CPS? CRPS? Help appreciated :)

So I was told I have Chronic Pain Syndrome or CRPS a few months ago..... I'm not really sure which one since my doctor was quite vague. Alongside that I was told to have patellofemoral pain syndrome and shoulder impingement.... to be honest they're all words I don't particularly understand. It started off with a sprained ankle 5 years ago. Since then I have had reoccurring sprained/strained/had pain from joints a crazy amount of times. It affects my ankles, wrists, shoulders and knees. Can anyone explain what could be going on and what CPS and CRPS mean?

Alongside this, in the last year I have experienced abdominal pain. It is excruciating and has caused several hospital visits and an ambulance ride. It can last around a week or two at a time and occurs every few months. I've been scanned for gallstones and appendicitis etc and have been cleared of them. Doctors seem lost? Anyone heard of this before and whether so not this could relate to CPS?

16 Replies

  • Hi there are 2 types of crps the 1 is were u have sprained ankle or hand that can be treated type 2 is caused by nerve damage and operations, I have type 2 mine was I had carpal tunnel syndrome so they had to release the trapped nerves that's how I got it had it for 5years mine was so bad I had to have my left arm amputated and now I got it in my ankle that was caused by a car accident. U need to get u GP to send u to a pain specialist they can put u on the right meds and send u to physio

    Hopes that helps a little

  • Yogibe , May I ask what was so bad you had to have your amputated?

  • Well from my elbow to my hand the pain was so bad that I could not do anything and my hand was twisted, with crps most off the time they do not amputate they give u meds and physio but I had tried everything the pain specialist gave me but they did not work so I went back to him and said if he did sort it I would have amputated it myself now I'm waiting to see if they are going to amputate my foot

  • Sorry about this, yogibe...can v much relate to your situation: I spent 7 years with crps making my foot so awful and everything various medics were trying only helping "so much", but not enough to stop the nightmare my foot had become...so, I was basically at the same point: begging for amputation....even though I knew well that one fairly widely accepted point about crps is that amputation isn't a simple solution. And, by the way, I have had one amputation already due to chondrosarcoma.so I know a bit about post amputation ongoing issues

    Then, 2 years ago, my pain consultant finally referred me to an expert prof ortho surgeon in Bristol for a second opinion...he immediately figured out the last piece in the diagnostic jigsaw puzzle (my foot has both types of crps...my case is v complex because of early onset multisystem autoimmune conditions combined with repetitive strain injury etc) and within 6 months of adding his treatment plan the crps/s intensity had significantly reduced...I was vvv glad to have avoided chopping my foot off....but, I admit, maintaining this treatment plan is a big commitment involving multifaceted treatments and significant dedication of time & effort.

    Am 62...not sure how long I can keep this up. My primary illnesses are infant inset systemic lupus and ehlers danios type hypermobility + early onset immunodeficiency and loads of secondary multisystem conditions.

    Wishing you every ounce of good luck🍀

  • Good explanation. So, now I know that I have both types of crps...great!

  • Best wishes to u

  • you need to check according to the Budapest Criteria you must have 3 of the 4 main symptoms

    CRPS Symptoms - Description:

    FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

    •Chronic burning pain - includes allodynia; extreme sensitivity to touch, sound, vibration, wind, and temperature.

    •Inflammation - this can affect the appearance of the skin; bruising, mottling, shiny appearance, blotchy or pale appearance, and tiny red dots are some examples.

    •Spasms - in blood vessels and muscles of the extremities, called vasoconstriction,

    •Insomnia/Emotional Disturbance - (including limbic system changes such as short-term memory problems, concentration difficulties, and irritability).

    Not all four symptoms are required for a diagnosis but most patients do have at least three out of the four at any one time. There are a great many additional symptoms that can occur but not all patients will have all symptoms. Some of the symptoms may even be transient depending on the Stage the patient is in; the time of day, weather, noise level, current medications, whether or not the patient was treated with ice or hot/cold contrast therapy, etc. What makes this disease even more difficult for Doctors to diagnose and treat is that patients can present with different symptoms at different times, even from one appointment to the next.


    There are many additional symptoms that can be part of CRPS besides the four main ones. These include but are not limited to;

    - changes in skin temperature (warmer or cooler compared to the healthy/opposite limb).

    - changes in skin color (skin may appear red, dusky, covered with red dots, cyanotic, blotchy, or pale).

    - hypersensitivity to touch, sound, vibration, wind, noise, temperature, barometric pressure changes, water temperature, etc.

    - irritability.

    - depression, fatigue, and/or insomnia.

    - changes in hair/nail growth (nails can become brittle, cracked, or grooved - increased/decreased hair/nail growth).

    - skin can become shiny, changes in sweating patterns - increase/decreases.

    - bone and muscle loss/changes, atrophy/weakness.

    - swelling and stiffness in effected joints.

    - throbbing, crushing, tingling, shooting, aching, stabbing, burning pain in the effected area.

