Start with the ra?

Where did it start and what did you do?

Just nosy

I m nosy too Jenni, how did it all start for you ? ( you can tell me to mind me own )

Julia x

Good question Jenni.

I think I have had it since birth but only flared very occasionally over the years and did not know what was happening. Joints were very painful on and off but despite numerous visits to the GP nothing was every diagnosed.

Following two years of horrendous stress trying to get my Husband medical retirement from work, things started to go down hill. We finally succeeded in getting him medical retirement in the January. During the spring I noticed a really bad pain in my elbow, especially at night. In the summer I caught shingles. That Christmas, I had horrendous flu and never saw Christmas and New Year I was so ill, even though I had had a flu jab. By the January I felt so ill I thought I must be going through the menopause. Luckily for me a new and on the ball GP spotted the signs of RA, I was referred to an RA Consultant and all hell broke loose when they discovered how much damage had already been done ............... and the rest is history.

Jackie
xx

This is a good way of people (hopefully) wanting to share their journeys......

Mine was after having my daughter, I had c-section due to large baby and being over due date.
That knocked me back (my body doesn't like anything done to it)!
Had cold, then went to doctor feeling rough - he said it was a cold.
Starting feeling like I couldn't walk very well just shuffling along. The stiffness all over and being wiped out.
Went back to the docor, he said its just a viral infection.
Couldn't shake it off so got an emergency appointment to see a senior partner of the practice with my husband, so hard to walk up a flight of stairs. He listened to us, said the same as previous doctor - I said I have never felt bad like this before! He did blood tests.
I think I was called back to the surgery, and the usual doctor was matter of fact and said I refer you to rheumy its arthritis.
Saw the consultant quickly, a week or so later I could not move at all so my husband took me into a&e, they read the notes and said it was a flare. I gave my baby one last feed. Then taken to the ward where I stayed in a side ward for one nite so I could express milk from a pump they found for me to get rid of breast milk because it was infected with the steriod injections and started me on oral steriods, and wanted me to rest my body but did not sleep much.......used to doing nite feeds!!
My daughter went home with her dad for the nite (I had tin of baby milk as a back up before she was born) steep learning curb for my husband!!! Had visions he would be up all nite like other nites - but no she was full on powder milk!
The hospital x-rayed my hands and fingers. (On surgery forum - recently mentioned I had my fingers and hands xrayed for a second time).

34yrs old in 2007 when ra came along, it was a really strange time, so happy being a mum but trying to take in ra........we have to get on with it !

Jane
Xxx

Jenni

I want you!
Can I pick your brains please??!
I do a new thread now,
Jane

Its nice to be wanted jane!

Heartbreaking that not one of us had early intervention to stop damage ......................

Jackie
xx

I agree Jackie. Heartbreaking. There seem to be two recurring themes here. First, people knowing there's something wrong and not being listened to. Secondly I'm amazed at the number of people who got odd joint pains flitting here and there to begin with. I'm sure the text books don't describe this as typical. This is how it was for me too and I had thought I was an unusual case. I find it quite moving to read everyone's stories. Naomi, X

wow, some very heartbreaking but interesting stories..

I've had problems with my left knee for many of year's - going through my teenage years, the doctor always put it down to 'growing pains' so I never thought anything of it. When I was 17 it became more painful so back to the doctors I went and they referred me to physio, Physio then strapped my knee saying it was something to do with growing pains and my knee cap, never thought anymore of it and just presumed the pains would go. I had my son when I was 21 and all the pains went, so I thought it must have been growing pains and had no more pain since. Enjoying my son grow up was the best thing ever, always taking him places, doing active things just generally love being a mum. I went back to work 9 months later and my left knee started having twinges but thought it was just me! In January 2011 at 23 I fell pregnant with my daughter, the minute I fell pregnant I was in tremendous pain with my left knee. There was nothing the doctors could do because I was pregnant, so patacetamol it was! As soon as my daughter was born in the November, I was straight back to my doctor, referred straight away to see an orthopaedic surgeon, I then thought I would be waiting ages! To my surprise by the last week of December/first week of January I received a letter to say I've got an appointment. Within a month of seeing the orthopaedic surgeon, I had MRI scan done and was booked into have key hole surgery. The results of my operation come back with a rheumatoid factor - the consultant wasnt surprised at all by the size of my knee!(it was that big the only trousers I could fit over it was joggers or really stretchy ones and still they were tight!!) I was then urgently referred to a rheumatologist who diagnosed me with RA(in March this year). My rheumatologist wanted to start me on medication as soon as she could, but due to blood test coming back with a dangerously high liver count she couldn't! By this time many of my joints hurt including my neck, both knees, wrist, my right hip and on bad days my fingers. After seeing another consultant about my liver we managed to get to the bottom of the cause to my high liver count and finally started medication in July/August! I've never known something to be so painful and many of nights I end up crying myself to sleep because I feel useless with my children and hurt! Luckily I have a very supportive partner and family who help out alot with the kiddies!
I'm hoping to start feeling better by Christmas!
Still finding things very hard and trying to take everything in!
Natalie xx

Wow, I haven't been around for a couple of days and missed this thread when it started - but my goodness it is so heartbreaking to read of how it all started for you all. My journey has been quite recent and I think that I am benefiting from the changes to the NICE guidance to treat the RA more agressively from the outset, but it's frightening to think of how different it could have been.

