Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
The Burning Nights CRPS Support blog on 18 Tips Preparing You For Your Pain Appointment is extremely helpful whether you have received your first pain management appointment letter or your 20th. This blog deals with before the appointment, whilst your at the appointment and other information such as types of questions you could ask about your condition and treatment options

18 Tips Preparing You For Your Pain Appointment

2018-05-29

18 Tips Preparing You For Your Pain Appointment

 

Receiving your pain appointment through the post can be for some, a stressful and anxious moment. You may have waited a long while for this pain management appointment, and seeing your first pain clinic appointment letter can leave you several different emotions all at once. Learning our 18 top tips preparing you for your pain appointment will help you get the most out of your pain management appointment, so you can leave the clinic knowing that you’ve dealt with everything that has been going on and you’ve got all the information you were hoping to get.

 

 

The Burning Nights CRPS Support blog on 18 Tips Preparing You For Your Pain Appointment is extremely helpful whether you have received your first pain management appointment letter or your 20th. This blog deals with before the appointment, whilst your at the appointment and other information such as types of questions you could ask about your condition and treatment options

 

Often just knowing that you’ve got to see the doctor can sometimes seem give you the stomach ‘butterflies. There’s a lot of information that you’ll have to provide to the Doctor and that you’ll have to listen to and to try and process as well as already living with a condition you may not know anything about; Complex Regional Pain Syndrome (CRPS) or another chronic pain condition. This can mean that you’re not always at the top of your game. Many patients can have ‘brain fog’ as soon as they go into a pain management appointment which can mean that you forget what you really needed to have said to the doctor.

 

This blog on 18 tips preparing you for your pain management appointment will hopefully help you not only get the most out of your pain clinic appointment for your future care and treatment, but will also provide you with some sense of comfort knowing that you’ve done everything that you possibly can to get across everything that you needed to.

 

Before Your Pain Appointment 

Just like the majority of other medical appointments, you will have only a limited amount of time with your pain doctor, so making sure you know what you want to get through with them is crucial. If it is your first pain management appointment then this time will be approximately 30-40 minutes, however each pain clinic is different and therefore can be longer or shorter depending. Your doctor will most likely want to discuss certain topics with you, but you should remember that your pain appointment is essentially about you. You may also have to go through an examination if this is your first appointment and occasionally after the first appointment, which will probably be very uncomfortable or even painful but it will help the Doctor in his diagnosis whether it is Complex Regional Pain Syndrome (CRPS) or another chronic pain condition. In this blog we will go through our 18 top tips preparing for your pain management appointment, which should help you focus on the things you need to deal with. For this section of our top tips we will deal with the time before your pain appointment i.e. when you’ve received the pain clinic appointment letter.

 

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  1. Pain Diary and History of your Problem

If it is the first time you are going to see the pain specialist, then it’s important that you take with you a brief medical history of your problem as well as a pain diary to show the various signs and symptoms you have been having. In your medical history of your current problem you should include:

  • Information on when your problem started,
  • The different signs and symptoms you are having,
  • How severe the pain is,
  • If you’ve tried any prescription medication, over-the-counter medicines including any vitamins, Chinese medicine, homeopathic, ointments, drops, herbal and supplements etc.
  • If you are still taking any of these medications whether they are homeopathic or over the counter then you must remember to note down the strength of any medication you are taking and how you are taking them ie in tablet form and how often ie every 8 hours
  • If you are on any prescription medication then take a copy of your current prescription with you. If in doubt take all the bottles and boxes of medications including homeopathic/complementary with you to the appointment

 

It’s very easy to forget a sign or symptom that you’ve been having, or a medication that you’ve tried when you’re actually face to face with your doctor. As we’ve mentioned you will have mixed emotions running through you and you will undoubtedly want answers from your specialist. But you need to tell the pain specialist everything that’s been happening, to ensure you get an accurate diagnosis.

If you have been seeing your GP or other specialists for your problem or symptoms you’ve been having, then it is a good idea to bring along a summary of your medical information which you can get from your GP. This summary should include the majority of test, scans, investigations and x-rays that you’ve had. This will help your new pain specialist to properly diagnose and assess what treatment you should try. If you have any scans, x-rays or other tests done previously, bring them or the results with you to the appointment.

