im new with rsd
 

Hi to everyone.
Ive been really upset. I cut my heel on the screen door 6 months ago, the pain even when it healed up kept stinging and ached when i layed in bed with my heel touching the bed. withinn 2months after seeing 3 foot dr's they sent me away. the pain was the same but the redness was blotched over my heel and spreading. I had total hip replacement done 4/13 and then 5 weeks later my whole leg up to the knee is red, shiny, thin skin with some dry scaling over the shin. within 3weks ago the whole leg is terrible,, now within the last week my other leg is turning to look like the other, i get muscle twitching in my arms fingers, leg jerks when lying down. im going to a pain maneger 2moro. i went last week to him and he did a nerve block but nothing happened. he's going to do another block.my legs look terrible, but no pain in them yet. no swelling yet. but they look diseased. blueish red ,smooth thin skin. will this slow down? its spread like poison ivy. will i have good days? will it backoff alittle? what should i avoid? i have tremors in my arms and chest at times , i hope its the meds. neurontin,steroid pack [methyliprednlsolne ]. would appreciate the ibfo. ive been reding your all blogs for 2 weeks, i joined 2day, i trust in GOD and am a GOD fearing man,,but this is killing me in side, im not able to walk due to the THR, it needs to be revised, or theres rsd there. may the Lord help us all. Bobber

Bobber,
I'm truly sorry, for your ills.
You have come to a helpful place! We're not doctors, but fellow sufferers with lots of experience.
Tell us about your doctors?
Tell us whatever you can, it's late now, and you'll be getting lots of hello's and helpful replies.

Go to rsdsa.org and read everything there.

Have you been diagnosed with RSD? Are you seeing a Neurologist?
(Some doctors specialize in blocks, and they may not be the best thing for you).

I'm glad you have Faith. That's what'll get you through this.

Pete

Hi. I am sorry you have to face this too but this is an amazing group that is very helpful and supportive. I was also going to ask you who is treating you? Proper treatment ASAP of this with a person who deals a lot with rsd is very key. I agree about seeing a neuro and also a pain doctor. There are many meds and treatments to get you to a better point. Sending many thoughts to you

thank you for your concern
 

Hi pete
thank you for you concern, I went to a neuro 3 onths ago in the early stages,, being that the nerve entrapment is in the lower back of my heel at the end of the nerve,, the test was normal,,he told me it would be since he knew where the pinch wqas.the break must be higher up on the leg to be positive. i had another block 2day,,still nothing,,no pain in the legs at this time only where the injury site is,,cant lay on it, it blew my mind how fast it can spread,,for 4 months it stayed at the injury site then once it turn bluish spots sppeared then within a wek the whole leg turned red,shineyred blotchey disease looking skin with pit marks with a nasty look, then 10 days after that now its migrated to the left leg. im on neurotin , cortosteroid, and am going to start cmbalta 2moro and alt with zanaflex,,, no idea what they do but i hope God gives me my life back,,,,what im worried about is its been 2months since thr surgery and im still havinghip pain and am still on cruthches ,,too much pain on weightbearing... i hope that rsd didnt go there,,, thats one reason why i op-ed to do it then since i only had a small spot on my heel...i would love to see Gods grace on a remission,,,whats the % rate of that? excuse me too pete for being selfish in this email but its new and scary too me because i was very active to this point playing sports,,,im 48,male but in above average shape.. would love to be able to walk without crutches,,,would help with the rsd,,,, tell me whats going on with you,, and whatever info youve got to throw at me ,,,im in n.m used to to a w.va man till i married,,, but i know p.a nice area... please tell me about your contintion..and thanks for reading this book that i wrote....bobber

