What activity have you replaced since having an autoimmune arthritis?

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  JM says For me I used to be an exercise freak, loved step aerobics, jazz dance, etc. 
  I've replaced these with cycling. I can do this with my husband and don't feel out of place. It's no impact on my joints and great to be out in the fresh air with the wind in my hair. Well wind through my helmet..lol
  

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  SET says 

  i'm an outdoors freak and love to spend time with my horse, I can still do most things with her, but have recently found things not to be as easy - anything with a horse is either heavy or difficult, I used to compete a lot more but riding for more than an hour now can make me stiff and in pain. 
  
  I am determined not to let RA beat me and hopefully won't be giving up totally, and i do realise that i'm probably not as bad as others, but replace any length of time riding with just 'being around her' on days i'm not feeling good, accepting that this is how it is, i still find great joy from just being with her, and just do what i can - my dog also now reaps the benefits from a few more walks! :) 

• RC says

  Ok, I found I had to give up the gym and yoga when my hands and wrists became too painful and this also made it difficult for me to continue Makaton signing, which I used with my grandson and some others. However, I am in better shape now and am wondering if pilates might be possible. I would be interested in anyone who has experience with this. Other than that I do walk on errands (shopping mostly) as much as possible and have got myself a shopping trolly (I have become my mother!). I also find the fatigue a bit of a problem, of course. I have retired and I have thrown myself into gardening and am trying to psych myself up for swimming.

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  DL says 

  I used to play golf to a high standard ( 2-3 handicapp ) its now very painfull during and extremly painfull after.....also used to snowboard but couldnt stand the pain.....i now go swimming when i get time and also am thinking of buying a mountin bike.....

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  RC says

  It is hard to find positives but it does make you broaden your experience and you, of necessity, learn to be more patient, especially with yourself! It is a hard lesson to learn. i am a bit down just now....can't find the energy to tackle the jobs around the place that accuse me every time I pass! No longer keep houseplants because of the guilt when I can't do well for them. Great excuse for catching up with years of fiction reading, though! i am ticking off the list at a great rate.

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  SW says

  I'm so with you on the horse issue. Am really hoping to be able to get back to regular riding but curse the loss of energy, and also all those fiddly little buckles. My horse is quite happy standing idle though, and I keep reminding 

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  JK says I loved riding, but that has now been replaced by Fly fishing... Not sure how long I can keep doing that…

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  JM says
  I've never been a massively active person but am struggling to find something I can do. Doesn't the cycling hurt your wrists and hands?

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  JM replied at the moment yes cos in a flare. It does hurt but I can cope with it cos there's not a lot of choice. But also, if you go to a good bike shop they can adjust your bike to make it the most comfortable for you (I'm not talking Halfords) I go to a bike shop in Windsor and the man that runs it help out disabled children, so I'm going to invest in a new bike soon as mine is a bit old now, and he said he will make lots of adjustments for me to make it a comfortable ride. Pop into a bike shop and have a chat. If you've got some nice places to cycle then it is so nice to be out on it

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  JM says My rheumy said once that she has a patient who can hardly walk but she cycles everywhere. Once when we were out cycling we saw a man with one leg cycling, he had a prothesis. So it's definately worth thinking about when you feel better.
  I love it cos I do it with my husband and it something we can both enjoy and be more or less at the same level.
  I've also just started Humira, so I'm hoping I will be back out on my bike soon. I did go out a few weeks ago, but triggered off a major flare in my knee. I think I was out too quick. But I'm hoping soon soon soon. 

• CC says

  I really miss playing tennis, dancing and playing golf. I used to ski, go hill walking and was always very fit and active. My consultant suggested ping pong when I mentioned the tennis! She is not very sporty. I am using an exercise bike but it's not the same.I'm really hoping that enbrel will allow me to go back to my normal lifestyle....an eternal optimist x

  
  

  JM says Ive just started Tai Chi Sung which has been developed for people with arthritis.. really enjoying it. Very gentle, relaxing, no bending or getting on the floor. Never have to stand on one leg etc. Look out to see if you have one in your area.