    - tremors (shakes).

    - problems moving the effected extremity/body part.

    - migraines/cluster headaches.

    These symptoms can come and go and alternate over time, changing from month to month and year to year depending what stage the patient is in, what treatment they are on, what medications they are using, how successful these treatments are, how the disease is progressing, and/or what other disease(s) might be introduced along the way. One of the many problems for Doctors in treating this disease is that many patients present differently and the symptoms can vary not only with the stage the patient is in but even the time of day the patient sees the Doctor!

  • Many thanks for that kevscar


    I especially appreciate the bit re the complications added when diagnosing CRPS in complex patients taking heavy duty meds for chronic incurable multisystem autoimmune conditions like mine: the interplay & coexistence of CRPS and my many conditions is significant to all aspects of my diagnostic & treatment process. It's basically, a flipping nightmare. am constantly having to remind my big gang of consultants of stuff in order to make sure their overview is adequate and they really do have their eyes on the ball

  • Thanks for getting this discussion going, mf: very interesting & helpful...I hope you have found it helpful too. there was another good discussion on this topic some time in the past 2 or so weeks on here, started by littleeffie....maybe worth finding via the forum search function? Wishing you all the very best🍀

  • What examinations have you had? Plenty of diagnosis but not anything on posture and muscle behaviour. Muscle behaviour is often ignored by the medical profession. Muscle behaviour cannot be seen on x-rays, MRI scans or ultra-scans.

    Muscle behaviour can bruise tissue and cause it to become inflamed. Muscle behaviour can compress nerves and cause referred pain. Standard treatment works on dampening pain nerves. Pain nerves respond to pressures on them and this is not affected by pain killers.

    Muscle behaviour when it causes problems needs to change. To start to change muscle behaviour you need to start work on yourself by observing the things that you do. This is where meditation and mindfulness as thought by the Buddhist religious traditions is useful.

    To fine tune muscle behaviour you need the help of Alexander Technique teachers. McTimony chiropractic can help to unspasm muscles which have decided to go into spasm.

    Physio I find can be often not helpful because they adopt the one size fits all approach. There is a need for people to learn how their muscles work and understand how the muscle skeletal system affects things via the spinal reflexes.

    Hope this helps. Willing to answer any questions you may have.

  • Thanks that actually is making quite a bit of sense. I had some amazing physio at a mineral hospital some months back which seemed to fit with what you are saying. And thank you everyone else for your comments. I'm not 100% quite what's going on yet but good to know there are people out there 😊

  • Hi and sorry to hear you aren't finding the answers about all your symptoms.

    I am not sure if the gastro problems are associated with CRPS but any injury and chronic pain can upset your system.Maybe medication or just tensing up because of the pain which I have found out as having to keep putting myself back to correct posture and relaxing or abdo/ibs type symptoms.

    As barnclown said in a reply I recently got the CRPS Diagnosis and posted as during those pushed to the edge pain times amputation has looked very very good but have been advised against it.As it now seems to be affecting my other hand(hoping its compensatory over use) I don't think it would be best.It is made all the more difficult to deal with due to SLE, RA,Ehlers Danlos, fibromyalgia, Raynaud's plus others and working out which,what and when.

    Seeing pain specialists in October so hoping for some answers and help then but will ask about the gastro connection and let you know.

    Hope you get some help/answers soon


  • Thank you! Yes please let me know if you get any information about gastro links.... Would love to be able to work on solving problems rather than just throwing tablets at them 😊

  • I like the way you're looking at this. Perhaps a bit more of my story could be useful:

    In my case, the 4 things that have possibly helped most are:

    1 the Alexander technique, meditation, ant inflammation diet & other lifestyle management

    2 bespoke full foot orthotics, sensible footwear etc

    3.the prof ortho surgeon crps expert's gastrocnemius stretching rehab programme (vvvv intensive) which I continue to practice daily

    4 my systemic meds for the lupus: autoimmune conditions cause denaturing of soft tissues through the body. My lupus was infant onset, but went without systemic treatment until 4 years ago, except for emergencies. Even years of careful exercise, muscle traing etc + antiinflammation diet etc couldn't stop lupus's progressive damage causing the tendon tightening in my legs and feet which contributed greatly to the development if my crps. But now I've had 4 years on systemic lupus med, my soft tissues have loosened up enough to respond to the prof's rehab regime....and this extreme daily stretching is the last piece in the jigsaw puzzle of my crps diagnosis...the piece that meant I could put ideas like amputation behind me

    Take care mf. Hope you'll let us know how you get on 🍀

  • Please read this you can change the future


  • I was sent to a so clued 'pain expert' who took special thermo photographs of my hands and asked me several questions and concluded that I did not have CRPS but all my health advisers contradict him??This is a very difficult area to deal with.No help from a so called pain expert who has made my situation worse!I now have to go to other doctors for a diagnosis!

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