Hello, I’m in need of help and support

Cjones

Hi, my name is Caroline and I’m 62 and have been retired since January 2020. I was diagnosed with RA almost 12 months ago after months of pain in my hands which was also carpal tunnel. To say it was a shock is an understatement and I’ve been on a downward spiral ever since. What started as a very painful right wrist has now spread to both hands and wrists, both shoulders, neck and now I’m struggling to open my mouth as my jaw is painful. I’m waiting for a nurse to visit me to show me how to administer a miracle injection on a weekly basis. Not sure what it’s called but I’ve heard that they are very effective. I’m really finding all this pain too much to bear and mentally I’m at rock bottom. How do people cope with so much pain, I can’t stop crying and feel utterly helpless and exhausted as not getting any sleep now for weeks. Is this a “flare up” that I read about or am I going to feel even worse as each day goes by?

advice and support would be most welcome.

Sharon_K

Hi Caroline

welcome to the community, it sounds like you are having a rough time which is perfectly understandable being new to this arthritis gig and experiencing so much pain. Yes I think you can safely say you are experiencing a bad flare up. The positive news is that right now you just need to go with the flow and be kind to yourelf know that things will change. Of course I am not medically trained and I don't have a crystal ball but this certainly sounds like a bad flare, this is not forever and with medication things will improve. I have no idea what your injection will be? What treatments are you currently on? Personally I would try to see this as the start and may not be exactly the right treatment straight away. Try to stay realistic and very honest with your health care team. What painkillers are you on at the moment. Also if you can get help from friends and family now is certainly the time to ask.

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

Please let us know how you get on and what your injection is. We are here for you

gentle hugs

Sharon

Cjones

Hi, thanks so much for replying. All this technology is new to me so I did wonder if I had done it correctly. My painkillers are naproxen twice a day and cocodamol 4 times a day, RA tablets are lefludamide (I think). Recently my GP has given me liquid morphine and patches but didn’t make any difference. Yesterday and today I’ve not been able to move my hands or arm’s because the pain is so bad, I do have a physiotherapist appointment tomorrow at my GP’s to work on my shoulders but what I want is the pain relief injections to numb the pain. I had an injection at the RA clinic at the hospital 3 months ago but it made no difference at all so I want to go private for any future injections as I want to have a really strong dose that’s going to work.

I’ve just left a message at the hospital saying I need to see the nurse as the pain is out of control and I’m not getting any sleep for weeks now, I can only manage 20 minutes at a time before I have to move.

i will look at my hospital letters to see what these injections are called I’m waiting on but I have heard they are a miracle for most people.

Thank you again for chatting, I’m so fed up and feel so alone in this situation it’s good to get positive feedback, kind regards, Caroline

jamieA

Hi @Cjones

I think many of us have gone through the same initial period before the right medication kicked in. In the meantime it might be worth asking your rheumatology clinic if you can get steroid injections or a course of prednisalone oral steroids. They certainly helped me during the time it took for the medics to find the right drug that worked for me. I wasn't happy taking strong painkillers like morphine and dihydrocodeine but they certainly helped in the short term. You could also ask to be referred to a pain clinic if your local health authority has one as well as asking to be referred to a rheumatology physiotherapist. An occupational therapist might be able to help as well.

Moira

I would agree with Jamie. I found the OT at the hospital wonderful and have splints I put on when necessary. She also gave me exercises to do that are targeted.

Physio exercises I also find helpful when I am particularly sore (I'm in pain all the time but have got used to it as I don't want to get hooked on strong painkillers - I do use them when absolutely necessary.) The ones here on VA are really good.

A referral to a pain clinic should also help. It is a matter in finding which are the systems that help you most. Each one of us in an individual. It took me a while to get the balance right with medication and exercise.

I read with envy those who can run. I'm afraid my running and indeed dancing days (contemporary ballet and Scottish Country Dancing) are well and truly over. But then I can dance in my head!

My thoughts are with you and I hope you can get a combination of treatments that will help.