Posted , 6 users are following.
Hi everyone
?I am hoping someone can answer this for me. I experienced a severe blow to my elbow in a car accident and have now developed CRPS in my forearm, hand and wrist. Does anyone know if CRPS can transfer from the original site of injury (i.e. my elbow) down into my hand and wrist?
Thank you!
0 likes, 14 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
walter59 Bluemart40
Posted
Bluemart40 walter59
Posted
brenda_savvy Bluemart40
Posted
Hello
Yea it can spread. 💯.
Mine was in left foot. Now in all limbs and spine and neck.
colleen_36473 brenda_savvy
Posted
Hi, I too was diagnosed with crps left ankle. I am so sorry to hear if yours. It's such a difficult scary disease,nsometimes it overwhelmed he. I keep trying to find ways to treat and keep it at bay.
Can you help me in has been most helpful for you ? Sometimes I feel it may be spreading and was wondering how you knew and How long it took take to spread? I hope it's okay if I ask. No one where I live has an understanding of this. I feel lost with drs as well.
Thank you so much.
blessings to you and gentle hugs and prayers are sent to you.
Colleen
Bluemart40 colleen_36473
Posted
Hi Colleen
I am so sorry to hear of your pain. I completely sympathise with you as it is debilitating. I had broken my wrist which was in a cast. Then I was involved in a car accident whereby my elbow suffered a soft tissue injury which has caused terrible pain. The pain then spread down my forearm into my hand / wrist and then I was diagnosed with CRPS in my hand and wrist. There is conflicting diagnosis as to what caused my CRPS... was it the soft tissue elbow injury or my original wrist fracture! That's what I am researching. I am taking Gabapentin and Tramadol daily which helps. I am also under a Pain Management team who do a variety of therapies with me along with physio. I try to motivate myself daily with positive things like walking. I also attend a weekly exercise class for those with injuries and long term medical conditions. It all really helps. Where are you based ... in the UK?
brenda_savvy colleen_36473
Posted
Hi there no problem. Well I had it in left foot and was told to get walking and push through pain or I would end up in a wheel chair. So I did physio for 40 weeks once a week. I started walking In a swimming pool. Sometimes I wish it had started in my hand so I could of still walked etc. So walking in pool is helpful. Try get a warm pool.
I have the cold version of CRPS so heat is my friend
I use a basin of warm water with Epsom salts 3 times a day for my feet. I also do the same now for hands. This is good pain relief for me.
Pacing is important. I have 3 kids so it's tough but I try rest when I can even sitting watch their cartoons.
Spreading. Well I felt the horrible toe pain in my right foot and I knew it was crps. It was identical to left. Then I started getting shooting pains in arms and wrists starting doing stiff. Burning. I got nerve blocks done on all limbs. It helped my right side not left.
My back is very bad. It started with burning feeling. Then two months later they think dystonia is setting in. This scares me.
I also have severe Allodynia. I couldn't wear socks. I was worried as winter is coming. But I found bamboo socks. Very soft fabric and I can wear them now !! That made me happy lol. I may need to buy bamboo under wear and long sleeve tops to put Normal clothes over.
colleen_36473 Bluemart40
Posted
Thank you so much, I am so sorry that you have to go through this too. It sounds like you have good control though and very helpful therapies. Supportive environment is beautiful. I am doing aqua therapy and my ankle really likes this. I am just beginning weight bearing new . I am in more pain but I push through. There is a clinical trial here in us and it's Iv nedroninate 4 times administered.
I heard it helps . Have you heard of this? I might try it,
they are still accepting patients for the trial. I hope it's helpful, they also do this treatment in Italy.
I hope you feel better and I pray for all those suffering from crps and a cure,
Blessings to you and gentle hugs.
colleen
andrea11745 Bluemart40
Posted
Hi there
I am deeply to hear of your diagnosis..this is an awful road you're about to embark on and hopefully with early detection and treatment your pain will be manageable but that's not why they call it 'complex' ..it is so difficult to manage for some. My CRPS was diagnosed in 2014, 2 yrs after having neck surgery for a herniated disc, and that was 2yrs after initial injury, and I've often wondered which caused the CRPS ,? Surgery or initial injury? Honestly it doesn't matter. You can drive yourself crazy trying to figure it out.I've just spent 11 weeks in hospital, 8 of them in the ICU with this terrible disease. My pain started in left arm and was treated as radicular arm nerve pain from herniated disc, of course nothing helped. I should have kept a journal on how many nerve blocks I had once diagnosed but within 6 months I felt this familiar pain in left leg..well it makes the arm pale in comparison. The pain is awful at times with severe allodynia and terrible spasms. We finally found a surgeon and I was flown to another city to have a baclofen pump inserted into the sympathetic nerve plexus in spinal cord that sends baclofen medication to control spasms in left leg. It doesn't help with pain, so I take medicines for that and we may try adding another pain med with baclofen in pump to help with pain right at the source. Fingers crossed as it would help as we all know the side effects some of these drugs we need to take , have . Unfortunately, within the last few months while recovering at home, I have felt that familiar pain in my right big toe, like frost bite, a cold burning pain..so now I'm scared to death that no matter what we try this disease has a mind of its own.
