Living with polymyalgia rheumatica and giant cell arteritis
Perhaps the most frightening feature of PMR (polymyalgia rheumatica) is the sudden onset of severe and often incapacitating stiffness, usually after a night’s sleep when unable to get out of bed.
When diagnosed with PMR patients learn that the illness is likely to last for at least a couple of years, and steroids are the only effective treatment.
GCA (giant cell arteritis) can be equally frightening, with sudden and severe headaches and the possibility of severe visual loss.
PMR and GCA are relatively ‘unheard of’ in the general community and those diagnosed usually know of no-one else suffering from it.
There is a growing network of support groups around the country. Groups are run by volunteers, most of whom have or have had PMR or GCA. They meet regularly through the year and keep in touch with local people who may not be well enough to attend meetings. For a list of groups and to find out whether there is one in your area, click here. We are interested in developing new groups, so if you would like to be involved in a new local group start-up, please let us know straight away.
Although support groups operate independently, they offer similar things:
- Response to telephone and email enquiries.
- Help, advice and support for people with PMR and GCA, their family and carers.
- Time to listen to, encourage and support people.
- Sympathetic ear and reassurance.
- Information on PMR and GCA, medication, diet, etc.
- Regular meetings for people with PMR and GCA, their families and carers.
- Details of contacts across the UK.
- Newsletters keeping members abreast of new developments, forthcoming meetings, etc.
- Informal meetings to share experiences and have a chat over refreshments.
- Guest speakers at meetings, ie rheumatologist, ophthalmologist, dietician, etc.
We launched the telephone Helpline at the beginning of 2011. Currently we are getting about 50 calls a month on our dedicated number 0300 111 5090.
We also receive emails to firstname.lastname@example.org every day from people asking for information and support. Often people just want to be listened to by someone who understands what they are going through. Sometimes we can help them by helping them work through a topic they need to discuss with their doctor; and sometimes people are calling or writing because they are worried about a relative and want to know more to be able to help them. Calls cost the same as a normal landline call and the helpline is staffed by volunteers who give their time freely.
When you have just been diagnosed with PMR or GCA it can be confusing dealing with the illness and the medication. We provide a free information pack to anyone who would like to know more about PMR or GCA. It contains useful leaflets published by Versus Arthritis, our newsletter, information about steroid treatment and tips for living with these conditions.
If you would like a digital or a hard copy see our Information Pack page.
Looking after yourself
Your diagnosis of PMR or GCA may be the first time you have ever had to face the prospect of a long-term illness. As well as coping with the shock of finding out you have something you had never heard of, you have to come to terms with going on medication for several months at least.
- Get informed. Send for our information pack and join PMRGCAuk as a member, to ensure that you receive our regular newsletter, NewsWire. Share the information with people close to you who can give you support on your journey with PMR or GCA. If you have PMR, make sure that you know the key symptoms of GCA, and report any unusual headache or jaw pain to your GP immediately.
- Find out whether there is a support group near you. It can be encouraging to meet another sufferer face-to-face.
- If you would prefer to join an online group look here.
- Join our web forum on HealthUnlocked. Here you will “meet” many other people with whom you can share your experiences and thoughts, and give support to each other.
- Accept your condition (this can be hard).
- Love yourself. Forgive yourself. Be kind to yourself. In becoming ill with PMR or GCA you had some bad luck. Something caused your immune system to go out of balance. Whatever that something was, there was nothing you could have done to avoid it. Don’t beat yourself up about being unwell.
- Don’t be a martyr to chronic pain. This will not help you to recover. Talk it over with your doctor.
- Believe that you have every prospect of making a full recovery, although it will take time.
- Keep a diary of your symptoms. This will help your doctor or consultant understand the progress of your condition and help with decisions about tapering medication, pain relief etc.
Meanwhile, there is a lot that you can do to help yourself by keeping physically active and having a good level of nutrition. Even when it is ill, your body is a miraculous creation that deserves looking after!