RSD frustrations

finz · 01-28-2010, 08:07 PM

Hi Catra,

Welcome to NT !

Your story is familiar in so many ways. Most of us have also been through MULTIPLE docs just trying to find one who will listen. Finding one who can help seems to take even longer.

I admit I don't know much about the lumbar blocks. My main pain is like a burning glofball just to the left of the cervical thoracic junture, and the ache/heaviness goes to my left neck/chest/arm, so I've had a few stellate ganglion blocks. The way to tell if they got it in the right place is if you have horseness and eye redness/droop. If it lessens the pain (which can take a few days for the steroid to kick in), then it is said to definitively dx that rsd is present, BUT the lack of pain relief does not mean that rsd cannot be present.

I'd be leary of a doc who said the results PROVE that it isn't rsd before the steroids even had a chance to kick in. Reminds me of an ignorant pm doc I once saw who told me I couldn't have TOS because my main complaint was of the neck pain.....he said if it was TOS ALL of my pain had to be in front at my collarbone.

Have you been able to find a good neurologist ? A neuro who works with rsd patients might be able to point you in the direction of a good pain clinic.

Hang in there. I'm 5 years into the struggle and still looking for answers and the right medical help.

Finding NT literally saved my sanity a few years ago. I hope that you can also find comfort in knowing that there are others out there who understand....even if we can't 'fix' the problem for you.

CRPSbe · 01-31-2010, 11:33 AM

Your frustration in dealing with this condition sounds familiar. I struggled for years and years, was diagnosed almost 3 years into it. By then it was too late, it had spread from both knees to both legs and was chronic. I have this monster since 1995 (at the age of 23), so more than 14 years. Since 2008 it spread to both arms for which I am still undergoing treatment (calcitonin). Treatment is a little different in this country. They start with calcitonin, then they try bisphosphonates, this together with pain medication (such as anti convulsants). If that doesn't help or help deal with the pain, then they try the more invasive stuff (blocks, SCS,...)

I hope you get the care you need asap.
Don't stop fighting until you do!

loretta · 01-31-2010, 09:27 PM

Quote:

Originally Posted by catra121

This is my very first post here and I just found this board a couple of hours ago. I have been reading like crazy and I had what I felt was a horrible experience today with my current doctor and the need to "vent" to people who could relate, understand, offer advice...whatever.

This all started about 6 months ago when I banged my foot on a steel plate at work and had several boxes fall on my head. Obviously the first concern for everyone was my head. I could hardly move my head at all side to side, up or down for a couple of weeks. But I kept telling the doctors how much my ankle hurt. They kept looking at my foot and saying it was fine. Finally I convinced them to start me on phystical therapy, but when I got to PT I found out they only sent me there for my neck. I forced the issue and we split the time between neck and ankle, spending more time on the ankle as my neck improved. I kept telling them how much my ankle hurt...I couldn't walk. They said put MORE weight on it, try to walk without the crutches. Did that and pushed myself to the point of not being able to walk at all because the pain was too intense. Mind you, I was working this entire time as a retail manager, struggling to try to do a job where I normally spent 9 hours at least on my feet a day without walking more than I could handle.

After 2.5 months, they said they didn't know what was wrong, couldn't help me, and sent me to someone else. During this time, while trying to get ready for work one morning I stumbled a little and put full weight on my left foot (the bad one). Passed out from the pain and ended up spraining my left wrist. Got a referral to an orthapedic. Wrist got better, ankle not at all. Got a cortizone shot. No help at all. Referred me to a pain management specialist, who I am currently seeing. He is the one who first said I had symptoms of RSD.

All this leads to my current frustrations from today. I FINALLY got approval from work comp to get a lumbar sympathetic block and I got it today. I was so optimistic...after a month of waiting and being put off I would finally get this procedure and that would "cure" my pain. Err...WRONG. It didn't help with the pain at all. I actually have more pain at the moment. I had read a lot in the past month or so and I was aware that there was a chance that my pain would not go away or that even if it did it might only be for a short time. The doctor didn't tell me any of this, I had to look for it myself. But whatever...I can deal with that. It's frustrating...but I can deal. I was all prepared to ask him what the next step was and where do we go from here. My frustrations...the big ones...come from the doctor himself and his attitude.

