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 10-12-2012, 10:40 PM #1
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Angry How to be taken seriously?

Hi everyone! I am new to this forum and have a general question for those of you who are in your 20's or younger with CRPS, or are associated with someone that fits this description.

I was diagnosed two years ago at the age of 25. Still trying to work everyday, though saying it is a struggle is an understatement. I have had sympathetic blocks which didn't work and am currently awaiting my neuro stim trial. My CRPS was poorly treated from the beginning and just recently started getting the treatments I needed a year and a half ago.

So, my question is this, when going to a new doctor, do you find it hard to be taken seriously because of your age? I recently had to go to a new doctor and this isn't the first time this has happened, but they treat me like a common street criminal looking for drugs. Aside from aquatic therapy, and the pain treatments, I am also on opiates. Have tried several different "nerve meds", but they all make me very sick. All I get is lectures about how I am too young to be on these meds. Like I enjoy it? The problem is, they all want to lecture, but give no alternatives. It is frustrating to be treated this way. My family feels this same frustration as well watching me go through it.

Just wondering if I am alone in this battle? Maybe it isn't even my age, maybe it is a common thing to be treated this way because of the lack of understanding of this disease? Thoughts? Experiences?
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Old 10-13-2012, 12:59 AM #2
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Your age doesn't matter, the simple fact is that 95% of the medical profession have never heard of RSD/CRPS 4.9% have heard but have no real idea or have been given wrong information. about 0.1% are real upto date specialiists.
I had one professor tell me I was an expert and knew more than he ever would, 45 mins later he told me I don't have RSD
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Old 10-13-2012, 09:56 PM #3
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Hey, I am new to the forum too. I am currently 25 and was just diagnosed in January after months of trying new doctors and searching for answers. I do agree with Kevscar that most doctors have not heard of crps or they just don't know that much about it.

However, I think that your age probably does play a role in it too. I've experienced the same kind of treatment, and it is extremely frustrating. I would just go from doctor to doctor never getting any other answers or suggestions. Some doctors would only be in the room for a few minutes and then just give me a diagnosis and leave, and I had a couple of doctors tell me that I am way to young to be experiencing this much pain as if I was making it up. I never even thought my age could be affecting the way I am treated until I brought it up with one of the pharmacists I work with. She was the first one to suggest my age had something to do with it, but since she mentioned it a couple of months I think she is totally right.

Her suggestions were to make sure you bring someone to all of your appointments. She said doctors are much more likely to spend time with you and hear out all of your concerns as well as give better explanations if someone is in the room with you. She also said to try to write down all of your questions and bring any notes with you. Even if you don't need them to remember it makes it look like you took some time before your appt and that you are prepared. She said little things like that may help them take me seriously. I am not even on any controlled rxs yet, and the pain management dr made me come in weekly for a drug test and to count my gabapentin. Slightly extreme? I think so. Especially since I work in a pharmacy and know what drug abusers look like and how they act in comparison to me.

Just try to keep your head up high, and even though its really aggravating try not to stress about it too much cause it will probably make your pain worse.
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Old 10-14-2012, 04:28 AM #4
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The reason I say age doesn't matter is I am 58 yet that was still the Professors reaction.
I have spoken to 7 Specialists including the ones ranked 1 and 2 in the UK and they are all the same, it's the Doctor god complex. The number 2 guy was going to send me to germany for the 5 day ketamine Coma 18 months after I had read they banned it after a number of patients stayed in the coma and at leat one death yet when I told him he didn't believe me.
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Old 10-14-2012, 07:08 AM #5
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Default Hi Baby Girl

