National Rheumatoid Arthritis Society

Got to get my head round all this

Hi all,im new to all this. Im finding all the info v interesting and all the blogs and comments a great help too. Ive been having aches ,pains and stiffness for a couple of years now but have been dismissed by my gp and others in the practice and tbh at times felt like all the pain was in my head.Even though my mum was finally diagnosed last year with RA after 3 years of negative blood tests i still felt as if i was being fobbed off. Finally a locum doctor referred me to the rheumatologist at the local hospital and at last i dont feel like a nutter. I was diagnosed with inflammatory arthritis just before christmas .I have exactly the same pattern of symptoms as my mum had. After trying a few different medications im currently on sulfasalazine but it doesnt seem to be doing anything,im having a really bad week pain wise and had to call my gp this morning for a prescription for stronger pain relief. Im still working full time and i can usually cope to a point but it all seems to be getting on top of me. Mind you its not all doom and gloom, one bit of light relief was when my mum and me went to Tesco this afternoon,we both were limping as we went in the entrance and just looked at each other and burst out laughing. We were like a couple of little old ladies! Ah well tomorrows another day,hope it brings less pain:)

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16 replies

    petti1
    petti1

    Hi and welcome to the site. I have been diagnosed a year now and I know it is hard to get your head around it. I think until you have the pain under control it is really difficult. You should be prescribed an anti inflammatory (naproxen or similar) and paracetamol helps, but in the early days you need stronger stuff until your medication for RA kicks in. Codeine is used a lot, or tramadol. I was in really severe pain, couldnt even cut up my own food, but a year later i am often stiff, but free of that pain and life is relatively normal. I had to cut my hours, mainly because of tiredness, I work 3 days now but that is just right.
    There is light at the end of the tunnel honey, its unfortunate that RA meds take so damn long to feel an effect. You will find a lot of sympathetic ears here, and if you have any questions, someone always know the answer, or gives good advice!
    Enjoy the BH weekend, Petra xx

    TildaT
    TildaT

    Yes welcome to the site - sorry you've had to find us but this really is a good place to come and as Petra says it is very informative and supportive too. I'm sure you will find things much easier once you are on the right medication. I'm on Methotrexate (MTX) and haven't got the terrible pain I started out with at all now - just a few aches and sore joints still and I'm not there 100% yet but sure I will be soon - things are already a lot better. That's really strange about your mum and you both being diagnosed so close together and at least it means you know what each other is going though and can be truly supportive of each other. Keep coming and get your mum to come on board too! Tilda

    PaulineS
    PaulineS

    Welcome to the site, like you I have inflammatory arthritis which was ignored as my blood markers were negative, fortunately I was able to see a Rheumy who agreed that I had both OA & inflammatory arthritis. I still feel as though I'm a fraud and don't have it!
    I started on Hydrochlorquine (sp) along with co-codamol, amytriptiline & Meloxicam, Sauplha was introduced but after several months I developed a side effect so have come off it. (bad taste & smell)
    I'm now waiting to start MTX,
    Most of my joints are affected but I push myself to carry on even though my knees are pretty rubbish!

    sylvi
    sylvi

    Welcome to us all with ra and other diseases assocciated with ra. There a great bunch of well informed people on here and all will be willing to help you whenever you need it. When you don't know whats wrong and the gps keep fobbing you off you do think your off your head. I did until i got a gp to give me a private refferal and it turned out that i have knock knees and the put a straight joint in a bent leg. I can tell you the relief i felt when i was told that he could help was mind blowing. At last someone was listening to me.

    I can imagine you and your mum trundling into tescos and i have to say i too thought it funny.
    Anyway welcome we do manage to have a laugh as well as a cry.
    Sylvi.xx

    codliver
    codliver

    Ladies thank you very much for the warm welcome and your kind comments,its means alot that other people know how i feel and that im not some kind of hypochondriac:)xx
    I too was started on Hydrochlorquine but had a bad reaction to it and looked like id been burnt allover. The naproxen didnt rate too highly either .I guess its just trial and error with the medication as to which combination works for each person. Knees are still a bit sore today but ill stick with paracetamol until i come home from work tonight, The doc gave me Acupan tablets yesterday but i darent take any till tonight because i have an 8 hr shift later and dont know if theyll make me feel ropey.Its good to know that there everyones sense of humour is still in tact after all we put up with but its what gets me through most of the time. I look forward to sharing your experiences.xx

    fizzy
    fizzy

    hi, your story is so similar to mine, and probably many others.....
    I'm 2 years into a diagnosis of RA (when i was 33) and about 4 or 5 years of problems, since my daughter was born I suppose. Also, my dad has the same problems, but for quite a few years longer.
    It is definitely about getting your meds right...I'm think I'm getting there, but still think theres room for improvement.
    I'm in MTX injections (20mg), hydtoxycholorquine, diclofenac (not naproxen....which did nothing fo rme at all) and paracetamol (which I have found to be really vcery useful).
    I've had a problem with my knee which I had operated on, had a synovectomy and a massive cyst removed...thats settling down now, still a bit of a problem, but much better than it was!! :-)
    Psychologically I';m in a better place...it has taken me a long while to get to this point I too work, although part time (as a physio), and I'm doing a masters degree, have 2 children and I like a hectic social life too....its hard fitting everything in!! But thats the way I like it...it certainly keeps me going....and positive too!!! Lifes too short to waste!!
    Hope you get sorted and things improve....its useful to be able to share your feelings and problems with your mum....and with peeps on here too!!!
    take care x x x