Whether you are seeing the pain doctor for the first time or not, keeping a CRPS pain diary or symptom diary can be important. There are a number of apps that are available on the iPhone or Android phone. However Burning Nights CRPS Support has a free CRPS pain diary that you can download and fill in. You can then take the completed pain diary with you together with a copy for your doctor, to your pain appointment. The pain diary can show both yourself and your doctor any points where your pain spikes (symptom flare up) or reduces, what you were doing at the time, any new signs and symptoms and any side effects to any medication.

 

Tip 1 of the 18 Tips Preparing You For Your Pain Management Appointment is all about taking your medical history and the history of your problem with you. This will help to remind you what has gone on, when the problem started, signs and symptoms and more #CRPS #RSD #CRPSSupport #ChronicPain #PainManagment

18 Tips Preparing You for your Pain Management Appointment

 

2. Note Down Any Questions/Concerns

In the time leading up to your pain appointment, keep a notepad and pen with you including by the side of your bed, so you can note down any questions or concerns you have for your pain doctor wherever you are or even if you’re in bed.

When you’re at your pain appointment you will no doubt forget things that you either wanted to discuss or wanted to ask, which is why noting down your questions beforehand and taking your list with you to your pain appointment. Take in a second copy of your questions /concerns so you can give it to your pain doctor. Remember to leave yourself space after each question or point so you can note down the reply or answer from your pain doctor.

 

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3. What Questions Should I Be Asking?

There’s no right or wrong set of questions that you should be asking your pain specialist whether it’s at your first pain appointment or whether it’s your 20th. By keeping your notepad and pen (just like the Burning Nights CRPS Support notepad and pen set) with you at all times before your appointment, you can then jot down any questions you want to ask, no matter how ‘silly’ you think those questions are. You can then note down your questions even if you’re bed and you’re having trouble sleeping.

If you’re visiting your pain specialist for the first time then your questions could include:

  • What is the cause of my pain?
  • What condition do I have?
  • Is it usual to have this pain and these signs and symptoms?
  • What are the possible short term and long term effects of my condition?
  • Why does my pain/symptoms worsen at certain times of the day or year?
  • What can I do to prevent any further complications or problems?
  • What are my treatment or management options?
  • How do those treatments work?
  • What are the potential advantages, disadvantages, risks & side effects of those treatments?
  • Will physiotherapy or Occupational Therapy (OT) help my condition?
  • Is there any possibility of having neuromodulation (i.e. Spinal Cord Stimulator or Dorsal Root Ganglion stimulation treatment)?* This is not really for patients going for their first pain appointment
  • Are there any alternative or homeopathic treatment options?
  • What self management options are there?
  • Are there any resources, support or charities who can help me learn about my condition and living with it?

These questions are not set down nor are they the ones that you definitely should use. These are just for guidance to help you prepare for your pain appointment.

Why not take a look at the About My Pain website and the list of questions that they have included on there along with a very good checklist that you can download and tick off the items as you do them? Visit About My Pain and click on the Questions To Ask Your Doctor.

 

18 Tips Preparing You For Your Pain Appointment - Tip 3 - Keep a notepad and pen with you so you can note down any questions or concerns that you may have at any time before your pain appointment

18 Tips Preparing You For Your Pain Appointment – Tip 3 – Keep a notepad and pen with you

 

4. Pictures and Videos

If it is your first pain management appointment, then you may wish to take some pictures of various signs and symptoms you may have had since your problems started. There’s no need to take an album with you but just a few pictures that show perhaps colour changes, mottling of your skin, nail or hair issues etc. All of which will help the pain doctor properly diagnose your condition, especially if it is Complex Regional Pain Syndrome, as part of the Budapest Criteria for diagnosing CRPS is your patient history.

