NRAS
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New to this

Having been someone staying very active my whole life, this RA business has just been a shock! I was diagnosed Dec 2017.

My question is how good should I expect to feel on Methotrxate? I do feel better, however, I am totally exhausted ALL the time. Is this normal? One to two hours before bad pain and stiffness goes away in the morning, but I still feel achy in my joints all day. Is this what is called "low activity"? I'm definitely not my high energy self anymore. Many things just overwhelm me. I hate to complain, just not sure what I should be expecting.

They say working out is good, but working out when you are hurting can damage your joints. I've tried not working out, and tried doing low impact stuff. Truth be told, I force myself now to work out, walk the dog, take my grandchild swimming-because I never "feel" like it but I don't want to become a couch potato.

Any suggestions, help, wisdom from some of you whose life has always been very active would be so helpful! Do I push through as long as I can? Or am I making myself worse?

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You may need to adapt your exercise routine to the new reality....perhaps taichi or yoga rather than working out..I've bought an electric bike..it's wonderful!

Have you looked at non drug options to see if they might help your energy levels? Acupuncture, diet modifications, to name a couple. You'll find lots of good ideas on this forum!

Let us know what you try and how you get on.

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Hi,

I found I was exhausted on mtx and this lasted for a good few months. It gets better as your body adapt s. I had a very active life and struggled to let it go- I think this is true of a lot of people here. The thing I found difficult is the idea that you can't just fight through this illness- you fight it by resting and not over-doing things. Not easy when you're used to being on the go all the time and when the language around illness is 'fighting it' and' not letting it stop you etc' .The best advice I had was to plan more ie keep doing things, but plan in rests after/ have a day off if you know you've got to go out the next etc. I'll let you know when I fully manage it:-) x

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This has been the hardest for me. Not being able to fight my way through it and accepting I need to change my routines and how much I can now get done in a day. Still working on it. It's not easy. I've never been sedentary.

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Hi Lizzie - I agree - That had to be the hardest for me too (accepting my limitations) once I accepted that I really did have RA. I wonder how many of us were type A personalities, and if that had anything to do with the occurrence of the disease...

And I think it is a constant struggle over time because even yesterday, I overdid what I should have just "because I could". Then you pay the piper...

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Hi, I find tia chi helps and aqua motion at the local leasure centre and they are both with people who have RA so it is low impact and helps you to get moving. It is something you could try as everyone reacts differently.

Hope it helps you.

Sue

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Hi Julie,

I'm guessing you've been on MTX for 7-8 months? One to two hours of pain and stiffness every morning isn't being well controlled. I would let your doctor how long your morning stiffness has been lasting and how bad the fatigue is. He can tweak your meds a bit by either raising the dose of MTX or adding another DMARD I'm sure there's something he can do to help you a bit more.

I had a hard time exercising in the beginning before I was well controlled and there were some awful days but I always found something I could do.

Good on you for getting out there and walking your dog! I use to have a saying, "Walk your dog every day, even if you don't have a dog!"

Motivation to keep moving can be really hard after getting this diagnosis! Also knowing how much you can push yourself is tough too. Am I hurting myself? Am I helping myself? It gets confusing and frustrating. Perhaps you can get a referral to a physical therapist that can help you modify things you like to do or join a group class they recommend!

Everyone is different and it's always best to ask your doctor if you are doing damage with specific things you like to do but you may be happily surprised and get his/her blessing to keep pushing.

For me, my doctor strongly suggests I keep at it and let's me push through a little pain as long as it eases off after I'm warmed up and he trusts I now know the difference between crummy, no good pain, and uncomfortable, I need to warm up pain.

Motion is indeed lotion. It also keep me happy as I feel so much better!

Here's hoping you get better controlled and can once again do things you love even if modified and if that doesn't work that you find new things you can do that will keep you moving!

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Thanks, I'll try talking to my doctor. I just hate sounding like a winer! Thank you for taking the time to answer.

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Julie, you didn't mention how much MTX you're taking, if you're taking something else with it or for how long you have been at the same dose.

Its not only common but goes without saying that our meds often need adjusting.

It's not whining and all doctors want to know how you're doing so they can monitor you well and work with you to find better control.

I wish you well

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Hi

Welcome. I'm new too. Diagnosed a year ago . It is a big shock to the system isn't it ? I was working two jobs , one night duty , bringing up two teenagers, and doing things for both parents ...... I was also walking /jogging often (just before Dx I did a 30klm walk /jog ,.........now I'm down to one part time job (two days a week) , .....even that's pushing it on some days . Even then , I would be eyeing off a place to rest and have a little shut eye.

I'm not really exercising at all , except have gone for a few little walks of late. I saw my specialist last week , told him that I seem to be loseing a lot of muscle ....which I have , he just said to exercise more ..

I have bought an activity tracker , so I can try aiming for more steps each day ...

