When did you realise there was something seriously wr... - NRAS

NRAS
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When did you realise there was something seriously wrong with you? Where were you when you realised this can't be right?

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I know where I was, sitting on a bench in the middle of a big shopping center at haloween, waiting for my partner. When he arrived, he was surprised that I was'nt looking at the fashions or late to meet him. (as I always was before!) Whats wrong he said? I said I can't walk, I have no energy, my shoulders and hands are sore, this is not right, I have to go back to doctor..............................................

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Also waking up in the middle of the night - every night a different joint on fire, waking him to feel that knee or elbow, we had'nt a clue what was going on, it was so scary, then I got the results of blood tests, in the middle of a meeting in work the doc rang me with a very serious voice to come in & talk.....................

I actually thought when she said RA, ah well thats not so bad, whats all the panic to send me as fast as possible to a Rheumatologist, I actually asked could it wait til after Xmas! How dumb was I?...

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My knees gradually caught fire and I couldnt turn over in bed. Totally shattered , aching joints. In the end I went to work with stick I actually couldnt walk. My boss said go to A and E. They kept me in 5 days and diagnosed RA. Rest is History and now here I am annoying all you guys!!!

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Glad someone still awake Sparkle! I am always late to the party on here, maybe I'll have a sickie tmaro! Just realised I asked a question, coz I'm just plain nosy! Haha. Nite.

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3 months before my 'real' problems started I made my partner buy us a new bed because I couldn't sleep for pain...turned out it wasn't the bed! Kneeling on the floor changing my sons nappy was when I realised I had something majorly wrong with my knees and everything else followed suit! That was 2 days after Xmas that year, great present ;) x

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i had 2 yrs plus before i was trully told r/a,i nursed my late husband,ran the home plus 2 mature kids and was a cummunity carer full time so every day was hands on very manual jobs, i used to feel aches and pains but i did go gp but told just the job try and rest, i was doing a 60hr week,but it was when i had to lift a wheel chair into my car i froze,can laugh now but my lady and i at the time didn't, it was down gp emergency and off work for a few days then all went like wildfire,was sorted out in 2 weeks and never looked back,sadly now dont work,can hardly lift a cup some days, do miss it.

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I first knew something seriously wrong when I had terrible pain in my feet, for several weeks (plantar fasciitis according to the chiropractor) and couldn't walk or get shoes on as my feet swelled from a c fitting to a triple e fitting, then the day before we were due to fly to the States, my right hand swelled up to 3 times its normal size and I could not bear it to be touched. The chiropractor used ultra sound and gentle massage and said it would go down in 3 days which it did but suspected RA and wrote to my GP for a blood test when I got back. The next day the left hand swelled up - made it tricky going through customs! In USA a cyst burst behind my left knee - ended up in Scripps Mercy Hospital in San Diego (cannot speak too highly of them), when discharged in the evening I was told by my admitting doctor that almost certainly it was RA. On returning to the UK and having blood tests, my ESR was so high, it was off the scale. Eventually (GP - not my own - dithered about for several weeks) referred to my RA consultant who ordered me straight into hospital for steroid drips - he said later he had never seen anyone as bad as me before. Spent 4 days in hospital with steroids being dripped in over 4 hours. In a wheelchair for 7 weeks prior to going into hospital thanks to the GP who did not know what he was talking about! LavendarLady

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Hi Lavender Lady, I also had extremely swollen legs, ankles, feet and the docs were so baffled I was left like that for 3 months! I couldn't walk or even get shoes on if I'd wanted to. They told me to put my legs up to ease the swelling but when I did that I was in agony trying to bend my knees again - it felt like my bones were breaking! It very quickly moved to my hands. When I saw my Cons he was so shocked at how ill I was he wanted to admit me to hosp but decided not to because of my children...it was so scary and painful and apparently not all that an uncommon a start to RA as they thought! Jo x

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That sounds truly awful & very frightening for you, when was that and are you any better now?

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When my hand blew up to double it's size for no apparent reason, about 10 years ago, and I couldn't move my fingers the next morning and it didn;t go down for three days. The pain was excruciating and when I saw the doctor, he thought I had a sting.... ohhh right one which moves about the hands now I realise how ridiculous is diagnosis was. Then I hear he has retired from the practice because he has had a nervous breakdown and tried to commit suicide. Something should have told me to go back then, but it got better and I thought no more of it until is happened again about 6 months later. It was then not until October 2010 that I was finally told I had RA.