His first statement when he sees me today prior to the LSB is about how I put him in the middle of this nasty litigation. Um...I'm receiving work comp benefits and I have a lawyer and there has been some nastiness towards me...but what on earth is he talking about? He's the fricking doctor and he is responsible for my care and making me better. The "litigation" as he terms it has nothing to do with him. Okay...weird comment...but I tried to ignore it and he talked about my pain and then went into a description about how this is a really "formal" procedure with pictures taken by the CT machine, etc. Again...it's all about the lawyers...not about my care or how this is supposed to help me. Whatever...go in for the procedure (which they completely knocked me out for).

Wake up and they ask how my pain is. It's the same. I move my foot up and down and OH YEAH...it's the same. Just as bad as ever. So they take me to the room to recover. What's your pain level they ask. Same as before. Doctor calls the nurses on the phone and when they tell him that he says he will be right down. 30 minutes later I finally see him and he goes over with me how the procedure was "textbook" and I have all the signs that it "worked" so now he's not sure that I have RSD. He says he'll see me one more time to try a cortizone shot in my ankle but then he's done with me. DONE WITH ME! OMG! I was just shocked.

I finallt have a doctor who gives me a diagnosis for my pain and all these weird symptoms I have had since the beginning. Leg is cold from knee down on my bad leg (all the previous docs ignored this and said it was just a circulation thing), hurts to wear a sock, is impossible to wear a normal shoe, tiny vibrations hurt like all begeezes, can't sleep, have burning pain all the time and deep pain regularly. I know these are not all the possible symptoms for RSD, but I don't think you have to have all of them. If this is not what I have, then what's wrong with me? Something is. And work comp forced me to go for an independent medical evaluation where they picked the doctor and he agreed that it was CRPS. Now, after apparently being harrassed by work comp lawyers and such my doctor is "not 100% convinced" and he's done with me. But in the next breath he cautions me that if I see a doctor and he wants to cut me open to surgically fix the problem that I should absolutely refuse. If he doesn't have a stong belief that I have RSD, then why would he say that?

I have been crying now for a couple of hours because this is so frustrating. I have read up on RSD...I believe without a doubt that is what I have. I am still going to PT (although at a different location than the first 3 weeks that I did at the first hospital because that was useless) and I will continue to go to PT. The doctor even wrote me out a perscription for continued long term PT. I will continue to try to push through the pain, but I need some relief, no matter how small from the pain. I have lidoderm patches...they help a little. All the meds I have tried do not help at all. Electonic stimulation at PT seems to help...but it helps less and less each time I go.

I want to work with a doctor who will help me achieve my goals of overcoming this condition so that I can fuction at least semi-normally. I have been off of work for a month now. I want to go back SO much because I miss it. I miss feeling like I am accomplishing something each day. I miss the social interaction. I truly love the work that I do and I just miss doing it. But there is too much pain and I cannot stand/walk for more than 10 minutes at a time...and even that is hard. When I get in my car after PT...I cry. I can't be that way at work. I can't run a building and be responsible for all the people in it when I can't even think straight because of the pain. I can't do the demanding physical parts of the job. So what am I supposed to do?

I just feel so distraught to have another doctor who has failed me. And what's more upsetting is that I feel like this is someone who could help me but who won't because he doesn't want to deal with the work comp people. I have a hard time standing up for myself when I am with a doctor, or anyone that I don't know or am not comfortable around. But I really want to yell at this guy and tell him to grow some fricking balls and just tell whoever is "bothering" him about me that HE is the doctor, not THEM, and that they are not qualified to question his medical decisions and assessments. They got another doctor to "assess" me and he confirmed my doc's disgnosis. So that should be the end of it. Treat the patient, that is his job, and he should tell these other people to just buzz off. Of course I CAN'T say that, it's not who I am, but I WANT to. He mentioned some other doctor who I believe he is going to refer me to. I think before I go in to see him this "one last time" I will try to see if there are any good RSD docs in the Chicago, IL area and mention the possibility of a referral to them.

Sorry this was so long, but I was just REALLY frustrated. Even just tryping it all out makes me feel a little better. Tomorrow I will try to regroup and get all my thoughts in order to figure out where to go from here. Bottom line is, I do not want to give up on myself. I know that is crucial to my recovery and I have to keep reminding myself how important it is. Thanks everyone for the opportunity to vent out these frustrations.

