Hi Gymjunkie and Welcome to our group of compassionate and caring people.
I'm so sorry you have this RSD. I had not even heard of it 12 years ago. I had breast surgery-two benign tumors- I woke up next day with swollen arm. then my shoulder froze up. My Dr. sent me to Rehap Specialist. I had 100 treatments to get the use of my shoulder/arm back. Also had an hour of massage, that I paid for before the torture hour. Shortly after, the other shoulder froze up and again therapy. Then the left hand froze up while water skiing, no use of fingers at all. Was told I had rheumatoid arthritis. Flew from Arizona back to Oregon to a sports injury group. The Hand Dr. said RSD in 30 seconds. More therapy and desensitizing. It's amazing how many Drs. that have never heard of RSD. I, like yourself ,was very active, Tennis, Swimming 3 times a week, club work out, snow skiing, 10 K 1/2 marathon, horseback, That part of my life has been shattered.Now full body, and yes I have spasms, jerks, electric jolts from sound sleep to jerking my head right off the pillow. It's the meds that put that under control. My Dr. is a Psychiatrist,Neurologist, and degree in Pharmacology.It was the neurotin that controled the spasms and now switched to to Lyrica. For me, the Lyrica worked better on the pain. They are both anti-seizure meds. Both cause weight gain. I have always read and heard on this forum, the best chance of remission are the blocks before the first year anniversary. I didn't have any, because of being misdiagnosed for so many years. The anti-depressants do work on nerve pain. Because RSD is an autonomic disorder, it affects circulation, and blood pressure high and low. I've had some heart involvement. Recently someone wrote about a ketamine combination compounding cream to rub on the burning feet. My Dr. asked me this week, to fax him the information. I'm going to try it. I also have the cold, deep bone pain. I stretch and exercise every day. Swimming toe exercises actually changed my curling toes to go back in the right position. My arms are twisting now. Working hard to get the weight gained back off. Do you have trouble sleeping? Most of us do. It's miserable not being able to get to sleep, even with ambien cr. I think the anti-anxiety pill helps keep me calmer. It's hard with 24/7 nerve pain. I get very bad headaches. Also have trigeminal nerve pain on my left temple. Do you get skin rashes or red dots??
I'm so sorry again about your paralysis, you sound very strong and determined to make the best of your situation, but not giving up. I'm wondering too, if you have something in addition causing the paralysis? I know a lot of us end up in a wheelchair with whole body RSD or lower body. Anyway, I wish the best for you. I'm married-40 years , my hubby does a lot around the house, Our daughter is married 8 years, and moved to Chicago a year ago. She comes every two weeks and works 2-3 days and helps with the house. We live in Arizona. I think Oregon, where we moved from, would be difficult with the cold and rain. Take care, Loretta

Hi! I am new to your board. It was recommended to me by a friend. I was diagnosed with RSD about 1 1/2 years ago after a year of misdiagnosis. But the doctors think I have had RSD in mild form for 18 years since I crushed my hand in an industrial accident. But a simple carpal tunnel surgery & ligament repair surgery in April of 2006 started what has been a very hard two & 1/2 years. I am now completely disabled. I had a very active full time job with one of the top delivery companies as a courier and now am home. I miss my job terribly. My son who I am very close to also left for college last year which was so hard. I had a SCS implanted a few monthes ago. It helps but has not been the answer I had hoped for.I tried blocks but they brought no help & horrible side effects. I live in a rural area so there werent a great deal of options open to me here even though I have a great general practitonier who diganosed me first. And the pain specialist I have now is a good doctor. My husband & I were married for nineteen years but had to get divorced to protect him & our home from my medical bills. We are still together but just not married on paper anymore. Getting divorced was one of the hardest things I have ever done. But it was neccessary. For my birthday he gave me an engagment ring & got down on one knee & everything & asked me to marry him again. SO I didnt have to say we were divorced anymore but engaged even if its a "very" long engagement. I can't wait to get to know everyone. Hope you are having a good week of low pain days.
Denny

