Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-30-2013, 01:24 AM #11
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Thanks for all the replies. I have had CRPS for around 25 years now but it has only been really bad for the last few years. I am glad I am not alone in having bad experiences with Dr's. I made me feel that I was the problem but after all of you guys great replies I can say it is not me it is the small minded idiot of a psyc. I see a psychiatrist my OT has referred me too, I have a lot of confidence in my OT so fingers crossed for this guy. Thanks again
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Old 10-31-2013, 08:02 AM #12
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I suggest you pirnt out these and take them along with you, insist they read them first
http://www.rsdhope.org/crps-symptoms.html
http://www.ozrsd.org/forum/kb.php?mode=article&k=4
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Old 11-01-2013, 06:35 AM #13
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Quote:
Originally Posted by Kevscar View Post
I had the head phsychatrist tell me the spread happened because I knew it could, told her I knew I could win the lottery so why hadn't I. Never saw her agian


bwahahahahaha !
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 11-01-2013, 09:54 AM #14
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Default Hi Katiek

People do not experience anaphylactic shock, or things like angio edema, just because they think it. This is a very serious thing that happens that can threaten a life. Go to another doctor that takes what you say seriously. These are NOT mental issues, but an alergic reaction. I too carry an Epi pen. You have to find a doctor that doesn't talk "down" to you. You deserve to be taken seriously. Docs like that make the situation worse. Hope you can find someone new to help you. We are here too at NT to listen anytime. Ginnie
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Old 11-01-2013, 01:32 PM #15
RSD ME RSD ME is offline
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I saw a psychologist at first when I got rsd and he was very kind and understanding. He said he knew of three people who had rsd. One whose died of a heart attack shortly after getting rsd, one died of cancer shortly after getting rsd and one who was in a nursing home completely bedridden after getting rsd. Though I liked the man, I was completely freaked out about his stories stopped seeing him. I started go a psychiatrist who could prescribe xanax and zoloft for me becuase my anxiety level skyrocketed after seeing the pscycologist. My psychiatrist is also very kind and understanding. He said he has only had a few patients with rsd and that even though he hasn't seen them get physcially better from rsd, he hasn't seen them get worse either. I like his stories better and the meds he prescribes help me deal with my rsd panic attacks and anxiety and depression. If you don't feel comfortable with your dr and he doesn't believe what you say is true and thinks the pain is just in your head, then I would go to someone else. I've had drs who thought my extreme pain to my broken wrist was in my head until they realized I had rsd and that the pain was all too real. I started seeing another dr after that too. I don't live in Australia, though I wish I could visit there sometime to see the koala bears, but you may be able to find another dr online and don't forget to check his healthgrades for patient reviews and medical history, i.e. any malpractice suits he may have had. I stay away from those. Good luck. My thoughts and prayers are with you.
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Old 11-01-2013, 04:43 PM #16
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Default Find a new one!!!

You have the right to refuse to see that ..i hesitate to call him a person...again. Try and find someone who has actual experience in treating patients with CRPS.

He was absolutely WRONG in what he said. Try a print out some nifo for him by Dr. Hooshmand. He the WORLDS foremost expert in dealing with CRPS/RSD. I'm sorry, I know how hard it is in dealing with people who try and say it's "all in our heads". Yes it can be exacerbated by strees, but dealing with attitudes like that don;t make it less stressful! What an *****. I hope you get real help soon!
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Old 11-01-2013, 06:21 PM #17
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Default Hi Kevscar