I have all the colour and temperature changes in both left arm and leg. I've not had the hair changes I find so often in research. But I do believe the journey is a little different for all of us but at the core it's the same..it can turn your world upside down and your families too..I will hope and pray that am early diagnosis will help you in your treatment and certainly places like this to ask questions and read about others journeys, all help.
The best of luck
Andrea
Bluemart40 andrea11745
Posted
Thank you so much for responding to me. Your journey so far with CRPS sounds so debilitating and painful for you. I agree with you that it is going to be different for everyone but we all have that one common denominator - the pain. They have now reviewed my meds and with a mixture of Gabapentin, Amitriptyline and Tramadol, I am coping. Sleep can be very difficult. I am under a great team of physios who now agree that the CRPS has spread to my right hand - how the heck did that one happen! It does have a mind of its own. Thankfully I have an amazingly supporting husband and group of friends. I am learning to cope with this slowly but know it is a long road. I really do hope that things start to improve for you sooner rather than later. This forum is a fantastic tool to share stories and learn more about this horrible disease.
Martina
PlumberChic Bluemart40
Posted
PlumberChic
Posted
Bluemart40 PlumberChic
Posted
Hello, thank you for replying. I am certainly hearing lots of stories on this forum about it spreading, it really does have a mind of its own! I am so sorry to hear of your battle. Interesting about the stellate ganglion blocks - I was put forward for this by the pain management team at my hospital but my Ortho Consultant advised against having one of these blocks saying that the research showed that the success rate was not great.
?I am so sorry to hear about how it has spread for you. I do wish you well. Mine has now spread to my right arm and hand. Its unbelievable how it has done this. ??The pain on my right side is not as painful as my left thankfully and I am managing the pain with a mixture of Gabapentin, Amitryptiline and Tramadol.
Can you tell me what the SCS trial is?
Martina
PlumberChic Bluemart40
Posted
Hi Martina,
You are completely right in saying it has a mind of its own. As for the stellate blocks my person Dr (pain specialist/anesthesiologist) didn't want to do another round knowing they wouldn't work but because mine was cause from a crush injury at work and its a workers compensation case we have to get everything approved and they wanted another round of blocks....
The SCS trial is a spinal cord stimulator trial it is for a period of 5 to 7 days to see if a spinal cord stimulator implant will be the best option for me. The trial surgery they will make a small incision in my back amd place leads on my spinal cord I believe they will be attached to the ganglion nerve but I am not sure. What i do know is that it sends electronic signals to the nerves that block the pain receptors. There is a battery pack attached to the leads that during the trial period will be strapped to my body. With the full implant that battery pack is implanted.into the buttocks. There is also an external device about the size of a cell phone that allows you to.control the intensity of your device. It is supposed to be the best treatment for crps to restore quality of life. Some depending on the type if work you do are even able to return to.full work duties. I am a new construction plumber so I'm not getting my hopes up but my fingers are crossed. Right now my goal is just.to.feel better. I'm very sorry for your situation. A friend of mine had it spread from her arm to her fave and then to her leg. She also just recently go diagnosed with some type of non diabetic related neuropathy as a result of the crps. Her Dr told her it can affect even your heart. I am managing the pain right now with lyrica, Norco, and ibuprofen. I was on gabapentin 8 months ago but my Dr switched my to lyrica and it made all the difference in the world. And I havent had any problems with swollen ankles. Also when it spread he put my on a medrol dose pack of steroids which helped to stop the spread. I feel very blessed to have a Dr who specializes in crps. Because its so rare that most drs don't know enough about it to properly treat it.
Bluemart40 PlumberChic
Posted
The SCS trial sounds really interesting and I sincerely hope that it works for you and you can start to feel better.
You are indeed blessed to have a Doctor that specialises in CRPS as you are right in that not many doctors know enough about it. I seem to get conflicting information on cause and spread. It is now almost 1 year since my car accident and it has spread to my right side but not as painful as my left side thankfully. I still cannot drive nor return to work but like you I am hopeful and I keep praying that next year will be my year of good luck!
Do keep me posted on how your SCS trial goes and I wish you all the best in your recovery.
Best wishes
Martina