thank you
 

Hi daniella
im hoping that my thr was done ok and rsd hasnt gone there,,in still on crutches 2moths out ,,pain on weightbeing,,i had another block 2day and ,,nothing...he is swwitching me to cymbalta and cortosteroid prednisone,,heaavy,,60 mg a day,,,and also wants me to alt the cymbalta every 3 days with zanaflex ....give me a run down on your situation,,it blows my ming that the rsd stay in my back of my heel for 4 months an then in 3 weeks shot up both legs,,,i have no pain in the legs or no swelling,all the pain is centered when i injured it in the heel,,,i can massage it ok with no pain but light pressure from lying suping in bed is unbearable ,,, stinging,,electrical pain when the dr tapped on it it shocked me down the heel into the bottom of the foot,,,,may the Lord bless you,,,i need to hear from angels,,, i hope and pray for a remission for all of us.....bobber

Hi. I hope the meds work but sometimes it takes time and juggling around different ones. Everyone is different with rsd and recovery rates etc are different for everyone. Try to remain hopeful and I hope you feel better soon.

thanks for the note
 

im seeing dr delahoussaye from las cruces n.m for the injections , i was refered bu dr linda dunlap[foot dr] im 6months out and in the last 3 weeks it has went from the back of my heel to up past the knee,,and last week its moved into the left leg,,no pain ,,but thin ashen reddish skin peeling,,,looks horrible and diseased..do the predinisone tabs work,,i dont hear much on them,,neurontin? cymalts? zanaflex,,? ive got all of the above,,, will it soon calm down?/ i know your there for support and arent a dr,,,but to me sometimes exsperience supercedes the dr,s,,,not the first time i had to firgure out what was wrong with me,,bobber

hi bobber and welcome to the group. i have had rsd for 11yrs. and i have it full body and internal.. mine like your spread to all my limbs in 4-5mths. i am also married and have 2 little girls.
yes rsd can go into remission and it is better to have treatment very early on.. yes rsd can get to a manageable state.. and it can just stay bad period. mine goes between manageable and horrible. i have a pump that i had put in 5 yrs ago. because i was having alot of problems with oral meds.

hang in there. i know how hard it is to be a active person then not be able to walk. i used to be a gymnast and ran track that all came to a end fast. this is a great group.. we have a lot of knowledge between us all.

