whats "normal" for you?

mazbaz

Hi all,

Love it here, so friendly and helpful

Just wondered what everyone calls a "normal" day pain wise? I appreciate every one is different but as I am struggling to work out just how I should feel with this dreaded RA, I though it might give me some insight.

My days always start waking up in pain and very stiff so quite a struggle getting out of bed. I hobble around for a good half hour til meloxicam kicks in then I feel a bit easier.
Get stiff at work if sitting for too long, get stiff if stand for too long.
Quite a lot of pain in right hand and arm as Im right handed and use a mouse most of the day. Pain in one knee, and flat shoes always now cos of toe pain!
After work go to stables to look after horse, very slow and major effort to muck stable out. If I have the energy to ride, knees hurt, shoulders hurt and right hand. Very stiff when getting off horse and hips painful.
At home, very stiff on sofa, exhausted by 9pm asleep by 10.

I think I should feel better than this!!?? Rheumy has past me on to follow up clinic as he thinks I'm "Stable" on meds (8 x meth a week and 300mg Hydroxychloroquine plus meloxicam and amitrip)

Can anyone give me an idea of what they go through so I can compare ?? Am a bit new to all this and I just dont know how it should all be for me.
Thanks Guys x

maria09

Hi
I have pain 24/7 of varying degrees in most of my jointsno matter how much pain relief I take I have OA and spondylo arthropathy
I wake during the night as I'm a restless sleeper at the best of times so discomfort is the start
My main pain is in my hands and feet and as they are used regularly there is not much relief during the day
I tend to take things slowly so housework takes forever
I've just had an op on my foot and need to rest with my foot up which is fine but the rest of my joints don't like it so no happy medium at min
If I do anything exciting like going for a walk or meeting friends I really suffer the next day but its worth it
I try to keep upbeat about it but sometimes I get really annoyed as cant do the things I used to
Luckily I have a very supportive family and friends plus this site to get me through the tough times
I sound ancient but only just turned 50
I could go on for hours but don't want to bore you
Maria

Boomer13

Hello, this is an interesting topic. My arthritis is not RA. I don't have a specific diagnosis yet. Hopefully my input is still appropriate to your topic... :?:

My days are incredibly short and slow. I have a very tough time in the morning with pain & stiffness so I'm reaching for paracetamol/tylenol, codeine and tramadol first thing. When that starts to kick in, I take a hot soak to limber up then struggle to get mobile while I walk around feeding our chickens and other animals outside. So that's about 40 mins. If it's a good day I can do two or three easy tasks afterward either around the house or go for a 20 min walk. Then it's back to bed, fatigue fatigue fatigue, rest rest rest.

I cannot work any more so no job to go to. I am not reliable enough; my hands or other body parts fail me. I have a course I'm doing right now so I'll work on that or read for a couple of hours in the afternoon. I take a lot of drugs throughout the day: tramadol 350mg, gabapentin, plaquenil, propanolol, tylenol, codeine.

By 4-5 pm I feed & put chickens to bed, make dinner for my family. Dinner is my big job of the day and I love doing this so I plan it out ahead of time while I'm resting. Finding ways to make jobs fun helps motivate me through the pain. I guess I do that a lot as a coping strategy. I'm usually lying down again by 6:30. Honestly, the day feels about 2-3 hours long. I really battle with a lot of pain in all joints, my neck & back, and huge fatigue. Sorry, now I'm getting whiny :oops:

I try to spend 15min in the swimming pool 2 times a week but on a day I'm doing that, I will delete several other tasks. I kind of play a game with myself with trading tasks so I pace my activities and not to overdo. It's fun but really hides my sense of frustration with the situation. With me it's crucial not to overdo or my pain level goes way up. Then, I will flare badly. Ho hum.

Evening activities like going out, etc are permanently cancelled because of exhaustion. If it's something I can't avoid going to I will rest up for a couple of days, and the day of. Then I can usually muddle through a dinner out, etc.

This is how the average good day is for me. If I'm having a bad flare. I will spend 30 mins twice a day on essential chores and otherwise stay in bed. Sometimes after I've started the day and got ready to go out, I'm really ready to go back to bed. It's horribly restricting and so different from my previous life. What can you do but struggle along as best you can? Every once in a while I have a day when I actually feel pretty good. I try to really enjoy the feeling rather than overdoing things and setting myself back. Those days are really special when they happen. The possibility of one happening kind of lures me along through the usual days.

I could go on & on but that gives you the idea. Oh, and I'm only 46!! Waiting for better days....

