Complex Regional Pain Syndrome

[Mike56]

My granddaughter is currently in Hospital and has been diagnosed with CRPS. She is thirteen and has pain in both hands and both feet, this started about five weeks ago and is getting worse. She is loosing weight and is not sleeping due to the severity of the pain. She is on Ibuprofen, Paracetamol, Amitriptyline, Pregabalin, Oramorph, Carbimazole, none of which seem to make any difference to her pain. At times the pain is so severe she screams in agony. The only comfort we can give her is by continually wheeling her around the Hospital grounds by day and night, she also runs ice cold water over her hands for long periods for pain relief which is causing her hands to become very red and sore.The Doctors say there is little more they can do as she is on the maximum medication they can give. It seems to be a case of watch and wait. The unusual problem with this condition is that the pain normally only occurs in one limb not all four. They are wanting us to manage this at home. We are reluctant to do this as it causes great distress to her and to the family. We don't know which way to turn and are besides ourselves with worry. Any advice would be welcomed. Thanks.

[TheVirus]

So sorry to read this. Is she having physio? This is really important and the mainstay of treatment along with the nerve painkillers. I was also advised to take high dose Vitamin C daily, 1000 mgs for at least a good few months. Is she taking this? Studies have shown that it can help.

I am recovering from my second bout of this in my right hand after surgeries. The only hope that I can offer is that it has got easier over time but it is a long haul of painkillers and intensive physio.

Hope she gets some help. It really is horrific.

Can I ask did it just appear out of the blue or after an injury? Very uncommon to get it in all limbs at the same time I think. How awful.

[TheVirus]

If she is not having physio, you need to really push for a referral, I was seen within 2 days, it is seen as an emergency, as treatment needs to start straight away before pain pathways in the brain get altered. They were brilliant with me, doing different exercises and sensory exercises that I had to every hour at first but it did pay off.

[Mike56]

Thank you, she is in hospital and having very little phisio she has been given a walking frame but that's about it.

[Mike56]

Hi thanks, we will try the vitamins. As far as we know this came on out of the blue no apparent injury or trauma. She had this problem three years ago and was in hospital for about three months then all of a sudden the pain just disappeared.

[Flossie44]

Oh I’m so sorry for her, and you all.

My daughter, aged 11 has crps. It comes and goes. So she gets a bout of it about every 3 months. It effects all 4 limbs but not all at the same time. She may loose the use of a limb, it becomes rigid. Changes colour, gets hairy. And is impossible to touch. Even air on the skin as she walks or goes outside and the breath of wind..that sends her hysterical. She has begged many times to have her limbs amputated.

I agree..push for physio. She should be having it several time’s a day as an impatient. That’s what my daughter tends to get. Then when that’s established, she comes home and has physio as an outpatient.

You say she had it 3 years ago and it just suddenly went. That’s exactly like my dd. It goes as quickly as it appears. Literally in seconds!!

It’s the cruelest thing. To watch your child screaming in pain and there is no way to help. You can’t even hold her, as touch alone will send her screaming more!!

I really do empathise. It’s horrific. Please feel free to Pm me anytime. Sending loads of love

[CMOTDibbler]

She needs physio as soon as possible, and then to do the things they recommend diligently - even though it really won't be pleasant. Press for a referral to an inpatient CRPS treatment programme - Bath or the Walton centre are the UK experts.
Keep her away from CRPS online groups. I have CRPS secondary to a nerve injury, and I really believe that the worst thing for young people with non injury CRPS especially is to go on these as it reinforces the condition. You have to keep telling yourself that its your brain getting confused and that there is nothing wrong with your limbs - the only way to combat CRPS is retraining your brain with mirror therapy, sensory input (like stroking different skin parts with cotton wool and really intensely concentrating on the sensation on the good part and transferring that to the painful part), and physio to keep the blood flowing and the reinforce the nerve round trip

[Mike56]

Thank you for your advice, we are exploring all avenues at the moment and each little bit gives s better knowledge of the condition.We are most grateful for everyone's advice.

[LGJL]

My dd (age 8) was diagnosed with probable CRPS earlier this year - one of her feet went purple and was much cooler to touch, and she couldn’t weight bare. A friend recommended a physio, and the physio happened to specialise in neuro-stimulation, using a piece of equipment called an Inter-X. I think it works slightly like a tens machine, but is more high tech. The results of the treatment for my daughter were incredible. She was fortunate as her CRPS was diagnosed (unusually) early, and so the treatment worked quickly, but it might be worth looking into. Wishing you all the best.

[Becca1305]

Hi sorry to jump on rhis really late my daughter is nearly 18 and we have been fighting to get a diagnosis of CRPS for nearly 10 years now and we are still fighting. She has had scans, xrays, physio counntless medication.
We are hoping to be referred to Bath on Monday (we live in kent) but im at a loss and trying to find info or just other parents that are fighting the same fight.
Thanks for reading

[Stormchaser1502]

All I can say is keep fighting. Bath are incredible!! It’s usually an inpatient holistic stay. Fantastic service.

sending huge sympathies. My dd had her last attack 2 years ago. Am praying she continues in remission.