For many years, pain has been seen as an unavoidable part of living with a bleeding disorder, something you have to deal with, often alone and in silence. Family members are affected by the pain of a family member in a number of ways—emotionally, socially, academically, financially and spiritually, depending on the family situation of the person with the bleeding disorder.
It is important to treat bleeding episodes without delay as this will minimise the pain caused by internal bleeding into joints or muscles. Untreated bleeds result in excruciating pain and arthritic deterioration. Long term arthritic deterioration can lead to constant pain in a damaged joint.
Pain associated with a bleeding disorder is usually of two types:
- Acute pain is usually due to bleeding into joints and muscles and, more rarely, the after-effects of surgery.
- Chronic pain is associated with joint degeneration or other long-term complications of bleeding disorders.
The aim of pain control within the first few hours of a bleeding episode is relief of suffering. Unrelieved pain can actually interfere with healing and turn acute pain into a chronic problem.
With chronic pain control, there is the added aim of maintaining daily function. The final goal is a balance between the efficacy of pain relief, the side effects if any, and being as functional as possible.
People with haemophilia or related bleeding disorders need to be aware that pain is a manageable condition. It doesn’t need to be suffered in silence. Discuss it with your Comprehensive Care Team at your Treatment Centre and work out a plan that suits you.
REMEMBER: PEOPLE WITH HAEMOPHILIA OR RELATED BLEEDING DISORDERS SHOULD NOT TAKE ASPIRIN IN ANY FORM.
New Pain Clinic at the National Coagulation Centre (NCC) at St. James's hospital
The new Pain Clinic is run by one of the St James’s Hospital Consultants in Pain Medicine, supported by the NCC nursing, physiotherapy and medical team. The first clinic took place in June 2023. The NCC are pleased to announce that this clinic will be held at regular intervals on Wednesday mornings in the NCC.
If you feel that you might benefit from a clinical review with a pain specialist, please speak to a member of the NCC nursing team or discuss with the NCC medical team at your next clinic review.