You have described how I have been lately .....as far as ? Low activity .....my specialist isn't really happy with that for me , so hence I have been on the plaquinal, Humira , and now about to start Enbrel soon ...my dr just said that we need to try more , to get more control......I guess to avoid the joint damage.

After I started Humira .....I kind of thought I didn't really have RA , I was that good .....but then the stiffness and pain started again , not severe , but each day I would get up and something else would be a bit sore.

Not sure if Iv helped u any .....hopefully you will get some good answers.

I have heard hydrotherapy is great , I would love to try it.

Just wondering if someone can answer...... is it the R.A. , or the methotrexate which causes the exhaustion. ? I never really had a big issue with the fatigue , until fairly lately . I have found it very confusing at times , even getting the right info from my dr on exercise.

Take care

Karen x

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Hi Karen - Mostly I think the exhaustion is the RA. It is just, unfortunately, one of the hallmarks of this disease...

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Thanks CaerylUSA

Great !

I'm guessing that once you get good control , the fatigue and exhaustion improves. .? I hope so .

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The pain does, but in my experience (others may be different), the fatigue does not really improve much - Maybe others have had a different experience?

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6 months is still early days. Don't accept that this is as good as it gets until you have run out of options - and that's a way off.

I responded well to MTX but didn't get back to "normal" - still achy, joints swelling here and there and exhausted. I kept asking my rheumy whether this was as good as it gets, and the end result is that I am now on triple therapy (MTX, hydroxy, and Sulpha). It took a year or so, but it worked and I have generally been in remission for the last 6 years.

Alongside that I also cleaned up my lifestyle - lost weight, took up exercise, removed stresses where I could, improved my diet, etc etc. Which has helped too, particularly exercise. I walk (lots), do Pilates and gardening (we have a big garden so that is quite heavy work). I've learnt the difference between when I should just keep going even if I don't feel like it, and when I should stop. LIsten to your body as it will tell you.

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Try swimming darling if you can find the energy.xxxxx

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Hi JulieBC ,

Have you considered that the exhaustion may not be due to the RA? I don't mean to complicate things for you but you could be anaemic. I have had RA and Lupus since I was 20 and will be 58 later this month, I have recently been diagnosed with Pernicious Anaemia and started getting B12 injections. My iron levels were also very low and I had an industrial dose of iron tablets to take!! I had been feeling exhausted and put it down to the RA/Lupus but something showed up on my monthly blood tests (I'm on Mtx as well) and my GP had ferritin, folate and B12 tests done. I'm a different kind altogether since getting diagnosed and treated.

With regard to Mtx, I have found that it takes months for my body to accept an increase in dosage so may be that it's just a matter of time before you feel the benefit?

Exercise - I swim, your body is supported in the water, I started with just a few lengths and built up to a comfortable level that suits how I feel on that particular day. Some days you won't feel up to exercise so just do what's absolutely necessary as in give the dog a wee walk? I think it's very important to learn to listen to your body and try not to feel guilty when you just can't do anything - not easy, took me years to get over the guilt thing!!

I hope you find this helpful, Oh! and never apologise for complaining! That's what we are here for - to listen, empathise and sympathise.

Good luck xx

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Good point. Also worth asking your GP to check your Vitamin D levels.

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Hi Julie - Welcome.. yes RA is a pretty rude disease.. I think for most of us - me at least - I was in denial for a long time before I accepted that I MIGHT have it - ha ha.

As your medication starts to help control your pain and damage, I would imagine you would feel more like doing things including working out of sort. I agree with the others that low (impact) and slow (take it easy) is the way to go as you can. Don't push yourself beyond comfort because you can hurt yourself...

Also, MTX takes a while to work, so give yourself some more time. You have friends here. Gentle Hugs

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Hi JulieBC, welcome to the nightmare. I also was very active. I was running three businesses. I was running fourteen hours a day. Now I am on CPP disability. I was diagnosed in July2015. Now keep in mind, autoimmune disease will affect everyone in unique ways but there are also many commonalities. Also unlike cancer, remission does not mean disease free. It simply means they have inflammation under control. Now my activities are limited to walking. It will be an individual thing. Please be careful and always ask your Rheumatologist before starting any program. My doctor would not allow yoga in the beginning. If you are responding well to drugs then you maybe ok but always check first. The damage cannot be undone. Tai chi is a good way to control movement. My biggest challenge was learning to slow down and listen to my body. You may find your body now comes with a variety of sound effects. 'Creaky Joints' is a good descriptive. If I do not pay attention my knees and hips crack , loudly lol I recommend you develop good body awareness and you will need to develop a new rhythm.

It has crossed my mind that this was the universe forcing me to stop and smell the roses. We are often so very busy doing we forget to just be. This is natures way of slowing you down lol

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Hi Julie, I felt just the same as you, but after a year on Methrexate feel so much better aches & pains only if I have a flare up and morning stiffness has gone. I knew there was something wrong when I went to cinema with friends after sitting through a long film just couldn't move so stiff. That dosnt happen now. I can still work do garden still get a little tired but nothing like before. So hang in there it will get easier.

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