I really did not know what real pain was like until I came down with RA 19 months ago. I am rated as severe and now also have Fribromylagia which is just as painful. The trick for me runs via three vectors. The first is to control the pain so that I can sleep at night. This minimises depression. The second is to learn pain control meditation. This works 50% of the time. The third is to do mild exercise. A good walk, a cycle ride or a little gym. I am currently caught in a massive flare and have been to hospital but it always comes down to the same thing - controlling the pain.
The "pain toll" on the patient is often depression but the toll on my wife is huge too. She has little choice but to sit there and watch, feeling very helpless. My wife is very concerned about the future. There are no medications for her. We need to care for the carer! MikeView Thread
I know exactly what you are going through. I am 58 and have had severe RA for 19 months now. What An_246765 says makes a good deal of sense. I would add the following. The first year will be hard and confusing. Once your doctor gets you reasonably stable things will improve. I suggest that you TAKE CONTROL of your RA by changing your diet, taking your meds, researching your condition, take up meditation and your must do regular exercise. I would replace wax treatments with a goos pair of gloves.
I have been through all the conventional drugs and they all have negative impacts. I am now on Humira and Avara and am now much happier although flares do happen. Looking back over 19 months I would say that the medications are key and so is exercise. Diet change helps to minimise negative drug impacts and meditation helps with pain control. I have been on Oxycontin for pain all this time and am now trying to get off it.
Feel free to contact me if you need. Yours from Sydney Australia, Mike
Hi Everyone. I have been taking Prednisolone for 18 months now with a dose range from 40 mg to 4.5mg per day. I have tried ten times to slowly get off the drug but when I get close to 5 mg things seem to go wild with flares and pain. I am currently on 10 mg along with other drugs like Arava and Enbrel. Does anyone know:
1- how to replace Prednisolone with a substitute less harmful drug?
2 - how to break the 4.5 mg barrier
Prednisolone and its friend Prednisone is an awful drug with very nasty long term side effects. Thanks, MikeView Thread
Yes, lost my job. I am fairly serious re my RA. Without drugs I am not able to walk more than a few steps so I have no intention of stopping my drugs. Yes, the drugs are heavy and dangerous but what choice do I have. A shorter better quality of life is better than a longer more painful one. I life in Sydney Australia and we are in winter here. The cold really brings on pain. Next year we will probably winter in a warmer part of Australia.
SureHope, great links - thank you. I will look at these progressively.
Sjogens is were your eye and mouth start to dry. It can get worse. Look it up on WebMD.com .
Failing to leap out of bed in a fresh and energetic manner Having to reduce my cycling from 80 kms a day to 3 km a day Difficulty in predicting my health status a day ahead Being unable to guarantee turning up at a dinner party Being hit with fatigue at any tick of the clock Occasionally going to a dark depressive hole Love-making can be almost impossible without careful planning, nothing carefree there Constantly taking tablets Seeing how hard it all is on my wife Brain fog and rotating pains reduce a good day The loss of what was!
Thanks SexyRAgirl for your fun and determined reply. Interesting your RA start was almost identical to mine - very sudden where everyday life crashed heavily. The first 12 months were awful.
I too try and fight back with: - internet research - useful web tools - major diet changes along the lines you outlined - meditation for pain. Really works well for 50% - exercise every second day - work with my local RA society - lost my job but now enjoy doing charity work part-time just to keep engaged.
I have a great rheumatologist and was stable until three weeks ago for a few months. I am now in trouble again and have developed Sjogen's Syndrome. Pain in the ass! Big challenge is to get stable so that I can capture the day and rip in to life. MikeView Thread