Hi All, I m really confused as to what is a realistic goal of wellness with this disease. I find the GP is helpful and understanding but not very knowledgeable and the rheumy dept has little time to talk through any concerns.
Initially I was unable to lift a voffee mug I had pain both at rest and when moving. All my joints were affected.
Now I have no pain. My issues are with strength and energy. I get wiped out very easily and am working with the physio to rebuild muscle. I have swelling in 2 fingers, my ankles and a little in my knees. I m finding that increasing strength exercises little by little, I feel a bit stronger but do have to take regular rests throughout the day, sometimes sleeping for a couple of hours.
My question is, is this a good outcome or should I be striving for something better? Your thoughts are most welcome.
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PurpleSE
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From personal experience only... less pain is good. The lack of energy and muscle building takes some time. I've found it not to be a quick fix and determination is needed. Tricky when one feels cream crackers! I have some days when I have to give up and just rest, but otherwise I exercise every day. I had to struggle a bit to find exercises best suited to my needs.
Having less pain certainly helps with the exercise bit. When I was in pain the thought of exercise made me feel worse!
Just to add: the exercise has certainly helped with weak muscle strength and falling. Keep going. 😊
now this is a million dollar question and everyone will have their own view.
For me pain is every day but levels range , fatigue with me every day and the hardest part.
I think it’s finding the new normal for you and what you find is acceptable from pain to fatigue and working how to pace and live life!
For me if I go to an event ie to see my Mum for a day I know I need a quiet day before and 2 after. I no longer work as RA had made it too hard. But I walk in my garden, I do small Walks to the local church as I know I have to keep the body moving.
I talk to my GP if I feel something not right and if he feels needs a referral will do or pain mgmt etc.
So seize the good days but don’t overdo it and rest when the body kicks back.
Thank you. I totally relate to rest days around activities, that does seem to help. It's so helpful to hear others points of view. Thanks for taking the time to share your experiences.
It sounds like you’re heading in the right direction. Strengthening your muscles should help you with your fatigue levels as time goes on. Don’t forget your body has had a major shock and it’s not something that it can get over easily. The better controlled your disease the better your fatigue should also be. If you haven’t been told you are in remission then you’re not fully in control of the RA. When my disease was still very active I would need to sleep or rest throughout the day, it was written into my statement when I was still at school (I was 14 when I was diagnosed). You need to be kind to yourself and rest when you need it.
everyoe keeps banging on about diets, eat inflammatory free diet, they think they are cured. I dont find foods affect me, I got RA and that is it, i even tried carnivore diet...
I hear you. I wasn't referring to diet here however I do believe that if we give the body the nutrients it needs to heal and repair and limit inflammatory foods, it is beneficial. Its entirely a personal choice as everyone is different. For me, after over 4yrs of trial and error, I view food differently and seek out new delicious recipes that give me the most variety and nutrition. It's hard on my husband as he does the home cooking! Identifying food triggers, for me, has given me back a bit of control. I had allergies (not food) which have cleared up so I choose to see this in a positive light. I totally understand it's not for everyone.
That’s a tough one to answer as we are all different. I think pacing is important although I’m not very good at it & tend to overdo do things on better days. As others have said if you have an important or special occasion rest the day before & after. If you keep going without pacing you will end up in a mess. Break up your physio into small sessions several times a day. It depends which exercises you have been given but you could do leg lifts while watching TV. Squeezing a soft ball for extra hand strength etc. I think you have to do what your body tells you so if you need to sleep in the day then do so. Plenty of people have an afternoon sleep. Have you had all your bloods checked recently? It’s worth mentioning the fatigue to your GP & your Rheumy team.
Good morning, in my view you certainly have a good outcome. Regaining muscle strength and mass is a slow process but so important. I have lost most of my upper body strength over the last couple of years, Even though I never stopped exercising with walking and Tai Chi etc, and am starting to build that up upper body strength with a personal trainer. My goal is to be able to lift my own body weight within 12 months. Sorry, I am rambling...To answer your question, it's a good outcome and you can always strive for something better. It's a positive mindset and good for your overall wellbeing. Keep going and allow your body to rest when it needs it. Your doing brilliantly!
I completely agree with the others PurpleSE. I think it's a great outcome.This disease stinks, it affects us a differently, I struggle with the pain, stiffness and fatigue daily. I try and pace myself. What a learning curve that was. If i have a good day I'm like an excited spaniel and race off to try an do everything I haven't been able to. I'm getting better at giving my head a wobble and slowing down. Listening to my body and being kind to myself. If I need to nap I'll nap. If I need to be unsociable,I'll do that to.
What I'm trying to say is we now have a new normal. Enjoy the good days, do what you enjoy. When the fatigue etc kick in do what you need to do, if it's rest, nap, whatever. Do it. Don't give yourself a hard time over it.
Can you tell us more...... how long since you were diagnosed and what age are you? What drugs are you on, or have you tried? Are you still working?
I am classed as having severe disease. Exactly what that means will be different from person to person, but all joints are affected. I've had RA 54 years since childhood.
