hospital appointments for MRI etc, I think they will probably diagnose the same thing, I'm still working at aged 50 part time, work keeps me focused, it's not easy, because people can't see your pain, try the tens and see how you get on. 
  • richard007
    richard007

    Posted

    hi i have been see my pain consultant , who has told me that i will not get better.
    • alsion
      alsion richard007

      Posted

      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. 

    • richard007
      richard007 alsion

      Posted

      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 .

    • alsion
      alsion richard007

      Posted

      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.

       

    • richard007
      richard007 alsion

      Posted

      Thank you for the quick response.

      if you want to chat via private message , i am more than willing to help you so that you don’t get a stage 4 CRPS diagnosis and a 0% prognosis off full remission 

    • Ginagirl
      Ginagirl alsion

      Posted

      CRPS IS ABSOLUTELY NOTHING TO DO WITH MIND OVER MATTER..We can all try an be Positve  and take life a step at a time if that is possible..This occurs as a result of damage to a Nerve  normally.. if nerves are impinged they dont reheal ..I damaged my back as a repetitive injury the Nerves are damage ..which is permanent.
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