RSD

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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.

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  • Posted

    Just keep thinking positive and the next few weeks will fly by. 

    What exactly is Rsd? I haven't heard of it

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    • Posted

      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.

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    • Posted

      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 

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    • Posted

      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)
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  • Posted

    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 👣

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    • Posted

      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.
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    • Posted

      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 
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    • Posted

      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.

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    • Posted

      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, 🌞
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    • Posted

      I have been thinking the same thing about others. We are going to beat it! I believe that with all my heart.
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    • Posted

      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!
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    • Posted

      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.
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    • Posted

      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.
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    • Posted

      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! 

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    • Posted

      Most definitely, knowledge is always good. How is your ankle doing now? I read that RSD can go into remission, is that what you have found? How is physical therapy?
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    • Posted

      I'm not in remission YET but I'm going to........pt is hard, I'm working it everyday between water, massage, bike, walker, physio and flexing and rubbing with fabrics, rolling foot (seated) on ball of wool. It still looks shiny but at nite and first thing in morning it's looking more natural. I still can flex back its at 15% so ways to go.  I gotta tell you since starting gabba/ketamine cream and LDN one week ago things are starting to shift for the better. Research LDN, it's a game changer for me with my mood.  I'm determined to get this licked, are you walking ?  How is your pain?  What does your foot feel like?  Sorry for all the questions but I keep track of my sensations to see if I can notice improvement. Keep on, we're going get there.......👣
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    • Posted

      Still in a cast, so no walking yet. Started the new med last night, it has made me really tired. Pain is still pretty intense, doctor said it would take about 10 days for the meds to start helping. I only saw my foot briefly when they switched out the casts, but it almost looked fake. It didn't look like my foot at all.. I don't mind the questions, it is nice to talk to someone who understands all of this. WE WILL BEAT THIS!
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    • Posted

      I'm not walking either so that's the big hurdle but if your still in cast not much you can do, but are you in physio for leg strengthening?  I'd ask my Dr about the cream, 10 days is too long to wait for relief. I'm off all meds now and was taking daily, im also a believer in the LDN but then it's working for me so I can support its use.  Keep researching, resting, eating well and try and have some fun in there too.....take good care...
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