    codliver
    codliver

    Hi Fizzy,thanks for your comment I like to keep busy too. Im 37 with a 12 yr old son and if im not working im ferrying him to karate etc.I I like to see the girls too but cant drink as much on nights out like i used to,which is probably a good thing :) I try to stay up beat most of the time but i do find it difficult having to rest,it frustrates me. Anyway looking forward to sharing things on here:) xx

    helixhelix
    helixhelix

    Hi there. When I finally got diagnosed I stomped into my GPs surgery and asked them (well, insisted!) to put up one of the NRAS posters about the first signs of RA.. It made me feel much better sticking it up just opposite my GPs door, and I really wanted to put a big arrow up beside it that said "doctor X please read this!"

    You can downlod the posters from the NRAS site or ask them to send you one. It's called have you got the S factor.

    www.nras.org.uk/about_rheum...

    Anyway, once you're diagnosed it does start getting better - even if only slowly. Take care. Polly

    codliver
    codliver

    Hi Polly ,What a great idea:) I certainly felt like going into my gps surgery with a megaphone when i was diagnosed and sticking the finger up at the receptionists too.Im not a nasty person but i would have certainly felt justified in doing it. Im sure they still sigh when they see me walk thru the door lol. I have more good days than bad atm and im trying to stay positive,i just have the odd depressed day. At least i know what im dealing with now and ive realised doctors arent always right.xx

    fiqi
    fiqi

    Iam impressed and excited to join this important and meaninful community blog. I have been feeling low and helpless lately because i have this thumbing head headache, joint aches and nausea(no vomit) and all my Gp tells me is that am ok and it is only the weather(can u believe?) and it will go with a mere pain killer. Indeed the pain killer works for me but only for a short time and am back to square one. Any advice? Thank you.

    codliver
    codliver

    Hi Fiqi,so sorry to hear that youre feeling like this, I know exactly how it feels to be dismissed with painkillers. Hope you can get support from this group.Can you see another doctor at your practice? or even move to a different surgery? I started to make a diary and write down my symptoms.How on earth can a doctor tell you its the weather!! You will have to make a nuisance of yourself and make them listen to you. Hope you get them to take you seriously,Take care xx

    helixhelix
    helixhelix

    Yes, it's a sad fact that lot's of us have had a struggle to get diagnosed - especially if you're seronegative so nothing shows up on first blood test. I can recommend keeping a daily diary so you can tell your GP what hurts, how much and when, and also look at the NRAS website about diagnosis to see if your symptoms sound similar. And have you actually asked your GP to be tested for RA? Sometimes a direct question can help. Polly

    roger-s
    roger-s

    hi codliver, nice to see you here, not so nice to here you are suffering, i have had it 15 years and i find the acid in wines whisk etc irritate and cause me pain try to keep away from acidic foods. until the tablets kick in,good luck

    codliver
    codliver

    Hi Roger,thanks for the tip. Ive never really been a drinker but did tend to fill my boots on the ritual girls night out every couple of months or so. Now i just tend to have a couple of vodkas with a meal on the odd night out (if i can be bothered to go as im finding wearing heels a no no and i cant sit for long periods without stiffening up lol ) Cider and wine make me feel terrible. Ive heard about acidic foods before and i will certainly look out for them:) x

    lynn-bel
    lynn-bel

    Hi- Welcome and as has been said, you will find a lot of help and support on this website, some good ideas too! Same as you, my GPs didn't think anything was wrong - one put my knee problems down to old age !!! (I was only 52 a the time) and like you, it was a locum who put the wheels in motion to get me tested and sure enough, despite fervent pleadings with whomever is up there, it was RA. I have had it now for 12 years and am on methotrexate which suits me. i started with sulfazalasene (sp?) which didnt like me at all but am fine now. Still get the usual symptoms and have flare ups but have learned how to take care of myself, pace myself, concentrate on what I can do and accept what I can't and you sound as if you at least have kept your humour, which is priceless. My younger brother and I were trying to make a bus, he couldnt run due to having had a stroke and I can't do more than a quick walk, so we were laughing about us both trying to catch the bus! Must have looked so funny.
    I do take quite a few supplements that I believe help me. I cut way back on tomatoes as they seem to increase pain but still drink (tho not supposed to, but I'm realistic) - keep it down though. Get as much info. as you can about the disease, knowledge is power. And let your body tell you what works, listen to it. And, stay positive, active and keep laughing with your Mum!
    Lynn x

    codliver
    codliver

    Hi Lynn,thanks for the welcome and advice,ive learned alot on this site in just a few days. Im trying to listen to my body and feel much more confident in battling this thing now i actually know what it is. I do get the odd teary day but manage to shake it off,its a big thing to get used to but ill get there. The tiredness is the killer for me,im an active person and i get so frustrated ,so ive been looking for ways to relax more rather than carrying on till i drop.I did chuckle at the thought of you and your brother running for the bus:) Your e right ,a good sense of humour often sees you thru the dark days.Take care. Kerry.x

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