Wow! Thanks to all who have posted replies to my query. My Mum has been on many medications for this disease and has other health problems e.g. heart failure and diabetes. She's had replacements of two hips and a knee. She is the proverbial 'creaking gate'. I hate to see her in so much pain and so debilitated but until receiving all your replies knew of no-one with whom I could discuss this matter. I phoned the NRSA helpline on Wednesday and spoke to two lovely people who gave me some good pointers for future appointments with Mum's consultant. Up to the past four years Mum has been able to attend appointments on her own but I now take her. (No mean feat as I live 160 miles away and have a severely disabled son living with me). I have managed to get a consultant's appointment for this Tuesday so will go armed with the many helpful suggestions you've made. Mum is of the generation to underplay the severity of the situation, smiling graciously at medical staff in appointments so I have to be there to monitor this. Also, I have the impression that there's so much pressure on hospital staff to move on to the next patient that they cannot possibly get the whole picture in the time allocated so know I have to be succinct. Cheers all.
Chronic RA----86 yr old Mum: Wow! Thanks to all who... - NRAS
Chronic RA----86 yr old Mum
Best of luck x
Sounds like it’s going to be an interesting appointment...but if you don’t make your Mum’s rheumatologist aware of her true condition he will just presume everything is going well.
Does your Mum have a named rheumy nurse? If not maybe that could be arranged,& maybe depending in the area she lives some transport for physio or future appointments could be arranged.
I do hope you get something satisfactory sorted out.
I'm so glad you have been able to get some pointers from the helpline and for all the support from the posts on this site. My mum would have been a few years younger than your mum. She was diagnosed when she was 28 and like your mum suffered with pain and inflamation over the years, as I think in those days they did not have the range of medicines/ resources available and if I'm honest I attended a lecture some years ago, where a retired professor who worked in rheumatology admitted they were not as clued up as people thought back then. Again my mum simply had to get on with it and took the pills (some of which clashed with other medication). She too would underplay her pain despite having other illnesses and health problems. I also hear what you say about the time slot given and how you will have to be succinct to be able to get across what you need to. I very much feel the same when I attend my appointment and sometimes feel unheard. So I wish you well and hope you get some answers and a way forward in your mum's pain and RA. Take care
Good luck darling and it will be a great help for your mum jto have you with her.xxxx
It will really help for her to have someone with her. One of the 'tests' you get routinely is DAS scores where the doctor squeezes the joints on your hands and tries to measure your pain/discomfort levels. I have difficulties with this, but it can determine how seriously you're treated. So its important to watch her reactions and possibly if you can, go over how she feels. They often ask on a score of 10-1 to register your pain, so again its worth checking that before the appointment.
There are amazing new treatments, mainly biologic injections or infusions. Not everyone with bad rheumatic hands can manage the injections, the infusions will involve a trip to hospital to a day unit. Whatever one's age you do have the right to the best treatment to help you live a life without pain. I really hope things go well for her appointment.
My mother had RA from the age of about 50 and it was so difficult.
Go along with a list of topics you want to discuss, print the topic in bold and follow it with a brief question. Put the most pressing things at the top. Don't make it look too long. Sorry if I'm teaching you to suck eggs! I hope things go well.
At your mother's age the generation of, and ability to work with, various enzymes and amino acids will not be as good as 30 years ago. You might investigate the worth of using the Solgar Female Multiple vitamin/mineral supplement to assist.
Recovery from Lupus & RA & Fibromyalgia
Off topic- you only get one Mum
Ra sufferer
