[ali12]

As many of you will know, Ali has rapidly been losing faith in her PM Team due to a number of reasons but mainly the way the "talk-down" to her and treat her as a small child and not a soon-to-be teenager facing a difficult battle against pain
As such she is asked at every physio session is anything worrying her, is she scared of something, does what she reads on boards such as this frighten her etc etc etc.
It seems to her like they are trying to blame her in some way for not getting better and for the meds they prescribe not having any effect
Yesterday she finally told me that at the last appointment she was asked by the Physio "...If your house was on fire and you were upstairs alone, do you think you would be able to get out of there ???"
Bear in mind that Ali developed severe coordination and balance problems after a bier block and hasn't walked since July. How do you think this made her feel..? It did nothing for her confidence even though she did say she wouldn't be able to walk but she'd get out by shuffling around on her bottom !!!
The problem was that it made her realise just how vulnerable and dependant she is at the moment
Maybe they were trying to shock her - if that was the intention then it worked !!!!
Our Physio acts like an amateur psychologist all the time and I am at a loss as to how to handle this as Ali now hates the thought of going and being subjected to more questions about her mindset
She hates being in a wheelchair, hates being in pain and desperately wants to get better so why do people in the medical profession act as though she doesn't want to get better and is happy to stay like this for the rest of her life
It is so frustrating to be in this situation
Any ideas why the Physios would ask these questions and has anyone experienced something similar
Thanks
Andrea

[dreambeliever128]

I believe we all get that attitude at one time or another from Drs. or Physical Therapist. I have had Drs. that thought I wasn't trying to get better, I didn't keep them long because my feelings is if they think that way then they aren't going to try hard enough to get a person better. Their attitude would be," well if she's not trying we can't help her to get better.

I do believe I would push for new Drs. and new Physical Therapist. We can only do so much, we know our limits, not them.

I agree with Tayla on what she said about the new Drs. Ali doesn't want to be in that wheelchair for the rest of your life, and without having the right Drs. she is sure not going to get out of it if she doesn't get the right help right away.

If I were you, I would call up those people right today and say ok, we are done with all of you we want to see those new Drs.

I'm pushy though, but we have to get to that point. We have to learn to talk back to the Drs. when we feel they are wrong.

I am praying that things start turning around for Ali and you. She is such a smart, great person. She needs to be able to get better and do things that will help her move forward in life. I believe with the right help she can. She may not get rid of the RSD but she can get it into remission with that right help.

One thing also. When I started with this new Dr. I WOULDNOT mention that she and you are on the website right off the bat. I would see if I am dealing with openminded people that are ok with that ideal. There are a lot of people in the medical field that don't think we should be on there.

I hope things start falling into place for both of you soon.

Ada

[Jomar]

I really think a new physio person is needed - the person sounds like a nosey busybody.

Ali needs to have supportive and accepting care givers.
These people, or that person do not fit that requirement that I can see.

Her posts here seem very mature to me.
I would think being limited and in pain with something like RSD would make anyone grow up fast.
Same as our other younger members, they are mature beyond their years. Most likely due to the circumstances of the condition...

[ali12]

Just had a call from my daughters consultant saying they are going to put us in touch with someone called Dr Andreas Goebel who is based in Liverpool, England
Our consultant says CRPS is his specialised field but he cannot guarantee that he will agree to take on Alisons case
Has anyone heard of this doctor - have searched on the internet and found reference to quite a few papers he has written
Many thanks
Andrea

[dreambeliever128]

This is wonderful news. I do hope he takes her on. Some Drs. might not want to deal with Children because of their lack of practice with taking care of them. Hopefully he will. If not, don't give up, hopefully someone will come up with a name of a Dr. that will take care of her and help to get her better.

Hang in there, Ali. Your day will come.

