HoG Handbook

Managing Pain


man in painMany people with hemophilia have pain caused by the complications of hemophilia.  The pain may happen only every once in a while, like the pain caused by a bleed.  On the other hand, the pain may be all the time, such as pain from arthritis.  Having dental work or surgery can cause pain, too.

Your comprehensive care team at the HTC can help you find ways to deal with the pain.  For instance, the physical therapist can advise you when to use ice or splints.  She or he can also help you plan exercise routines for pain relief.  The orthopedist (joint doctor) can tell you if surgery will help.  Your hemophilia doctor can work with you to find the most helpful medicines to take.  Letting them know which methods you prefer can help them plan your treatment.  They may be able to suggest ways you did not know about to ease the pain.

Lately, there has been more interest in "alternative" ways of controlling pain.  These are ways to reduce the need for pain medicine.  Relaxation skills, hypnosis, and biofeedback are some of these methods.  These methods do not take the place of medical care.  They are a way to manage pain, not a way to avoid taking factor.  Alternative methods of pain control have not been shown to change factor levels or bleeding times.

If you wish to learn an alternative way of controlling pain, your HTC can refer you to someone trained to teach you.  Be sure that anyone who teaches you pain control skills understands hemophilia.  You may find that none of the methods works for you or that what works one time may not work another time.  Some of the methods take a lot of practice.  Some of them are easier for children than adults.

The American Chronic Pain Association (ACPA) is a non-profit organization that helps people suffering with chronic pain through education and support groups.  They offer training in skills to deal with pain.  To learn more, visit their website, https://www.theacpa.org/.

If you decide to use acupuncture, acupressure, or visit a chiropractor, talk to your doctor first.  Involving the staff at your HTC in all parts of your hemophilia treatment is the way to make sure you get the best care and avoid problems.

You may not be able to relieve all pain without taking medicine.  The point is to try other options first and take medicines as a last resort.  If you can take care of your pain without medicine you will gain more control over your life.  You will be able to help yourself at any time or place.  If you can lower the amount of pain medicine you need, you can save money.  You can also reduce your chances of becoming dependent on medicine.
If you do need medicine to control pain, learn which medicines are safe to use and how to use them.  There are different types for different kinds of pain.

Pain is not something you have to accept or simply learn to live with.  First, talk to your doctor and find out what is causing the pain.  Next, focus on how you can reduce it to the point where you can get on with daily living.

Here are some questions you might ask yourself as you begin to deal with pain:

  1. What might be causing the pain?
  2. Does the pain slowly go away after taking factor?
  3. Are there any other symptoms?
  4. Does the pain come back often in the same place?  (If yes, ask your doctor about the possibility of arthritis.  You may need to take anti-inflammatory medicine.  Discuss with your doctor whether or not you need preventive (prophylactic) factor treatment.)
  5. Am I already taking pain medicine?
  6. Does the medicine relieve my pain?
  7. Have I had to start taking more pain medicine? (If yes, talk with your doctor about your symptoms.  You may be building up a tolerance to the medicine.)
  8. Can I do something else to relieve my pain?