  
  

  

  
  

Letter to people without chronic pain

(no author was submitted with this letter, but I felt it was a very emotional and appropriate letter)

LETTER TO PEOPLE WITHOUT CHRONIC PAIN

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me....

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me--stuck inside this body. I still worry about school, family, my friends, and most of the time, I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "but you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being social" and so on....it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or "do something to get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time, I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways, I depend on you - people who are not sick. I need you to visit me when I am too sick to go out...Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

There was no author listed.

Whats the stupidest thing anyone has said to you about your autoimmune arthritis.

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  UK autoimmune arthritis group

  JM says

  For me, when I was diagnosed with PsA. The Doc said
  
  "this is good news, at least you won't need any joints replacing"
  
  Errr...wrong.. Had a hip replaced and need elbow replacing.
  
  What did he know?

• SW says

  "100% from September." Said by my headteacher in July. Err, actually it's not something I can decide on, or work harder at - caused me a whole pile of stress which led to, yep you've guessed, big flare-ups all through the summer holidays.

• LC says 

  "It was probably because of all those drugs you took as a child for asthma..."
  
  In a round about way they were right - if I hadn't taken all those drugs for asthma I'd probably be dead by now so ergo no problems with ra! :-) Always look for the positive side in everything!

• ZB says

  I just always get the 'your to young to get it' I'm 23

• VH says

  we all get aches and pains gets me mad every time

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  SS says 

  I was told by rheumatologist "you should be grateful its just your muscles and tendons and not damaging your bones like arthritis does !" So how come i've got erosion in my spine and hands?
  and boy did he grovel when i saw him for the first time after my lungs hemmorrhaging! classic case of oh bugger i got that wrong!

• RC says

  My GP - "glad to say you have not got RA - the test has come back negative".

   How come GPs can still not be aware that the "test" for RA is not reliable as a yes/no diagnosis aid?

• SG says

  Before diagnosis..trying to find out what was wrong with me, I woke up to having big, hot, can't bend 'sausage toes' and limping with pain in foot & hip....was told to wear better footwear!!! There's nothing wrong!!!! See the rheumatologist but it'll just be to put your mind at rest! Since then...had both kness aspirated, on NSAIDS and Sulfasalazine....sero negative RA diagnosis. Haven't crossed paths with that doc yet....

• TN says
  

  I did construction work my sister-in-law who has a desk job said " I have a pain in my shoulder but I can't afford not to work." But take sick days when she has PMS. Gotta love all thoughtful people.

• RC says 

  It is shocking to hear all these stories - I thought my GP was a one off but it seems he is par for the course. When I next see that GP I shall let him know how I feel about the way I have been let down over the years. The suffering and the damage......but I must not dwell on that, I am now having treatment that seems to be working and my life is much improved so I don't want to look backwards BUT I will make an exception for that GP!!

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• HTB says

  i guess the stupidest thing that was said to me was first off it was all in my head....lord knows who would want to dream up the pain that ra causes? than the second thing was about my age.

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• TW says

  Most stupidest thing and unkind thing said to me was"It's because you are overweight and people who are overweight get all kinds of things.You should diet then you wouldn't suffer.".I lost weight but that person remains unkind and ignorant.

• SJL says

  erm well it has to be my rheumatoid doctor, on crutches bad flare ups could hardly walk with screeching agony, you need to exercise more ?????

• TMD says

  welll.... its not said to me as such but i've heard lots of people say 'the dr said i cant have a replacement cos i'm too young!' for instance my sister in law she's 58 and the dr said she cant have a hip replacement as she's too young! i think she has osteoarthritis or something like that - Def not RA or an AA. It gets on my nerves when 50-60 year olds cant have a replacement cos 'they're too young'!!!! does anyone know why they say this cos to me its crazy... why not let people enjoy their lives a little less painful while they are still young enough to ejoy it. why wait til they're 90 and cant really enjoy the benefits of it!! to me that just seems a little crazy... plus i had my first replacement when i was 18 so how can middle aged people be too young?? beats me but it really drives me mad when i hear it! lol

• MJ says

  The worse one is "oh Ive got arthritis ", when asked what type, and is it R.A.....answers "yes, its in my finger"....when quized more, its always turns out to be O.A. WHICH IS TOATLLY DIFFERENT! But I also get your far too young to have arthritis. People havent a clue what they are talking about. Also the classic one......"but you look so well" ARGGHHH!!