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This is really interesting.

I first starting having symptoms in my knee when my daughter was about 9 months old. I had had previous problems with my knee on and off since the age of 16 (looking back that coupled with other unexplained joint pain I had from time to time I wonder if it was mild RA) so went to the doctor who referred me to physio. The physio thought it was becasue my feet roll in so sent me to a podiatrist who made insoles to realign my feet and knees. In the meantime my hands had started swelling badly - I went to the doctor who said that this was hormonal because I had just stopped breastfeeding my daughter and it should settle down in a few months. I then went back to the doctor becasue my neck and shoulders were now really painful - she said this was because in the insoles to realign my feet and knees (which were still just as painful) was also realigning my spine and prescribe me pain kilers so that I could sleep.

At this point I just thought I had to put up with it all and it would all gradually get better. However I was gradually getting worse but I didn't really realise until one day when my daughter was about 17 months I couldn't get out of bed to get her from her cot. My husband got her for me put her on the bed and went off to work. I then realised that I couldn't pick her up and could hardly move. In tears I phoned my mum who lives near by and she came round. Got my daughter dressed and then got me up and dressed and issisted I went back to the doctor. I phoned the surgery and the only appoinment I could get was with the new registrar. I went to see her and luckily for me she had previously worked in a rheumatology department and realsied what it was imeadiately. She quickly arranged for blood tests and referred me to the hospital. She also prescribed strong anti inflamatoires that helped a lot.

Becky

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Hi Becky, were you told you had growing pains when younger? I had terrible pains in my knees and back - looking back it could've been the start of my RA. My son was 1 just before my problems started - when I couldn't lift him (hands so sore and fingers bent) I used to drop the side of his cot, bend over, grab his sleeping bag with my teeth, lift him and scoop him up out of the cot with my arms! Luckily once out of his bag he'd crawl and then go up/down the stairs by himself. He had to climb into his high chair by himself and very quickly learnt how to feed himself! It's amazing how much pain I was in just holding a plastic bowl and trying to lift a plastic spoon! So far removed from those awful days now thank goodness! Jo x

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I wasn't told it was growing pains, but nobody seemed to know what it was and kept changing their minds about what it could be. If I took ibuprofen for a fews days it would gradually get better but it kept coming back.

When I was at university one day I woke up and my big toe joint had completely seized and was very painful. They couldn't find any explanation and after a week of anti-inflamatories it got better. A couple of times I had similar problems with thumb or finger joints but again I took ibuprofen for a few days and it went.

A year or so after leaving university I had a lot of pain in the top of my foot just behind the toes. I was referred to a podiatrist who thought it was a trapped nerve and made me some soft pads to releive the pain. The next year I had something very similar in the other foot.

Another day (probably a couple of years before my daughter was born) I work up with a very stiff and painful shoulder. I had to phone in sick as there was no way I could drive the car. I rested it for a couple of days and took ibuprofen and it seemed to get better but it did niggle a bit for quite a while after.

Nobody (including me!) had ever linked these things together - probably because they were spread over several years but looking back I can't help but wonder.

My daughter never crawled (or even tried to move!) until she was 15 months and started walking. Even when she walked she had no idea how to tackle stairs so she wasn't much help to me! My son is now 20 months old. Luckily (as he is much more solid!) he did crawl. He always climbs the stairs with me following. When he wants lifting out if his cot etc he know to hold his arms out so I can put my arms under his and lift him without having to put any strain through my hands or wrists. From a very young age I have always lifted him like this and he has learnt to cling on to me. It is amazing how well they adapt and how independent they can be.

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Hi Becky, That is very interesting as I have often heard as it was in my case too, that a locum or in otherwords a doctor who is not familiar with you, that will often order blood testd, I had seen my GP 4/5 times with joint pain, she actually rang me and apologised for not requesting blood tests for RA / Lupus, she thought it was stress!

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yep was told i had growing pains form about age ten!! my knees have clicked since that age but dont think was ra related for me just noisy cartildge x

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started with stiff fingers then a couple of days later woke up in the morning and hands were clamped shut. Couldn't open them for a few hours. I was very scared. Sheila x

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Hi Emandemum & Summer, I was also told I had growing pains when young, my legs used to ache so much and my back as well. Everything was put down to growing pains then which I understand is a recognised condition as bones, ligaments, muscles etc are all stretching as you grow, so don't think it had anything to do with the RA which I was diagnosed with in February 2008 many years later. Only found out last year through my cousin, that her father (my uncle and my father's brother) was diagnosed in his 60's so clearly there is also a family connection as well.