Good luck, may your life never be as restricted as mine is.

trepolpen

hi mazbaz

your lucky to be able to work with it , had to give up within a few months & wish I could have stayed in work , but that was 17 years ago , needing to move is normal with RA , strange thing is most people think why dont you stay sat in a chair , as for standing in one place is one thing I cant do

I dont take any painkillers , just think of pain as my freind & even with a load of joints on the go I can only feel the joint that is playing up most , know its not for everyone but had RA a long time

stickywicket

It's an interesting question and I can see where you're coming from but I'm not sure how relevant other people's experiences are as we're all different. We have different joints affected for different periods of time and, for some of us, that means OA/replaced joints.

My RA was at its worst about 15 years in, when OA had already set in but before any joint replacements. There were days when I'd have stayed in bed if I hadn't had two young lads to get to school. Working was out of the question as what started in my hands had, by then, progressed to my ankles, other foot bones, wrists, shoulders and knees. I took penicillamine to control the disease, 2-3 anti-inflamms daily plus DF118s for pain but as few as possible, aiming for no more than two per day and only on very occasional days getting up to six.

Now, over 30 years and several replacement joints later, it's better than it's ever been. Meth and hydroxy (not available in my younger days) keep the disease at bay and I normally only take a couple of mild cocos going to bed. Most of my hand and foot bones have fused themselves so I have no movement but little pain there. My life is good but probably irrelevant to yours.

DebbieT

Hi,

I'm not sure how relevant my 'normal' day will be as I haven't got RA.

I have Psoriatic & Osteo Arthritis and also Fibromyalgia.

I wake very stiff every single day with pulsing heat waves of a toothache like pain throughout my body. It can take an hour or 2 b4 I can move with a bit of freedom unless my hips & lower spine have seized up. If that's the case I'll be stiff n can barely move all day!!

Unfortunately on my best day I can't walk 10 metres without pain & then seizing up, the only thing that keeps me walking is aids & stubborn determination!! I can't sit or stand for long either :?

I can't bend so house work is very sparse. 2 of our young adult girls live at home & help out loads bless them ... The guilt of that is immense tho

I suffer with bad fatigue but also insomnia (from fm) so my life is very limited. Sorry.x

Buka

This is a difficult one to answer because it can be so variable. I am into my 13th year with RA and can say that it has been an up and down rollercoaster of a disease.
I managed to work for 11 years after diagnosis and could have carried on but redundancy got in the way. I used to be very slow in the morning - sometimes having to work from home until I was able to drive. My days have ranged from being unable to move at all (once stuck in a chair for 40 hours) and having pain constantly for weeks on end to having manageable pain and a better quality of life. Flare ups can be a nightmare but there can be plenty of good days in between. I've gone from barely being able to move to swimming and riding my bicycle. So what is 'normal' for me is constantly changing and the pain never goes away completely.

I'm pleased to report that today is a good one. I'm spending three months in France, been out for a fabulous meal today and rode my bike for 10K's yesterday (but it hurt my knees,which both have to be replaced, shoulders and hands). Tomorrow may be different - I hope not because I'm having a good time and don't want it to stop but with RA who knows? I make the most of each good day and rest up on the bad ones.
Sorry cant be more specific but this is how RA is for me.

mazbaz

Thanks guys, always very forthcoming and helpful on here
It was very enlightenng to read your messages comparing your days to mine. I actually had a good cry after I had read them as it put a lot in perspective for me.
I realise that Im only in the early stages of this nightmare disease and so many of you have had to deal with it for years.
It made me appreciate that what to me feels like a bad day, actually in your world would be a good day !
But then that made me realise that probably my good days are going to degenerate into bad days over a period of time and that made me scared for my future
Tomorrow I go for my first appointment in the follow up clinic ( although have had to request it be brought forward as could not wait until mid july !)
I will see what they say regarding my meds etc as I dont feel like they are keeping it under control enough. My rheumy upset me and gave me false hope as he told me I should be able to do everything that I used to do , HA! theres no way!
GP says he was being un realistic and I agree.
Best wishes to you all and I wish you all loads of those "good days" XX

dave331

hi

new on here , although I have had RA for 3 years now , I agree mornings are not fun and my routine is , get up slowly take meds 12 tablets and then sit for an hour until they kick in , this means getting up for work earlier than I need to , rest of my day is different every day , do a bit rest a bit , I find the more I sit still the more pain I get .

dreamdaisy

My 'normal' is unique to me - and I no longer have a 'normal'. I take each day as it comes, sometimes sub-dividing it into various time-portions: the harder the day the smaller the portions. Today was a rough one and I suspect that tomorrow won't be much better but so what? I knew from a very early age that others had lovely lives - it must be far harder to accept the restrictions this disease places upon you if you used to be healthy. DD