Hi Denny and Hubby, and welcome even though it's a RSD family. I have found so much good education and coping skills here. Compassion from everyone- we are all in the same boat. I can understand why it's difficult for family and friends to really know what we go thru. Boy do I understand our children moving away. Our daughter and son in law moved away 1 year ago today. From Phoenix, to Chicago. We miss them so much. I've been up once, but my husband hasn't been up yet. Our daughter keept her job here, an independent court reporter whose firm let's her maker her own schedule. So she flys home every other week. Stays 4-8 days. Her husband comes when he has 3 or 4 days off. That's been so wonderful. They both help me with the house as does my husband. Do you care to share any more details on your scs- what you like and your disappointments? That's interesting about the 18 year diagnoses- Mine was was diagnosed about 5 years later. now total of 12 years and full body. I'm have terrible time sleeping at night from pain and headaches, have trigeminal nerve pain in left temple and now I'm sure the rsd is in my left eye. Incredible pain. I'll call my Dr. tomorrow.Do you live in warm
climate or cold? /what school is you son going to? Does he know yet what he wants to major in? That sweet your hubby was so sensitive. Wow a new engagement ring Last week I tried to get disability but was turned down as We have had our own business for 40 years and I lack 10 credits. We have asked our accountant if we can fix that and qualify. I'm on a group policy with our company. Otherwise , wouldn't qualify.Do you have the one son or more children, we just have our daughter.

I am really sorry you can't work now, and you loved it so much. I did too.
We have a coffee business. We have drivers and trucks and deliver to businesses and car dealerships, all kinds of business where they want to provide for employees and customers. I used to meet with new clients and show them catalogs of equipment to choose from and different coffee samples.I liked meeting with people, everyone loves coffee. We provide Starbucks, seattle's best, all kinds and also vending machines that provide one cup at a time bean coffee and mochas, latte's etc. With the economy, even business's are cutting back. Hope the best and glad you like your Drs.
that can be a challenge. I like mine too, see him once a month. Take care,
Loretta

Loretta, Its so nice to meet you. Thank you for making me feel so welcome. I only have the one son. He is a driven young man. He goes to Oregon State University. He just changed his major from mechanical engineering to political science with a minor in engineering. He is an Air Force ROTC Cadet. He wants to spend his life in the Air Force serving his country with a goal of being a general one day. You are lucky to still see your children so often. Even though my son is only 2 1/2 -3 hours away I go monthes without seeing him. He has a great deal of commitments because of ROTC. But I am very proud. If not a little scared. I like my SCS & it helps my pain level on a day to day basis. It doesnt help a lot during a flare. It however did not help as much as I though it would & did not give me my life back like I though it would either. I thought it would cut my pain by 50% or so & I could go back to work.Not in my pevious job (it was a high energy & physically demanding job) but I thought I could get a college education & become a teacher. But my pain level on a good day was only cut by about 20%. More than anything it takes the edge off and helps me keep my sanity. I have beeen in a bad flare for 3 week or more and am jst now coming off it. The SCS barely helped but at the same time I didnt want to turn it off to take a shower or drive anywhere. I am so sorry you are in so much pain & I hope your doctors can help. I have heard RSD in the eyes is awful. I have friends who have it full body & that scares me to death. I just went to my pain doc yesterday & I am not very happy with him right now. It is the first time that I have felt no convidence in him & that he has given up in helping me. I think I am taking his control over my pain meds away from him and giving them back to my general practioner doc. I am closer to him & feel like he takes better care of me. I live in the high desert of centeral Oregon. SO I have both warm & cold climate. We have a distinct 4 seasons. I am not looking forward to winter. It is my worst time. The snow and ice & cold are not my friend. I dont know if I missed anything else you wanted to know. If I did just ask me again. I am sorry. It was really nice to meet you. Please let me know what your doctor said. And take care.
hugs,
Denny

Hi Denny, Thanks for writing back. There are many Drs. that really don't like to be involved with RSD patients. Sounds like your G.P. Dr. is compassionate. My father was in the Air Force here in AZ. That's where he met my mother. He was a pilot. My son-in-law just finished his first year as a commercial pilot. That's why they moved to Chicago. Yes, we are so happy they come 'home' so often. Our daughter and myself were born in Eugene, not far from Corvallis as you know. We loved to ski at Mt. Bachelor and for about 17 years we spent 10 days at the Cove, Lake Billy Chinook. water skiing and my husband loved to fish. There were about 4-5 families that went every year. I love Bend, Sisters, and Sun River. I know what you mean about the cold not being our friend. If you swim, it's important the water is at least 86 degrees. In the winter, I use heating pad and bean bag in the micro. I have called my Dr. yet since he changed a couple meds.Loretta

Hi everyone, This is my very long RSD Story - I need to update it but thought I would post it. I am thinking about putting my story into a book to try and help raise awareness about RSD.

