Epidermolysis Bullosa is a condition that causes pain, however, a different course of treatment and medical interventions such as popping up blisters, dressing change, surgery etc. can cause additional pain. It is important to Identify the underlying cause of the problem first and act accordingly.
Pain caused by Dressing Change
Changing the dressing of an EB patient is a challenging task and requires adept skills. There are high chances of damaging the preexisting wounds or creating new wounds, making it difficult for them. So, all dressing changes should be done within a minimum time frame and as pain-free as possible
- The dressing should be soaked in paraffin and clean water one hour before changing.
- If dressing change causes pain, incorporate the need for medication (Panadol) and alternative therapies (psychological measures, distraction strategies).
- The person changing the clothes should be self-assured, and work quickly with a set routine.
- Don’t use adhesive bandages or dressings.
- However, designated materials may also not suitable. This is because the best dressing materials can stick due to dry wounds, drying of creams, and ointments.
Pain caused by Wounds & Blisters
Wounds exposed to room temperature are much more painful than dressed wounds. Accordingly, the dressing changes should happen quickly. Identify the blisters and pop them with a needle. Carefully pop the blister with the hand avoiding pain. Don’t peel off the roof of the wound/blister as it helps in rapid healing. The pain is due to the pressure exerted by blisters made on the surrounding connective tissues, muscles, and bones.
Remove and redress them in the following order
- Arm (1st Right Arm, 2ns Left Arm)
- Legs (1st Right Leg, 2nd Left Leg)
The dressing should begun from the arms to the legs side.
Pain caused by Infection
Open wounds can be painful. After puncturing the wound, cover the underlying skin with appropriate dressing. The wound can become infected or inflamed.
Warning signs for inflammation are pain, redness, heat, and occasionally honey-colored scab with the presence of pus.
Do not take over the counter medications without medical supervision.
Pain in the Stomach & Intestine
Stomach pain can be caused by bloating and inflammation, pain due to constipation, and very hard stool. Constipation can also cause anal fissures, where wounds can develop on the rectum/opening of the back passage. Injury to the mucous membrane can also cause pain in blisters and open sores in the mouth. Biting, chewing, and swallowing can thus be associated with pain.