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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)

How to convey how bad it is to the GP?

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Unread 01-21-2013, 03:51 AM   #1
bfff2020
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Default How to convey how bad it is to the GP?

Got an appointment this morning after a hellish 4 days and the problem with seeing my doctor is I think I've become too good at masking the pain that he can't see what I'm feeling at all

Now it ends in nothing I know I need to be tried on a stronger/different medication but how do you get it across that you are in bits? he can't see how swollen things were on Saturday today

Worried it will be another 'chat' appointment with no result or resolve to reduce my pain

You name the modality I've either tried it or incorporated it into my existing pain relief program

Advice?

Hope you are all feeling low levels of pain
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Unread 01-21-2013, 06:55 AM   #2
birchlake
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I've had those concerns as well. When I see a doctor, especially early in the morning when my foot is at its best, it can be perceived that things are going better than they truly are. My foot is at its best (visibly) early AM and then gets progressively worse through the day with the hours of "weight-bearing" increasing the visible and pain symptoms.

What I did was take digital pictures of my foot on different times/days and then printed out LARGE color pics on my printer and brought those pictures along to the appointment.

As the old saying goes......"a picture is worth a thousand words".

I brought a few pics of my foot when it was very angry/red/swollen along with me when I saw my podiatrist this past week. Those pics generated some helpful discussion between us and he thanked me for bringing them along. Luckily, I have a great relationship with my podiatrist, which is so very necessary as he is the primary doctor on my treatment team.

As your appointment is this morning, this strategy might not work for this appt. but might be something to consider for future appointments. All you can do is to explain how you have differences in visible symptoms at different times / different days. If the doctor doesn't believe you, (not unusual) it might be time to consider a different doctor.

Good luck!
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Unread 01-21-2013, 08:13 AM   #3
mommystime2
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Quote:
Originally Posted by birchlake View Post
I've had those concerns as well. When I see a doctor, especially early in the morning when my foot is at its best, it can be perceived that things are going better than they truly are. My foot is at its best (visibly) early AM and then gets progressively worse through the day with the hours of "weight-bearing" increasing the visible and pain symptoms.

What I did was take digital pictures of my foot on different times/days and then printed out LARGE color pics on my printer and brought those pictures along to the appointment.

As the old saying goes......"a picture is worth a thousand words".

I brought a few pics of my foot when it was very angry/red/swollen along with me when I saw my podiatrist this past week. Those pics generated some helpful discussion between us and he thanked me for bringing them along. Luckily, I have a great relationship with my podiatrist, which is so very necessary as he is the primary doctor on my treatment team.

As your appointment is this morning, this strategy might not work for this appt. but might be something to consider for future appointments. All you can do is to explain how you have differences in visible symptoms at different times / different days. If the doctor doesn't believe you, (not unusual) it might be time to consider a different doctor.

Good luck!
i wish you the best of luck, i have done pics and gone in late in afternoon and have gotten no where, if you find a answer please share!
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Unread 01-21-2013, 12:35 PM   #4
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There are no words to express the hellishness of this condition and its pain to others. This might be because we don't really understand it ourselves. The pain is just another symptom of everything that's going on and it ebbs and flows like the tide. Sometimes it's the problem and other times it's just a part of the problem. Most of the time it seems like all of the problem leading us to misapprehend its nature and importance. Fear of the pain can be worse than the pain itself and this problem can increase as if we protect the affected limb and use it less and less.

There's little doubt that the solution is to try to find a way to use it and that the means is to find ways to lessen the pain by distracting oneself and through medication if any help. There always seems to be a heavy toll on the mind and the self and this effect seems direct even though doctors are unanimous in saying it's indirect. The disease is largely about coping and, God help us, we sometimes only get help to the degree we fail to cope. Good luck in finding relief and keep fighting. There should be some better medications down the line and it might not be too long till it can be eradicated altogether.
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Unread 01-22-2013, 07:04 AM   #5
alt1268
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I have done pics. on my iphone and even made a disc for my dr.'s, lawyer, etc. Because it does change through out the day. I find pics work well. But sometimes you get that, well it doesn't look like that now so you must be doing better. That's when you explain that it can change at any point during the day. good luck.
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Unread 01-22-2013, 12:45 PM   #6
cactusfoot
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Advice?

Keep a pain journal. Make it as detailed as possible. Bring the journal with you to your next appt. Goodluck!
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Unread 01-22-2013, 04:45 PM   #7
CRPSsongbird
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Quote:
Originally Posted by bfff2020 View Post
Got an appointment this morning after a hellish 4 days and the problem with seeing my doctor is I think I've become too good at masking the pain that he can't see what I'm feeling at all

Now it ends in nothing I know I need to be tried on a stronger/different medication but how do you get it across that you are in bits? he can't see how swollen things were on Saturday today

Worried it will be another 'chat' appointment with no result or resolve to reduce my pain

You name the modality I've either tried it or incorporated it into my existing pain relief program

Advice?