pm me is you ever want to talk

carrie

Hi Bobber,
I'm so sorry you are facing RSD. Please know we are all pulling for you and hope you go into remission. This is a wonderful supportive group with a combination of lots of experience. We all are in different place and react differently to meds, treatment. I agree on getting a very good Dr. I have heard very good things about the Cleveland Clinic with Dr. Schwartzman and another RSD Dr. there. A good neurologist and pain management Dr. is imperative. I've had this 13 years, but I did go into remission twice. Mine came after two benign breast tumors removal. the next day swelling, stabbing pains, frozen shoulder. Sent to physical therapy and after that along with massage therapy for a year, my arm came back nearly full use-remission. Then after about a year-other shoulder froze up=more pt. massage therapy and remission. Another year or two. Was water skiing and felt nerve pull in left hand. discoloration, (circulation is affected) swelling, frozen fingers-pain, sensitive. wrong diagnosis. wrong meds, went to another Dr. in different state, had no idea all along it was rsd from original surgery. Anyway was diagnosed with RSD and got back into therapy and pt. and massage, meds , tens unit. and got partial use of hand. They delay caused crippling of left fingers. Then moved to other hand, arm, one foot, leg, other foot, leg, full body, and internal.
Please read as much as you can. on this forum, old questions, answers. Another forum that I learned so much from was www.rsdrx.com This Dr. is retired now,, but information and answers to what RSD is etc. is excellent.
A little bit on meds-neurotin and or Lyrica are anti-seizure ,meds that help with nerve pain and spasms, jerks, jolts, electric jolts. I was on it for several years and gradually went off. For me, it was the only thing that stopped the spasms, and the full body electric shocks. I no longer have those symptoms. I did gain weight as others have, but am in the process of losing it. I'm on cymbalta, which I like, it's a anti-depressant drug, but works for me with nerve pain. Antii-depressants are a common med for RSD, as they work well for nerve pain. RSD is a sympathetic nervous system disorder, The sym. n. s.
has 3 major fuctions;1. Control of vital signs, (blood pressure,pulse, and respiration), 2. Control of internal environment (temperature control and control of other function of internal environment. 3. Control of the immune system. Many of us have high blood pressure AND low blood pressure-the para sympathetic nervous system makes that go down. I monitor mine nearly dailey as I passed out from a severe drop 60/40 and hospitalized.
A lot of us have excess sweating. Some of us switch between burning up and then turning ice cold. The normal balanced person doesn't have this. I personally feel diet is extremely important. There was a post I believe Friday on anti-imflammatory diet.
RSD affects the Limbic System in your brain and that is why depression affects most of us. Short term memory loss, a grasping for word, forgetting something in the middle of a sentence is common. Insomnia another sympton
Bone loss is part of this. That is one of the tests to confirm RSD. My left hand had a lot of bone loss.
Anxiety is another symptom for many of us.
Many of us have our ways of coping with pain, Distractions thru music, comedy, movies, reading, stretching, exercise, swimming, meditation, prayer, scented candles, really anything calming, our pets, I personally like to call friends that are ill, write cards,
My neurologist is also a psychiatrist and pharmacologist and that has helped me tremendously. The losses that come with such a life altering disorder is something we don't get thru alone. As will any major loss, grief is a process and takes time to grasp and work thru. I personnally like to journal or write my feelings down in a notebook. This disorder is not easy to understand, even by our loved ones so patience with them is important. Some of us have printed out a simple explanation off the interent or an experience by someone and given it to others. The RSDSA has a list of support groups . You can give your zip code and they will give you closest group and phone contact number. We learn a lot from others who have this.
Every year the RSDSA has annual meeting that we can attend. I think it's only $10 or $20 to join and receive quarterly flyers. The annual meeting this year was in my hometown and I enjoyed it very much. They sell DVd's of the meeting. One day is for us and one day is for Drs.
You will have good days or better days than others. Cold weather fronts affect us. Most of us like heating pads. Ice is a no no. Hopefully you can get physical therapy soon and off the crutches. It's important to move our limbs, so they don't freeze up. Desensitation is very important too. I had that in therapy and also did that at home. That's putting our feet and hands, for example thru different textures. like soft cotton balls, sand, coffee grounds, rice, Stay with us and you'll get lot of support and good suggestions.
My husband and daughter son in law and others are supportive. I'm gratefull for that and what I can do. I haven't given up hope of being able to do more in the future. Swimming has been the best for me=kept me on my feet and out of wheelchair.
Take care, your friend, loretta

Dr S is in Philli. I have been to Cleveland Clinic for my rsd and know someone else to that has been there though she has had better results. I have a friend who is on prednisone for peripheral neuropathy and has found it super helpful. I think it is used a lot for auto immune but could be wrong. I am sorry and am confused you have to wait 6 months for the apt? That is so long can you make an apt with someone else till that one or you may not even need it? I really feel asap treatment is key. I wish I could give you an answer to when it will settle or what will happen but I know most docs have no clue either cause we are all so different. You are in my thoughts and please hang in there and try to get through today.

I'm new too!
 

Welcome Bobber,

I am truly sorry you have to deal with this monster. I am discovering so many people out there suffering from CRPS (“RSD”). You will find this forum is awesome and the members really care. This group has helped me learn so much about CRPS, how others are being treated and what medicines are helping or hurting. I hop on several times a day just reading posts and checking out links thirsty for knowledge and comfort. This crazy condition has changed my life completely and has tossed me into a state of mental exhaustion. Finding a way to express myself, share thoughts and concerns with others has helped me a lot.