My RSD Journey.

It’s hard to believe that just over a year ago I was a normal 12 year old: I went to school, had good grades, went shopping, had fun and did all of the usual things that a normal 12 year old would do.

Then on the 20th March 2007 all of this changed when I fell down some steps outside my moms work and sprained my left ankle. My ankle was painful but both me and my mom thought that it was just a normal ankle sprain and that it would be better within a few days – we couldn’t have been more wrong!!

Over the next few days instead of getting better my ankle gradually got worse and the slightest touch had me crying in pain. Knowing that something wasn’t quite right, my mom took me to ER, where they X-Rayed my ankle, told me that I hadn’t fractured any bones and that I should rest, elevate and ice my ankle over the next few days.

I didn’t think things could get any worse but they did, so my mom took me back to ER for a second opinion. Once again we were told that there was nothing to worry about, but that I may benefit from some Physical Therapy. This visit was to be my first of many experiences of the lack of belief and mistrust, some health professionals have in RSD patients.

Not only was I told that I needed some Physical Therapy, but that I should get my act together, stop dwelling on the pain and if I did that my ankle would get better.

By the time I had my Physical Therapy assessment the following week, my foot had begun to rotate out from the ankle and the slightest touch to the area round the ankle bone caused me excruciating pain. I was told that I had probably torn a ligament, given crutches to help me to bear less weight through the ankle until the tear had fully healed.

The following week I went on vacation with my parents to Spain and managed to increase my walking distance although the pain never went away. Unfortunately on the last night someone knocked into my ankle and I spent the rest of the night crying and in agony.

Over the next month I had twice weekly Physical Therapy but despite this the rotation in my ankle became fixed, the area of pain increased and walking became more difficult.

Eventually it was decided that something had to be done to stop the rotation so the PT's contacted ER to ask them to arrange for my leg to be placed into a cast to try and correct the rotation.

Even though the cast was supposed to remain in place for 2 weeks I had to have it removed after 4 days, my ankle and my foot were trying to rotate within the cast and I was unable to do anything because of the pain.

Until this time I had somehow being able to go to school in between hospital appointments but over the next few weeks I often had to come home due to the pain or couldn’t make it to school in the first place.

As the cast had being unsuccessful an MRI scan was ordered but I was told that I may have to wait 3 months for this to be done, so I was referred back to Physical Therapy. It was this time that the PT's first mentioned that I may be at risk of developing RSD. From what I understand now there is no such thing as being at risk of developing RSD and that I actually already had it and already had done from the very point in time when the injury had occurred.

I had regular Hydrotherapy sessions without success and despite the junior Physical Therapist still questioning RSD she was over ruled by her senior who believed that I was making up the whole thing because I was having problems either at home or at school.

The very last Hydrotherapy session I had consisted of 2 PT's cornering me in the pool and proceeding to attempt to prove that I was making the whole thing up and asking me to admit that I was lying about the whole thing.

Knowing that the MRI scan was still weeks away my mom asked for a second opinion and we were referred to one of the Orthopaedic Doctors.

At first he too believed that there was some psychological reason as to why all of this was happening. Fortunately a couple of nights previously my mom had noticed a slight spasm in the muscles in my lower leg so she asked the doctor to check it out.

It was almost as though a light had gone on, he suddenly realised there was something physically wrong and mentioned that there may be some nerve damage. As he had never seen this before he needed his boss to check it out.

The following week we were back again to see his boss, who despite telling him that the spasms, pain and deformity were in my ankle, he examined my hip instead almost dislocating it in the process, suggested placing me on a waiting list to have a full leg cast put on for around 6 weeks and also suggested that I may benefit from seeing a Pain Management Doctor. Whilst I was on the waiting list it was also suggested that I see my own GP whole would prescribe me some pain medications.

My GP took one look at my foot, picked up the phone, spoke to the Orthopaedic team and demanded that they saw me the same day and began running some tests to find out what he was actually prescribing the medications for.

An hour later I was back in ER and tests were being run. The doctor there couldn’t believe I had not being admitted previously and immediately sought to secure me a bed.

Unfortunately for me, he also asked the duty Physical Therapist to take a look at my foot. Once again I was told there was no reason why I needed an admission and that PT was the best way forward in my case.

I felt at the time that I was a hamster on a wheel, going round in circles but never getting anywhere. Despite the best efforts of the doctors, the PT's were once again calling the shots!!

