NeuroTalk Support Groups - How to convey how bad it is to the GP?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - How to convey how bad it is to the GP? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/182704-convey-bad-gp.html)

Dear Imahotep;
Regarding ygour post above where you said ...There should be some better medications down the line and it might not be too long till it can be eradicated altogether.
Is there some new clinical trials or results that make you optimistic in this statement? This comment stuck in my mind all day today and I wanted to ask you about it. I pray everyday that they can find a cure for CRPS for all of us.
SS

Quote:

Originally Posted by CRPSsongbird (Post 950538)

NeuroChic --- you always seem to be able to voice things perfectly!

I was thinking the same thing.

NeuroChic said she was a lurker here for awhile and a little hesitant to join in. Unless she was worried about having a flare from typing, I'm not sure what the hold up was. I'm sure glad she decided to chime in !

Well said, Neurochic......keep up the good work !

Sorry I was so slow in getting my post in!!!

No reason for it - just what passes for normal life these days getting in the way. Plus sometimes I feel I would just be repeating myself so I don't post or i hold off until I feel I have something useful to add. I guess like everyone else, there are posts that I don't feel I can add anything too or that my views might not fit with so I just let them be.

Having done endless research, gone to medical conferences on CRPS, talked with several of the international clinicians who are currently at the leading edge of CRPS research and actively lived with it all for years, I am now fairly sanguine about the whole thing most of the time so I suppose I post from that perspective. I know that's not an attitude that everyone shares (or can share for so many reasons) and it may offend. I'm not a cynic but I am a realist, I don't do platitudes, sentiment or religion and all that can rub people up the wrong way!!!

And to SallySue, I'm sorry but i dont believe there's a chance of medical science curing this condition in my lifetime (Im not that old BTW!). Although there are plenty of developments in medical science, there is still amazingly little understanding of how the human body actually works. Bear in mind also that the drug development process takes 15 years minimum. The costs and the attrition rates are absolutely eye-watering. The number of new drugs making it to market every year is small and many of them are only variants of drugs we already have. CRPS doesn't have a big enough or symptomatically consistent enough patient group for anyone to fund the drug discovery process for 'CRPS specific' new drugs. CRPS patients will always have to rely on trying drugs that were developed and licensed for other conditions once they are already on the market. That's not to say there won't be improvements in symptomatic treatment (both pharmacological and other modalities) as the years pass and understanding increases but my money isn't on a cure.

Thanks Neurochic - but that is depressing.
SS

Try not to be depressed about it. That is just the way things are and there's no point in letting it depress you. You have to focus on making your life as good as it can be now without holding out for some wonder drug or cure. The FDA only approves on average 20 novel molecular compounds (drugs) drugs onto the market every year, some years it's in the teens. Depending on the figures you look at, as many as six out of seven of those are only variants of existing drugs so that's what you are looking at as a reality.

My purely personal view is that theres no point in worrying about the things over which you have no control. There's even less point in letting things that you can't control depress you because that is reducing your quality of life. If something fantastic comes along in the future then that's awesome, but live for now and make the best of what you can.

Also, I suggest making your appointment(s) later in the day if that is possible.:)

Quote:

Originally Posted by sallysue (Post 950658)

My understanding is there are a few fronts on which this disease might yet be beaten. The most promising now is that the very nature of pain is becoming better understood. I believe that if they could turn off the pain even chronic RSD victims would get well or at least much better. I believe there is a more direct cause of the disease and someone might stumble on it at any time probably leading to a cure. This disease is probably highly preventable and this might be discovered first.

Quote:

Originally Posted by birchlake (Post 949400)

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!

Thanks for this tip, I've been wondering how to solve that problem! My appointments are always before 9.30 am, I tend to 'roll out of bed & into the doc's' needless to say both my feet & legs look ok'ish, I leave think to myself why can't I get an appointment at 2am then they'd look different....... I just bought a camera a couple of weeks back, tonight I'm going to start using it for my legs etc & show them how bad they really are. Thanks again :hug:

If you do get any tips on how to explain to your GP, please share them :)

first things first I never expect to get pain free my goal is to lower my pain level enough so that I can function repetitively ie get back to work at least

tried everything meaning all of the usual treatments, perhaps I should have phrased that better

my frustration with the GP is a cycle that is so silly it's like a comedy sketch, he goes back to something I've tried before that's been unsuccessful without any good reason - I call him on it politely in case he's making an honest mistake and he still prescribes it and shock horror it doesn't work

I'm on a waiting list for acupuncture and the only other thing is Ketamine which I'm going to suggest at my next appointment for it's off label use for chronic pain (here in the UK anyway)

I articulate how my pain affects me extremely specifically and always tell him what my pain scores have been averaging out at (I do three a day). I don't hold back either I tell him if it's made me cry among many little things that happen on a daily basis

The real problem is they're either incompetent, don't care or even both, I'm not saying that out of frustration I'm going off all of my doctors track records - the ones that said it was all in my head were the worse ones - this was before the diagnosis they were clearly useless. The medical journals are updated every 12 months over here they obviously didn't keep updated

Anyway I've got myself a new GP and she seems really nice - the caring type of doctor you know the one I mean. We had a good chat a week ago (first visit) and I felt comfortable talking with her - she did have a misunderstanding of the disease (she believed it always died down and went away lol) but I cleared that up straight away i wish she was right!

Thanks for the replies everyone I'll let you know how I get on

Quote:

Originally Posted by Neurochic (Post 950334)

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.

I have to say that the three medical specialists, and GP in my life are women. My former GP, a male, told me my symptoms, were in my head. There are many excellent physicians, specialist. I am prejudiced at this point. :)