How long did it take for you to get diagnosed/treated?

Starburst

I'm just curious as to how long it took for people to get diagnosed/treated. I know some people with autoimmune arthritis start medication before official diagnosis which is why I said treatment. Also, when did you first visit a doctor with your symptoms? How did you find the whole process?

Starburst

My story

I managed to tear ligaments in one foot and break a bone in the other (separate occasions!) in 2006, so I was used to some pain and stiffness in my feet. I had physio who suggested my pain and stiffness was abnormal given my injuries but I just trundled on. I experienced an episode of swollen wrists and hands about 5 years ago and visited my GP who blamed it on the cold weather. At the time, I thought nothing more of it.

Almost 4 years ago, I suddenly became very unwell and overnight, I went from a healthy active 21 year old into a very ill person who couldn't walk up and down the stairs unaided, couldn't wash her own hair and was virtually bed bound. My symptoms were odd and vague at first but within a couple of months, it was obvious that I was having joint problems. I saw a rheumy in August 2009 who told me I needed to visit a spa for a weekend and that I'd be fine! He didn’t run a single blood test and told me I was very hypermobile. I internally rolled my eyes as I was clearly not hypermobile, I was barely mobile! I just went home, feeling like a hypochondriac and tried to get on with things. In October, things were no better and my GP referred me for a second opinion. By November, I was diagnosed with inflammatory arthritis and started on celebrex, co-codamol and hydroxycholoroquine. It was later confirmed as RA and that the hypermobility syndrome diagnosis was laughably wrong. The rest, as they say, is history!

scattered

I think it took about a year to get diagnosed and treated but that depends on what you count as my first symptoms. I've had knee pain (diagnosed as chrondomalatia patella) since I was 12. My rheumatologists' speculate that some of that pain may have been the start of my RA, but I also definately have CP.

In January 2006, I went to a friend's 18th. I felt ok. The next day (Saturday) I went into work and barely made it through my four hour shift. I was exhausted. I went to bed and didn't get up again until Monday morning, ready for my A-level exams. I made it to all my exams, although had to go home straight afterwards and would sleep until the time of the next exam. By my final exam on Wednesday I was struggling to stay awake and slept through half of it on the exam hall. On the Friday I saw a doctor who thought I had glandular fever and ran bloods. Results came back fine so it was written off as a virus..

I never got completely better from the 'virus'. I used to have periods of overwhelming fatigue and run a small fever for a couple of days then be better again. I noticed that my hands were stiffening up when I was using the computer but put it down to being busy. In hindsight i can see all the classic signs of RA.

In July I developed pins and needles running from the elbow to the tips of my middle through to little fingers on both hands. After 6weeks I went to my GP who diagnosed carpel tunnel syndrome and sent me away with some splints. I wore them religiously but they didn't help much.

In September I went to uni. There things got much worse. I had bad swelling, pain and stiffness. I couldn't wash my hair, walk far, or do anything without needing a nap afterwards. I saw my new GP who straight away diagnosed an inflammatory arthritis. I saw a rheumatologist 6 weeks later and I was diagnosed with RA in November 2006 and put on MTX, pred and etoricoxib.

stickywicket

I was going to say 'almost immediately' but that's not quite right.

Aged 15 I went to the doc with what my Mum thought were chilblains on my finger joints but I knew they were far more painful than chilblains. He referred me straight away and I was diagnosed.

However, aged 11, I'd been virtually bedridden for a couple of months with what they then described as 'rheumatic fever' so that was probably the real start of it.

jillyb1

I had nursed my mum for 5 years when she was suffering with cancer and also RA ; when I felt the first pains of my RA after the birth of our daughter I knew exactly what it was ; informed the GP and demanded treatment for it . I was a right madam when 25 ! Jillyb

dreamdaisy

Left knee started swelling in April 1997. GP kept telling me it would sort itself out. I went to see the the physios at our local footie club (in sheer desperation because I reasoned if anyone knew about knees they would). They took photos (it was about 20 inches round by now) and referred me to orthopaedics in November 2000. Lost a year being bounced gently between orthopaedics and rheumatology, then had my first synovectomy in February 2002. I began sulph just before the operation. By then the knee was 27 inches in circumference. :roll: Diagnosed as an inflammatory arthritic in 2003 and began trying all the other meds. Such fun! DD

mazbaz

Hi everyone,
Interesting thread..................

I started feeling unwell 6 weeks after a fall from my horse. That was June 2011, Gp started on a long list of bl tests etc , always seemed to be waiting for the next set of results to come in. He finally decided that I needed to be referred to a Rheumy in Oct but I paid to go private as the wait was so long and I was feeling awful everyday.
At this point I was trying to hold down 2 jobs and look after/excersise said horse. Had all bills and mortgage to pay as lived alone and could get no help.
Rheumy sent me for yet more bl tests over the nest 3 months and still no treatment In dec 2011 I had a stand up row (!) with Rheumy as he was just dismissing me saying I "only had OA" and me saying there was more going on with my body. He put me on Plaquenil (RA meds) while still saying I only had OA ???!!!
Felt quite a bit better for the next 3 months then slowly downhill again.
Struggled through the rest of 2012 with regular Rheumy meetings and never ending bl tests...
Finally a week before xmas 2012 he told me I had OA AND RA and gave me my first intermuscular steroid injection ( o the bliss of no pain!!) and Methotrexate

Now I have just been referred to the RA follow up clinic unless I go downhill again.
Nightmare and am still in it although feeling much better physically than I used to in the early days.
PS: Rheumy is now quite apologetic to me !! :roll:

As5567

Took me about 5 years. I was told that I have growing pains for about 2 years, and then they finally began to test for things and decided I had Osteomyelitis. They then gave me antibiotics and that went on for about 2 more years. I then had a bone marrow biopsy which come back as negative. After that my parents decided to get a 2nd opinion and took me to another hospital, after a few appointments they suspected I had arthritis. I was then seen by a children’s rheumy which confirmed the diagnosis and started me on medication right away.

bubbadog

Hi, As a lot of you know it was a very long road to getting a diagnosis for me, it took roughly 17yrs and a lot of back and forth from hospitals and G.P's and lots of prodding and poking. It was a horrible time and I'm just glad now I know what's wrong with me and I'm close to finding a good med mix that helps keep everything under control. I know some of our posts explaining how long it took to get us sorted sounds like a nightmare but everyone is different and there is no average time it takes to get people diagnosed.

gemmarh100

Hello, I started having joint pains, which got gradually worse since Dec 2012....took my doc a few moths to refer me to Rheumy, but once that happened I was diagnosed virtually straight away... I am still awaiting another Rheumy appointment to start treatment, but I guess I am very lucky with how quickly things are moving. My next app is in July... I'm lucky to have a very good Rheumy, as I know everyone's story is not that quick.

Hope everyone gets answers and effective treatment asap Gem X

Starburst

Thank you for sharing your stories everyone. x

lizzieuk1

Hi starburst,
I was on holiday when my horse died suddenly, I was walking about barefoot on tiled floors when my feet started hurting, thought oh its just being barefoot as I have fallen arches, pain slowly crept to my knees but again I thought was the hard floors - started wearing shoes inside ! This was in august, came home started college again in sept and still getting pain one of my tutors mentioned ra and asked if I'd been poorly - think I had had a bit of a cold virus, nothing else said until a couple of weeks later I was really tired and could barely get out of bed, then thought oh god I have ra went to docs and said I think I have ra, was a registrar and she has as bit of a panic - think I was first ra patient she'd seen! She looked up ra and agreed called in senior partner who immediately wrote referral and started my in cocodamol and diclofenac, took bloods. By mid November I was in with a consultant and formally diagnosed. Started mtx, hydroxy and folic acid after Xmas - consultant thought I may like a drink over Xmas so we agreed to start after!!
So that's me am 9 years on now and been great until I had baby 2 years ago, starting anti tnf tomorrow - hurray

lily

Hi Starburst

Took me over 30 years to be diagnosed, told it was growing pains, then told it was because i had young kiddies so was not concentration,

I put up with the falls and dropping things for such a long time.

Finally 2 years ago i met a new doctor my hands were so bad and i was not walking right that the first thing he asked was how long had i had arthritis? i explained i did not have arthritis but he knew better, so off went some bloods and a week later after the results had come back i was off to see the consultant at the rheumy clinic...

After talking to the consultant she is convinced ive had arthritis for all this time..

Degeneration is bad so looks like im going to go through the capility route for dismissal

Just wish they had taken me seriously all these years ago

Lily x

Boomer13

This is a very useful thread for those of us in the process of being diagnosed. I hope you will keep posting stories. For myself, I find it more useful hearing about other sufferer's stories rather than telling my own over and over.....

Thanks for this.
Anna

DebbieT

I'd had trouble with my knees for a few years but an MRI was clear (in my mid 20's) then about 10 years later my right ankle ballooned up. I was a netball & gymnastics coach so I originally thought id injured it but couldn't remember how. After a month of swelling I was sent to a rheumy registrar. I had xrays done, medical history & 3 months later saw the consultant. I had OA & PsA. In all it took about 5 months from first swelling to taking methotrexate.x

Tubby

I had a sore knuckle in an end joint of my middle finger about 3 years ago but didn't think anything of it. Then in summer 2011 I tripped over and landed fairly softly on some grass. Didn't think I had done much but on standing up I found my ankle was sore. I hobbled home and was virtually in tears when I got home, so swollen and painful was the said joint. I was on crutches for a week and saw a private physio for about 6 weeks. It improved a little but never truly got better. By November 2011 I was feeling exhausted and waking up with very stiff feet and hands everyday. At about this time I was doing some research on hydrotherapy pools for work (we are digging the pit for the pool now....but that is another story) and I was reading about rheumatoid and psoriatic arthritis. As I read the symptoms I was checking them off as "yes, I have that, yes I have that" and ongoing. I then thought "you are being paranoid" and "don't make a fuss" until I read about the increased risk of heart problems and shortened life expectancy. At this point, I thought for my own sanity I should check it out. I went to the GP and described my symptoms alongside reminding him that I already had psoriasis. He did send me for blood tests, X-rays and put me on Diclofenac. The day before Christmas Eve in 2011 I went for the results to be told that I wasn't positive for rheumatoid arthritis so that was that! That was great news but why was I in so much pain? The GP just dismissed me and only gave me more painkillers when I asked him how was I going to get through Christmas. I left feeling pleased I hadn't got rheumatoid arthritis but feeling abandoned and as though I was making a fuss about nothing. I did what most would do, sulked, refused to take the tablets (after all the doctor said I was fine) and got on with Christmas. 3 days later I was in agony so returned to the Diclofenac but carried on sulking. After Christmas, I realised I had to tackle things again so I booked an appointment with another GP. She told me that I would probably never know what the pain was and I should just get on with my life. I reminded her that I had psoriasis but she dismissed this so I demanded to be referred to rheumatology which she grudgingly did. I had an appointment about 3 weeks later and within 10mins of seeing the rheumatologist he diagnosed me with 'classic psoriatic arthritis'. He immediately sent me to the rheumatology nurses, then x ray and referred me to physiotherapy, occupational health and podiatry. I was on Sulphasalazine before I left the hospital. I guess it took me about 2 months for the diagnosis which was very good compared to many others....not had so much luck getting my meds right though in the last 18months since diagnosis.