By now I had been in pain for 3 and a half months, my walking was slow, my ankle was permanently rotated and I hadn’t been able to attend school for a number of weeks.

My mom called the pain team at our local children’s hospital but was told that it may be another 3 months before they could see me.

On June 30th I went to visit my grandma. The effort of walking the 20 metres to her house left me physically and emotionally shattered so instead of going home my mom drove me to the ER nearest her house.

The doctor’s took one look at me and ordered X-Rays. When they came back clear they admitted me for further tests as they sensed something was very wrong. As scary as this was, I was relieved that finally someone was taking my pain seriously, but I was also sceptical that I wouldn’t get any closer to knowing what was wrong.

A couple of days later the Senior Orthopaedic Consultant came to ask us if we would attend his team meeting where a discussion of my case would take place.

I found myself in a room with around 10-15 doctors who discussed my case with me and my mom, and carried out a full physical assessment.

They told me that they suspected I had RSD but none of them had ever seen a case before, so they had made arrangements for me to be transferred to our local Children’s Hospital.

Less than 4 hours later on the 3rd July I was seen by the Pain Management Consultant at the Children’s Hospital, the very person I would have to wait 3 months to see.

The PM consultant discussed my history, arranged an MRI scan which ruled out any other problems and diagnosed me with RSD (Reflex Sympathetic Dystrophy). Finally I knew what was wrong, and although he could make no promises as to how long my path to recovery would take, or how many twists and turns there would be along the way, I had someone who believed my pain was real and there was a reason for the rotation in my ankle.

The following day, 4th July, he arranged to do a bier block which could possibly reduce my pain for the first time in months.

Looking back now it is ironic that Independence Day 2007 would be a defining moment in my battle to regain my independence. I like to call 4th July “Loss of Independence Day”. For some reason the nerve block didn’t have the desired effect and instead of reducing my pain the block caused me to develop balance and coordination problems, leaving me in a wheelchair.

The hospital had never seen this before and believed it may be a temporary complication which would wear off once the drugs began to leave my system.

I was allowed to go home for the weekend and it was then that the reality of the situation hit me. I couldn’t walk, couldn’t climb the stairs to the bathroom or bed and had to rely on my mom taking me everywhere.

When I went back to hospital on Monday morning, the consultant was amazed that the problems persisted and referred me to the Physical Therapists and Psychologist’s attached to his team and prescribed new medications.

I had never had a good relationship with Physical Therapist's in the past and the new ones would prove no different.

The PT's believed that because they had never seen RSD present with movement disorders before they didn’t believe they were linked directly to my RSD. I remember one of the first comments made by my Physical Therapist was “It’s not that you can’t walk, it’s that you don’t want to!”

Can you imagine how upsetting it is to be told that you can control your legs, when despite your best efforts your RSD leg shoots out in front of you throwing you off your balance and onto the floor?

At the same time, the spasms in my leg, which were previously like a heartbeat or pulse around my ankle changed to become a violent twitching and jerking of my big toe, which happened at regular intervals throughout the day. Already self-conscious about being in a wheelchair, people would now stop and stare at my toe and I became more withdrawn and isolated as a result.

During July and August PT made no impact on my balance and coordination and any attempts at desensitisation were impossible as no amount of medication would begin to take the pain away enough to make touching my leg bearable.

Finally the consultant began to wonder if the Gabapentin prescribed at the time of the block was causing the new complications and arranged to change me over onto Amitriptyline.

Yet again my body reacted to the new drug, my pupils became fixed and dilated and I was unable to focus. I wanted to remain as independent as possible and despite pleas from my mom to let her help me I attempted to get myself out of the bath tub. I reached for the side of the bath to lift myself out and before I realised that I hadn’t gripped anything due to my inability to focus, I had slipped, my arm went underneath me and I fell with the whole of my weight landing on top of my arm.

Within a matter of hours my arm was bruised, swollen and had begun to close into a fist.

As it was the weekend I went to my local ER and as luck would have it the consultant who first suspected RSD was there.

He immediately believed this was linked to the original injury and wrote to my PM consultant asking him to assess my new injury.

A few days later I received the news that I was dreading, - my RSD had spread to my right arm.

In an attempt to reverse the effects of the fall I was taken off the Amitriptyline and put on Lyrica, and booked in for further Physical Therapy, this time concentrating on my arm.