  
  

• AA says

  "Denied, Denied, Denied" You aren't sick. Even though my doctor won't let me work. The denial letters are fabulous to read. Contradictions in every paragraph. Too bad I lose.
  But I don't. I will survive.
  
  Lack of understanding - that is all I can say about others. Like I have said in one of my blogs (poems)
  What RA has given and taken away
  
  "RA has deepened friendships that take the time to understand
  and also taken away family and friends that didn't."
  
  Hard to do, but I had to ...

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  NM says

  I think it's the classic mis diagnosis that I think the majority of us probably had.
  
  In my gp's surgery there is this one laldy doctor who is a coplete cow. She blames everthing on my weight, she's one of those, you're so fat you're gonna die types. She diagnosed me with fluid on the knee's and the old favourite, frozen shoulder!!! I think everyone with RA was initially diagnosed with frozen shoulder!!!
  
  The reason that this is the stupidest thing that has been said to me is my prolific family history of RA!! My mum was diagnosed at 36, my grandfather at 39, and his mother had it too!?! So at 31, and this sort of history, referral to a rheumy should have been obvious.
  
  I no longer see that doctor, I have a fantastic GP now.

• MJ says

  Ive learnt now not to say the word "arthritis" as everyone says..." oh Ive got that" I just say Ive got Ruematiod Disease, when asked what that is, I just answer "its an auto immune diesase", they then shut up :), Every man and his dog has it...but they dont go to Rheumatology and they are not on meds?? Mmm...Maybe they dont have it after all?
  
  
  Rant over lol ♥ x

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• GL says

  I've got a good one "I can get you sacked for having that…."

  
  

  
  

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    UK autoimmune arthritis group

    I have a new one…. already said about it on the wall,
    
    I was out one night and was talking to this woman who is a radiologist. And she said BONE GROW BACK!!
    
    I was flabbergasted!!
    
    Ive never seen someone grow back a leg or arm or finger that had been cut off!!
    
    Stupid Woman!
    
    lol J

  • JW says

    Don't worry my dear..just avoid green..don't eat it or wear it and rub this on your joints.......seriously?????

    
    
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    MJL says

    I bet the weather is affecting you?..Erm nope I dont go rusty!
    
    Oh you look so well...nope thats just the steroid glow!!
    
    Dianosed at 21, after a couple of years of oh your too young, I now just say nothing or I have a auto immune disease.
    
    Apart from you folks I think people who understand are very few and far between, so its nice to be here ;) x

    

    
    

    
    

    
    

  
  

Anti TNF Experiences and Tips

• CC says

  I started taking it at the beginning of November but I stopped taking it in February. It made me feel ill all the time and I had problems with my liver function. Initially it seemed brilliant, much less pain and stiffness but not for me.....I do react badly to most meds so don't be put off by my experiences. It is better to try something positively than worry about side effects. I found that warming the injection before injecting stopped the stinging, others found that using an icepack on the injection site before injecting worked for them. I hope that it works for you xXx

• KN says

  Hi I am on enbrel and it has been really good .has gave me a taste of what my life used to be like .but have got. A water infection now.and can't take it for a week .and all I have done today is sleep .but its worth ago .
  
  SI says
  Have just started Enbrel, took my second dose yesterday, and touch wood all going ok. Only v slight light-headedness which doesn't last very long at all. Joints feeling lots better already :-)
  
  MP says
  Since Ive been on my TNFs Ive climbed Macchu Picchu, Croissed North Africa, climbed Pyramids, work full time, garden etc...I still have the odd flare and a few bad days to remind mw of my PSA but this is as good as it gets Im Ok with that. Life without them is non existant! Good luck...

