I'm writing to see if anybody feels "normal". At my initial Consultant appointment (about 3 yrs ago now, was aged 28 then) I asked what the aim of treatment was, to have no pain? to be 50% better? etc, he said 'to feel normal, as if you don have RA'
So my question is does anybody feel normal like they dont have RA?
I've been fiddling with my medications over the last year with my team, I'm pretty good, only on and off moderate pain, feet always ache and fingers too, but all the other joints come and go, sometimes for a week or two. If I'm in a steady routine things are good, but if I have a busy day, poor sleep etc I'm over fatigued compared to 'normal'. I'm trying to work out if its the meds aren't right yet, or if the pursuit of 'normal' is unrealistic and therefore I'm doing really well.
Any thoughts or musings on the matter greatly received.
Hope you are all well and comfy out there
PJ x
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PJsorefeet
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I was diagnosed with RA January 2013 and I can honestly say I feel like a different person now and not normal at all. I used to be a really active person and never suffered any illness at all then out of the blue this hit me. I work full time still and its a struggle getting through each day maybe partly because my disease is still very active and the medication hasnt got it under control yet. I can relate to your comments about feet and hands because I have major problems with mine and they have suffered damage. We can only keep trying and hope the future maybe a little bit brighter for all of us.
Sorry to hear things aren't level yet, i hope they find the right combo for you soon so you can start edging back to 'normal' soon, thank u for your thoughts
I have felt normal for pretty much a whole year. Yep, 'normal' is the word I'd use. I have severe PsA but a combo of Mtx and Humira worked brilliantly in terms of tackling fatigue, the 'blah' feeling, swelling and stiffness. Not quite so good right now but I've seen what can be achieved so am optimistic I'll get back to where I was before too long.
Remember that people with inflammatory arthritis who are feeling 'normal' often don't contribute to online forums, so we can get a skewed picture of what is possible in the online world.
in reply to
Although .... I've always had to do a bit more pacing than I'd like, but that's doable!
Hi ya, you are right, the forums are where u go when you're not feeling so good. But its lovely to hear you are 'normal'....(you know what I mean, wasn't saying you are abnormal ...) That's nice to hear its achievable and that blahhh feeling is a perfect way to put it! Thank you for your thoughts
Ironically, I joined this Forum looking for people who were doing well! My second year since diagnosis was incredible - I felt amazing, had lots of energy, and was challenging myself physically. But I used to be a half-marathoner and dropped down to running 5k's (my choice, but I don't know what my body would have thought of it). But I think I started to take my feelings of 'normal' for granted, started skipping workouts, took on more at the office, stayed up later, etc, and ended up in a year long flare.
I feel good right now RA-wise, though I think I have pneumonia, my liver enzymes are high in my labs, and I'm just starting physio post MVA. Oh and I've had both kids with back-to-back week-long fevers, and our house has been on the market nearly 4 weeks now (with over 15 viewings requiring me each time to turn into Cinerella on crack). Ha, when it rains it pours! At least my RA has remained quiet for now...
Best of luck to you. And gentle hugs! I find so many periods of Ra feel absolutely desperate and time ticks much too slowly, but we get through those times, because we have to, and because we have hope.
Hello Pj
This is one thing that most of the population will ask themselves. What is normal??
Been bad now for many years and I cannot give an answer, my attitude, condition etc changes daily, even when in remission, what is normal.??
Yes my condition varies, yes I seem stable, no I still have varying pain levels. When I take my medications I generally take my normal dose, although still my condition varies. What stops normal is the day and what I need to do on that day
When I have a Hydro Spa the warmth of the water makes me feel more comfortable and I may not suffer as much pain, that is itself is not normal, as nothing really is persistent. So I cannot say I feel normal.
With my condition I suffer from Reactive depression, generally I suppose what is normal there, my mood changes with my condition and the environment around me.
Can I suggest letting me know when you are normal, and explain your feelings to me I would love to feel normal.
All I can suggest is use the pain numbers 1-10 that is how the Pain Clinic works it where 1 is minimal pain and 10 has you climbing the curtains, that is if you have the strength and was not in so much pain
Good Luck, here to normal I hope you reach that position on the pain chart. I long so much to be normal.
