Dr Child's Pain Management Casebook

Our new weekly theme continues apace as Dr Child counsels from her ‘remote’ consulting room, responding to our busier-than-ever helpline. Of the many conundrums confronted over the past week she has chosen to present a consultation on pain and pain management. Pain is an unfortunate symptom of Marfan syndrome and one that we recently tackled on Facebook in conjunction with Fatigue and Depression. As ever, we have anonymised the names of the individuals to protect their identity.

Q: I'm contacting you on behalf of my husband who has Marfan syndrome. He's been described as a textbook example: he's 28 years old and has had successful open-heart surgery (the David procedure), he has vision issues, he has acute scoliosis, is 6’11” and has an inverted chest. He's experiencing severe pain and twitches in his hips/legs/wrists/ back which are Marfan-related but we're really struggling to get help with this. He went to the doctor who referred him to a physio but unfortunately the physio had never heard of Marfan syndrome and didn't understand how the condition relates to his aches and pains, and kept trying to diagnose him with sciatica. 

Therefore, I was wondering if there's any way in which you would be able to point us to some physiotherapists or in fact anybody who knows about Marfan syndrome and may be in a better place to help? 

A: I’m sorry to hear of your husband’s problems but they are very common in  Marfan syndrome. We have an info leaflet on the topic on our website Musculoskeletal problems in Marfan syndrome“  if you care to print it off for you and your doctor.

Basically the joints are poorly supported, and this puts a strain on joints, tendons, ligaments which causes pain, and jerking/spasms of strained ligaments. The treatment principles are based on:

Your GP can provide a referral to a rheumatology department locally, who should have access to physio-therapy, where advice on posture, gentle strengthening regimes (including stretch and massage), and suitable activities can be provided.

Supports for joints to include back, wrists and any other joint are available through the NHS or purchased from a sports goods shop. They should be worn during stressful activities to prevent strain, e.g. wrist supports when digging or playing badminton. A firm but comfortable mattress is important. Is your bed long enough? If not, I suggest you join the Tall Club UK and ask for a copy of their catalogue which contains advertisements for 7ft beds with duvets to match.

But for relief right now, ask your doctor to prescribe Brufen (Ibuprofen) 800 mg twice a day, with Omeprazole 10 mg per day to protect the stomach lining. This will damp down the joint inflammation.

If you are taking blood thinning medicine (warfarin) after your heart surgery, you will need to take your joint medicine regularly, then check your prothrombin time at clinic weekly until your warfarin level can be adjusted downward, since both medicines prolong bleeding time.

This should provide pain relief while you wait for your rheumatology appointment. If nothing seems to help, ask for referral to your nearest Pain Clinic. All features of Marfan syndrome are treatable. Try to find the best treatment for you. I hope this is helpful.



Dr Child's Pain Management Casebook
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