Yet again, the trust I had in PT’s was brought into question when despite the PM consultant insisting I had RSD in my arm, the PT overruled this stating that the way my hand had become locked into a fist was a protective mechanism and not linked to RSD at all.

Three months later, and despite weekly Physical Therapy, I was suffering complications due to my finger nails growing and digging into my palm, so it was suggested that I was taken to the Operating Room where my hand would be cleaned, the nails cut and a splint would be used to attempt to keep the hand open.

In the Operating Room the splint was made and moulded to the shape of my hand. I was given morphine as the doctor knew that my hand would attempt to re-close and return into a fist.

By the time I was returned to the ward it became apparent that splinting may not be the answer as the ends of my fingers had began to curl up inside the confines of the splint.

By the following morning my hand had somehow managed to reform a fist and I was in a lot of pain as the morphine was ineffective.

The splint was removed and I was discharged later the same day whilst the staff at the hospital rethought their options.

During the month following the spread to my arm, my leg was sort of forgotten with all efforts being concentrated on trying to reverse the most recent injury.

My walking was still extremely unstable and my mom was having to support me along with crutches to prevent me from falling. I had also developed severe swelling in my leg and was readmitted to hospital as the doctors needed to be sure my circulation was not affected and there was no underlying conditions other than my RSD.

Using crutches wasn’t easy with my hand forming a first but we did notice that if I applied downward pressure I could somehow open my thumb enough to get a loose grip on the handles. This gave me an idea that I could begin to work on things at home.

I started by forcing a thick marker pen into the gap between my thumb at first and trying to write. We also got a new puppy and I used to stroke him with my RSD hand.

We watched in amazement as each day my fist began to uncurl a little bit more until a week later, although curled into a loose fist, I could open my fingers when needed and grip a normal pen and write. Finally something seemed to be going my way and I began to believe I could regain control of my body despite being unable to control the pain I was in. By now I hadn’t been to school for six months and I agreed to try and return on a part time basis.

Unfortunately the layout of the school meant wheelchair access was difficult and I had to transfer outside the building if I needed the toilet and work in the library as I couldn’t gain access to many of my classrooms.

The physical effort of getting ready and travelling to school would increase my pain to the point that it was almost impossible for me to concentrate on my studies.

Eventually I was offered home tuition but it would take another two months to organise.

Just before Christmas my mom had to go and do some shopping for presents for the family and as the bad weather was increasing my pain levels I agreed to stay at home.

I spent some of the time on my laptop and then decided to get back onto my bed and rest. I somehow managed to bang my arm on the corner of the desk during transfer to the bed and by the time my mom returned home around 30 minutes later the whole of my lower arm had swollen to twice it’s normal size and my hand was trying to close back into a fist.

The last thing I wanted was to lose my grip again so despite the pain I began to work through some of the exercises I had done previously and managed to keep my hand open throughout this most recent flare.

I wasn’t due Physical Therapy and had no doctors appointments booked due to the Christmas break so my mom emailed a photo of my hand through to the doctor’s office.

We received a call by return and were asked to come to the hospital the following day.

The doctor, PT's and nurse examined my arm and my PM consultant confirmed another flare of the RSD in my arm. I distinctly remember the look on my PT’s face when I explained that she had told me I had never had RSD in my arm, it was just my body’s way of protecting me after an injury due to the fear of my RSD spreading.

My doctor told her this was a clear cut case of RSD and there was no way I was either consciously or subconsciously controlling the way in which my arm was reacting.

It was also explained to me that my nerves were so “wound up” at the moment that if a slight knock could cause such a reaction in my arm, then it was equally possibly that the nerve block all those months earlier could have caused a reaction resulting in my loss of balance and coordination.

Despite agreeing with the diagnosis, we felt that it was now time to seek a second opinion, particularly with a view to treatment options, and my PM consultant agreed to look into where else we could go in the UK that would have seen the sort of dystonic RSD I was experiencing.

The problem was in the UK that although RSD is predominantly an adult illness our medical system directed that given my age I had to be treated at a children’s hospital. Eventually it was decided that I be transferred onto Great Ormond Street Hospital in London, the leading children’s facility in the country.

Whilst waiting for an appointment to go there my medications were increased and I continued to have regular Physical Therapy sessions. My relationship with the PT’s had never been good and this wasn’t about to change now. I found that they often made remarks which were never quantified, the latest one being “If your house was on fire and you were upstairs alone, do you think you could get out unaided?” The realisation that I probably couldn’t upset me to the point at which I became extremely agitated and although the intention of the statement had been to ensure I was safe and secure in my home, the fact that no one had ever explained this and the PT’s seemed to persist in their belief that I was somehow responsible for the situation I found myself in was unbearable.