Hi Bob, sorry to read that 'normal' is still a distance off for you. Thanks fir your tips on pain perception a nice way to view things. Hoping for a level and comfortable future for you. Thank you for your response
Quite frankly, I can't remember what "normal" is! I've had pain in various joints for so long that I can't remember a time without it. It's just the severity that differs from time to time. Clemmie
Hi Clemmie, your picture seems common which is why I posed the question of this elusive 'normal' I only feel normal if dosed up, pacing to the max and on steroids, not a long term option? Hmmm food for thought n more questions at my next rheumy appointment. Thank you for your reply
Hi yes I feel normal most of the time few problems with my ankles the tendons but not RA related my rhummy said , I was diagnosed and treated within 6 months so caught very early .i take MTX and hydroxychloroquine
Hi chocnbags, that's a positive picture to look at, thank you, I too was diagnosed really early and have no joint destruction (yet) so maybe a tweek of meds may be needed to get closer to the aim. Thanks for your reply
I rarely put anything on here but I definitely don't know what 'normal' is. After 3 yrs I still hsve many aches and pains. Feet ankles,, wrists, hands, back, bursitis etc
Exhaustion, gets me too. I work full time and try my hardest to just carry on. Sometimes its v hard. So I can symphathise.
Warthog 100, thank you for taking the time to comment. I can really sympathize with you, I'm v lucky not having to work full time ( have 2 kids under 6 though ) and the fatigue gets me so you must really struggle at times! I hate the fatigue the most as its not measurable, no xray findings, no objective findings just feel crap.... Its a tricky one. I hope things improve and level for you in the future
One of the hardest things is coping with fatigue. It just hits out of nowhere and hard to explain to others. Coping with 2 under 6's is equally if not harder than working. I have 2 big kids!
I have such a desire to feel "normal" (and we all do !! ).. that feeling you remember having on a GOOD DAY, your happy healthy self... That is such a distant memory for me anymore.. Much like yourself, being diagnosed at a younger age, makes it more difficult to not have gone through the slowly progressing "adult growing pains" that most experience. You go from a youthful existence and in a flash its accelerated , it seems you have aged about 20 times what you should have. Coping with such drastic physical changes can make you FORGET and even question what NORMAL is and EVEN WHO YOU ARE ?!> You become a whole other person and before you know it, your friends and family are wondering who you are and what Is going on, because as the old saying goes, if you can't love yourself, no one else can! -- I agree with the prior post above that you should try to find the right medicines to alleviate some of the flu-like symptoms and fatigue.. its DIFFICULT, but you CAN! I found my help in Humira.. it really helped alleviate a MAJORITY of the blah feelings, soreness and fatigue.. but that was after being on Methotrexate and having it make me feel as though I was literally dying each time I took it.. Its a LOT OF PATIENCE, Experimentation, Re-Evaluating yourself, Knowing how to set new limits, learning your body all over again and listening and obeying your inner self. I have a whole new set of problems now , but like before, I can't let them get me down, I just add them to the equation and try to cope with them too.. At 40 years old, the prospect of having a hip replacement is NOT NORMAL, but IF it takes away the pain and helps me get back to being more active and relives some pain, I am Looking forward to it, because it will be the closest to "normal" I am going to get !!! .... So, that is MY OPINION, and I hope that You can Stay optimistic and Thank YOU For sharing and I hope that YOU are able to materialize the "normal" that BEST SUITS YOU and make YOURSELF a priority and LOVE YOURSELF and those that LOVE YOU THE MOST ! Best wishes and Positive Thoughts and Energies your way!! Tommy
Hi Tommy, thank you for your heart felt reply, sounds like things are tough for you. You are right, holding onto 'you' is tricky. I'm a get on with it, never ill, not pathetic type if person and I used to feel that id switched to everything i used to hate. But just dine 8weeks of counselling and feel so much better. For me its the adjustment that's taken the time, but getting there, but that blahhh feeling is the thing that's the kicker for me. I think you are right and should cont to push with the meds till its improved some more.
hope the hip replacement goes well, my friend just had a new half a knee aged 30 and she loves it, no pain, wishing the same for you
THANK YOU, PJsorefeet !! Just HANG IN THERE! ! Spring is ALMOST HERE !! ! TRY to find things that make you HAPPY ! When I get blah, I love getting a haircut ! It ALWAYS cheers me uP ! Also, I love going to my Dad's and telling old tales of our GOOFY Hillbilly Family and all the crazy things My Aunts and Uncles have done and have GOOD LAUGHS over COFFEE! And you KNOW , on Real bad days, I have a couple of friends I can rely on and bite the bullet and call up and say HEY , I am having a BAD Day and we get together and try to make things better ! I am Sending you POSITIVE THOUGHTS< ENERGIES< and Much Caring and Hope You have a GREAT WEEK ! I will keep yall posted of my updates and what is going on with treatments//meds//surgeries .... Looking FORWARD TO HEARING YOURS! OK !? Thanks.. Tommy
It's a different normal, but most of the time I'm normal. Which for me means that I can live a normal life, and do normal things, and my friends don't have to compromise too much. Perhaps I can't do as many things in a day, or do them so fast, but overall I'm the same person. Except that a few dreams have been taken off the bucket list as I realise I'm not going to learn to jive or get to Everest base camp any day soon.
