[bobber]

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

[AintSoBad]

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

[daniella]

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

[bobber]

Originally Posted by AintSoBad

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 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

[bobber]

Originally Posted by daniella

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 istreating 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

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

[daniella]

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.

[bobber]

Originally Posted by daniella

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

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

[angelrsd]

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

[loretta]

Originally Posted by bobber

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

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

[daniella]

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.