 

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5. Ask A Friend To Go With You

If you are going through a CRPS journey or any chronic pain condition journey on your own, it is a good idea to ask a friend, relative, carer or family member to come along with you to your pain appointment. Make sure that when you receive your pain appointment date, if you want someone to come with you that you ask the person in advance if they will come along with you. Don’t leave it until the last possible moment to ask someone. Some people especially not family members are sometimes not comfortable about going to medical appointments.

Having someone with you at the pain appointment can not only be a comfort to you and give you some confidence, but they can also be there to listen to what your pain specialist says and recommends. Your pain specialist will probably go through a lot of medical information, giving you a CRPS or other chronic pain diagnosis and it is important that you can trust the person you take with you.

Your friend, relative or carer can also note down the answers to any questions that you take in with your to your pain appointment. You may feel frightened, anxious or flustered when you visit your pain specialist so having a second pair of eyes and ears can be very helpful. The person with you can offer you both support and comfort especially if it’s your first pain appointment.

Even though you may take along a friend, relative, carer or partner please don’t let them speak over you or talk for you. The condition is affecting you and even though they may have witnessed a symptom you mention, they are not you, and it should be you that tells the pain specialist what’s been happening.

 

Receiving your first pain management appointment letter can give you mixed emotions all at once. Our blog, 18 Tips Preparing You For Your Pain Appointment, will hopefully help you get ready for the appointment to ensure that you make the most out of your time. Tips 1 - 5 are to help you leading up to the pain appointment itself

18 Tips Preparing You For Your Pain Appointment – Tips 1 – 5

 

 

6. Interpreter

If you need an interpreter then you will need to contact the hospital where you are going to request an interpreter. You will need to give at least 2 weeks notice to request an interpreter.

 

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7. Day Before Your Pain Management Appointment

Your worry and stress will undoubtedly be increased by the time the day before your pain management appointment comes around. If this is your first pain management appointment, it is best if you pack up everything that you’ll need for this first pain appointment. Don’t leave things until the hour before you are due to leave for your pain appointment, as you will probably forget to take something that you need. Remember to check the time of the appointment as it’s very easy to misread times and dates especially if you have brain fog or simply because of living with CRPS or chronic pain.

 

Here’s a list of some of the things you need to get together to take with you:

  • Your appointment letter and map of where you need to go in the hospital
  • Make sure you complete any necessary paperwork that came with your appointment letter and take it with you
  • Your medication or current prescription
  • Any vitamins, supplements, creams, homeopathic, Chinese Medicine etc or over the counter medication you’re taking or have taken plus the details about their strengths, how often you’re taking them and how you take them. If in doubt it is always best to take the box or bottle with you so the Doctor can see for themselves
  • Any x-rays, scans, test results, reports or letters you’ve had done for the current problem
  • Brief medical history
  • Any allergies you have
  • Brief history of your current pain problem
  • Your document detailing signs, symptoms, issues, problems or a copy of your pain diary  
  • Your list of questions or concerns you may have
  • If you’re outside the U.K. you may need to take with you your insurance details or workers compensation information.

 

What else would you take with you?

 

8. On the Day of Your Pain Appointment 

The day of your pain appointment has now finally arrived! Your body will probably be reacting to the stress of the appointment, so try some deep breathing exercises or a 5 minute mindfulness exercise to try and calm yourself down. As your symptoms of your pain condition will start to heighten and worsen. You want to make sure you get everything you want to across to the pain specialist and yet you still may want answers for things.
If you have someone with you at the Pain appointment they should give some comfort knowing they are there with you, to help you understand what the pain consultant is saying.
Try and arrive at least 15-30 minutes early so you can calmly check in instead of being rushed and flustered on the last minute and also hand in any completed paperwork and complete any documents that the nurses or receptionist gives you such as the pain questionnaires, quality of life questionnaires etc. However it’s important to remember that the appointments don’t always run on time and you may have to wait. If you think you’ve been waiting for longer than the advised time, please do go and ask at the reception or speak to a nurse and mention that you’ve been waiting for longer than the waiting time, just in case you have been missed.
Your Doctor will be going through a lot of information and will be asking for a lot of answers to try and fully assess and diagnose you properly. The pain specialist will ask you questions such as:

  1. How your pain and symptoms began? After an accident, infection, surgery?
  2. What type of pain you feel – burning, stabbing, shooting, dull, achy, sharp, deep muscular pain?
  3. How would you rate your pain on a scale of 0-10? Remember to be realistic on this pain scale, as Doctors tend not to believe patients when they say their pain is 10, even though you will most likely feel that it is a 10. Take a look at The Mighty blog on rating your pain on the 0-10 scale
  4. What have you used to try and reduce the pain? Medications, injections, psychology, alternative therapies, physical therapy, surgery, changes in diet? Which have helped? Which have not?
  5. What makes the pain worse?
  6. Are you able to sleep through the night or are you kept awake with the pain? How much sleep on average do you get per night?
  7. How much does the pain interrupt your daily life and activities?
  8. How often does the pain interfere with your appetite, mood, energy, relationships etc?
  9. What medications (and doses) are you currently taking?

 

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9. History of the Pain and/or Symptoms

If this is your first pain management appointment then you will probably be seen by a Doctor who will fully assess you and your pain. Not only will they listen to what’s been going on, injuries, pain, signs and symptoms but they will also assess your mood, sleep, emotional well-being as well as how your pain affects your daily life.
Tell the Doctor all that has gone on regarding your pain and/or symptoms. Tell them all your pains, signs, symptoms and even if you’re not certain whether to mention something or not, mention it as it may be of help to the pain doctor. Show them your photos of different signs and symptoms. Give them a copy of your pain Diary if you’ve got one.

 

10. Medication and Results

Give the pain doctor either a list of your current medication or a copy of your current prescription along with any x-rays, scans or results of tests you’ve had done previously in regard to your current pain problem. Don’t forget to tell the Doctor or give the Doctor your list of over the counter, homeopathic, Chinese Medicine, vitamins, supplements, ointments, creams etc.

 

 

Receiving your first pain management appointment letter can give you mixed emotions all at once. Our blog, 18 Tips Preparing You For Your Pain Appointment, will hopefully help you get ready for the appointment to ensure that you make the most out of your time

18 Tips Preparing You For Your Pain Appointment – Tips 6 – 10

 

11. Pain Questionnaires and Pain Scale

During your first pain management appointment you will be asked numerous questions about your pain, your life, signs and symptoms, sleep, daily activities and how would you rate your pain levels. You may get asked questions such as:

  • where is your pain
  • what type of pain is it i.e. burning, stabbing, gnawing, aching etc…
  • what can/can’t you do because of the pain
  • what your sleep is like
  • how would you rate your pain on the 0-10 Scale – The CRPS pain that people feel can vary quite widely. Doctors tend not to believe that patients can be a 10 on the scale. They believe this can be an exaggeration. 10 being absolutely unbearable and 0 being pain free. Be realistic but don’t exaggerate.

 

12. Physical Examination

If this is your first pain appointment then you may have to go through a physical examination so the Doctor can assess your signs and symptoms whilst you are there in the appointment. To diagnose Complex Regional Pain Syndrome will require a doctor actually looking for various signs and symptoms according to the Budapest Criteria which is the way that Doctors actually diagnose CRPS.

 

13. Diagnosis & Treatment Options

After the pain Doctor has gone through everything with you i.e. your medical history, history of the problem, signs, symptoms, concerns, medications, previous treatments etc. they will be in a position to hopefully go through a probable diagnosis and subsequent treatment options with you. If you are diagnosed with Complex Regional Pain Syndrome (CRPS) the Doctor will use the current country’s guidelines for treatment options. Please visit Burning Nights CRPS Support page on CRPS treatments for further information about treatments.

 

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What else do you need to remember at the appointment?

Obviously the pain specialist will have a certain list of things they will want to get through and ask. However it is very important to remember that it is also your appointment and you may not have understood everything that has been said. Taking on board the tips that we have mentioned in this blog is ideal as you will have focused your mind on what you need to remember to get through in the appointment. If you have brought a friend with will also help you remember what you need to at the appointment. Other things you need to remember are listed below from tip 14 – 18.

