To give the Dr a letter or not?

[Squirrel3]

I have painful condition with my hands that renders them quite useless most of the time.

I am seeing the consultant on Friday but when I talk about the problems I am having with them I get a bit emotional so I try to laugh it off and don't really give the full picture on how badly it affects my everyday life.

My dp was going to go to the hospital with me to explain how bad they really are but he can't go now (work have insisted he goes in).

He has sat with me and made me write it out so that I can give it to the consultant.

Thing is, I am going to feel completely stupid giving the Dr the letter, he is going to think "OMG, I've got a right one here!" I bet I don't give it to him, I know I should but I bet I don't...

Please someone give me the courage to either actually say it (without trying to laugh it off and make it seem like nothing really) or to give the letter to him.

BTW Why do Dr's and hospitals turn me into a gibbering wreck when it is me with the health problem? I am a strong independant woman, nothing really scares me, I can talk to Dr's about my childrens health so why can't I talk to the Dr about mine?

I think that is a great idea - and I am sure he will be impressed with your organisation!

Just explain to your GP that you feel the letter details your pain better than you are able to talk about it. Explain to him that you find the medical profession very intimidating. A good consultant will understand and make you feel at ease. Good luck

I used to work in the hospital environment and this is fairly common.

If someone was particularly anxious etc. I would encourage them to write down their questions etc before they went into clinic as they would always forget when it came to the big moment!

I think if you are open and honest and say that you were quite anxious about coming to the hospital and remembering everything that you want to say, then most doctors would be more than happy to accept it in the written form. I know I would.

However - Don't make it miles long. Try not to be over emotional in the letter - facts would be better but don't be worried about putting in the psychological effects of your condition too. And make sure that it is easily legible (maybe type it if your hands are bad?) as they won't have time to decipher it.

Also expect that they will want to ask you questions too and they may ask you things that repeat what you've already said in the letter!

Good Luck

Thank you for your replies, I think I needed to hear it?s not that unusual to hand over a letter to your Consultant.

I have done the letter, its not emotional, it?s more about the things I physically can't do anymore and one sentence about my worries if they continue to deteriorate the way they are my concerns for the future. I have typed it because holding a pen is too painful; it?s not a ?novel? so it shouldn?t take long to read.

I just want him to take it seriously and I know if I say it I will try to laugh it off or make a joke to stop myself from bursting into tears and feeling foolish. The last time I went I did exactly that and I don't think he understood how painful and debilitating the condition is for me. He is not exactly sure what the problem is yet but you can see how swollen my hands are. I have seen him a few times over the past year, I have had injections into the joint etc and tests for carpal tunnel syndrome but no positive results yet.

I?d cross my fingers for luck if I could, I hope they find out what it is and can help me soon.

Just a quick up-date,

I did give the Dr the letter, he read it and had a 'eureka' moment and he made a diagnosis from reading what I had written and my medical notes.

The outlook isn?t good for my hands but at least I have a diagnosis 'Reflex Sympathetic Dystrophy'.

I have been referred to a pain clinic, physiotherapy, and occupational therapy. Also I have to wear splints on my hands at night. It seems that the sooner it is treated the better but as I have had it for 21 years (its only the past three years the pain has been totally unbearable and I have insisted on seeing a consultant) he wasn't optimistic about a 'cure' the treatments would be more about pain control and finding ways to cope differently.

Not the diagnosis I wanted but at least he was able to make it after reading my letter, if I had just tried to laugh it off again I could have still been waiting this time next year.

Thank you to those who gave me the courage to hand him the letter.

Hi sorry to hear about the diagnosis it's a horrid condition and degenerative. I hope you get the pain under control soon, so sorry that it's taken so long to get a diagnosis .

At least it is a diagnosis, when I didn't know what is was it was worse, the uncertainty and frustration was awful.

Now I know what it is I can look forward and try to find ways of coping rather than wondering what it is iykwim.

there is a self support group for RSD - be warned some people have it very very badly (my friend does) so don't let the horror stories scare you, my friend doesn't use the forum much any more some people were too competitive over who had it the worst etc! Also don't have any surgery for anything and make sure you read all the leaflets for any drugs you are given to try very carefully!

I'd never heard of it until yesterday. I have been looking around on the internet for information about it and I did come across the forum. I thought it might be a good idea because I thought I might get some useful information on coping with it and the treatments etc but if they are like that...

Why would anyone want to out-do someone else like that? I thought it would be supportive...

I will try to tread very carefully with the treatments then too, can you tell me why? I'm guessing the treatments can cause more problems than they solve from your post. I can see why people want to try anything though because it is so painful and dilbilitating.

usually (from memory of many conversations with friend) it is triggered by an event quite often surgery or injury. so if you had surgery say on your leg it is then highly likely you would develop RSD there as it's a neurological reaction. I think many of the drugs they use you just need to be careful that you follow the instructions - ie take with food, so many hours before food etc, shouldn't be taken with this drug etc etc.

You may find good support on the RSD forum but as will all forums you always get a few people who are odd! There are people registered disabled/in wheelchairs etc so they may have little else in their life other than their condition (it's an attitude some people take on but not others in the same situation IYSWIM). They used to have an annual conference not sure if they still do.

I just know that each surgery my friend has had to try and improve the situation has not gone well and she is stuck in a catch 22 situation but her spread of RSD is far worse than yours. At various times certain drugs have been dispensed to her without the leaflet and suffered side effects as a consequence and they damaged her liver with years of being on paracetamol based pain relief...........it is a long saga......

The Dr said it could even be caused by an infection or (as likely in my case) a head injury.

Thanks for the info about treatments and medication, I'll ask loads of questions etc before making any decisions.

I might try the forum but keep in mind what you have said about it and take alot of it 'with a pinch of salt', there might be some useful advice/support there.

Thanks again for your posts.