Ada

[tayla4me]

Andrea,

I hate to say it but the attitude of the physio is not so unusual. This is the speak of a professional who has not been able to make a difference so it immediately becomes the fault of the patient.
I have come across this often but I am afraid it takes a lot to intimidate me as I have worked side by side with these professional most of my life and I and know how they tick.
There is nearly always a psychological element with RSD/CRPS, it is not what initiates the disease but it seems to invariably be a result of it.
Fear of pain and safety can subconsciously make us reluctant to engage in an activity which we know will cause pain.
I believe this is what the Physio may have been saying in her questioning of Ali but what she needs to realise if this is an element in Ali's problems then she has NO control over it.
There are some wonderful Physio's out here who specialise in the treatment of RSD/CRPS and they carry out graded motor imagery and mirror imagery. I must admit I feel that this could really work for Ali if carried out in a timely manner by someone who knows what they are doing.
Lorimer Mosely who developed these programs is actually in UK at the moment on a research program at Oxford University.
I think it would be wonderful if you catch up with him and his programs whilst he is there. I guess if you rang Oxford they could perhaps let you know his Itinery.
Heaps of luck
Tayla

[wakegirl]

i caught this late but i just wanted to say hang in there ali. a few years ago i had moved away from home and had to search for a new pt, it started out far worse than i could have imagined. i went from one pt to the next thinking that i had just run into a couple who had managed to shove their heads deep into the sand while the whole pain management movement came into play, i was shocked when 4 weeks and 8 visits later i was still searching for a pt who meshed with my method for survival. eventually i found a pt who got it. in an effort to understand why there seemed to be such a gap in the quality of care i started asking questions and what i found was that depending on the program attended (for a degree) the quality of patient experience varried. i will be the first to admit that there are definately pts out there who have no business treating pain patients but i think most pts who struggled with the concept fell into a different catagory...those who have not dealt with patients who have a strong grasp of their own limitations as the result of experience instead of perception. that is to say i think that the majority of those who try to force us to follow the system they supply are pts who havent spent a lot of time around patients who say they cant because they have tried it and they just couldnt do it.
i agree with those who have said it is time to seek help elsewhere. you need to go to a new pt and start fresh. i would suggest that once your doctor suggests a new pt you place a call to the reccomended therapist and tell them that your doctor suggested that you might work well together and i would ask if it would be ok if you came in just to have a conversation to see how things feel (asap). the reason for this speedy introduction is 2 fold. first once your doctor contacts your pt time is limited, your old pt will quickly submit their notes to your doctor who will them forward them to your new pt. once that happens all of the bias the old pt has expressed within your treatment will be passed on and the opportunity for your new pt to know about you and how you are handling your crps will be lost. as much as we as patients would like to believe that a pt treats the patient they encounter the reality is they base at least some of their knowledge about you on the information they are given. to circumvent this you need to interact with the pt prior to the interference of other individuals is introduced. in the US most pts are willing to do an evaluation with or without a script from the doc...you may want to talk with your insurance liason and find out which pts they are familiar with and see if they can help you to set up an introduction. if you explain to them that you are having a hard time finding a pt who is willing to treat you they will probably help. if the pt has a grasp of you before they are influenced you may have a better experience.second, if you are introduced prior to your file being transfered you will be able to gauge how the pt sees you as a pain patient or more importantly a young pain patient. if the pt treats you poorly during that brief interaction the likelihood it will continue is good.
no one, not a doctor or a pt, understands your crps as well as you do. you need to find someone who is willing to help you to combat the disease.
there is one more thing...but before i talk about it i think a preface is needed...ali i had rsd when i was about your age and i wish i had the strength and knowledge you constantly display...as a chronic pain patients we become very aware of what we can and cannot do, unfortunately we forget that pts base the excersizes they want us to do on what they have seen us do. after 4 knee surgeries i thought i knew more than the pts (i definetly knew more than my doc) so when i strolled into pt for my post op stuff following another knee surgery i tried to tell my pt what i planned to do...it wasnt until my pt said since you know so much you dont really need me, even if you could really use my help to avoid ending up right back here in a year. i realized that while i might be a master of what one pt had to offer that wasnt all of the knowledge available. it is hard for all of us to be willing to try something we know wont work, but if you want to wipe the slate clean you have to be willing to try what the pt wants...it will probably have the exact same result as the time before but by being willing to try allows the pt to evaluate the excersize and to feel like they are trying. if you simply tell your pt you cant do it, they will become frustrated and will believe that you are difficult. just give it a try...if it hurts to much you can say so and the pt will have to adjust. just give them a chance.
it is hard to find someone who is willing to invest the energy it takes to properly treat a pain patient, unfortunately those patients sometimes forget that they arent the only ones who feel like a failure when things dont improve...a good pt will walk that line with you.
hang in there ali you will find a pt who wants nothing more than to make your goals a reality

[miss irie]

Hi, Andrea.