 

14. Ask What You Can Do Whilst Waiting For Your Next Appointment or Treatment

After you’ve had your physical examination and gone through all of the doctors questions, you can ask the doctor what you can do whilst you’re waiting for your next pain appointment or the appointment for your treatment to start i.e. what self management options are there.

You could ask if there is anything that you should be doing in terms of keeping your limbs moving, desensitisation or other alternative therapies such as deep breathing, mindfulness meditation, mirror therapy etc.

You could also ask to find out more about psychological therapies to help you with any mental health issues you may be having such as depression, PTSD.

 

15.Ask For Clarification

You will most likely receive a lot of information, some of which will be confusing especially if it’s your first pain appointment. If you don’t understand something or you miss what the doctor has said, don’t be afraid or embarrassed to ask the doctor to repeat it or ask them to explain something. Don’t be tempted to note it down and think that you’ll ‘Google’ it later or that it doesn’t matter that you’ve missed what the doctor said. Please remember that it is your pain appointment and it is important that you understand what the specialist is saying and what the plan is for your treatment.

 

18 Tips Preparing You For Your Pain Appointment - Tip 15 - Don't be afraid to ask the Doctor for clarification or ask them to explain something. Don't be tempted to "Google" it later

18 Tips Preparing You For Your Pain Appointment – Tip 15 – Don’t be afraid to ask the Doctor

 

 

16. Ask Your Questions & Note The Answers

You have hopefully brought your questions or concerns in with you on a sheet of paper including a copy for your pain specialist. You’re going to be given a lot of information and replies to your questions therefore it’s important that you note down the answers to those questions or concerns. If you’re not able to do that, don’t forget to ask your friend, relative, carer or partner to note down the replies to your questions or concerns. It’s important that you ask your questions at the appointment rather than thinking that the question is ‘silly’.

If it’s the first time at a pain appointment, don’t forget to make sure you fully understand what the treatment plan is for you. It’s very easy to let all your other questions and points of concern run away with the conversation and either not hear or not receive a plan of how the pain specialist plans to treat you. As we’ve said above in Tip 15, if you don’t understand something that the doctor has mentioned, stop them and ask them to repeat what they’ve said or ask them to explain it to you. You need to be happy when you leave the pain appointment that you understand what has been said.

 

17. Ask To Be Copied Into Correspondence

You can ask to be CC’d (or copied) into the correspondence from the pain specialist to your GP or your referring physician. If the pain management appointment was your first one then this letter should tell you your diagnosis and possible treatment options. If this wasn’t your first appointment then the letter to your GP will explain what was said in the appointment and what the next plan is. If you forget to ask to be copied into the correspondence, take a look at the Burning Nights CRPS Support recent blog post on how to access your medical records.

 

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18. Future Appointments

The pain specialist will have explained how they plan to go forward with your care. If in doubt ask the Doctor when you will receive future appointments and ask how long will you be waiting on the list for either treatments that they’ve talked about or the waiting time for your next appointment.

 

Conclusion

Making sure that you are prepared for your pain appointment is important whether it’s your first pain management appointment where you’re searching for answers, or it’s your 50th pain management appointment where you’re looking for any new treatments or research for example. We hope these 18 tips on preparing you for your pain management appointment have helped you understand more about what will happen and what sort of information you need to take with you. Why not share your tips on preparing yourself for a pain management appointment by making a comment in the comments section below?

 

 

Receiving your first pain management appointment letter can give you mixed emotions all at once. Our blog, 18 Tips Preparing You For Your Pain Appointment, will hopefully help you get ready for the appointment to ensure that you make the most out of your time. Tips 11 - 18 are to help you after you've had the physical examination and what else you need to remember to do, say or find out

18 Tips Preparing You For Your Pain Appointment – Tips 11 – 18

 

Resources

 

Written: 23/05/2018

Last Updated: 29/05/2018

LET’S SPREAD AWARENESS of CRPS! Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)

 

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Max Sayer Reply

    I have an appointment coming up and I wanted to look up some information to get the most out of my appointment. I really appreciated how this article talked about how there is no right or wrong set of questions. This is very helpful I will have to come prepared with a few questions that I have.

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