  
  
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  UK autoimmune arthritis group

  I've been on Embrel now for 3 months. Its definitely reduced the pains and flares. I am also on a low dose of MTX (10mg) but i am unsure if this is making me still feel fatigued, bad tummy, hedachey/hungover feeling still, but only on the odd week.. the weeks i get no symptoms i feel pretty well and almost 'normal'. I know they work well together, and its difficult to know what's causing the problems, me, (im also Coeliac), the RA, or the mtx.. Pretty sure its not the Embrel, the only slight effect i get is lightheadedness for a short time after. Seems pretty much a miracle drug to me..S

• MF asks

  when do all find best time of day to take it?

  
  
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  UK autoimmune arthritis group

  When you feel at your most relaxed. Some people like to do it in the morning after a shower or a bath. When I'm working I do it in the evening after my meal. But since being off aick, I have been doing it in the morning about 11ish, and I prefer it, as it's all over and done with for the day. You don't get the nausea like you do with MTX, so you don't need to add that into the equation foe best time t take etc. Sometimes, after my Humira I feel very tired the next day. J x

• JM says

  I have been on Enbrel since May last year! it has defiantly reduced my swelling in my hands and ankles and knees, though my knees have a life of there own, it makes me feel better, l was taking fosamax (for my ostopenia) and felt that it was not helping my enbrel, so have came of the fosamax, for now and got two steriod injections in my behind, that made such a big difference, l can walk around with out my knees feeling they have bags of cement tied to them, so have just taken my 50mg (weekly) Enbrel tonight, hoping for good results!!(face flushes) sometimes tired but on the whole, positive at the moment

• SI says

  Been on Enbrel now for nearly 4 months & I have to say it's been excellent. I'm much less swollen, much brighter & bloods all been ok. Side effects have all subsided too :-D It's been a godsend. 

• MF says

  Very reassuring, what were the side effects you had in the begining. I've just had the go ahead for it, now I'm waiting for the home care team to get in touch and the enbrel to be delivered, nerves are starting to kick at the thought of injecting myself, I need it to happen so I can get the 1st one over and done with. xx

  
  

• JMC says

  I have been on Enbrel now for 4 weeks (had 4th injection on Monday)...have been feeling very, very, very tired and a bit rotten, now have had a reaction at 4th injection site, which nurse thinks is infected...have been put on antibiotics and feel really rough...has anyone else had any reaction to Enbrel...?...my ankles, feet and hands are all a bit more swollen since I started Enbrel and, if anything, I feel even stiffer and "unwell"...I have phoned hospital three times over the last two weeks but never had a callback from my specialist nurse to date...am also on 25mg injections of MTX, Plaquenil and folic acid...any advice...?

  
  

• MF says

   I've also been on enbrel for 4 weeks, so far no problems with the injection sites, not even any redness, just stings when it's going in, have you tried putting an ice block on it as suggested on the ukaag site. it's still early days to get any benefit from it I was told it need 3 months to get into the system before it really works. when do you see your rheumy again, very surprised your nurse hasn't rung you back, I have had a call back before the end of the day, even though the message says it can take up to 24 hours to ring back. I have a pen to inject, didn't fancy using a syringe on myself, lols. It doesn't seem as though the enbrel caused my leg problems but I will tell my rheumy about it when I see him later this month. I'm also on mtx tablets and folic acid which deal with my nausea from the mtx. about 24 hours after I've injected the enbrel, I feel a bit whoosey and sick, but I've changed to taking it at night now so I can sleep through the bad bit. and it seems to be working for me x

  • SD says

    Humira has been a miracle for me. I went from constant pain, unable to dress myself, cut my food, barely hanging on to my job to getting my old life back. It totally took away the pain and fatigue.
    
    I've just got a new job - big promotion - and have moved to the coast. I have a social life again and am travelling, going to festivals, hiking, swimming and dancing and loving life.
    
