I have very sever RA and am on biologic medications. Nine weeks ago I had a TKR. The post operation experience was very smooth if not almost enjoyable. I did get three DVT's which were treated successfully without drama. In hospital after surgery for five days then transferred to a rehab hospital for two weeks. As my surgeon said: the operation is 40% of the success with physiotherapy being the other 60%. How true was this!! I have had 40 hours of physio and can how walk well, ride a bike, climb stairs and walk in soft sand along a beach. I have no pain and am very pleased with the operation. I had knee problems for six months before I opted for the operation. This was a good move as it meant my leg muscles had not learnt how to over correct a faulty movement.There are a lot of negative stories around so I wanted to add a positive one for a change! All the best.View Thread
Hi Retired9207. My severe whole body RA came on suddenly too - Christmas Day. Life has been a mess ever since although things are better now. The first year or two is a complex, painful and a difficult journey for you and your wife. Read and research all you can about the disease. Make sure you have a rheumatologists and not just a GP. For eighteen months I saw mine every two weeks!! Rethink your physical life as you may well have to slow down. My RA factor was over 1,100 and still is!! I am on biologics now after two failed attempts and things seem more stable. Unfortunately the drugs are big, complex and with side effects. These have to been considered too. Going forward consider pacing yourself, keep close to your wife, be kind to yourself as much as you can, consider changing your diet and use the support groups like WebMD. Happy to answer your direct questions. MikeView Thread
I understand exactly how you feel. I am often in that particular boat as well. It just gets too much and the onset of depression is very dangerous. The unending pain is awful. I endorse all the comments made by the others and would add:
- you are the captain of your boat. Navigate the sea. - go the high tech drug trail. I have and it helps a lot but it does stretch out the suffering due to side effects - be nice to yourself every day - when you are down get as much distraction as you can. I find this helps a lot - consider changing your diet to one that is not inflammatory - relie on your friends and family
Smile a little and enjoy a good moment whenever you have it. Take care. MikeView Thread
Hi ajh7310. I too have muscle and tendon pain of two types. One is a shooting sharp pain and the other is a rotating more generalised throb. Once I got the main joint based RA under some control via a biologic called Actemra the soft tissue pain then dominated. I discovered that Lipitor, the anti cholesterol drug, caused all of the shooting pains. Now stopped it and that type of pain has gone. I address the throbbing pain with varying degrees of success using Panadene Forte. I used to take lots of Oxycontin but the docs are not keen at all for me to restart as it took three months to get off.
You must address your pain and not let it continue. This is vital for your well being as pain can become a condition in and of itself. May pain is worst at night, upper arm muscles, hands and knees. I often sleep with gloves and socks on. Helps as any cold areas on my body get sore during the night.
You are a great supporter. What you describe about your husband fits my illness profile almost exactly. I doubt if I would still be here if it wasn't for my wife and her huge support. I am still in a mess, going on to my third biologic but here are a few thoughts to answer your question. First distraction - doing a few fun things together. Today we went to the cliff tops to watch the rolling waves. It was great. Second - make a few of his close friends really aware about his condition. Friends who call or visit are just wonderful. Third - help him manage his medication which at times can be confusing. Fourth - just be there. Fifth - try and be there for the really black dog days when depression sets in. Pain, a lack of sleep and depression are partners which seem to visit every now and then. If your husband wants to chat online, feel free to reach out. Mike from Australia!!View Thread
I have severe RA and since it started two years ago my taste sense is also out of whack. I just live with it. I know Pednisone will do this but also RA. If you can get off Prednisone things may improve a lot. MikeView Thread
Hi There My RF reading is 1032, yes 1032. RF readings are general readings about rheumatoid activity. The other blood results are much more important. I also have Fribo and the dry mouth/eye disease with a funny name. Welcome to the club! Forget about the gold shots. There are a variety of powerful and new drugs around. You will be OK but it is very important that you have a rheumatologist who you see regularly not just a GP. Go on an anti-inflamation diet, exercise and modify your life to fit the condition. RA is a total pain ............ be positive and smile. MikeView Thread
Yes, I have had severe RA now for almost two years. I take Humira and Arava as the big guns. Much of the swelling has receded and about 50% of the pain. I am disparately trying to reduce Prednisolone and Oxycontin but I still have fatigue and pain. I think the chronic pain in itself has become a disease as my bloods are good. My specialist has suggested that I have Fibromylagia as well and this explains the rotating pains. You must address your pain otherwise it may well lead to bad depression. Talk to your doctor and ask him or her about 1) mindfulness meditation, 2) drug based pain control and 3) exercise. Best of luck. MikeView Thread
You asked some other questions. You probably should not be having the level of pain and type of symptoms if you are taking your meds correctly. If you are taking them then perhaps there are two other explanations. The first is that Embrel has ceased working and the second is that you may have another condition as well. For example, I have severe RA and Fibrolmylagia. Your specialist needs to run your bloods in some detail. I too lost hair with methotrexate but have replaced this with Arava so now the hair grows. The other thing that you need to be aware of is that chronic pain itself can be a condition/disease. I am currently having a battle in this space. Sounds like you need to get a referral to a Rheumatologist. Best of luck.View Thread