Many times, health care professionals will not understand where your pain is coming from. They may say phrases like “but you’re very flexible” and “you’re strong, so we don’t understand why you’re in pain.” This can be extremely frustrating as you work towards finding a solution. Before we get to how to manage this pain, it is important to understand why people with hypermobility have pain:
When we have a normal joint, we have the bones, and we have ligaments around the joint that help keep it in place. Then, we have postural muscles. These muscles are designed to work at a low intensity for a very long time, controlling our position in space. Then our bigger movement muscles come next. These bigger muscles contract and relax in order to give us movement.
People with hypermobility syndrome suffer because there is excessive movement at each level of the joint, all the way from the ligaments up to the movement muscles. Those deep stabilizing muscles are now working overtime as dynamic muscles, rather than ligament stability. Then, all of the load ends up on the bigger movement muscles. These muscles are designed to contract, then relax, not stay working for long periods of time. So these muscles begin to ache, trying to tell your body to stop putting so much pressure on them! So this pain is coming from a more complicated source than just an injury, throwing off healthcare professionals who may not understand the ins and outs of hypermobility syndrome.
The important thing to remember is you can live a pain free life! Early treatment for your pain is always more effective. So, as an active participant in your health care, think about taking the following steps to manage your pain:
Inform your doctor or nurse that you are experiencing pain. Don’t wait to be asked! Pain should be evaluated at every visit.
Keep a diary of your pain – where it is, when it begins, when it peaks, when you take medications, and what helps relieve the pain.
Be precise when describing your pain. Use words like sharp, radiating, aching, pounding, prickly, tight, deep, stabbing, dull, pinching, and tingly.
Report the severity of your pain. On a scale from 0 to 10, where 0 is no pain and 10 is the worst pain you can imagine, how would you rate it?
Take your medication exactly as prescribed. You may be taking several medications. Be sure you understand when and how to take them, and report any side effects – they can be helped.
Know how to reach your doctor or nurse after hours, and when you should contact them. For example, severe pain should be reported right away, not at your next appointment.
Be sure that a physical therapist is a part of your healthcare team. They can help you understand the causes of your pain and work towards it’s relief with less dependence on painkillers.
Use the same pharmacy. They will know what pain medicines to keep on hand and can answer questions about the medicines and side effects.
Consider non-drug interventions that might help you, including distracting yourself, relaxation techniques, use of heat and cold, massage, and light exercise.
Consult members of your health care team (nurse, social worker, and physical therapist) for help in these areas.
The Most Important Thing to Remember: Pain Can Be Relieved.
There are many options for you and your doctor to choose from when trying to control your pain, such as different dosages, medication combinations, changing medications, or routes of administration.
If one is not working, communicate with your doctor and find about the other choices you have. Remember that you are the expert on your pain, and you have the right to have your pain acknowledged and relieved.
By following these strategies, you and your health care team can become effective partners against pain.