Icandoit

Hello people. I am new here and I have been diagnosed with inflamed joints, from 18 months, its in the jaw,neck and downwards. At first my mornings were very difficult especially in the colder times, which I know is normal, so I started putting the heating on a timer in the morning to help with the stiffness and then with the medication starting from naproxen, then as the illness started to mimic I then started on methotrexate and then on others that I cant spell. I am a qualified chef and not knowing if its possible to go back is upsetting. I know there are many forms of arthritis but its something new and hard to understand how and why. I would like to chat with someone about how to cope with the illness and changes.

lizzieuk1

Hi icandoit
Welcome, I think you would be best starting a new thread as likely get more response.

maria09

Hi Maz
Trust your rheumy to say that! Mine told me he could cure me! Still waiting!
Didn't realise he had changed into a miracle worker
Don't get disheartened keep fighting
As I always say you have the disease it doesn't have you :!:
Maria

dave331

hi maz

good luck for today , and hey don't get so down ,this is only as bad as you let it be , my next target is to get off the steroids , I am currently in the humira scheme and it appears to be doing well after first year , although I still have to take methotrexate by self injection , although it does not last a week , maybe only 4 days some weeks , your meds will be different to probably everyone else , all I will say is don't try to be brave where meds are concerned , if they are not working then tell your gp , there are thousands out there and you need to find your own mix . I am lucky , my reumy has OR so he knows as much as the rest of us , yours sounds like a fool and telling you he can cure you is very wrong , as for doing what you used to do , you will be surprised once you get your meds sorted , life is still smiley just sore some days as well . chin up

BonnGayle

hmm 'Normal' what that again ive forgotten well now Ive had joint pain for some years starting with my hands around 20 progressing to my knees and back by 25 and I got a full frontal attack in my early 30s this wave died down and I only had a mild pain few years and now Im back to full Frontal Im trying to get a solid diagnosis from a German Reumatologist but from the first bloods he thinks RA or maybe Pa ...Normal for me hmm the last months is pain and fatigue, the low dose prednisone Im taking for 6 months seems to do almost nothing so I take some ibuprofen on a very bad day, I work part time and Im trying my best to rest on days Im home so I have the energy to cope with it, I live in Germany and if I quit my job Id become isolated very quickly so its good for my sanity !
Im on the path to acceptance Ive recently bought a ruck sack and a folding stick ( red mettalic carbon ..as cool as a walking stick can be lol ) I was finding a handbag unbalenced me and the stick is mostly just for steps, I try and use the pacing method of doing a little sitting a little, instead of racing round doing everything then being so worn out im useless.
hope that helps

bubbadog

I'm not sure what normal is? I'm in pain all day from the minute I wake up and try to get up out of bed, I suspect the general pain I'm in is classed as normalish because any spike in pain is not normal. It's a hard question to answer because life before Arthritis was normal to me as well.

Boomer13

Me too Bubbadog. "Normal" seems to reset every couple of months, then I can't remember well what "normal" was before. If I feel less painful than the week before that's great, but it may not be an improvement in how I felt a month ago.

I've been thinking about this a lot because of difficulties expressing myself to doctors. It adds to the difficulties chronic pain sufferers like myself have in describing/relating their symptoms to others. Very problematic when the "other" is your doctor who doesn't have a chronic pain condition. Am I better on med X? Relative to last week maybe, but better overall, I don't know because I've forgotten what it's like to be pain/stiffness free.

"Normal" varies so much through time, drugs taken, state of health. These are such complex diseases.

I'm wrestling this out in my mind now because in my case how I express my level of pain and my condition overall, very much determines how the doctor is going to treat me. In the past I've really understated my problems; I don't want to be "whiny". With me there isn't much to see, even by bloodwork. Now, I keep track of "normal" in a diary and, before doctors visits, I try to put numbers on pain/stiffness & fatigue levels so the doctor has this to compare to last time. Not sure if it will work, but worth a try.

maria09

Hi Boomer
I don't think any of us have a normal life as chronic pain and fatigue is a constant issue I just class mine as a good day or bad day and take it a day at a time new day new beginning
I think it's a great idea to score your pain up until march this year I was a staff nurse we used scale of 0-10 0 is no pain what so ever 10 is the worst imaginable and makes you want to cry
I find it difficult to assess my pain score as its there 24/7 and in most of my joints so when asked by Consultant/ Doctor I always give them the worse score
It's difficult to explain chronic pain as most people have not experienced it I explain that it feels like really bad toothache but in my joints
I hope it goes well for you
Maria

Boomer13

Yes, it provides yet another area of endless frustration, doesn't it?

It's really hard to contemplate the whole thing at once, so I'm with you; take it one day at a time.

Anna

maria09

Boomer13 wrote:

Yes, it provides yet another area of endless frustration, doesn't it?

It's really hard to contemplate the whole thing at once, so I'm with you; take it one day at a time.

Anna

I see like me you can not sleep

Boomer13

Sleep? Oh, I remember that. It was part of the old normal