New Here: Good morning all. This is my first visit... - NRAS

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MrsBobbins profile image
20 Replies

Good morning all.

This is my first visit to this site, I found you by chance whilst googling the side effects of Methotrexate. I'm 35 and have had trouble with pain in my hands and feet for a couple of years now. I was a bit slow in seeking help though, 3 children, a hubby in the forces and my own business give me lots of other things to think about, so I was only diagnosed with RA at the end of last year. I was quite surprised to say the least and still not convinced that the docs are right, not that I can disprove them but because I don't want them to be right. I have yet to tell anyone outside my immediate family my diagnosis.

I suppose I'm looking for validation here, are my symptoms like other RA sufferers? Will I always feel like this? Will the meds eventually work? Or are my hopes that it's not RA reasonable?

I was started on Sulfasalazine before my RA diagnosis was confirmed, at first I was just told it was poly arthritis (I could have told them that, pain in a number of joints) but after seeing a Cypriot Rheumatologist (as I live in British Forces Cyprus currently) as I was told definitely RA. After a couple of appointments with my Rheumy 6 weeks ago he suggested I start Methotrexate in addition to the Sulfasalazine and I've got to admit I'm struggling. An almost constant nausea and a very upset stomach, and as yet no relief in the joint pain.

Since moving to Cyprus I have to admit that the warmer climate has helped a little, especially in my feet, the morning stiffness has almost gone and the only pain is usually during medical exams when the docs decide to squeeze me feet (thanks!) However my hands are a different story, the middle knuckle on one of my little fingers is extremely, and constantly painful, and is permanently swollen and the large knuckle of my left thumb is following the same way. I like to think I'm a tough cookie, I have three children after all, but sometimes it gets a bit much.

If I do definitely have RA then that will explain the tiredness I have experienced for the last couple of years, my inability to stay awake after 7.30pm is a running joke in our family, but to be honest it's not always that funny, yawning my way through rare evenings out and craving my comfy bed instead of enjoying the company of others is not always amusing :(

Anyway, that's it, my introduction, I hope it wasn't too long winded, although my aching fingers are telling me I have gone on long enough. Hello everyone.

Lucy

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MrsBobbins profile image
MrsBobbins
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20 Replies
nellysgran profile image
nellysgran

Hi Lucy welcome to this wonderful site where everyone is so helpful and full of advice. Sorry you have to come here because of RA but it does sound like the probs that many of us here have, I am also on Sulfa and I had trouble with my tummy with MTX tablets so now I inject MTX which I find much better. I still have trouble coming to terms with this awful disease and I have been diagnosed now for a year but I am sure I had it before my diagnosis. Lucky you living in the warm sun i'm sure it must help but be careful with MTX and the sun make sure you put on plenty of sunscreen. You need to tell your family so they will understand what is going on especially the fatigue.

Once again welcome and I hope you get your meds sorted, look forward to hearing more from you in the future .I'm sure you will hear more advice from the other lovely people on this site.

Gentle hugs Wendy xx

allanah profile image
allanah

Hello Lucy! Glad you found us and I am wishing I was in the heat with you as it really helps my joints!

Validation? Well with RA the first symptoms are pain, swelling and stiffness, tick. Positive squeeze test, tick. Exhaustion and fatigue tick. Doctor diagnosis ....tick, so it sounds like you tick all the boxes!

But that is so hard for most of us to get used to. I was a full time busy mum of three and a nurse manager and found that I literally couldn't move or get out of bed and certainly couldn't stay up late or even think of going out at one stage.

I am glad the Rheumy has taken you seriously though and started the best treatment for you. You don't mention if you take folic acid with your methotrexate as it tends to help lower the sickness level. But they generally ask you to try the medication for at least three months and then if it doesn't suit you, you should tell them, there's lots of treatments they can offer you, including injectable methotrexate which bypasses the sick stomach set up!

The official NRAS site nras.org is brilliant and has a whole load of information on just being diagnosed and what to expect.

Glad you here and hope you can either just moan on, laugh or ask questions here, I have found it really helpful and made lovely friends. Good luck and sending pain free hugs xxAxx

sammiebabe70 profile image
sammiebabe70

Hi Lucy, Welcome to the site x

Fidget02 profile image
Fidget02

Welcome Lucy to the group.

I am relatively new to the site, only been diagnosed this year but suffered since mid last year.

Everyone is so very helpful on here, any questions just ask... There is always at least one person who will know the answer

Take care

xx

lbtabby profile image
lbtabby

Hi Lucy, I was welcomed to this wonderful site a couple of weeks ago, you couldn't have come to a finer place, so a warm welcome to you from me x

ellybw profile image
ellybw

Hi Lucy, welcome to the site.