Here is my story… I hope it doesn’t bore you too much!
I was officially diagnosed with CRPS this past April so I am only a few months into the treatment plan. After exhausting research on RSD and the symptoms, I know now that I have actually had it for over a year (undiagnosed). Original injury to left leg/knee at work in 2006, had a bad fall then re-injured again (at work) in 2007 which required surgery. Leg was never the same and continued to hurt. I asked WC for a second opinion, found a great Ortho who recognized that I had major damage to my meniscus and had to perform two different surgeries to try and repair (still need one more but is out of the question until RSD calms down). We didn’t recognize the RSD symptoms early on because the pain I was in was typical of the injury and surgery. However, three months after my last surgery, he began to recognize the RSD symptoms (cold foot and molten color leg) and sent me to a Pain Specialist to begin an aggressive treatment plan. The cool part is my Ortho actually sought out a seminar to go to so he could learn more about CRPS; he wanted to be better educated and able to treat me properly. So off I went to Pain Specialists, who discovered that I have nerve damage too which has changed the game plan again!

I am currently taking the following medications and supplements;
Effexor XR 75mg - Anxiety
Lyrica 400mg - Burning pain
Talwin NX – Pain (Only when absolutely necessary)
Vitamin C – 1000mg
Omega 3 Supplement
Whole Vegetable based Multi Vitamin

I have had two nerve blocks so far with minor relief - both have lasted about 5/6 hours. I will have another one next week (Wed) which will be the last one unless it works longer. Then they are going to plan B (Not sure what that will be yet). This last nerve block set off my knee and I had to have cortisone injection in bursa area of knee to try and get it to calm down. Helped a lot!

I suffer from entire leg freezing cold, knee stays hot with fever. Depending on how much I try and walk (one crutch) or use my leg will depend on how bad it swells and acts out. Leg stays molten color and toes are purple and numb most of the time. When I am able to put pressure on leg it feels like I am walking on rocks. My hair doesn’t really grow on my leg and toe nails don’t grow. I suffer from varying sensations from electrical shocks, vibrating feeling, twitching and spasms. Leg is always burning. Lower back and hip are now acting up now. Vision and hearing have also been affected. Sleep is interrupted. I could go on and on…

I do therapy at home everyday – ride stationary bike for knee and do exercises for strengthening. I am waiting on my TENS machine and hopefully will start Aqua Therapy soon. I can’t drive because my vision is fuzzy and my coordination & reaction level has been affected. Work is out of the question due too many factors - So far my employer and Work Comp have been great and are helping in my recovery.

I am still struggling with coming to terms with this diagnosis and what it means for the future. I went from a workaholic (loved my job), Mama to everyone, volunteered for everything, and gardened like crazy (love the sun) to a 42 yr old lady who wakes up each morning wondering… What will I be able to handle doing today? How hard will the pain be today? Will I be able to walk today? Will my leg ever stop hurting? Will this ever go away? Each day brings a new set of challenges both physically and mentally. Questions… Doubts… and Fear!

I am so fortunate to have such great family support and love, good doctors that listen and care. I pray for strength and guidance and try not to question why me, because I know there is a reason I have been given this challenge. I just ask for healing and will keep my faith knowing that God is in control. I fight the urge to be bitter or angry for what I am experiencing, because it will only allow doubt to shadow my faith.

My heart goes out to all those who suffer from this horrible monster. I know that there are others that are in far more pain and discomfort than I am, and those who have lost far more than I have. I am determined to learn all I can about this condition and be an advocate for those who suffer from CRPS / RSD.

My advice to you is learn all you can about your injury and RSD so you can work with your doctors on a succesful recovery plan. Make sure you get a good support group around you so you will stay in a good place mentally. I hope you find relief and comfort soon and I wish you the best in your fight to overcome this monster. Feel free to PM anytime if I can be of any help or if you just need an ear to bend.

I would urge you to be really, really careful with that sentiment. WC has screwed many of us over and over. If you don't have a lawyer you may want to consider getting one.

I was injured in Nov 2006, 31.5 months ago. WC has made my life a living hell since my diagnosis with RSD. They weren't that bad before that.

