Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
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This topic contains 7 replies, has 7 voices, and was last updated by  UniQuegurl70 3 years, 4 months ago.

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  • #5002

    tigger1
    Participant

    My name is Christine and a parent of a daughter with CRPS. The hardest thing to bear has been seeing her following her dreams and then having them snatched away from her because of a syndrome that is relentless in its pursuit of its travail through her body.

    I am pleased that this site allows both those who suffer from the syndrome and parents, carers and friends to obtain information, help and an outlet for their frustrations with the medical world for their lack of ability to get funding for research into this rare syndrome.

    I have used writing poetry, music and searching the Internet for information and research papers to help me at the times when I have become frustrated in not being able to help my daughter. Having my optimistic nature being tried time and again is hard but seeing my daughter fight again and again makes me determined to keep fighting with her to get medical research started.

    #5003

    Hi tigger1 aka Christine,

    Firstly many thanks for registering and starting a thread in the carers, families & friends section!

    I totally sympathise where you are coming from when you talk about your frustration with the medical profession and lack of funding for CRPS / RSD.

    I am glad you feel able to join the Burning Nights online forum and I do hope that many more families, parents, friends and carers of sufferers of this debilitating and excruciating condition, feel that they can join the forum.

    I do hope that your use of poetry, music and researching on the internet has found you your distraction to help you overcome the terrible fact that your daughter has CRPS.

    Once again thank you for registering and joining our community forum 🙂 Please do feel free to take part in any of the threads within it.

    Thanks!

    #5731

    tigger1
    Participant

    I have returned to this section again to see if any other parents friends or carers have anything to add for maybe new parents or friends of newly diagnosed CRPS sufferers. I know that I was devastated in the beginning and still am but have learnt different ways of coping as this syndrome continues to rear its head and bring more suffering to my daughter.

    Also sad that our country does not seem to know much about it and do not put money into research that could help those who have it. Have you got a way of coping can you share it please.

    #6477

    Georgie
    Participant

    Hi Christine
    I hope you check back and find my message. I know it’s a long message, but I hope to be able to help.
    My daughter who is 12, has had CRPS for two years. In the beginning I searched everywhere for help and support from other parents, but could find none – or nothing recent anyway. We live in Australia.
    I don’t know how long your daughter has been unwell, but if it’s early days I really feel for you. The overwhelming sadness and stress I felt during the first 18 months was almost unbearable. But stay strong. It should get easier for you as it has for me and some other parents I’ve now met.
    I know this disease is different for everyone, but I was completely dissatisfied with the lack of information and support from the hospital and their strange aloofness and reluctance to engage. I threw myself into researching her condition. We’ve explored every single avenue, seem countless physicians and tried so many different treatments. I want to share with you a few things which I have learned and which made it easier for us. My daughter now copes extremely well. She is happy, participates in most activities with a bravery I admire so much and refuses to let it define her (which if we all admit it, is extremely difficult to do given how constant and consuming this illness is. And she’s only just turned 12). So here are some things I’ve learned.

    Medication: She tried it all, pregabalin, gabapentin and a host of different anti-depressants to counter-act the affects of the anti-epileptics and to help her sleep. They changed her, but they didn’t really change the pain. In the end, she chose to take herself off everything and although she still has pain (in varying intensities) I have my daughter back. She is alert, happy and not in some dreadful drug fog that also seemed to negatively impact her immunity. It’s not well published, but there have been no randomised controls of these drugs in children with CRPS. They are prescribed on the basis of results obtained from studies in adults. Have a look at the website Stopchildhoodpain which is based in the US.

    Stress/worry: It’s not in their heads. So it can be difficult to accept that counselling is a major part of the recommended treatment. But being constantly in chronic pain is stressful. For my daughter however, the stress was compounded by the fear of not knowing what was wrong with her and she no doubt read my fear too. The various counselling that she had, ended up being quite a negative and pointless experience for her. However, the occupational therapy (coping skills, distraction techniques, games) were great. I’m not sure the group sessions, although fun, were ultimately useful. She met children who had become wheelchair bound or ended up in hospital. Her fear increased.

    Limit the pain discussions: I went from taking full responsibility of my daughter’s pain and misery to letting her deal with it. Harsh, but it was good advice I received. When she tells me now the pain is really bad, instead of dropping everything and massaging it, or trying everything to help, I simply acknowledge it and ask what she thinks she’ll need to do to get through it. She knows I’m there for her, but also knows she’s the only one who can control how the pain affects her. I will have devoted discussions to her pain with her, but we limit them and now they are really infrequent. She’s got better things to think about. When she’s had a bad pain flare-up and managed to distract herself with reading, or painting or listening to music and then say, comes to the table for dinner, I tell her how amazing she is, how strong she is and how we are all just so proud of how she copes and manages. Reminding her that she’s strong and can cope has helped her become strong. She knows now that if she focuses on the pain and how it’s limiting what she can do in that moment, then she can become very sad and overwhelmed.