I know exactly how you are feeling. I too am 35 with 3 kids and a hubby who is rarely around due to shift work. I am not yet officially diagnosed but on enough meds already just to get me through each and every day. The fatigue is a bit of a killer, I often find myself nodding off whilst I am 'looking after the boys'!!

Woke up once to find the 2 year old heading out the front door!! Its always locked now!!

Everyone on here seems very helpful and pleasant and reply pretty quickly!

Look forward to speaking again soon

Elly.

helixhelix profile image
helixhelix

Welcome Lucy...tho' sorry you've had to find us. Like Allanah, I think your docs may well be right, and if not RA then one of the other similar inflammatory arthritis's. But hang on in there, it will get better! I had a horrible 9 weeks when I first started MTX, but the side effects slowly wore off and it slowly started working and I got my life back and managed to function more than a few hours a day. One of the many difficult things about this disease is that everything takes soooo loooong, so prepare yourself for a bit of a wait to see big improvements. I still need to make sure I get 8 to 10 hours sleep a day (I used to be happy with about 6), and do have waves of tiredness at times if I overdo things but generally it's fine. But of course, if the side effects are unbearable, then start asking to try other drugs as there are others and it can take time to find the right mix for you. Good luck, Polly

MrsBobbins profile image
MrsBobbins

Thank you everyone for your lovely welcoming comments.

mattcass profile image
mattcass

Hi Lucy, If you need some to come to you and explain what you need to know me and Fran can be on the first plane out when you send the boarding passes it would not be a problem at all in fact it should not take more than a month,Mattcass

DWhite profile image
DWhite

HI Lucy,

Welcome , I'm a newbie too here and although I was diagnosed with RA 4 years ago 2 years later they said I did not have it and now I'm back again doing tests as they think that I do have one of the Immune system illnesses but they do not yet know which one. You are lucky to live in Cyprus as the sun will help you. The weather in the UK this year has been awful and we all have suffered much more pain. Best of luck with your medications , you are one step ahead of me!

Caza profile image
Caza

Hi Lucy, I was diagnosed last year but like you I still wonder if they've got it wrong, even though all the symptoms are there & like allanah says I tick all the boxes to. I find it interesting that you haven't told many people, I've only told my husband & two friends, one of which said oh yes I have trouble with my knee, you just need to exercise more!! But I wonder if we haven't told anyone ( my children are now adults ) because we can't except it ourselves. I'm going away this week with my son daughter-in-law & granddaughter & in some ways I'm dreading it, because I know I'll never keep up. I've gone from needing 5-6 hrs sleep to 12 & still I'm tired so I think I'm going to have to tell them. Anyway welcome to this site the guys on here are brilliant & I've learnt so much from them, sorry that you've had to join us. Take care x

trace65 profile image
trace65

Hi Lucy,welcome to this site,I was diagnosed in March and this site has been fantastic both for info and also for having people who understand. XX

MrsBobbins profile image
MrsBobbins

Thanks everyone............and Mattcass such a lovely offer, I'll be sure to let you know if I need you, but I wouldn't want to put you to any trouble :)

miss profile image
miss

Hi welcome to this lovely site. Sorry i have come to you so late been at work!!! Think you have had very good advise so wont add any moor. Look forward to more of your blogs xx

Neverwell profile image
Neverwell

Hi Lucy and welcome x

beth48 profile image
beth48

Hello Lucy and welcome :) x

shirlthegirl profile image
shirlthegirl

Hi Lucy, I'm Shirley, Welcome to this great site, Since i found this site last September i have received great advice from everyone and have made some great friends ,they are always there for me, Take Care Xx

Welcome to you, im pleased that the military medics? are on the case, you also seem to back the evidence that heat and sunny climes helps., are you at I CANT SPELL "ALKATARIA? my cousin was station other there at one point.. she is a female warrant officer, and her husband to be is one to.,, last year she came back safe from afgahnistan

jeanabelle profile image
jeanabelle

Hello Lucy, well by now you can see just how welcoming everyone on this site is. You are in very good company. It is unfortunate that you have to look for this site too of course but we will all help, advise, comfort and sympathise with you everything e you need it. So welcome aboard and keep in touch, we're all here to help one another to get through our days while battling this disease. All the best and as they say on here " soft hugs ". XXXX

selina profile image
selina

Hello. Hope you're feeling better. It can be hard to cope with the disease & the diagnosis at the same time! Give yourself time to accept & adjust to the diagnosis. When they have found the meds that suit you it will become easier.

I'm on sulfasalazine & MTX & have taken folic acid from the beginning. I'm one of the lucky ones - few side effects. So much harder with a career & young family. Easier for me in retirement.

I think it would help you if you could make those around you aware of the symptoms and severity of RA (when you are up to it). There will be times when you will need & deserve their understanding & support. You can't do this alone.

Good luck x

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