In that time, I've had neurosurgery to decompress and fuse my cervical spine from C3-C6
Bilateral hip replacements, first THR was infected and had a Girdlestone's procedure, so that's 3 THR's in total
Ankle surgeon refused to replace or fuse my ankles. He said I was too young, in mid 50's then, and it would upset all my other joints and I wouldn't get a good result.
Recently I've had a total elbow replacement and in the New Year I'm having a shoulder replacement and after that the other elbow will be replaced.
I have poor muscle tone due to naturally fused joints that are more or less rigid, but try to keep active by walking - can't do much else!
Thankfully, my general health is pretty good, no other chronic illnesses. I've taken MTX for over 45 years. Also had two healthy children, worked for 22 years before retiring in 2002. I feel I have done pretty well all things considered and energy levels are not brilliant but ok and manageable. I sleep well at night by taking 15mg codeine.
I don't have a good GP, it's temporary locums from an Agency currently and Rheumatology Department are virtually non existent.
Maybe you need blood tests other than the usual RA ones, depending what drugs you take? Other than that, pacing helps, but is hard to stick to.
I was diagnosed a little over 5yrs ago at age 50. In that time I've taken several DMARDs, all have been stopped due to side effects. One being my hair - it's not grown back to how it was before and does still upset me if I go out. I m having a break to consider what I may take next. I ve had short courses of tapering steroids to calm flares, which work at the time but these have been short and limited and only when absolutely necessary.
It sounds like you are relatively new to RA and still in the trial and error phase of finding the drugs that work and can be tolerated by you.
Given your age, could your hair loss be partly due to the menopause? My hair falls out but is not noticeable but I put that down to partly MTX and partly my age, 60. Have you discussed hair loss with GP/Rheumatologist, to see what they suggest? Steroids are brilliant at reducing flares but risky if taken at high doses long term, it's better to take DMARDS if you can.
Maybe GP could request extra blood tests to check for anything else. Recently, I was surprised by my husband being diagnosed with Vit D deficiency! He had never been tested before and has been given 50,000 iu Vit D tablets to load him up. Could your GP have overlooked something?
I think one factor with this question is how you were before developing RA - what was your baseline? That's likely to affect what feels like a good or acceptable outcome for you, and also be a reflection of your general level of health and functioning beyond RA (to the extent that that can be considered somewhat separately).
Another factor is whether you're able to do - more or less - what you need to do day to day, or if this level of functioning is making life unmanageable for you. Personally, if I were needing to sleep during the day every day that would not be manageable, because I need to work more than that would allow me to.
Do you have a sense of whether the loss of strength and (I would say) significant fatigue is due to RA-related inflammation, medication side effects or deconditioning caused when your RA symptoms were preventing you from being active? It might be hard to tell of course, or it might be a mix of all three. If you think it's inflammation-related, then reviewing / changing your treatment may help to get you a better outcome. Same goes for medication side effects. If it's more a question of deconditioning, then it sounds like you're already working on that with the physio input.
One of that hardest things I think with this condition is the constant balancing act between medications, side effects, symptoms and dealing with daily life! There are so many factors to consider and they interact in sometimes very complicated ways. For what it's worth, if there are no other factors contributing to your fatigue, I'd be hoping to get to a point where that is impacting daily life less than it is for you at the moment. Sending all good wishes, and hope that things keep improving for you.
I struggle with the same thoughts, what should I expect and what is considered effective treatment? I do think it’s a good idea to look at what your life looked like before treatment and after. Of course, there are fluctuations as we trial medications and have flares, but I have now resolved that I am happy with my current state. While the pain and stiffness decreased, I wish I had the same level of energy as before. I do think exercise and strength training is key, it makes a person feel good at any time! It’s hard to know what one should expect and I sympathize with your struggle.
Id love to know the answers to this. I'm in pain daily worse in the morning and then later evening.I force myself to keep going. Take the dogs out every morning, while hubby gets kids out to school. I walk but often not far.
I force myself to go to work. Tbh at least when I'm there I have other things to worry about.
Getting dressed is a struggle. I can't put my own bra on.. hubby to the rescue again.
I swim three times a week at the minute I'm cutting back the lengths as I'm less able. Usually when I get going I'm not sore swimming but today my feet really hurt and it was a struggle. The worst but is getting changed.
This time last year I was in hospital so I guess this is better but it's still all such a struggle.
I think everybody is different & has different expectations of how well they can expect to feel.
It sounds as if you are well on the way to success as I would imagine being pain free is the ambition of 100%….but don’t rush things.
As for energy levels…again some run marathons & others are grateful to be able to walk upstairs unaided. …I think if you can accept you might not get back to what you previously thought of as normal in a hurry & enjoy what you can do now. without hankering for what you miss would be a start to feeling more comfortable as time goes on.
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PIP outcome...raging!
Is this good news?
Is this a flare
What a great support this Forum is 😍
is this a sign my meds are struggling or just how it is now? 