The best of luck to you, Sandy

thank you for your concern
 

Daniela
thank you for your concern,,i dont have to 6months for apt,,that was the time since ive had rsd. im going to a nero and having nerve blocks but they dont help....what meds are you on and what seems to help,,,did you use prednasone? and how long have you been ill, bobber

thank you
 

Aj
When was you knee surgery? Are you able to walk on it any better? my concern with me is that i had thr surgery on 4/13,,,im not able to walk on it,,that isnt mormal,,i should be able to walk without pain at 3 weeks,,,i have bad hip and groin pain that means either a have a loose cup in the hip or rsd is there and has migarded from the heel. im supposed to have a revision of the hip in 6 weeks,,,but im afraid it will be worse. im hoping i can walk before then,, everyone who has had a thr total hip replacement they, donthave pain at all after ward . i have pain on weight bearing,,,keep me in prayer and i will do the same,,,God wil heal us,,,and your right,,,when i get resentfull and bitter and angry with God,,,and thats not my demeanor,,,I love God but the devil is poking at me with this,,,im a farm bot who is used to not missing work, and working and playing sports on a injury,,,,you know what i mean,,,if you break a bone ,you cast it ,then 6 weeks later your ok,,,this is still growing like cancer,, so thats why i wigged out,,,and your right,,,it has hammered my faith with doubt,,,and why me symdrome,,,,,Ive got to get a grip ,,it wouldnt be so bad dealing with it if i could walk unasisited,,, then i could deal with it better... but crutching around makes the legs pool up with blood..i had 2 nerve blocks done in the last 2 weeks and they didnt help,,,theres a difference between smp and sip,,,,smp will respond to blocks but sip will not..... aj,,, thank you ,,and continue to write when you can,,,,and i will pray for you,,,Gods word says in james 5 pray for the healing of others so you may be healed,,,,God has made you strong psalms 41:1-4 reminds me of your letter,,,,my hope also is in 1st peter chapter 4 and chapter 5,,,Please read these,,,youll see the encouragement God has given me,,,,,,,,bobber

thank you
 

Daniella
im trying to cope with whats going on,,,i pray that God will heal us all,,,you are in my prayers,,what are you taking,,whats works for you,,how long,,and how much of it do you have,,,, write me when you can,,,,,,bobber

thanks
 

Aj
Did any blocks help you? i had 2 in the last 3 weeks,,,nothing,,, changing my diets the toughest,,,i was active,,when your as active as i was,,,you can eat anything and whatever as much and my stomach stayed flat,,i have a garbage can foe a stomach,,,i love to eat,,,but im going to have to curb the 4f diet,,,keep writing me,,,,,,bobber

thank you for your concern
 

Loretta
thank you for the info..im trying to desenstivethe main affected area with silicone rubber that the dr gave me,,it keeps friction on it,,,im also waiting on the tens unit,,,getting one of those is like pulling hens teeth,,,,they dont call back,,,my diet stinks,,,i love to eat ,,i was in pretty good shape,,i was very active,,,when you find a aerobic exercise and and enjoy it,,,mine was racquetball...i stayed in shape and had the body of a 20yr old andim 48.. flat stomach and didnt have to do crunches,,i i have a gabage can for a stomach,,love to eat alot ,,and sweets are going to be the ruin ffor me with this condition... i pray for you and the others for a remission,,,, let me continue to hear from you,,,all letters help,,,and all it takes is that one little scrap of piece of information to heal,,,,much love and hope in the Lord,,,,bobber

Daniela, it is my understanding that prednisone is not recommended for people with RSD because of the risk of osteoporosis with this condition.

Prednisone is known to cause brittle bones and fractures in people with strong bones.

MsL

Bobber, I sent you a (sorry, lengthy) PM.
You're right, this monster is an "Open Door" for the Devil, to walk in and corrupt our faith!!
While I"m very sorry that you have this corruptor, you make a welcome addition to this group. Your faith is very stimulating.
We'll talk more, soon...

Pete
Asb