CRPS

[Haylou]

Hi, I've just found this site and thought I might be able to get some advice. I'm 21years old and female. In October 2014 I found out I had a fracture in my left wrist that got missed for 5 years as well as a TFCC tear. I had surgery last year to repair the fracture and ligament and thought I was doing fine until October last year. I have been on and off all kinds of painkillers since then and I have recently been informed that I have complex regional pain syndrome and am currently classed as disabled. On Wednesday I had an IVRA nerve block and am unable to work. I'm also having to take 30/500mg cocadamol every 6hours and 5ml oramorph every 4hours. I have been offered the chance to have a spinal cord stimulator to help control the pain and I am wandering if anyone on here has had one and can tell me a bit more about it. Sorry for the long post but I want to give as much information as possible.

[Lou_inpain]

Hi Haylou and welcome! My best friend and my co-founder of Painfully Strong suffers from CRPS and has it in 3 of her limbs. She is wheelchair bound at present and is being treated at The Walton Centre in Liverpool. She has suffered from this condition for quite sometime but wasn't fully diagnosed until last year. We are both from Northern Ireland and met in hospital. If you use Facebook come and join our forum and have a look at our Facebook page. We have just today posted a trailer for the movie 'Trial by Fire' which is all about CRPS - try YouTube.

Our details are: painfullystrong.co.uk

Www.facebook.com/painfullystrong/

Www.facebook.com/groups/painfullystrongforum/

Hope to see you there and this is a great place to get advice and support too.

Lou xx

[Haylou in reply to Lou_inpain]

Thanks you 😊

[Hidden]

We are also on facebook facebook.com/groups/4997211...

We have successfully formed an All-Party Parliamentary Group for Complex Regional Pain Syndrome and have formed a medical team of 2 Professors 3 doctors and a Specialist Pain Physio. Everyone who wants to fight for us is welcome

[Haylou in reply to Hidden]

Thank you 😊

[Hidden]

Hi haylou there are two types of crps u have type 1 that's were u have a fracture type 2 that were there is nerve damage live carpol tunnel or white finger that's what I have had it for 6 years now in that time I have had my left arm and my foot amputated because my that bad, but before I had the amputates they tried me with the spinal cord but it did not work for but it may work for u what they will is give u a trial to see if it's right for u also go to u gp and get them to refer u to a pain specialist they can help u with putting u on the right meds.

I wish u the best of luck

[Haylou in reply to Hidden]

Thanks you I have currently been seeing a pain specialist for 3 months and he was the one who performed the IVRA this week. I hope you're doing better now, thanks for your help.

[johnsmith]

See someone who can massage the shortened muscles in your arm. Shortened muscles are painful and need to be stretched out (which can be a painful process). When the shortened muscles are stretched out they become far less painful.

Pain is a symptom. It is not a cause. You can attempt to control the pain and make what causes the pain worse which in turn increases the amount of pain control things you need.

Muscles are controlled by the brain and spinal reflexes. They also are an engineering structure which obeys the rules of engineering and physics. Doctors prescribed painkillers because it is a quick and easy fix to get rid of the patient. Doing the things required to fix the cause of pain is time consuming and requires a lot of work by the patient. Many people do not want to do this work.

Each complementary therapy has its own input as well as dependence on the therapist. I have found from experience that no one therapy by itself is helpful whereas combining therapies to work in conjunction with each other is helpful and to a certain extent works.

I get McTimony chiropractic on the NHS. I pay for Alexander Technique lessons. I engage in T'ai chi. I engage in meditation and mindfulness. I study movement and emotion. I observe how my mind makes things worse or better and adopt strategies accordingly. I have studied how lack of sleep plays havoc with my ability to have fine muscle control and think clearly.

My McTimony chiropractor and Alexander Teacher work on freeing some of my tight muscles. The effect of freeing the tight muscles far less pain and increased strength in the muscles. There is also increased strength in the rest of the body. Unfortunately, the improved function is not permanent. This why I have to have continual repeat treatments.

Hope I have been able to be useful.

[EOLHPC]

You've got some great replies, Haylou

I'd only add that it was actually formally diagnosing the overlapping conditions composing the jigsaw puzzle of my version of CRPS that made it genuinely possible for me to get my CRPS reasonably under control/manageable.

Until I got the overlapping diagnoses, for decades, I been conscientiously & relatively effectively coping in much the same way johnmith describes. What my complementary therapists + my doctors + I didn't know was that I'd been diagnosed as an infant with systemic lupus, that my hypermobility was Ehlers Danlos syndrome vascular type and that I had been living lifelong with a primary Immunodeficiency. So, these overlapping primary immune dysfunctions + connective tissue disorders couldn't but play a part in my CRPS...and they needed to be acknowledged & treated in order for those complementary therapies to be able to fully help me

By my mid 50s various multisystem secondaries, including the CRPS, had been diagnosed. But not the significant prinaries. These began to be diagnosed about the time my CRPS had rendered me so disabled I was virtually housebound...with amputation looking vvvv tempting. But my long time hero pain consultant became so alarmed by certain symphony that he insisted I be referred for rheumatology investigations. That was 2010... Within a few years, at 62, I am now feel generally better than I have since my 20s thanks to my hero Chiefs of immunology, rheumatology + their diagnostic talents + their daily combined therapy treatment meds. Yes indeed I continue all the lifestyle management & complementary therapies (on my consultants advice + with their full approval (they assure me all that has helped me avoid ending up even worse off than I had)). AND my CRPS is now much better managed & much more controllable...am no longer housebound. Am walking & standing without a cane....no more wheelchair 🤗

Sorting out all the pieces in my CRPS jigsaw puzzle took 7 years of concerted effort & determination + multiple consultation on the NHS & privately. Each consultant helped, but due to long term underlying systemic illness, I needed the multisystem approach. And I learned just how severely conditions like SLE can denature soft tissues...my ligaments of course are v loose due to the EDS but the lupus autoinflammation had caused terrible tendon tightening which the ligamentous laxity disguised. So, even my decades of conscientious alexander + tai chi etc couldn't stop me becoming severely disabled...only an intensive arduous daily tendon stretching rehab regime has really helped, facilitated by the antiinflammation action of my immunosuppressant lupus meds: the 2 are BOTH necessary in my case: meds + rehab regime. Alongside all the lifestyle management!

So, please take heart and try to think positive...even in very complex cases, there is hope: I'm living proof.

Kevscar's Facebook group is FANTASTIC!

Please let us know how you get on

🍀🍀🍀🍀 coco