I was told recently that my 14 year old daughter has crps she is in constant pain even though she has physio at the hospital and i do what i can at home with cold packs exercise and pain relief yet no improvement after 7weeks of physio im at my wits end as i have arthititus in both hips and it really upsets me to see my daughter in constant pain and discomfort.

39 Replies

  • Hi sisn71 u need to go and see u gp and get them to refer u daughter to a pain specialist they can help control her pain and other things, I have had crps for the last 6 years

  • Hi I was recently diagnosed with CRPS in my left arm. I'm 21 but still live at home as my parents have to help me with cooking and washing. I know my mum really struggles to see me in pain and she is constantly worried that I will injur myself further. Over the past two years I have had a lot of treatments via a pain specialist. Maybe ask your GP if your daughter could try CBT mirror therapy which is meant to help train your brain into thinking that the signals it's receiving aren't for pain. Another treatment I've tried is a IVRA block to help try and block the nerves that were the cause of the CRPS. I am currently in the process of being referred for a spinal cord stimulator to help with pain management so if you see a pain specialist they may be able to discus these options with you.

    The one thing I would say to avoid really is taking too many different pain killers or very strong ones as they don't really help with the pain, they just mask it, and the side effects can out weigh the benefits.

    Sorry for the long reply but I hope this helps. If you have anymore questions don't hesitate to ask :)

  • Thankyou it does help alot ive read about the ivra my daughter is only seing a physiotherapist at present as she has only been diagonsed recently yet she has had the problem since april im hoping that were not being fobbed off have my doubts about her care plan .

  • Hi.

    Yes I have also got CRPS down my right side.

    I'm 50yrs old & I'm desperately looking for help.

    Currently I'm awaiting funding for my next operation.

    I am looking at other forms of help.

    I hope that you are ok.


  • Steve be very careful according to Professor McCabe at Bath any operation is virtually certain to cause the CRPS to spread or start at the incision site, in fact once you have CRPS the slightest trauma anywhere can do this

  • Hi.

    Prof McCabe in Bath has told me that I don't have CRPS !!!!

    She has told me that I have got "Neuropathic Pain"

    instead !!!!


  • Hello slsn71 ,

    Sorry to hear your daughter is experiencing such immensely painful condition as CPRS. I live with Fibromyalgia, so have great empathy for what you, your daughter and family are are going through.

    Would I be able to provide you with this link to the charity, Burning Nights CRPS - especially the information on treatments

    I hope this information is helpful

    I wish you and your daughter all the very best


  • Thankyou very much for this information very helpfull i just want my daughtet to be back to her cheeky self and some sort of normality .

  • Hi,

    CRPS is extremely painful but if your daughter is still in severe pain when not using the affected limb then the pain relief she has just simply isn't good enough. You must insist on her being referred to a pain clinic urgently. Regardless she should be under the care of a pain clinic to give her the access to the treatments that will help her.

    I am a sufferer myself and my heart goes out to you. I have read a lot about the condition and children do often make a full recovery from this wretched condition (and some adults too).

    One thing though, please stop the cool packs, extremes of temperature are not good for CRPS. I know she will be burning hot and sweating but applying ice is probably the worst thing you can do for her, try a tepid bath instead or a fan. I know it is illogical and I cannot explain the science behind it but a lot of CRPS is illogical, the messages to her brain are scrambled and her brain is working hard to fix her but as all the messages are confused the brain often does the opposite to what you expect. I too was told to apply ice to my injuries by A&E, GP and Physio and I kept resisting because it didn't seem to help and only later did I find out that it probably made me worse.

    There are several CRPS sufferers that follow this site and a campaigner in Kevcar so just ask your questions and people will answer you if they can.

    Best wishes


  • Just seen your reply to Halou where you say your daughter is only seeing physio. Who diagnosed her? I thought only a pain specialist or neurologist could confirm a CRPS diagnosis. If it was your GP, they just do not have the expertise on this subject. The pain team can prescribe different meds and do treatments that a GP just will not do.


  • It was a consultant in rhematoid at the childrens hospital he then referred my daughter to physio but today after seing her physiotherapist they are now saying that she will have to see a pain specialist as they are now not sure that it is crps but another chronic pain disorder after seing all the photographs of her knee and the visual apperance has now changed yet again im gobsmacked that they have said this after weeks of me saying i had doubts of the diagnosis in the first place

  • Cold packs exercise is not a good idea. It could be the thing that is keeping the crps in existence. The muscle needs to be warmed to allow better stretching. Cold will cause the muscle to tighten.