    Activity/Overdoing it: Exercise is really, really, important. Yes it hurts and the pain intensity after physio and exercise goes up and can stay up. BUT, she’ll also get pain flare-ups if she doesn’t exercise. And it’s important to keep re-inforcing the message to the brain that the limb is not in fact injured, that it can cope with exercise. She avoids high impact sports, netball, basketball etc for now, but is okay with team sports where there is running on grass. It feels good for her to be part of a team – even if she can’t last a whole match. A big negative for her is too many late nights or overdoing it. Sleepovers are okay if she’s got a couple of nights to get over them. Not enough sleep equals pain flare-up.

    Diet/Supplements: The hospital says there’s no link. But having spoken to a naturopath who had it for five years and then went into remission after following a program, and then done my own research, I disagree. My daughter’s blood tests showed mild iron deficiency, mild Vit D deficiency. Nothing else. We took the advice of the naturopath (didn’t pay to see them, nor purchase anything from them – it was just advice from a fellow sufferer). Iron tablets, Vitamin D with Vitamin K, really high dose magnesium and vitamin C. We also cut alot of processed food from her diet. Her diet had always been pretty good – lots of fresh fruit and veg and good proteins – but we did allow the odd sweets, cakes, soft drinks. Once we minimised these, the improvement was actually quite noticeable. In 3 months on a fabulous diet, with supplements, enforced walks and swimming every day (plus the occassional massage from Mum with coconut oil to keep those muscles relaxed), things really started to improve.

    Wild cards: LLLT (low level laser therapy). We found a doctor offering this in Sydney after an article in the paper. Sceptical, always sceptical, but in desperation we tried it. It took a few visits, but the pain could go from an 8 to a 2 in one session and sometimes stay low all day or even overnight. My daughter actually laughed out loud the first time the treatment lowered the pain. I’d forgotten what it was like to hear her laugh. Two other children from the hospital tried it with the same success. It doesn’t cure it, but it’s great for pain control. We went 2 x per week for about 10 weeks. They are now doing a trial in our local hospital. But the practitioner is everything. Ours was a medically qualified GP who had done a doctorate in laser treatment focusing on pain.

    My daughter is happy, outgoing and motivated. We no longer go to the pain clinic (by choice, not because she doesn’t have CRPS anymore). We know what keeps her well and balanced and she doesn’t need the judgmental and one-size fits all treatment from the hospital. Every new injury makes us both ‘freak out just a little’, but bit by bit, we are training her brain (and mine 🙂 to assume the best not the worst. She’s learned to be kind to herself and understand her body. I’ve learned to take care of myself so I can take care of her.

    If you’ve made it this far, I hope you find it helpful. I wish you luck and strength and all the support you need.

    #7111

    Teri
    Participant

    I too am a mother of 14yr old girl who has CRPS since July and thanks so much fur sharing. I have learnt so much in the time I have been on this site than I have learnt over past 4 months. It’s great to hear how u have managed to cope with the condition, giving hope to all us who are still coming to terms with it. Xxx

    #8308

    Lisa
    Moderator

    Thank u Teri it’s always good to know what we are doing is worthwhile and helping anyone affected by Crps not just the sufferer.
    Lisa
    Burning Nights Admin

    #8814

    Nanka
    Participant

    Hi

    My daughter is 4 months into what is her worst and longest flare up. She was first diagnosed 4 years ago with her first flare up. (I realise how lucky we have been with that compared to how long other people have suffered without a diagnosis) We are currently pursuing the medication route, with the plan of getting her stable enough to function. (going to school regularly seems a far of wish at the moment) Pain is her main and only permanent symptom, but one symptom she has which doesn’t seem to get mentioned anywhere I have been researching this condition is cold. Her arm has this mad burning pain, but generally she feels cold all the time. I’m wearing t-shirts and am comfortable but shes in multiple layers including hoodies or sweatshirts and is still really cold. I think its unlikely she has something else wrong with her, but I don’t know what, if anything, can be done to keep her comfortable.

    Any thoughts and suggestions greatly received

    xx

    #8815

    UniQuegurl70
    Moderator

    Hi christine,
    I’m lori, one of the admin with burning nights. I’m newly diagnosed, only since march, 2016. My limb is often cold but I wear a sleeve all day, everyday. I also wear a lidocaine patch under the sleeve. I’m on meds that help control the allodynia so I’m able to tolerate the sleeve.

    Hopefully others will chime in with suggestions. I hope she finds relief soon.

    ~Lori

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