Hope you are all feeling low levels of pain


CactusFoot says what I think too. I can be annoying and hard to do sometimes but keep a pain diary! Detail exactly what you're going through. And TELL him look I am in severe pain. Detail loss of sleep, or changes in mobility/abilities. Unfortunately it is extremely hard to convey to someone how much pain you are in unless you are bluntly honest!
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Unread 01-23-2013, 08:59 PM   #8
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I've never had luck with getting ANY doctor to give more than a cursory glance to my pain journal.

I recommend having a spouse or good friend be there to be your advocate. I usually don't have issues with not speaking up when I think the occassion warrents it, but for some reason, I have with doctors when discussing my pain issues. That could be in part that I've been told so many times, "It's all in your head" or "I hope that you aren't going to ask for narcotics" or "You just need to work harder in PT." I have no problem advocating for my mom with her many pain and health issues, but I now panic with those docs who have been less than supportive of helping me maximize my comfort and functionality. If you have someone that can go with you to advocate for you getting better control over your symptoms and your life, that might help.

Having a list of points that you want to bring up can also help. If you start by saying, "I want to make sure we cover my issues with x,y,and z, so I have a plan going forward"....at least you will be sure all your points were at least mentioned instead of spending a lot of time on one small part of the problem
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Unread 01-23-2013, 10:58 PM   #9
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I have always been lucky and my GP has never doubted the severity of the condition I have, nor the severity of my pain.

I think honesty is the best place to start. You cannot help yourself if you mask the truth or try and keep it together. You need to use the real words that describe how bad it is for you and describe things like the true effect it is having on your daily life, your activities, your mood and your relationships. If you want to cry, don't hold back - he needs to understand how it is affecting you.

It's easy to try and keep it together and you don't want folk to see you falling apart - it's only human to hide the reality from doctors - been there and done that many times. It doesn't help either in the short term or the long term.

Pictures and a pain diary can be valuable tools if your doctor responds to those things. If not you need to try and work out what will make him or her sit up and respond. You might want to think about it and rehearse the conversation or what you want to say before you go (with a friend or partner or just in your own head). Try and anticipate any blocking questions the doctor will ask to try and test whether you are overreacting - perhaps have some actual examples that illustrate what you are trying to say ready beforehand so that you can dispatch those questions by demonstrating just haw terrible the effect of the pain etc is on you.

I spent a lot of time in tears with my GP - he was as keen to explore my mood issues as well as the practical pain and other problems. The tears are sometimes still there but much less so these days. I didn't want to be honest about mood so I was angry and defensive but when I finally fell apart we finally managed to move forward a bit. After that I was less defensive, cried when I felt like crying and was totally honest about how crap everything was. He worked hard to support me - we had a few heated arguments too but he worked hard for me and has never doubted my pain. In fact, he worries that I am am sometimes too inclined to try and tough it out when that isn't helpful for chronic pain management.

Trust is important in the GP patient relationship. My GP trusts me and the accuracy and currency of my knowledge of the condition. If I ask to try something or seek a referral, I take all the info he needs to evaluate it and I explain exactly why I think it might be worth doing. I always give him and his views their place and take on board what he thinks. We agreed recently that I would just 'live with' big flare ups in pain without medicating using fast acting fentanyl products because I already find the fentanyl patches hard work in terms of their fatiguing side effects. We discussed it constructively and because I had read, sought advice from a friend who is a pharmacist and was aware of the risks, it was a conversation of equals, not him telling me what I could and couldn't have. I know that I can always go back and revisit that conversation to look for another outcome if I have new information or if what I am prepared to suffer changes.

So, truth and honesty, examples, tears, taking someone with you who can perhaps back up what you are saying about how badly the pain affects you and no holding back are my suggestions.

You did say that you have tried all the modalities yet you are looking for something more from your doctor. On the face of it that sounds like a bit of a contradiction. Have you really tried everything and the problem is that you are going to have to accept the fact that you will never be pain free? Are you struggling to accept that this is maybe as god as its going to get? Or are there actually still various things you haven't tried for pain management yet and you want to open a discussion about what you can try? Just curious to understand where you are at in the CRPS journey.
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Unread 01-24-2013, 04:34 PM   #10
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NeuroChic --- you always seem to be able to voice things perfectly!
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