Hi Catra, I am so very very sorry you have RSD. Physical Therapy is one of the most important things you can do ( by an experienced RSD PT) Delay of that because of WC is not OK. Even if you have to borrow $ or the PT do it on Credit- Delay can cause permanent range of motion losses and sensitivity issues. Also the best way of going on or off medication is one at a time, otherwise you don't know which one was helping or doing no good.
I've had RSD 15 years and now full body and internally-not good. But I am completely mobile except for my left hand (due to wrong diagnosis and lack of physical therapy soon enough and hand is 50% frozen like a claw.
My RSD came immediately following breast biopsy (benign) arm became swollen then frozen shoulder. Sent to a Rehab Dr. to oversee physical therapy. It took 100 treatments. I decided to add massage therapy to help thngs along. After about 50 treatments, they wanted me to see a ortho surgeon who wanted to operate and break it loose- I said no-had no idea I had RSD. Anyway, after the 100 painful treatments, had full range of motion back. Remission for a year. When I was done with the treatments,we were moving from Oregon to Arizona and my therapist told me not to be surprised if I got frozen shoulder in the other shoulder. I thought that was strange. Went back to playing tennis, snow skiing, water skiing etc. Was in remission for a year. During water skiing, felt pull in my left hand. Diagnosed Rheumatoid Arthritis. Didn't make sense as my RA tests were negative. I decided to fly back to Oregon to a Sports Injury Ortho Group and diagnosed RSD in 1 minute. RSD used to be called hand shoulder syndrome. Dr. had it verified with nuclear med test. ordered a Tens United and startd me in physical therapy- I eventually came back to Arizona and found a good neuro and hand ortho who had physical therapy group . I only got 50% back as had too long of delay in start of therapy. (didn't sue)
When I got RSD in other shoulder, my neuro wouldn't see me (our insurance had changed) I said I would pay in cash-he said no- There are just some Drs. who don't want to deal with RSD or he knew I had a legal case against the Scottsdale Dr. even though I didn't go down that road. So had to find a new neuro. I just spread from there. When i was diagnosed 6 years ago as generalized or full body, my neuro suggested I see a psychiatrist to learn how to deal with the pain and all my losses. I didn't care for his 2 recommendations or for him so found a Dr. in yellow pages-isn't that outrageous.
My new Dr. is a psychiatrist, neurologist, and pharmacologist-wonderful man and has keep me mobile . He does trial studies for pharmaceutical companies. I'm sleeping 10 hrs a night with Seroquel which helps fibromyalgia, which I also have. Because I sleep 10 hours now, I have been able to go down on vicodin from 6mg to 4 mg a day and down on lorazepam.
I take 2 high blood pressure meds too.
He has built two clinics with hbot in them. Hyperbaric Oxygen Chambers help with circulation. I'm going to go thru series of hbot. Florida's VA Hospital just put in 16 Chambers for injured VA's. Amputee's and Burn Victims are helped with HBOT.
I, like yourself, hate pills but take them out of necessity. There are meds besides opiods that work on nerve pain. Cymbalta is an anti-depressant, but works on nerve pain-I take 120 mg. Lorazepam is an anti-anxiety med, and helps calm the sympathetic nervous system. RSD is a dysfunction of the sympathetic nervous system. I take 4mg of Lorazepam a day-it calms the SNS and prevents it becoming out of control.-thus increasing pain. I used to be on 6 mg a day. Sleep is imperative-Without restorative sleep-our pain level goes way out of control. My Ambien CR quite working and pain levels shot up. My Dr. put my on one of his trial studies for Seroquel XR 300 mg
rsdrx.com is a website that is very informative. Dr. Hooshmand is a long time RSD Dr. who is retired now, but left his website up. Puzzles is really 146 questions from his patients and his answers. Very Good. Also RSDSA is the national organization for RSD. They have a place where you can put your zip code and receive name and phone number closest to you for support group.
They also have Dr. referral. Support Group Meetings can be very good for support and local information. RSDSA had their annual meeting here in Scottsdale and was very very good.
Sorry this is such a long reply, but wanted to encourage you. Don't give up, Stay Positive your friends, loretta with soft hugs

catra121 · 02-01-2010, 12:41 AM

Thanks again for the continued replies. I have been reading up on as much as I possibly can on different possible medications and treatments so that I can go to my next doctor's appointment armed with questions and different things to try.

