Ongoing pain :(

Hi I’ve taken anti inflammatories for years  at a time  had no choice with level of pain I had. Hopefully the Demards with work well enough so you can stop  taking them or just take them now and again as needed 

The only time I call the specialist nurse or doctor is when I flare and the pain is unbearable  and I need injections or steroids ..I have had this for half my life now  I too am on hydrochoraqine  at the moment it’s one of the gentler demards you do have to stick

With them though  25 years of taking tablets every day can get you down a bit .. but on the bright I still work in construction so they do work 👍

Hi Susan. Don’t live in pain, it just makes everything harder for you and those around you. While the anti-inflammatories and pain relief will do nothing to protect you from the damage RA will cause to your joints, they let you get on with things.

This nighttime shoulder pain is a familiar memory to me, along with hands and feet - mine has eased completely with successful DMARD response. I struggled with that and a lot of fatigue. I don’t know where sleep-loss ended and fatigue began! Sadly I am not sure I have any magic advice on the night-time pain, except to get your doctor’s advice and double check with the pharmacist. NSAIDs and pain relief might help you keep moving, which helps you stay fitter and stronger and retain strength as the disease activity comes and (hopefully) goes.

If your RA is not responding to your current DMARD, and you feel worried about the level of pain, swelling, or any other symptoms, Tell your rheumatologist, or if available other clinic support such as a specialist nurse. The set-ups vary around the world, so the path for treatment varies depending on where you are.

If things for you are changing a lot, regarding your RA symptoms tell your specialist. If you have other health factors that need to be considered when taking pain and inflammation drugs, obviously they matter. If you are otherwise healthy, your doctor might prescribe more frequent dosage. No Dr wants you to come to any more harm. “Weeks at a time” of NSAIDs and pain relief are completely reasonable in the context of RA. With the NSAIDs and pain drugs, they are often most effective with sustained use. If you just wait until you’re bad, but then stop when you have relief, you are not necessarily using them to their potential.

In my case I found ways to get gentle exercise - aquajogging helped me with the kind of things you talk about. Although I set myself a harder level of effort than I see some plod along at. Do what you can cope with when things are bad and it’ll help you to loosen up. Maintain a more demanding level and try more things when you have reduced symptoms to build more strength. Exercise hugely reduces inflammation. Its all very well telling RA sufferers that, I know, but it is still true.

The problem with RA is that the RA doctors will prescribe and disperse meds for a chronic condition (which it is) and they may alter your drugs and of course you have the final say ,but what they are trying to accomplish is management of the chronic conditions.  Did they tell you to go off the daily RA drugs, dont think that is a good idea, it takes time to get these meds at a constant blood level by daily dosing.  Finally you should feel comfortable with picking up the phone and talking to doctor nurse or going into see doctor as much as necessary. This is not an easy condition to manage,takes a lot of back and forth. 

Good luck. 

After 15 years of psoriasis arthirits, first cousin to RA, or that's what the rheumo specialist said to me, and many different drugs many of which disagree with me, some make me itch, others have caused extreme blood pressure.

I am on a mix, or was of leflunomide, or arava, 10mg, MTX 35mg, I have had such a good response to diet my MTX has been dropped.

I have worked out my own salvation, just saw the specialist this morning, always use my ESR and CRP to gauge how I am going, and rheumo agrees, she shares with me my results.

I have dropped all gluten from my diet, potatoes, and tomatoes, (miss them), do not have celiac, have been tested, but it seems I am sensitive to above items in my diet, my ESR was 77, and now down to 41, which rheumo is very pleased at.

Is diet worth a try, yes I would think so, but do not go crazy, just eliminate one item at a time and see how you feel without said item, bread for me, feel the results within the same day, ie if I eat toast for breakfast, I know about it by 2pm in the afternoon, my shoulders are aching more, and its a reminder to stay away from bread no matter how much I love my piece of toast for breakfast.

 

Hi

Just do what works for you. I'm with John on this one, ive had RA for 18 yrs. Its a juggling act with the meds. I work for mysflf in building trade so pain management is possible and only you know when your getting mix right.

Take care

Gaz

Thanks so much to all of you for taking the time to give such detailed replies and advice. ☺️

I feel fairly confused about all of this most of the time as there seems to be no rhyme nor reason for a flare or increased pain and I am unclear as to how long I should keep taking NSAIDs and painkillers as a I don’t want to do further damage to my body. Your advice has reassured me and I have started taking the extra meds again this morning.

I have an appointment with rheumatology in three weeks, so I will explain all of this then and see what comes out of it. Although, I have to say, I wasn’t too impressed last time as when I asked what I could be doing to help myself and my symptoms I was told nothing, just keep taking the meds?!?! I don’t like the idea of taking so many tablets every day for the rest of my life - I still feel young to have this as i am only 39 years old. However, if that is the way it has to be then I will have to accept it. 

Thanks again for your help. It’s really reassuring when I feel so alone in all of this. 

Thats the thing your not alone, All of us on here at one time or another put our first post on and the reactions of others are allways positive and hopefully helpfull. One day at a time, stay focused, stay positive its what we all try to do.

Take care

Gaz

Susan , first time posting here.. I have had RA for 15 years.. we’ll diagnose 15 years ago but have had symptoms for a long time just couldn’t find the right doctor. I agree with all I’ve read. Keep moving if you can .. as soon as your pain level is low.. try to take a slow walk or stroll. Just until you feel your muscles warm up. Don’t push too hard at first. I’ve had two total knee replacements in the last 7 montages and having to slow down was horrible for my RA. Joints swollen , fatigue etc.. point is not moving like I was before was brutal on my joints... now that I’ve been through 3 months of PT twice I do feel better..

     I’m grateful for the new knees but it taught me movement in this disease is vital. I promise your head will wrap the RA as you become used to the meds and your body on the meds... not a fun thing to have but it is manageable.. will pray for you and all the other brave soldiers  in this group!! O I’m 65 with six grown girls and we are waiting for number 16 grand... life is full!!! And it can be enjoyed in spite of RA!!!