I am so sorry you have had such experiences with doctors. I wanted to say hello and welcome you here. You won't be shoved to the side here, that is for sure! I am responding because I am older, and this same kind of treatment has happened to me. I was given a lecture for almost 20 minutes, and you know, I didn't even get a word in about what I was experiening. Good God, and he charged $247 for that visit! I was horrified. It isn't just your age, it is the doctor. Get another, who shows some wisdom and compassion. People get sick at any age, and no patient should be treated like that. RSD is painful, and needs to be treated. Have you tried Katemine lotion? It numbs the areas effected very well, and has me reduce opiates to a big degree. There are other alterniatives, besides sitting in front of a doc. that doesn't take you seriously. Walk out, head up, and seek someone else. We will be here for you at Neuro Talk. I hope that you can find that compassionate doctor in your area. Post where you live, and someone may be able to recommend someone. I wish you all the best. I go to a physiatrist, who specializes on pain, and treating the whole person. ginnie :
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Old 10-14-2012, 10:38 AM #6
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I don't think I have ever been denied access to medication or had anyone discriminate against me because of my age or had a dr with attitude or anything because of it. I was injured at 29, and I'm now 31, but I just haven't had those problems. However, that said, I'm always willing to drug test, I'm always willing to try patches, or new meds, as long as I have something for breakthrough pain. And I've never run out of meds early and it's been years I've been receiving them. I also don't change drs very often, I only see new drs when I am referred. Also, a huge part of it is, my hand LOOKS painful. It LOOKS like it hurts...so I think they find it easier to treat pain when there are signs and not only symptoms of pain. I can't imagine if my hand looked better how much more difficult everything would be.
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Old 10-14-2012, 02:43 PM #7
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I am only 30 and I am sometimes treated the same way. The fact is the nerve meds do make a lot of us sick and opiates is the only answer. My response to them is FIND A CURE! If you can't do that, then the least you can do is make me more comfortable. I don't enjoy the opiates, but I have to get through my day.
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Old 10-14-2012, 02:44 PM #8
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I also point out to the doctors and other people that I have to get through the day at work because the insurance from work is what pays the doctor bills.
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Old 10-15-2012, 12:16 AM #9
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Quote:
Originally Posted by Babygirl3234 View Post
Hi everyone! I am new to this forum and have a general question for those of you who are in your 20's or younger with CRPS, or are associated with someone that fits this description.

I was diagnosed two years ago at the age of 25. Still trying to work everyday, though saying it is a struggle is an understatement. I have had sympathetic blocks which didn't work and am currently awaiting my neuro stim trial. My CRPS was poorly treated from the beginning and just recently started getting the treatments I needed a year and a half ago.

So, my question is this, when going to a new doctor, do you find it hard to be taken seriously because of your age? I recently had to go to a new doctor and this isn't the first time this has happened, but they treat me like a common street criminal looking for drugs. Aside from aquatic therapy, and the pain treatments, I am also on opiates. Have tried several different "nerve meds", but they all make me very sick. All I get is lectures about how I am too young to be on these meds. Like I enjoy it? The problem is, they all want to lecture, but give no alternatives. It is frustrating to be treated this way. My family feels this same frustration as well watching me go through it.

Just wondering if I am alone in this battle? Maybe it isn't even my age, maybe it is a common thing to be treated this way because of the lack of understanding of this disease? Thoughts? Experiences?

I am 22. Diagnosed this last june, afterf dealing with several doctors, and no answers for a long time.

I have the same issue, i have asked for alternatives, and to try and notbe on opiods, but they prescribe them anyways, and then say im too young for this and, always treat me like im a druggie, makes no sense...

Also i no longer can drive, and my new doctor is 1 hour away now. (first visit was last monday) so my mother had to take me as she was the only one available to, as she works in the same town the doctor is in. So while at the appointment, i asked her to go ahead and come in with me so she could get a better understanding. The whole time the doctor was talking to her and not me, and telling her to make sure i do things? I kept saying, i do not live with my mother, she is hear for moral support, please speak to me. my mom said the same thing and he just kept on going back to her. It was so frustrating.

I think that being younger does have an effect on the way they treat you in some aspects, but at the same time i think majority of people with rsd have issues with doctors and being treated like druggies or whatever.

Hope things get better for you soon!
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Old 10-15-2012, 08:36 AM #10
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My wife is in her 50s and has a 10 year history of doctors who are clueless. I can ramble on and on about this subject. As stated before, try to bring an advocate with you, it does make a difference.
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