Today my hands and wrists are painful as is my right shoulder and my knees. Feet also playing up - think it is the change in the weather as very damp here in Norfolk. I also can't get my signet ring on my right little finger as the joint has swollen so much. Interestingly enough, it was an orthopaedic surgeon who diagnosed the RA and referred me straight to my RA consultant. I had been referred to him by said useless GP as he thought the cyst needed removing! It had gone of course, when it burst! LavendarLady

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When I stopped breast feeding thinking that all my pains apparently caused by hormones would go away, within 48hours I couldn't move (my first flare)

My doctor rang and said, ''your RF test was really really high'', I said stupidly, ''well it could just be viral couldn't it?'', she responded with a laugh (!!!)

But when the nurse told me last week that the result was 2010 (when 400 is high) now I understand why she was amused :)

Interesting question Gina :)

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I am sure we all have stories that could fill a book, I reckon we have all have had lots of time to reflect now. I wonder what the real lesson is here? I certainly never paid any attention to my kids and their growing pains, can't say I ever had an ache (aside from knees when standing after sitting for a long time ie. cinema) and elbows gardening the year before diagnosis. Mine was initially palindromic > full blown RA. The weird tiredness was what really made me worried, I used to look at others on bus and say why am I so tired? The Humira has helped greatly with fatigue though.

I dont know if the levels of inflammation in blood esr & CRP mean that it is a worse form of RA or that it has just gone on longer uncontrolled.

More importantly these days to me is my liver function with all the meds - I feel now I was lucky I got a diagnosis within about 3 months. Really some of you got very bad primary care!

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I woke up one morning at 5.30 in 1997 (age 39yrs), could not move, felt like someone had come in the middle of the night and battered me with a baseball bat. As I lay there I thought, this is it, as my father had it and had had 2 new hips, 2 new elbow and 2 new knees. I had watched my Dad go from a tanned, brick layer with a very active social life, to a deformed, disabled man in a wheelchair with chronis pain and he was only 42yrs.

Anyway, I had been going back and forward to hospital appointments, blood tests, xrays etc for 3yrs prior to 1997 and kept saying I have sypmtoms like my Dad, but would they listen!! No treatment, only pain killers etc. As there were no positive tests for it in blood tests, hey I could not be diagnosed. I beleive if I had been given treatment at that stage perhaps things wold not have progressed the way they did.

So, that morning a GP I had never met before came to the house (that was after I had wet myself trying to get to the toilet) and he diagnosed me staright away, because his daughter had it!!!

So it was steroids to calm it down, could do nothing for 4 days, could not lift a cut or hols a cigarette to my mouth (stopped now), had to use a walking stick, then it trial and error for the next 3 years with methotrexate, then salphasalazine. I made the decision to stop taken both due to side effects and discussed with my Rheumatologist, that I would rather have a rest from the treatment as I did not know if it was making any difference.

I then went into 10yrs of remission, it was amazing!!! I was left with a deformed foot, my right wrist joint had frozen so could not bend ( I did learn to write with my left hand and got very good at it) and limited movement in my neck.

But I could do the garden, go long walks, camp, go to T in the Park etc, retrained and have been employed for the last 8yrs, having had only the occational day of.

It's back with a vengenge now, been in a flare up on and of now for the last 2 years, was given Lefludamide, but side effects stopped that, I have had steroid injections in my hands, ankle, toes, shoulder, when things got to a point where I thought I needed respite as it was 24/7, relentless.

So here I am, getting my head round the fact that I may have to stop working, I was awarded Access to Work, that allows me to use taxis, where the dept of work and pensions pay half with my empolyer paying the other half.

I am lucky, as my employer has been very understanding.

I find that meditation works for me, that was something I learned back in 1997, when I was so desperate I would have tried anything.

Have an appointment in July and will go armed with information gained from this website.

Take care everyone.

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reading through on here i have realised that i possibly have had r/a from my teens, i was very sporty when i was young, horse riding volleyball etc anything was a challenge but into my late teens i slowed down alot as i was always tired and stiff,i got the growing pains thing or its just your age when i saw my gp so i got on with it with paracetomols or asprin, my parents called me rip van winkle as i slept so much but it was probably due to onset of the r/a,makes me wonder,i have one aunt with o/a so suppose gp's not so familiar in those days.