    Crps can be over contracted muscle. Over contracted muscle is painful and the pain will reduce when the muscle ceases to be over contracted.

    I know from experience that exercise to stretch over contracted muscle is painful and it can take many weeks to stretch out over contracted muscle.

    It is worth seeing a sports therapist as recommended by the local football club for help with the issue. Physios tend to be one size fits all which in a number of cases is not helpful for muscle recovery.

    Hope this helps.

  • It does but today we had the news that they now think aftet seing my daughter and the photos that i have taken as requested that it may not be crps but another chronic pain disorder and that she will have to see a pain specialist now im really frustrated i just want to know what is going on with my poor daughter who is in costant pain and discomfort it breaks my heart to see her like this.

  • You are going down the medical profession route. They may or may not be able to prescribe treatment that is effective.

    It is worth seeing an Alexander Teacher. An Alexander Teacher will not cure the problem. However, an Alexander Teacher should be able to help your daughter reduce the pain and discomfort that she is in.

    Hope this helps.

  • Hi.

    I have also got (CRPS, Undisclosed) I'm 50yrs old.

    I have been through a number off pain clinic's.

    I'm currently awaiting "Funding" for my next operation.

    If I can help you further please let me know.


  • My daughter is at the birmingham childrens hospital it was a rhematoid consultant who said that she had crps but yesterday we were told that because her knee is showing signs of no improvement even with physio they are going to refer her to a pain clinic within the hospital am awaiting a phone call its so frustrating as i just want a confirmation of the actual problem .

  • Hi. I

    I very sorry for your current predicament. I got CRPS "undiagnosed" & I share your frustrations.

    There seems to be very little know about it & also how to treat it.

    Please let me know if I can help you further.


  • I will thankyou hoping that i startgetting results as i will contine to fight my daughters corner until i get what she so desperately needs a good nights sleep would be a start.

  • Hi.

    Yes that's the spirit, we all have to keep fighting for answers.

    Has your daughter been given/takes regular medications???

    Please let me know know if I can help/fight for you.


  • She has been given only ibubrofen 400 mg which she is very relunctant to take which is rubbish as it doesnt have much effect and also she is asthmatic thankyou for your continuing support and advice it makes a huge difference to me and my daughter.

  • Hi, That's no problem - please let me know if I can help & if you need a shoulder !!!!!


  • Thanks for your support will keep in touch when i find out more

  • Hi, no problem just give me a shout !!L

  • I agree with everything that Jo said. Your daughter, whatever the diagnosis turns out to be, needs to have the support of a good pain management team in the Pain Clinic. I have to disagree with Haylou's opinion on meds and avoiding them. I have whole body CRPS and I take Lyrica, Tramadol and Duloxetine - all for the pain. Without these meds, I would be unable to get out of bed, I would be unable to work - and I would be in hell, because of the pain. I wish you and your daughter all the very best and hope that things improve soon.

  • Thankyou for your best wishes im hoping that bwing reffered to a pain clinic will give my daughter a better quality of life as she goes into year 10 in september and it breaks my heart to see her in so much pain .

  • According to the Budapest Criteria you need 3 of the 4 main symptoms for a diagnosis of CRPS

    CRPS Symptoms - Description:

    FOUR Main Symptoms/Criteria for a diagnosis of CRPS:

    •Chronic burning or freezing 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.

    1) The CONSTANT PAIN can be described as a burning pain. It feels as if a red hot poker were inserted into the affected area. it is also described as throbbing, aching stabbing, sharp, tingling, and/or crushing in the effected area; this is not always the site of the trauma. The effected area is usually hot or cold to the touch. The pain will be more severe than anticipated for the type of injury sustained. This is a hallmark of the disease. Allodynia is typically present as well. Allodynia is an extreme sensitivity to touch, sound, vibration, barometric pressure changes, loud noises, wind/breeze, temperature, clothing, and even the gentle touch of a loved one. This makes it increasingly difficult on the spouses, children, and other family members; as their softest touch can now cause pain instead of comfort. If the patient has not been properly diagnosed yet and these sensations not properly explained, these symptoms can cause extreme duress and confusion to all involved.