As you know, there are many different schools of thought within the medical profession with respect to RSD and it cause, symptoms, treatments, etc. There is a myriad of information available on the web and no "black and white" answers are readily available. RSD/CRPS sufferers respond differently to many treatment modalities and we share these experiences through the forum/board to offer insight that may be helpful to each other. Perhaps Ali's therapist is concerned that she may have difficulty filtering the information available or that she may develop rigid viewpoints?

There is obviously no "fit" between Ali and her therapist. Regardless of why this is happening, if Ali does not have confidence in her therapist any progress will certainly be hindered.

Underlying conditions (sleep disturbance, emotional well being, strain on other joints/muscles) have an impact on how a patient can perform during PT sessions. Is Ali taking any medications that are working well? Is there regular communication occurring within Ali's "medical team" (pain specialist, PT, family doctor)?

I have CRPS in my left leg. I always took pain medication before beginning PT sessions. Also, I highly recommend pool therapy. If this is not available, perhaps you can go to a community pool (must be very warm water)?

I hope that Dr. Andreas Goebel agrees to help. I'll keep my fingers crossed for you both.

Cheers,
Catherine


P.S. If I remember correctly, Ali had some difficulty taking Amitriptyline. I experienced this too and switched to Nortriptylene which works well and is helping me sleep much better.

[(Broken Wings)]

Yeah.
Change her therapist and let the old one know you thought it was inappropriate for a therapist to use scare tatics on such a young child. my therapists have had words of encouragement on how to overcome obstacles that I may encounter. not gloom and doom tatics. That's what she has parents for. I know it's tough and hard going through these things but she may never be challenged by a buring house. And for the inevitable that lies ahead, with or without shortcomings, can you prepare for everything. It's a day by day exerience.

Lots of luck
(Broken Wings)

[Kyzyl363]

Ali I am very sorry for what you are going through. I also don't agree with your treatment. You do need to start out with a clean slate somewhere else. I mean a clean slate in respects to a new pt or treatment team and from yourself. It is exactly as miss irie says

There is obviously no "fit" between Ali and her therapist. Regardless of why this is happening, if Ali does not have confidence in her therapist any progress will certainly be hindered.

Also,

Underlying conditions (sleep disturbance, emotional well being, strain on other joints/muscles) have an impact on how a patient can perform during PT sessions.

Be completely up front about your expectations with the people you are dealing with. Do you have a copy of all your medical files and treatment reports completed by your treatment team? There should be no secrecy between you and your treatment team. I would ask to get copies of everything and make sure you review your file to verify all pages that will be passed along are included. Also ask several questions or confront them about issues you feel were unfairly assessed. It is important to have full disclosure with the people you are dealing with. You need to know their perspective on paper because it is going to have an impact on how you are treated down the line.

Nevertheless, you still need to try to start with a clean slate when dealing with a new person. They should know what your perspectives are on your treatment, past, present, and future. You will also know if you click with them. You may be apprehensive at first but try to recognize within yourself if you are being so because of the way you are being or if it is the way they are being. You really need to recognize things about yourself and your treatment team so things don't escalade (I mean with your new treatment team).

I know you have had a really hard time with things and if people could equate it with any other type of treatment it would be seen as abuse. I really wish there was something more I could do to help. You have been such a source of inspiration and support to me I always feel at such a loss when it comes to being there for you. I am sorry if I come across as stern or somehow unfeeling but that is never the case. I have always had to take a step back from my emotions to take another look at things in a more logical fashion. If I am in anyway emotional or the issue hits a cord my immediate reaction is to say NO or STOP but then two days later I have to go back to whomever I said it to and say okay, I have thought about this or I have done some research into this and here is my real opinion on this matter. My husband as learned this about me. No matter what I say at the moment, he knows it will sit with, I will think about and come back to him later. It does take time for me to process things, escpecially now with the meds and pain.

Anyway, I really hope to hear some promising things from you or your mom about this new doctor. I know it is hard never to get your hopes up too high about anything but my fingers are crossed that you find a good match.
Take Care and wishing you the best. J