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Jul 31, 2017 · RSD/CRPS in Brain & Nervous System

also – she has the TEMS in early stages – but great fear of surgery as that will only aggravate her CRPS – she has a PT that works on her knotted muscles from CRPS that does offer some relief – even if short lived – but never pain free. She has has received some ketamine cocktail type injections from her pain management doctor but not the IV ketamine yet… and to date no sucess… so please those with CRPS keep sharing…..

Jul 31, 2017 · RSD/CRPS in Brain & Nervous System

Dear Overwhelmed and Janetdh – my heart breaks for you two and others that suffer from CRPS – those who can get a doctor to diagnose in early stages may have a better outcome with proper treatment – trying to be diagnosed with CRPS is a long road of process of elimination – along with many doctors today who think its all in the head… it’s like a medical dark-ages for many. keep fighting and searching – there are those out there fighting… did you hear of the short movie /documentary of Trial By Fire – by Charles Mattocks – documents his mother’s struggle – but maybe not but just encourages me that more notice is slowly being given to this horrible disease. My daughter is suffering from severe GERD – her gastro doctor found she has Esophageal Spasms that most likely caused by CRPS and she is taking s special blood pressure medicine that helps stop the muscles from spasms… she is showing some slow improvements with the GERD but not the CRPS – but please keep on fighting – and shouting out as CRPS is being recognized… and you know there are many out there suffering from it….. thank you for your input and insights…. keep strong!

Jul 31, 2017 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Thank you Gail – my daughter goes twice a week for PT and sounds just like what she has done to her – it helps but the CRPS keeps hitting her body so relief is temporary. I’ll ask her if it referred to as ART. she now has Esophageal Spasms leading into stomach and now taking special blood pressure meds which can help slow or stop the spasms….it appears the CRPS is attacking many parts of her body… but she is a fighter… praying somewhere out there is a pill to slow or reverse this ugly disease.

Jul 15, 2017 · RSD/CRPS in Brain & Nervous System

My daughter is 40, and suffers from CRPS – complex regional pain syndrome. Took her a long time with many doctors from internists, neurologists, Gastroenterologists, etc – many who thought it was all in her head – but was finally diagnosed with CRPS. it is progressively getting worse and she lives in constant pain. I see where there are finally clinical trials going on around the country for an answer but they are only looking for those in the early stages… not advanced. And yes the only meds available are the opiods and that is becoming harder for those who suffer. It is tragic so many people will be overlooked because of this tragic abuse of meds in our country BUT everyone has different pain thresholds and all are not additive type persons… hopefully more will be done – and thank you for this forum – I am new to it but just maybe Mayo and/or our sharing will bring more information…..

Jul 15, 2017 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

It is very similar but fibro – best way to describe CRPS is that all the known afflictions have been eliminated by various doctors from RA, neuropathy, carpal tunnel, fibro, etc. the nerves in the body feel like they are on constant fire with no relief. the disease starts slowly and builds in intensity – it can spread to all parts of the body. unknown what triggers the onset – from a surgery or even twisted ankle can trigger the onset – what medicines that work for fibromyalgia does not work on the CRPS. a slight breeze can cause flare up, advance stages can not tolerate heat or ice, — no relief to date. hope this helps a little.

Jul 15, 2017 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

you are right – complex regional pain – my bad – I appreciate the additional information.

Jul 14, 2017 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….