I already had had terrible experiences with PT’s over the past year and nothing was about to change any time soon, though my mom demanded that any remarks made in future be explained fully as they could often be misinterpreted.

Before I went to London another, seemingly small problem arose, I developed an ingrown toenail on the big toe of my RSD foot. As the toe was now spasming almost constantly, and due to the pain and hypersensitivity in my foot and lower leg it was agreed that it would be removed in the Operating Room whilst I was asleep in early April.

Whilst waiting for this procedure, I made the journey to London to see my new PM consultant who confirmed the diagnosis of RSD with the added complications of Dystonia and movement disorders and suggested that I may benefit from a full assessment with a view to being offered a place on their rehabilitation program. As I was aware of the success of the program within the United States I began to feel more optimistic about the future.

On 2nd April I returned to hospital for the operation to remove my ingrown toenail.

It was agreed that I would stay in hospital overnight and be connected to a PCP (Patient Controlled Analgesic) to try and control any increase in pain following the procedure.

When I came round in recovery I noticed I was keeping the staff amused as the minute I regained consciousness my big toe began spasming continually and more violently than before. My PM consultant came to see me in recovery and said he thought things would settle back into the cycle of intermittent spasms within a few hours – how wrong could he be.

Overnight the PCP did nothing to decrease my pain and the ring block in my toe was wearing off making things even more painful. Around mid morning we noticed my whole leg starting to shake ever so slightly and within an hour it was thrashing around wildly for one minute out of every three.

My PM consultant tried Diazepam to stem the shaking but again this proved ineffective though he still suspected the shaking would resolve itself. It was agreed that I be discharged and return the following day for the dressings changing.

When I returned the following day it took 2 nurses and my mom to hold me leg in an attempt to redress the toe. My PMC stood watching in amazement and admitted he had never seen RSD presenting like this before.

Over the next few weeks a number of attempts were made to control the movements in my leg with drugs but despite this and despite the fact that the toe was almost fully healed the shaking persisted.

Walking was becoming even more problematic. I already needed the help of my mom and my crutches but now I had the added complication of timing transfers so they did not coincide with the shaking which could potentially throw me onto the floor.

I returned to Great Ormond Street Hospital for my PT assessment in May. The lead practitioner there explained that although she had seen over 100 cases of children with RSD mine was only the second case she had seen with these types of movement disorders and I also had the added complication of the Dystonia as well.

Even though it sounded as if the odds were stacked against me she explained that she had manage to regain varying levels of function and mobility in all but a few very small number of the children she had treated and that if I was willing to put 101% into the rehabilitation program she was hopeful that it would prove to be a turning point in my battle against RSD. By this point I was ready to try anything, however difficult, to regain control over my leg in the same way I had recovered from the two flares in my arm. Despite being told that it would be the hardest thing I would ever do I was actually looking forward to it and hoping the eight weeks before I started the program would pass quickly.

Great Ormond Street Hospital spoke to the PT's at my local hospital about my RSD and the way in with it should be handled and the change in attitude was amazing.

Where I had always been reassured that they had seen several people with my particular complications, the staff now admitted that this was not the case and that basically as they had never seen movement disorders to this degree they had no way of knowing how to treat them.

With support from GOSH they began targeting exercises which would be reinforced during my stay in London and were aimed at reintroducing weight bearing in an attempt to control the spasms.

Despite knowing that my best chance of remission lay with the rehabilitation program I was also reffered to a neurologist who would assess the movement disorders and look at treatment options should the rehabilitation program not prove to be as successful as it was hoped.

A year to the day since I last walked I went to see a Neurologist about my movement disorders.

I didn’t remember him but it turned out he was involved in the initial diagnosis and was surprised to see how much worse things were than in July last year.

He and my Pain Management Doctor are currently involved in writing a paper and conducting a study into movement disorders in children with RSD.

Although the numbers studied are small, it is hoped that the paper will be well received as it is one of the first to specialise in childhood RSD with the complications I suffer from.

Whilst the nine other cases studied happened up to 15 years ago and long term follow ups have not been made, they have asked that my case being the worse movement disorders they have seen to date will form the basis to take this study further and allow regular analysis of treatment and the progression of the illness over a long term period.

