Relieved with diagnosis!!!!!!!!: Hi everyone, I know... - NRAS

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Relieved with diagnosis!!!!!!!!

Diddydriver profile image
9 Replies

Hi everyone, I know this may sound strange but was wondering if anyone else had the same experience. I have been feeling very tired for about 5 years, but I put it down to having just moved house and looking after my husband. Then 4 years ago my hand from fingers to above the wrist swelled up so much I took myself to A& E where I was told it was septic arthritis, I had infusion ( of what I don't know ) then things settled from then on my hands have been swelling more and more frequently. I kept going to GP, but by the time I got an appointment the swelling had gone down. The dr just didn't take me serious. I was still feeling exhausted, stiff in the mornings and just feeling grotty. I finally took some photo' s when my hands were bad, and surprise, surprise he then took me serious and referred me to a rheumatologist. After waiting for 3 months for an appointment She diagnosed RA immediately, sorted out blood tests, X-rays and drugs. So in a way i am relieved that now after 4years plus that I am now being believed about all my symptoms. Although I know why i feel like I do it dosen,t stop me from being scared about the future. That was last week, I still haven't got a rheumy nurse to answer any questions that I may have, but this group has been wonderful. I would like to thank everyone for being so understanding and kind.

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Diddydriver
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9 Replies
Jacki08 profile image
Jacki08

Hi chick --- yep--'I was exactly like you-- took 4 .5 years for me to be diagnosed and I felt"" PHEW""-" I now have a reason for all these symptoms etc""

I had been told it was the menopause on so many occasions, when I knew it wasn't. Having a definite diagnosis helped me to get my head round things and my friends and family realised that there was a reason for my tiredness and pain . It took about 3 months for the drugs to have any effect and about 9 months before I felt I had got my life back. Can do alsorts that I thought I would never do again. So glad you have found this site 😊x

Diddydriver profile image
Diddydriver in reply toJacki08

Thankyou Now I know that the future is positive I can put the past behind me and look forward to beyond the next 9 months or so. This reminds me that. Yesterday's History

Tomorrows a mystery

Today is a gift, that is why we call it the present.

nomoreheels profile image
nomoreheels

I hadn't had symptoms very long before I was diagnosed (I wasn't living in the UK at the time) so can't imagine how frustrated you've felt not really knowing what was the cause of your pain & fatigue. It only took 2 weeks from first seeing my GP with swollen, painful feet to being diagnosed, I thought that was norm as I hadn't the benefit of this great group of people to know any different. It was another 3 months until I had my initial consultation but had the benefit of being on all my meds on the lead up & of course being so quickly diagnosed has benefited me in so many ways as the earlier it's treated the better the prognosis. Different countries different protocol so I was lucky.

Think of it this way, you have a good Rheumy & started your treatment now so try not to be scared about the future. Of course if there's anything we can do to help allay your fears just ask, it may help. :)

Hi diddydriver,

we speak to many people on the helpline who feel exactly as you do. Not knowing what is wrong is worse than actually getting a definite diagnosis. At least then you can start to address the future.

We are not medically trained on the helpline but we can answer general questions that you may have. We have a wealth of knowledge and experience of the condition and the drugs used. We can also help in many other areas such as work, benefits, support etc. Please do give us a call to see if we can help. Our contact details are:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

We also have a website:

nras.org.uk/

regards

Beverley (NRAS Helpline)

net2012 profile image
net2012

Was suffering huge fatigue and getting no answers until I started getting redness and swelling in knuckles of hand and blood test showed anti ccp and RF factor. I felt so confused for so long as some of us know the fatigue isnot a normal tiredness.

medway-lady profile image
medway-lady

I was relieved as well as my mum had Oestoporosis and that was awful her pain was so extreme. I do not have RA so badly (yet) that it is a life limiting condition. I take MTX but nothing else as it seems to control it well although it is affecting my hair so the Folic Acid has been increased.

I have had Mortons Nuroma's removed twice but had no idea they were related to anything like RA. I have fatigue and a sore right hand but no idea it was anything other than a minor issue and most likely getting old! lol.

Since diagnosis and that was quick, my GP is excellent and I think had a suspicion for some time but since then its been a roller coaster of new conditions and medications. But I'm still me and refuse to be defined by a medical condition. So far its a challenge but I'm hopeful that I'll get on top of the medications and will feel better soon. I hope you'll feel better very soon.

stbernhard profile image
stbernhard

Hello diddydriver, it is astonishing that it still can take this long for health professionals to recognise RA and do something about it! I was lucky and got diagnosed, assessed and put on meds within 7 months. I have lived with RA for six years now and am doing pretty well. There is light at the end of the tunnel. Flare ups and fatigue will return from time to time, but they will be manageable. It's easy to say be positive, but it does help if you can. All the very best and lots of strength.

TerrilouiseS profile image
TerrilouiseS

Hi diddydriver, what a shame it took so long for you, yes after so long of wondering why you don't feel like yourself anymore, it can be a huge relief to know it isn't all in your head.

It took me from from 26 to 28 to get a diagnosis and at quite a young age it was a massive relief to get that diagnosis. I do understand the worry of what the future holds but what got me through that was being grateful for the amazing health I had for 26 years. It has taken about 8 months to relax about the future and not worry totally, on your journey I'm sure you wil have highs and lows. Try to pull out the positives where pain allows you to.

Best of luck, gentle hugs

Terri xx

Diddydriver profile image
Diddydriver

Thankyou for all the words of encouragement I am sure that with all your help along with the medical team I will be ok. I have just got an appointment with a rheumy nurse for the first time but it is not for 6 weeks. In the meantime I have made an app with my GP so hopefully he has got the letter from the rheumy Dr. Thanks again to everyone.

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