It probably started 3 or 4 years ago - maybe more - with strange swellings in different joints. I was working as a maths assistant at a senior school plus I had 4 children at home, so I felt pretty stressed out most of the time. I thought it was just that I was overdoing it and kept on battling on and didn't want to bother my GP, but I can recall being very confused. The joints affected varied every day and the pain was annoyng rather than debilitating. I suppose I must've been tired but I just assumed it was because I was working full time plus running a busy household. Eventually I woke up one morning and all my fingers were like fat sausages, both hands and I couldn't do anything and it hurt so much. So finally it was enough to send me to the GP, but of course by the time I saw him the swelling was reduced and he said it was just "arthritis" and getting older. I did have blood tests which were RA negative, and that basically sealed my fate for the next 3 years, because he repeatedly tried to persuade me that I had osteo with slight inflammation caused by the OA.

So over the next 2-3 years I got gradually worse, but it wasn't a flare like others have described and so it wasn't typical. I just adapted to a slower pace of life, I left my job (I still thought it was just me overdoing it and the pay was pretty poor so I could live without the income), the house gradually descended into a shabby dump because I got so tired all the time. I had a referral to the podiatrist because my feet hurt all the time - but they just told me to keep my toenails short and gave me insoles; I tried lots of special arthritis diets but they didn't help; I lost 2 1/2 stone at slimming world which helped a little bit but not enough; I tried glucosamine and other supplements, which didn't help; I joined a gym and went to exercise classes and that did help but mainly showed me that I was living like a 70 year old (I'm 54). And as time went by I got worse and worse - getting out of bed took me an hour with lots of stretching before I could put weight on my feet. If I needed the loo quickly then I had to grab my sticks and struggle, and often didn't quite make it. But of course once I was up and moving the stiffness settled and I looked fine, I had a slight limp but that appeared to be all. So whenevr I saw the GP he would see me at my best - ie after I'd got up and dressed. Did I mention that I often needed help to do my bra up - how humiliating! But I've always had a can-do attitude and I couldn't allow myself to show how bad I really was. I think I even fooled myself - with hindsight how stupid that was.

Eventually the GP referred me to a knee surgeon - the limp was very pronounced and the knee swollen. After the usual MRI and xrays, he diagnosed a Bakers Cyst and gave me steroid injections - which were miraculous! No pain - anywhere!! Bliss!! But only for a few days then it all gradually came back. Meanwhile the GP still claimed I didn't have RA, and it was only after another couple of knee jabs that I finally persuaded him to refer me to the rheumatologist - I even had to get the knee surgeon to back me up. All this time I had no idea what RA really was, I hadn't discovered the NRAS, I didn't know anybody with the same symptoms as me; the internet info was baffling and with no diagnosis I remained totally confused of the difference between OA and RA - in short I was a mess and the NHS no help at all. I felt very isolated.

At the rheumatology dept I first saw the registrar who only saw me the same as the GP had - she wrote a long report downplaying all my problems and said that I MIGHT have inflammatory arthritis. She suggested I wait until all the effects of the knee steroids wore off and then see me again. That was the hardest time - 6 weeks of agony. How could I be that bad but get no help???

Eventually I saw the consultant and everything suddenly changed. She saw immediately that every joint was inflamed - the RA was everywhere and that was why it was hard to see the swelling, because it was uniform - no big bulges, just everywhere a bit chubby. I'm still RA factor negative, but the other one is positive (why didn't that show up sooner I wonder!). She understood exactly what I was saying and how I was stoic and had become habituated to the pain, so much so that I'd even fooled myself and everyone around me. She immediately started me on steroids, and HDX. I started MTX soon after that (once the HDX had got established). Now after 3 months of MTX I will soon start sulphasazaline, and she is optmistic that I have avoided major joint damage and am doing well on the meds so am currently in remission and hope to remain so.

It was a truly horrible experience and I feel for all those of you still going through it. I feel incredibly lucky that I am tolerating the meds and they are working well, and I've had to make lots of adjustments to avoid going back to that awful state. And now I intend to keep on top of my health and not allow it to get so bad ever again and I strongly believe that rest is a key part of that process. I've learnt I must pace myself and get help as and when needed - I can't do everything and it's silly to try. And I especially NEED my meds to enjoy being me - that's a tough one to adjust to, but I have to accept that they are part of my life now and I must not resent them because I need them.

Very best wishes - Sylvia xx