Although the study only followed patients for a maximum of 3 years after diagnosis it is apparent that early diagnosis is essential if a successful outcome is to be achieved.

A reduction in tremors has been seen in half of those seen so far but very few have had a full resolution of the problem.

I was advised that Physical Therapy would be the best treatment option as it has no side effects and I do not tolerate medications very well.

If the PT results in a partial reduction in the tremors and Dystonia my Neurologist will then prescribe medications which will hopefully stem the spasms even more and hopefully bring on my best chance of remission.

Hopefully the Physical Therapy program will lead to a full remission and my story will bring hope to others.

Ali, I thought I was young to be going through this but I am old enough to be your mother (I am 38). You have been through so much Kiddo & you still seem to have such a positive outlook. Your Mom must be so proud of you. I can't even begin to imagine how hard this must be for a person your age. I hope the new program is successful & you find remission. Remember that it happens most for those that are young & that are treated aggressively & it sounds like you & your Mom have fought hard to find that treatment. It sounds like the UK is no different than the US though in finding doctors that even believe in the pain associated with RSD. Finding good doctors is certainely the key. I am sorry your pt specialists have been horrid. I have heard that over & over again. I haven't had problems myself except that they hurt me but through really no fault of theirs. First it was because I wasnt yet diagnosised with RSD & then it was because they were trying things that were just flaring me up so bad I couldn't take it. They finally just gave up & said they were doing more harm then good. But I have heard stories like yours from people over here too hun. I don't think it is just your age. Part of it at least is our disease not being recognized y the medical community as a whole. Keep you positive attitutude because you are truly an inspiration whether you mean to be or not. It is truly my honor to meet you though I wish in heart of hearts that I it hadn't been neccessary for you to seek out support.
hugs,
Denny

Loretta, Sorry it has taken me so long to write back. I belong to another board where I am a mentor & I have been very busy with it lately. It has taken what computer time I can tolerate. I can't believe you used to hang out in my "neck of the woods". What a small world!!! When we owned a boatwe would take it to Lake Billy Chinook but I liked Prineville Reservoir better. Prineville was more family oriented & people followed common boater safety better there. But I only live 20 minutes or so from the cove. A lot of people from the valley vacation over here to get to the better weather. Its funny to me how people think the "whole" state of Oregon is nothing but rain. People have a hard tie believing me when I tell them I live in the high desert of Oregon. It'slike I am lieing I guess or don't know what my own climate is. I mean we get 9 whole inches of rain a year where I live. Not exactly like the Willamette Valley as you know from being here. If you ever get the chance t come back it would sure be fun to meet for coffee or lunch or something. Thank you again for making me feel so welcome. You are a wonderful lady.
hugs, Denny

Hi Denny, Thanks for the invite. I certainly would contact you, that would be wonderful. No immediate plans. Our daughter now married for 8 years would love to take her husband to Oregon, to the cove, coast and Eugene. My husband and I have a lot of memories of the cove. 17 years of 10 days. Wow, lots of skiing. We liked to stay in the E section up above. We had a motorhome and Blue Water ski boat, built by the cove. We have the boat here in Arizona and the motorhome is parked in Washington State by his Mom's house.We live pretty close to several lakes here and had lots of fun till, I pulled a nerve in my left hand, which now is crippled for the RSD. I didn't know I had RSD and that's how it spread full body. Misdiagnosed here and flew back to Eugene and was diagnosed in 1 minute at Sacred Heart Hospital by sports injury Dr. It's funny, I got RSD from surgery one floor apart several years earlier from a bad surgery. Guess, I'm still a little bitter over it, even after lots and lots of counseling. Anyway, grateful for so many things. Take care, Loretta

Hi Lisa,
I'm sorry you have RSD. It's amazing how long we can have it yet learn more and more. I wanted you to know I live in Scottsdale, should you ever want to talk or post directly to me. I developed RSD the day following surgery back in 1996. It started with swollen arm and then frozen shoulder. It wasn't diagnosed as such, just complications from left breast surgery. I had PT and massage therapy. The rehab Dr. I was referred to and that oversaw my pt wanted me to see Orthopedic Surgeon. He was to operate to 'speed' up the process. Would still have to have PT. I said no thank you. I had already been thru about 1/2 (50) pt. I did the massage therapy on my own just before pt.
It was torture.So I finished out the therapy and had nearly all range of motion back.