Hi helixhelix, thank you for your thoughts, I think you're right, perhaps its cant be how it was, but it can be a new normal, a few adjustments here and there and some pacing around the edges and the normal family life and fun that goes with it can be normal. Food for thought, thank you
Hiya, what a really interesting question. 'Normal' a couple of weeks ago I had my check up with my Rheumy. He said my feet are showing signs of erosion & he's given me splints for both hands. I came out of there feeling really low. Anyway since then I've tried really hard to be 'normal' & deny all!
I'm living in a very pretty costal town in Suffolk, my house is under offer & we are planning on moving back to the smog. Last week was beautiful here so I took full advantage threw caution to wind & walked miles & miles. Not one of my better ideas, by Friday my feet were so painful & swollen I've not been able to walk or even wear shoes since. I can't take painkillers so the weekend was pretty grim. So I think your right if you keep to the rules, eat well sleep well try not to get to stressed out (not easy when your moving) exercise within your limit don't over do the vino, then I do feel 'normal'.
Still the pleasure I got from the walks were worth it.
Hi Caza, I know what you mean, sticking to the rules all the time does mean things can be good and 'normal' but sometimes you just cant. My husband and I always watch the Oscars every year, have done for 13yrs since we met, but staying up till 5am on Monday morning then doing the school run was not a "wise" move, but those things are why we are alive! I know itll take me about 2-3werks to recover from the fatigue and the v strong blahh feeling that is self inflicted but its worth it! Thank you for your reply
When in my teens I would be out hill climbing, fishing and swimming twice a week.
When I was in my late teens I was hill climbing rock climbing and beginning to do my lectures for the County around the schools for Road Safety. When twenty I began to do Youth and Community Work part time until I qualified and as Youth and Community Worker I used to go camping hill walking and taking the kids for Table tennis. I used to swim thirty three lengths in the pool twice to three times a week, When I was at work I would generally go walking in my lunch break for about an hour daily, I was at that time doing my youth work again for the county as youth and Community worker once a week and I also did Youth work in next door County. I was also doing ballroom dancing two to three times a week so my time was really taken up and was never bored, The above was my normal until a car crash when I was in my mid twenties. End of normality.
Normal had changed and I was suffering from PSA . So now I control my condition Sad to say I am unable to take DMARD, BIOLOGICS. as I take bad with them all.. So now I take my pain killers and Cox two and other things that are supposed to keep me normal ???. My life now is pacing and taking stock of what I can do I try to control my condition and now and again I may when lucky go into remission, could that be normal ???.
Now I am sixty five in six months time. My normal is working in the garden over short periods in my orchard. It takes an age to do my work even on my dwarf varieties. If I plant something it takes an age and it is just one big stress. so that planting may take an hour with breaks in between, so it will take me over two hours to plant. So I have now two peach trees to plant and initial training it will take two afternoons as one tree will take an age, is that normal ???, I suppose that restriction is normal now for me. Although in my eyes that is restricted especially when my Wife has to take most of the slack and will get the job of planting the second tree, is that normal
Now I do voluntary work for various NHS departments, and represent my practice in the CCG, Healthwatch etc. That sometimes can slow me down is that normal ???
Obviously it was not my intention to define what is normal, just to get some broader view on others experiences with a view to assessing what the aim of treatment is and the likely outcome and to help me judge my own experiences knowing this background. Hope I haven't caused offense.
I truly am not sure what normal is!! I suffered for 12 years before seeking help and I am now a firm believer in medicine! You do not know how bad you really feel until you get better or at least better than before! I think that for me, normal, is being able to live with hope that tomorrow might be better or that I am taking the steps necessary to help myself and my family. I also believe that people like us will always have some kind of pain, whether it be our hands, feet, back or our whole body. Normalcy will always be a uphill climb.
Well I will gladu admit to not being any near normal a lot of the time! Lol that soup ups not be exciting lol!!
Ye my life is different but I've met wonderful folks through nras and the hospital I wouldn't have known. Do ye it has downsides but many positives have come from my illness, oh and my " friends"
I now know who they are!!
Good luck and keep up positivity like Tommy said xx
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...) That's nice to hear its achievable and that blahhh feeling is a perfect way to put it! Thank you for your thoughts
Best wishes and Positive Thoughts and Energies your way!! Tommy
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