    Also it allowed me to get off nasty steriods and mtx which is wonderful. I've had a couple of issues re low immunity and seriously regret forgetting to get my flu shot as i got a rough dose of swine flu, but nothing compared to the side effects i had with steroids and mtx.
    
    I'm 18 mths in and its still working, i'm just scared of the day it stops! injection is tiny inconvenience compared to the hell of RA and a bit of ice sorts out the injection site reaction.
    
    still get the odd flare - having one now in fact! - but very copable with and a good reminder to keep taking the injections!
    
    I'd strongly recommend it to anyone thinking about it, amazing stuff, i could kiss the scientist who came up with this.

    
    

  • JW says

    A very comforting read as I have seriously cold feet now it's actually in my fridge.....

    
    

  • SD says

    dno't worry JW - from the anecdotal evidence i hear it works well for the majority. let us know how you get on - i bet in a months time you'll be telling us how much energy you have ; )

    
    

  • YS says

    wow i am so pleased 2 hear results. I'll b avin my 3rd humira 2moro. all goin well 4 me also felt a bit more like my old self after my 1st so long may it continue.

    
    

    
    

    
    

    TIPS

    
    

  • SD says
    
    best way of injecting (in my opinion):
    
    do it at the same day same time each time - make sure you are not going to be disturbed. I usually do it between bath and bed.
    
    take humira out of fridge 10 mins before shot - it hurts more when its really cold
    
    inject in belly not leg - more cushioning in my case....but remember to avoid an area where it is likely to rub against a skirt/trouser waistband
    
    do a countdown and then a count up e.g. 10 - 1...inject...1 - 10 pull the needle out. Ideally get someone else to do it with you for the first few times until you get used to self injecting.
    
    walk around saying ow ow ow
    
    if you're really not keen rub some ice on the area first (i've only done this a couple of times when i've been a bit under the weather and really couldn't face it)
    
    if you react to the shot (and I had huge site reactions for about a year) take an antihistamine first or jump in a cool bath/put a cold flannel on it.
    
    always remember that no matter how weird it is to inject yourself or how uncomfortable an injection is they are nothing compared to how painful ra is or the nastiness of taking methotrexate and endless steroid injections. holding onto that thought got me through the first few months.......
    about an hour ago · Unlike · 1 person
    Sarah Dillingham re colds/infections - all pretty obvious immune boosting stuff but....
    
    take a berocca or multi vitamin every day
    
    don't eat crap food - stick to reasonably health diet
    ...
    get some regular exercise as you can manage - swimming is always good for ra people
    
    if you get a hint of anything pounce on it - see a doctor quick if antibiotics are likely to be required (e.g. cystitis, skin infections), get some rest, don't drink any booze, hit with over the counter remedies
    
    stock up on remedies for home and desk drawer
    
    accept that you get sick quickly and easily and take longer to recover - getting stressed about ailments inc ra is counterproductive...i'm writing this wearing a wrist splint for an ra related fracture and am just happy im as healthy as I am.
    
    make sure you learn the phrase 'I'm on immunosuppressants' and say them to any medical staff you need to speak with. if you can show a humira box do so...be aware many medical staff have never heard of it...
    
    read the instruction leaflets that come with any prescription medication - if it says it impacts immunity or contraindicates any other drugs you are on query it - don't worry about looking demanding. i missed doing this once and ended up in A & E very seriously ill when a gp prescribed an antibiotic that contraindicated with my steroids.....
    
    explain to colleagues/boss whats going on - and ask if its possible to work from home when you are under the weather
    
    oh and you'll bruise easily and your blood clots more slowly but thats ok once you get used to it.
    
    again - hang on to the thought that a few annoying colds and infections are nothing compared to ra pain.....

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    UK autoimmune arthritis group

    Some additional tips from a Rhemy Nurse for Enbrel
    
    take out of fridge 1 hour before injecting, and maybe get an ice cube on the area first to help numb a little n regarding the rash to use anti-histamine cream to help with the itching

    
    
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    UK autoimmune arthritis group

    she also said for the itching either anti-histamine tabs like piriton work too