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I first started with any signs of pain around age 9, however I had been in a bad rta at aged 7 so this was put down to growing pains made worse through the healing process.

These pains got loads worse and at age 13 they were really bad and even caused many days off school, same again they were growing pains, Mum n Dad used to call me Adrian Mole!

In my early twentys I started to suffer with a lot off back pains, while still suffering with the so called growing pains, which now turned into cramps many times too.

My GP at the time blamed my back issues to siatica and I still had growing pains!

In my late twentys everything started to get worse, I seemed to suffer with back pains Siatica again, along with leg pains still including knees, my feet used to swell teribly but I always put this down to standing on them for 8 hours a day.

At thirty I started with sore eyes, it got to the point were I couldnt stand light, I seen my GP and was urgently reffered to the eye unit and treated for Uveitus, which spread to both eyes and took me two years to get better, I still have floaters and pain from it.

At 31 I still had constant bouts of siatica and I also started to get hand and wrist problems my hands were being put down to rsi. Can I also add in all this time no one had done any other test other than the rheumatoid factor test. A few weeks after being diagnosed with siatica again, rsi and traped nerves as the pain was in my legs, shoulders etc.

I waited 8 weeks with these pains, and everthing was a struggle I couldnt sleep couldnt get comfy nothing I was waiting for Physiotherapy.

Then when I went to my physio appointment the physio examined me and had a worried face and asked me to wait there while she got a second opinion, another physio came in he examined me then they both left the room again for a chat, I was sat there worrying what could be wrong.

They came back in and explained that they didnt think it was either siatica, trapped nerve or rsi, I asked her what she thought it was and she said she couldnt comment on that I would have to see my GP she asked me to phone my GP there and then and get an emergency appointment him, I managed to get one a couple of hours after so she sent me away with a letter explaining that she thought the diagnoiss was wrong and that she had concerns that I had more serious problems and her advise was that I was sent for a MRI scan a.s.a.p.

I returned to my GP who didnt seem really bothered but agreed to the MRI scan, my scan was booked but the waiting list was around 12 weeks so I had to wait.

Approx 2 weeks after my symtoms seemed to worsen, I was that bad with the pain and felt my GP didnt care that I went to A & E, once seen they asked me all the questions they were rather concered about my hand as all my wrist was swollen along with each finger and all my knuckle joints being very swollen too, they x rayed my hand and found no significant damage so told me to go to my doctor for stonger pain killers as they could only prescribe paracetamol or cocodamol, and wait for my MRI.

In the mean time I went back to my GP seen another one this time as mine was on holiday, I was reffered by this doctor for blood tests the same day, he also did water samples and reffered me to the rheumatology department to be checked out he told me there and then he thought it was an arthrology problem.

I felt so much better feeling I wasnt going mad and finally someone seemed to listen and care.

I continually deteriated and another 2 weeks in my appointment had come through for in another 3 weeks however I had got to the point were I couldnt get to the toilet every move was a little shuffle and painfull on feet, knees, hips and back, I needed help to lift my head and even stuggled to lift a cup, so I ended up being straw fed my drinks. My family were that worried with my health and weight loss of three stone within a few months that they phoned the emergency GP out, he still felt the same and said to wait for the appointment but in the meantime he would give me some amytriptiline to help me relax with the pain and a 20mg dose off predisolone.

Even 20mg's of pred didnt make much difference and a week later over christmas my joints had contiuded to swell, the day after boxing day I woke to find my right knee was twice the size since I went to bed.

I went to A and E but I was away staying with friends at this point so I had to go to there local AnE. After lots of prodding and poking and blood and water tests my knees were asperated and I was given a steriod shot into my knees. I was kept in a few days for observations, but they told me as I had appointments to see rheumatology in my own town a week later they would leave it to them for diagnosis.

I week passed and I felt the same some days had been worse than others. I got to my appointment and I couldnt see my consultant due to weather problems so I seen another she spent around 3 hours examining me and asking me everything trying to make sure I hadnt forgotten any symptoms. I still had two week to wait for my MRI scan however she didnt want to wait that long, and she prescibed me with a higher dose of pred 40mg and I was to go for an Urgent MRI that day along with blood and water tests booked in for the same hospital. I had all these tests done along with a chest x ray.

I week later I was booked in to see the original consultant on an urgent basis and he phoned me one day and I seen him the next as a week had passed on 40mg off pred and still no improvement he upped me to 60mg gave me leaflets for methotreate and sullfazazine, then he booked me another appointment for in another weeks time in which he expected to be able to have the results of all my bloods, water tests, MRI, and x rays.