Shall we all Hit the lottery? Great post, made me smile. ginnie
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Old 11-04-2013, 09:05 AM #18
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I have an appointment with my new psych on Wednesday, so will report back. It is so frustrating at the moment dealing with the physical aspect is one thing, then the mental issues rear their head. My anxiety has been quite bad recently. I am currently on income protection and the company placed me under surveillance, this has caused major issues, whenever I leave the house I think I am being followed. Not a great feeling. I am hoping that the psyc might be able to help me out with this. Also I was wondering if anyone else has developed compulsions. I find myself doing things such as checking I locked the car or house 5 times. I do other strange things too, my husband said maybe it is because I am sort of in control of those things where as I have no control over my body at the moment. Has anyone experienced this
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Old 11-04-2013, 09:37 AM #19
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Quote:
Originally Posted by katiek View Post
I have an appointment with my new psych on Wednesday, so will report back. It is so frustrating at the moment dealing with the physical aspect is one thing, then the mental issues rear their head. My anxiety has been quite bad recently. I am currently on income protection and the company placed me under surveillance, this has caused major issues, whenever I leave the house I think I am being followed. Not a great feeling. I am hoping that the psyc might be able to help me out with this. Also I was wondering if anyone else has developed compulsions. I find myself doing things such as checking I locked the car or house 5 times. I do other strange things too, my husband said maybe it is because I am sort of in control of those things where as I have no control over my body at the moment. Has anyone experienced this
I have katie, it's not fun is it? Makes you feel like you're going mad... It's called OCD (Obsessive Compulsive Disorder) and its normally caused by anxiety/stress of some kind - which completely explains it I think, because CRPS just throws everything about your life into chaos and fear and worry. I had it for a while when my first child was born, and I learnt to control it for the most part, although every now and then I'll do something weird like straightening something so it faces a certain way. Strangely enough my number was 5 as well, which is a bit spooky .

I never saw anyone about it at the time, and I've never really mentioned it. My Experience of GPs led me to believe that they would probably label it as a mental disorder, flag it up on my records forever, and just prescribe anti-depressants, which I didn't want. I've worked through it myself by basically reasoning through it. Mine was very much based on fear, and I sort of thought that if I didn't do a certain thing an exact way, something bad would happen. Illogical, but very real and scary at the time... It takes a lot of courage to mention it, I think that's really brave

Personally, I found talking through some of my OCD past with a therapist really helpful. It helps if they can just talk about it calmly and not like it's a huge issue or problem. Doctors tend to frown, scribble and prescribe - talking it through was far more healing, and makes it seem less hopeless and like you have a choice. I'd mention it to your new psych and see how they are with it - if they take it calmly, dont judge or try to fix you, and you feel safe to explore it with them, then great. If they make you feel uncomfortable about it, or like you are odd, then ignore them and seek help elsewhere. If you have a good GP and you have a close relationship, then try them if you feel it is getting out of hand, controlling you too much or generally you can't see a way forward. There are helplines as well, and advice online (stick to trusted sites though). If I can be any help, or you just want to talk, PM me.

Good luck and take care of yourself.

Bram
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Last edited by Brambledog; 11-04-2013 at 09:45 AM. Reason: Forgot a bit :)
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Old 11-04-2013, 09:49 AM #20
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Quote:
Originally Posted by katiek View Post
I have an appointment with my new psych on Wednesday, so will report back. It is so frustrating at the moment dealing with the physical aspect is one thing, then the mental issues rear their head. My anxiety has been quite bad recently. I am currently on income protection and the company placed me under surveillance, this has caused major issues, whenever I leave the house I think I am being followed. Not a great feeling. I am hoping that the psyc might be able to help me out with this. Also I was wondering if anyone else has developed compulsions. I find myself doing things such as checking I locked the car or house 5 times. I do other strange things too, my husband said maybe it is because I am sort of in control of those things where as I have no control over my body at the moment. Has anyone experienced this
Katiek,

You are right dealing with both the physical and mental aspects of this a major battle in and of itself!

Sounds like the insurance company is trying to find a way to wiggle out of paying your income protection policy.. weasels!! My only advice is to work closely with the physician who diagnosed your CRPS/RSD and follow his recommendations as much as possible. Work through conflicts regarding referrals and treatment recommendations with that physician so that you don't get labeled as a malingerer or someone who refuses any type of treatment. The psychologist you are seeing - do they specialize in 'pain psychology'? If not, I would ask to be referred to someone who is familiar with treating people with chronic pain or chronic medical conditions since that invariably changes the dynamic of therapy. Try not to worry about the surveillance as long as you are honest with your abilities and inabilities what they see, shouldn't be a problem.

Regarding the compulsions - have you been evaluated for PTSD? PTSD can occur after any type of major trauma including the trauma related to illness, injury etc., if you haven't already discussed this with your doctor it might be worth bringing up. Be sure to mention to each an every doctor or therapist you see about your symptoms no matter how insignificant they seem.

Try to relax..
Tessa
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