I am excited for you Brambledog and for your possiblity Vrae. Let us know how it goes!

My heart sings with this news. I am so grateful for you who are able to keep up with the literature and who are bringing news and experience from across the globe. In the last few years I was off dealing with other issues that probably exacerbated my CRPS; this information came out then. Forgive me if this is inappropriately placed information in this thread. I do believe I have been a perfect storm for over 30 years. It started as a localized reaction and spread over the years to my entire body. At the same time I've had other inflammatory and autoimmune conditions (PVD/ CAD arthritis,myositis ,,,,,food and chemical sensitivities) emerge that I felt had to be related.. We just didn't have enough information on genetics... I think with more testing we will find combinations of factors that create our unique yet similar CRPS. I am going the less expensive route of DNA testing than our medical system. I'm using 23andme for $99 to get my genetic makeup. A ND will submit it for results, I believe all of my inflammatory conditions are related, am overjoyed that the focus has shifted, and am grateful for treatments that are supportive in nature,

Thank you Vrae, Brambledog and Neurochic... Keep up with your diligent work; we all shall benefit. I am so deeply grateful. May we all have less pain.

Hana

Vrae, tos8 and Hana, I'm so glad you said that! I was dreading mentioning the trial in case someone immediately dissed it and scared me rigid!

I do think we have to keep trying....within reason of course, always. There's always risk, but there's risk to getting in a car too, and we can't control that.

I'm glad you're trying a block Vrae, I hope you get some kind of relief from it, preferably long-lasting hey but even a holiday from this might be nice.

Hana, I completely understand what you're saying - I'm a coeliac, my stomach and system are very sensitive to meds, I have arthritis, I had glandular fever as a young adult... It's one of the reasons I asked to get on the trial - I'm convinced that the auto-immune system has a big part to play in CRPS. Not necessarily the way we develop it, but the way our bodies decide to continue the cycle of pain and set up that horrible feedback loop of misery. After all, some folk find their symptoms go within a few months - that magic timeframe for treatment - what if that's more to do with how their auto-immune system actually works properly?!

Who knows...but we keep fighting this thing, and I think in the end that gets us further along the road of keeping as much of ourselves as possible out of its jaws

Never give up hope. One day...just maybe...

Bram

There are currently 4 different IVIG international clinical trials in which the NHS in the UK is involved. They are all at different stages of authorisation and recruitment and are all different. Its easy to look at the whole list of NHS CRPS trials - I think there is a list of about 116 trials currently but, obviously, most of these are closed now.

In case people don't know about it, it is easy to search the International Clinical Trials Registry Platform (ICTRP) which is run by the World Health Organisation (WHO) to find all current, past and planned clinical trials which pertain to CRPS (and every other medical condition). These trials are an international list but many of them are multi-centre international trials so they are sometimes accessible even when you are not in the main host country of the principal academic or clinician running the trial. In conditions with small numbers of potential participants, they tend to be prepared to recruit participants from a greater number of international locations. The inclusion and exclusion criteria for each trial are clearly listed so you can decide if you think you are eligible and then there are contact details for obtaining more information or making contact.

I have to say this before I go... I am from one side of this house to the other. Finally we are finding answers...Thank you all for sharing what you have. I feel like my level of hope for correct diagnosis and treatment of CRPS has risen exponentially.

Bram - please keep us posted. Is this the treatment you told us about in December? I wish good outcomes for you. You deserve wellness ~Lottie

The terminology is way over my head.