I went back a week later I wasnt feeling much better but had been managing to eat a little and I mean a little and I could lift my head on my own but still needed help to get out off bed walk etc. He told me the results shown I had sero negative rheumatoid arthritis and that my back pain was so bad as I had degenerative disc diease and he listed all the discs that were damaged and basically rubbing bone on bone. He sent me away again with another upped dose off pred 80mg and methotrexate to start straight away at 10mg and to gradually build up to 20mg, along with the folic acid and then also a prescription of sulfazaline to start one month after starting the methotrexate.

I started the methotrexate and I didnt get any side effects from 10mg except a bit of hair loss which I wasnt worried about as my hair was so thick anyway.

However after I started the sulfazazine I started with severe migranes, which got worse each time I upped my dose every week after three weeks off hoping the migranes would subside I finally phoned my rheumy department the nurse was concered why I hadnt phoned after the first week, I explained I was so much more worried about my arthritis and the pain and disablitly that was causing that I was hoping the migranes would ease and that I could carry on with the treatment, however they stopped the sulfazazine and told me just to carry on with the pred and the meth.

I then after 6 weeks upped my methotrexate which caused really bad nausea, stomach cramps, the hair loss contiued but I still didnt worry about this and mild headaches, after a good few more weeks my headaches got worse but they were never anywere near as bad as the migranes I had from sulfazalizine and these symptoms only lasted 2 to 3 days max.

After 8 weeks I went back to see the rheumy and I was rather concerened that my symptoms hadnt eased and that my condition was no better I was also rather upset as I had previously thought my condition wourl go away soon and it was not explained to me on previous appointment that this was a chronic condition.

I was refered for another appointment in a further 6 weeks I was told to increase to 20mg of methotrexate and told after getting to 20mg to start to drop my predisolone from 80mg to drop it down by 2.5mg every week untill I had got to 40mg.

I seemed to get a little better being able to walk rather than shuffle, being able to lift a cup rather than straw fed, but still major stiffness up to 2 hours in a morning, lots off pain etc.

Since then Ive had a good few appointment since Ive been added Enbrel to my list of medication approx 8 weeks ago and I am now just waiting to see if this is my miricle drug, no noticable improvement yet however my GP says my bloods are improving so I am still very hopefull.

In between all this I missed out that my Rheumy also says I have fibro which he will try and sort the medication dignosis etc once I had hopefully got some improvment from my enbrel he said he will know better just how much off my pain is from either once I get an improvment hopefully from the enbrel.

So here I am still struggling to walk, using 2 sticks to walk and a wheelchair for further distance as standing and walking causes so much pain in my feet, knees and lower back.

However I am back to work for a couple off hours a day which is keeping me sane, as being at home with Jeremy Kyle every morning was ready to send me crazy! My rheumy did offer to sign me off work for good, but when I said I got depressed when not in work he said that as long as I didnt work for two long in a day/week he would agree to me carrying on, so he now does me a sick/fit note every 3 months to say I am ok to work but never to work more than 4 hours a day! I normally manage about 2-3 max

Really hoping that my condition improves soon so I can work more hours and maybe get rid off these sticks if only! I have tried I few times but ended up with my knees giving way and falling and needing to rest to get over the fall.

I have now addapted my life with so many gadgets and gizmos to try and make my daily life easier.

Sorry for the long story just feels good to share with others although its taken me days to type and I probably have forgoten lots as I really seem to struggle with concentration and memory! My GP says its probably fibro fog!!

Its good to read everyones elses responses and realise that even if remision is unlikely there is still hope off getting on with life better.

I have really thought off giving in at many points in this journey however with all the advise and support from this site it makes me feel more hopefull everyday.

Thanks to all of you for your contiued support and advise xxx

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Hi RA Fib, What a story, you have really suffered! Amazing no one picked up it could be RA earlier, anyway you can only move on from here. I hope the embrel does the trick, bloods good indication, I think improvement is very gradual, no overnight cures for us lot, that old magic pred is over prescibed I think while they are trying to figure out what to do with patients, 1mg a month is a reducing dose not 2.5 a week amazed you could get off them. It is worth noting that when you come off steroids you can suffer awful fatigue, and this can be very confusing. Anyway, glad you got that all down on paper so to speak, very theraputic and can make sense to have a time line for yourself.

Take it easy & love yourself.

XXXX, Gina.

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