    2) The INFLAMMATION is not always present in the same form but it can take various forms; the skin may appear mottled, become easily bruised, bleeding in the skin, small red dots, have a shiny, dry, red, and "tight" look to it. In addition; increase in sweating usually occurs as well as swelling in and around the joints (shoulders, knees, wrists). In some patients a lack of sweating may occur, and some even go back and forth between the two.

    3) The SPASMS result in a feeling of coldness in the effected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back. They can involve not only muscles but also blood vessels.

    4) The fourth part of this square is INSOMNIA and EMOTIONAL DISTURBANCE. CRPS affects the limbic system of the brain. Doctor Hooshang Hooshmand described it well: "The fact that the sympathetic sensory nerve fibers carrying the sympathetic pain and impulse up to the brain terminate in the part of the brain called "limbic system". This limbic (marginal) system which is positioned between the old brain (brainstem) and the new brain (cerebral hemispheres) is mainly located over the temporal and frontal lobes of the brain." This causes many problems that might not initially be linked to a disease like CRPS; chief among them are depression, insomnia and short-term memory problems but also includes agitation, irritability, and possibly even poor judgement.

    CRPS can cause Depression, NOT the other way around.

    CRPS causes insomnia by not allowing the body to drift into REM, or rapid eye movement, sleep. This is the sleep that allows the body to use its own healing abilities. Without it, the patient's pain cycle continues and becomes more entrenched. As the body cannot heal itself, it becomes harder to achieve that sleep, which makes the pain worse and so the cycle continues. Many patients can feel they are losing their mind as their ability to remember things, short-term, greatly decreases. Things like: what someone told you an hour ago, what you had for lunch yesterday, whether you took your pills this morning, what you were just talking about, etc., are quickly forgotten. You are NOT losing your mind. Loss of short-term memory is part and parcel of CRPS. Other signs of problems here would include the inability to think of, um, well, ah, hmm, just the right word. The patient's ability to concentrate is also lessened while their level of irritability is increased. These problems get even worse as the sleep cycle continues to worsen, weeks and months on end building a sleep deficit you cannot seem to recover from.

    Do these symptoms sound familiar to you? Do you also sometimes have an increase in your pain when your stress level is higher? Or the noise level is higher? Do you want to crawl into a hole by yourself and pull it in after you? Does the simple rustling of a newspaper or the soft touch of your spouse send you through the ceiling in pain? Do you sometimes have trouble finding a certain word? Do you sometimes completely lose track of what you are saying? If these symptoms sound familiar, know this; you are NOT crazy and you are NOT losing your mind. You are also not alone, not anymore.


    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!

  • She has most of these symtoms which seem to be getting worse but even with photographic evidence of the affected knee and her diary of all the other symptoms they are reconsidering thier diagonosis and will refer her to a pain clinic this has left me so confused but also hopeful that they will get to the bottom of this and my daughtet will be alot more comfortable and will have a better quality of life as she is only 14 .

  • Who is she seeing ask for a referral to Professor McCabe at Bath she is the best in the country

  • She was seing a consultant in rhemutoid clinic but now im awaiting a phone call from the pain clinic for an appointment i can ask about proffeessor mcabe but we live in birmingham so im not sure if they would refer her to bath

  • She takes referrals from all over the country it is the only dedicated CRPS unit in the UK

  • Thankyou i will defitnetly use this information as i feel i am the only one at the moment fighting her corner thankyou again

  • Its been a while as things for my daughter have been stable but now she is having problems with her vision the optician is concerned but also bit confused as to why this bluriness is happening as her pictures of the back of her eyes is ok can crps cause problems with vision im at a loss as she been not too bad x

  • CRPS is the only condition in the world that can go full body all 4 limbs torso neck scalp eyes mouth and internal organs, looks like mine has now spread to the throat

  • What are they doing for you and how does it affect you im gobsmacked my daughter has had crps since april how long have you had this condition

  • 18/6/2009 Unfortunately I have a neuro-receptor disorder which gives me instant immunity to any drug after 1 dose, it's how I got CRPS local worked on left hand carpal tunnel op but not right hand. So no doctors or medication just Willpower Rock n Roll, Cogarettes and fighting for sufferers everywhere

  • Luckily my daughter is a fighter and is probaly stronger than me but it helps to talk to other sufferers so i can understand more about what she is going through thanks for listening x

  • Go on to facebook and search for Kevin Scardifield and friend me I need all the fighters I can find, you'll see why

  • Ok i will

  • I live in Scotland and my pain management team wanted me to go to Bath for a residential course, but I didn't want to be away from home for so long...

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