I think PT is going pretty well and I have gained a lot of the strength back but I just can't shake this pain. And I feel like I have hit a wall in PT where I can't quite make that next step beyond where I am at until I get this pain under control. What I am doing now brings me to tears, which I try to hold back until I am alone in my car after therapy because I am too embarrassed to cry in front of people I don't really know. This past Friday was the closest I have come to breaking down in PT, but I am trying very hard to stay positive.

I am totally committed to getting back to my normal life...but I know that means a lot of hard work on my part and good docs and physical therapists who will help me get there. I feel like if I could just get this pain under control I would be able to overcome this hurdle. It helps to hear that I am not alone and I feel like I am really lucky compared to a lot of the stories that I have heard of what other people are going through. Just goes to show that things can always be worse.

Thanks again for the support.

keep smilin · 02-01-2010, 08:32 AM

Quote:

Originally Posted by catra121

Thanks again for the continued replies. I have been reading up on as much as I possibly can on different possible medications and treatments so that I can go to my next doctor's appointment armed with questions and different things to try.

I think PT is going pretty well and I have gained a lot of the strength back but I just can't shake this pain. And I feel like I have hit a wall in PT where I can't quite make that next step beyond where I am at until I get this pain under control. What I am doing now brings me to tears, which I try to hold back until I am alone in my car after therapy because I am too embarrassed to cry in front of people I don't really know. This past Friday was the closest I have come to breaking down in PT, but I am trying very hard to stay positive.

I am totally committed to getting back to my normal life...but I know that means a lot of hard work on my part and good docs and physical therapists who will help me get there. I feel like if I could just get this pain under control I would be able to overcome this hurdle. It helps to hear that I am not alone and I feel like I am really lucky compared to a lot of the stories that I have heard of what other people are going through. Just goes to show that things can always be worse.

Thanks again for the support.

Catra121...

As I read your post, I want you to know that you are not alone as you basically decribed what we have all experinced from time to time..and your post was not too long.. it was informative and factual!!! We all learn with RSD it is small steps as the pain is so darn overwhelming, yes..I believe you have RSD... that our bodies and minds can handle only so much at a time.. Address small segments at a time..each day at a time... find a treating Dr. you can believe and trust... if you need to leave your work due to your pain, sorry but your body comes first. I jsut left my work after 25 yrs. due to my RSD pain..can't walk either ...I was losing my mind and not able to think straight anymore!! I gave it a vigulant fight!!Please, place your needs and pain management first.. continue going for interventions and never ever give up!!!!!!! Its a given that there are many Dr.'s out there who are in it for only the $$$ and a few others who really care..Find one of those!!AND stay with us for help and support!

Much love, KS

daniella · 02-01-2010, 01:38 PM

Hi. First I am sorry but can relate cause over the 3 years of this I have seen so many docs with so much frustration I can't even tell you. A few thoughts I have. EVeryone is different but for myself and again you have to look at what you for yourself feels is best but there is no way I would get a shot in my rsd area. I don't even let any of my docs touch my leg. All the ones who deal with RSD are acceptable to this. I had a lumbar block which increased my pain and why my pain doc did not want to do the scs. I still have rsd though. Some of these dx tests are not accurate in diagnosing rsd and you also don't have to have all the symptoms. I have traveled to many docs who have been considered to be one of the best and turned out not to be. I understand how hard it is to keep to hope and to keep searching for someone to help you but somehow you have to keep going. I hope you have family support cause that has helped me. I am not sure if she went for treatment there because she is a teen but I thought I have heard rush hospital in Chicago deals with rsd. I encourage you to call the major hospitals in your area in their pain management/anestesolgist dept and explain your condition and ask if they have a pain doc who treats that a lot. You know I traveled to see Dr Stanton Hicks and to California but my best pain doc was one I found by calling a major hospital in my area. Lastly I know you are trying to hold in the emotion but it is ok to feel and cry. Sometimes one needs a good cry to let it out. Hang in there.

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