CRPSmom

CRPSmom

My daughter 24yrs old diagnosed with CRPS 2 1/2yrs ago after 3 1/2yrs long years trying to find out what was happening to her body. She was an elite athlete all thru high school and college. I will not stop until enough money is raised for research to find a cure or relief from the burning pain

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  • Hi there are 2 types of crps which as u daughter got and what type of pain relief is she is on, I have had crps for 7 years mine was that bad that I had my left arm above the elbow amputated and last year I was so depressed that I tried to end my life because I had both of my feet above my ankles amputated as well, my crps was that bad. You will find that it is every rare that they will amputate I live in Chester and I see a specialist in the Walton center he is one off the top specialist in country in the treatment of crps. Best wishes to u daughter

  • Hi I am 22 years old and I was diagnosed with complex regional pain syndrome just over a year ago. I was training as a chef and so my whole life got turned upside down. Since then I have had a spinal cord stimulator implanted at a hospital in London and although I still get bad days the majority of the pain/ crippling spasms have stopped, so much so that I have been back training as a chef for the past month and a half.

  • God Bless you my daughter is due for a spinal implant in about a month so you suggest it??

  • Hello ,,, i was diagnosed with CRPS 4 years ago,,, i have had the scs implant in for just over 3 years and i know that some people say it works,, well i have to say that is not what it is doing for me,,, since i got it implanted i wud say that my pain has increased and my medication is higher than ever ,,,, anyone that asks me about it ,,, i just say to them to really think it over before you go ahead with it and to really take notice of how the trial goes for them before they go for the full implant ,,,,, I really hope things go well for ur daughter

    Debs

  • Personally I would say don't jump right into it. Having a spinal cord stimulator was one of my last options before that I was trailed on gabapentin, amitriptyline, pregabalin and IV blocks. Unfortunately no of these options worked for me so I went for the spinal cord stimulator. There is a lot your daughter needs to consider before going ahead with the surgery. If it works she will have it for the majority of her life and it causes a few restrictions on what she can do . For example if she ever wanted to go skiing, horse riding or on a big roller coaster it is not advisable as it increases the risk of parts of the implant fracturing. Before having the surgery I was unable to live like people my age I couldn't go to work, had to drop out of university, cooked prepare my own meals and on some days I couldn't even get dressed or wash my hair. Now I am able to but I also now get occasional back pain on top occasional flare ups.

    I will mention it that if the spinal implant works for your daughter it is important that she realises that it's not a fix all magic cure. At first that's how it seemed to me but when the occasional flares up happened it brought me crashing down mentally.

    Having a spinal cord stimulator can be a fantastic thing and it has changed my life in a positive way but it's all about personal choice.

  • Ty I am so happy it's working so well for and I pray the same for my daughter

  • Hi there. There is a massive need for treatments for crps .there are a few things happening with it. The fda have listed crps as a rare condition which means drug companies can now get funding , there are a few new treatments being trialed around the world. The unfortunate thing is most are based on newly diagnosed patients.

    Usually under 6 months. So like your daughter I would probably be excluded.

    I was diagnosed 2003 after 4 years bouncing from doctor to specialist to pain clinic etc etc . At diagnosis I was told that most treatments wouldn't work after 6 months , so I'm guessing that's why the focus is on new patients.

    Crps is not at all nice I have full body

    CRPS and awaiting to find if it is now affecting my internal organs like kidneys and stomach . Actually hoping there's something else wrong which is strange but it may be treatable, if that makes sense.

    My advice would be never stop looking

    But also work on how your daughter can make her life better now. Rather than wait on a cure to develop.

    I have been living Drug free for almost 7 years now , struggling a bit with new issues. I still have all the same good bad flair up days weeks etc. So the drugs only helped to reduce secondary pain .so if joints moved pulling muscles it would reduce that a little .

    I am now training to be a tutor for chronic pain group in my area. I find this a massive distraction. And if I can help others it makes me feel good.

    Your daughter being a sporty person should help in that she may be able to learn lots of the techeques that will help her.

    Relaxation .distraction breathing techniques etc . There are many online it's a case of finding which work for her.

    Trying to stay positive learning triggers etc will also help.

    I too hope someday someone somewhere will produce a miracle cure

    But I don't won't my life on hold until then.

    It sounds like you too are very focused and determined so you will no doubt be a massive help.

    Good luck

    Here if you need me

    Many thanks

    Dave

  • CRPS is easy to diagnose and easy to give treatment for which does not work. You are being diagnosed on symptoms and treatment from the medical profession is about pain relief. The issue of muscle over contraction tends to be ignored. Over contracted muscle is painful. Over contracted muscle needs to be stretched out. The stretching out of over contracted muscle is a painful process, but well worth it as it gives pain free muscle over words.

    You need to investigate the issue of over contracted with the following: a McTimony chiropractor. This will reduce some of the muscle cramps that could be causing problems. A slight reduction in discomfort will help reduce the stresses towards going below the stress breakdown point of body stress.

    A massage therapist who is familiar with the concept of muscle trains. Google "muscle trains." Google "Thomas myers". Google "Fascia". They will be able to look at issues of over contracted muscle and hopefully reduce some of the problems.

    An Alexander Technique teacher will help with posture and fine tuning of muscle control problems.

    Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf is a free download from

    amaravati.org/dhamma-books/...

    It is book which hopefully will give your daughter some tools for investigating her CRPS.

    Sleep is involved in the fine tuning of muscle control and good mental health. It is worth while for your daughter to determine if they are getting enough sleep and if not find ways of increasing her sleep regime.

    Hope this helps

  • Your daughter being sporty type may help her deal with crps - I was diagnosed in 2009 - have tried many oral meds that quite frankly masked the pain but left me feeling so drugged up I could barely function on simple daily routines - through time and several blocks I opted to try mind over matter and thought if im in pain sitting at home then I would try going to the gym and 'just be in pain' for my own health and wellbeing and esp my own sanity this worked a bit ... after several guinàthedene blocks which my body stopped responding tooI now have qutenza patches administered at the pain hospital every three months .... these patches have been a new lifeline and allow me weeks of oral med free time ( which saves me the horror of the side effects from tramadol and dihydrocodeine)

    Life is finally looking positive again for me x good luck with your daughters treatment - btw I refused the sc stimulator as the pain relief benefits for me were not significant enough for such an invasive treatment

  • Thank you so much for your info she had been on in the a huge amount of medication but she did not respond well to them they did not make a difference so we I took her off them. She is chem-free

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