Went to Ortho appt today, wasn't good. He diagnosed me with RSD. Thought I was going to go to a boot, but instead I got another cast for another 4 weeks. My head is spinning.
Just keep thinking positive and the next few weeks will fly by.
What exactly is Rsd? I haven't heard of it
Hi Leelee
im sorry to hear of this, you are not alone I got diagnosed with RSD 3 weeks ago also known as CRPS. What I've learned is the earlier it's diagnosed the better the outcome. I have an amazing Dr and she put me on gabbapentin cream with ketamine in it three times a day on my spine at the base. It has helped a lot with the pain. I'm also on low dose Netroxne known as LDN. It is agreeing with me, it helps the immune system. I also got a good book online I highly recommend It. I have learned quickly is act fast. Do your research, get a Dr who knows this disease. It f you have any questions I'm here for you.
The book is
positve options for complex regional pain syndrone
by Elena juris
take good care and try and keep your foot moving as best you can by self massage, water, gentle or passive manipulation. At all costs try and avoid flare ups....best
Jannie 👣
This is all I really know, I kind of zoned out when he said it could last a lifetime. Not what I was expecting.
The exact cause of complex regional pain syndrome isn't well understood but may involve abnormal inflammation or nerve dysfunction.
Complex regional pain is characterized by pain that is greater than would be expected from the injury that causes it.
Thanks Jannie! I will order the book. I have the best doctor, he is amazing. He put me on amitriptiline, he said it does really well with relaxing the nerves. He also put me back in a cast for another 4 weeks, so massaging and soaking is out for now. My head is spinning. I went into this appt expecting one thing and walked out not knowing what to think. My doctor even apologized for giving me bad news.
Leelee go to YouTube and search Pradeep Chopra he is a Dr who specializes in this. He has a video on treatment for CRPS or RSD I learned so much and took it to my Dr. I hope this helps. Also I cried one full day which relieved my pent up stress, it's a journey but I'm determined to get to remission as there is no cure. Take very good care for of yourself,
hugs
jannie
Good , but because the foot needs to move i recommend an air boot. The foot has to come out ASAP to move, breathe, bath, touch it with fabric to desensitize it. Ametrptiline is not enough, ask him about gabbapentin cream with ketamine, I'm off all meds because it of it. I was taking percocet but narcotics feed the disease, basically the nervous system is o n overdrive and needs to be shut off. They think it's an autoimmune Disease. Keep re-searching, never give in.....sending hugs
I will ask him about the cream. He lowered my pain meds, told me only to take them if I had to. He said they don't really work for RSD, so to try not to take them. I am spending my evening researching this, I want to know everything. I ordered that book, should be here in a few days. Until then it is Google and you tube.
I am really sorry this happened to you, but thankful for all of the information.
So sorry. At least you have had response from jannie. This is where this forum comes into its own. Take care and try not to stress. (Easier said than done)
Thanks Gill, this forum is a God send.
Good you got the book, it's so helpful LeeLee, I sometimes wonder If alot of people have this here who are having difficulty beyond the injury. We're going beat this!!! He's right about the pain meds but it's what worked for a time. Take it easy, 🌞
I have been thinking the same thing about others. We are going to beat it! I believe that with all my heart.
I'm so sorry to hear this. Was the bone not healed? Is that why he put another cast on? What kind of pain have you been having? How many weeks since your surgery. Sending you healing thoughts!
Linda, the bone wasn't healed enough to go into a boot yet. It has been 7 weeks since my fall and 6 weeks since surgery. My toes feel like they are freezing, but if you touch them they are very warm. Cramp in the bottom of my foot, pins and needles, burning sensation in my foot and the skin on my foot looks really strange...shiny.
I can see why your head is spinning. Did they say why the bone wasn't healed yet. I took some homeopathics for bone healing called Symphytom. I'm sure most western medicine doctors in the US don't know about them, but they can't hurt. I think I had cast phobia. I cut the first plaster cast off after 5 days and then the fiberglass one after 4 days. When the cast were on I had severe burning. I was very careful and did not bare any weight. I was worried my bone wouldn't heal, but it did in 5 weeks (I had only one fracture with plate and screws). Did they suggest Gabapentin, just wondered if it helps for RSD. I never took any narcotics, only Tylenol and Celebrex for the first week. It is my understanding that NSAIDS hinder bone healing, drugs like Motrin. Also, smoking hinders healing. I'm just trying to think of anything that would help you. I mention my experience with the cast because I feel that if I had left it on I would have had more nerve pain. I had burning nerve pain over the incision and around the outside of the ankle. The skin was red and shiny. It's been 19 weeks and it is much less now. I massaged it, used lidocaine 5% patches, Tylenol, ice, wrapped with ace bandage, elevated it. I was not diagnosed with RSD. My doctor discharged me very early and when I kept telling them it burned they told me to take Gabapentin...I didn't take it. Only, because I'm sensitive to drugs. Wishing you the best.
Hi Leelee
So sorry to hear of your problem. I had no idea such a thing existed. Several years ago I had an auto immune problem which was vasculitis in my legs which ached so much and I found walking so difficult. I was given prednisolone (steroids) to get rid of the inflammation in the blood vessels. It took a long time but did work and I still take a very small dose of steroids to keep me in remission. I wonder if your problem is the result of inflammation too. I thought my old problem might flare up after my ankle break but it hasn't thankfully.
When I had my cast on for 6 weeks I knitted a small toe section of a sock and put it over the bare toes. It kept them warm and I think helped with the blood circulation.
I am making good progress now and am particularly well in the morning but get aching in the foot and leg and use one crutch in the evenings.
Doctors have different ideas about treatment and all we can do is follow what they say and hope it is the right thing to do. Hope you improve and soon feel better.
Sorry to hear about your setback. I hope it helps to know you are not alone, progress is not at the same rate for everyone. Be brave and patient. hard to do this when you normally lead a full active life. I'm sure in due course you will make the next steps to recovery.
Thank you
Thank you
Here's what RSD most likely looks like and I have all the symptoms since being diagnosed
shiny tight skin looks almost like plastic gets worse with swelling and foot down
feels cold but is hot
burning steady pain very unbearable at times
veins look blue and lots of them
stiffness, no flexibility
swelling comes and goes
constant pain pribabky not weight bearing.
what I've learned is they want to get movement ASAP if any type as the "D" in RSD stands for dystrophy and this is what my doctor is trying to get moving so it does not become atrophy. Most people and doctors have not heard of RSD as it is very uncommon and not diagnosed - early diagnosis is the best outcome for recovery but not cured
the best source I found on YouTube is Dr Perdeep Chopra on treatment for RSD also now known as CRPS.
I hope this helps others out there as the key too is the pain is over and above what the injury should present. Also a surgery or injury triggers this disease.
take good care
keep on!