confused ???

ailsarobby

Hi ... :? I'm new to this website and to RA so please forgive me if I ramble abit... ..My GP diagnosed RA 3 months ago after numerous blood test and months of seeing different doctors ..The 1st GP told me I was stressed and the 2nd told me I had tension...and so on and so on....I'd been working nights for the last few years looking after stroke,cancer patients ,vunerable adults ect...so I presumed the aches,pains,tiredness was part n parcel of my working conditions...Finally the last GP decided to do blood test and that...confirmation came back possitive RA factors plus the other test he did ..not sure what???..all seem to confirm that I could have RA..I have terrible pain day and night,from my neck shoulders wrist ,hands and fingers ,my left hand being the worse with obvious signs of bendind and swollen middle knuckles..My butt also hurts and I have pain down my thighs...The soles of my feet hurt and in the mornings I find it hard to walk because of pain in my calfs... The GP put me on diclofenac but they made me sick..I'm now on tramadol and co-cododamol..not doing much good just take the edge off the pain..I see the rheumatologist 7th sep..DO all these symtoms seem normal and what will happen when I see the specialist I,m so confused and scared what my future holds any advice will be really appreciated.

dreamdaisy

Hi ailsarobby, welcome to the worst club in the world - you sound like a fully paid-up member. I am so sorry. I don't have RA, mine's PA (psoriatic arthritis, like RA but with the added benefit of P) but basically the treatment is the same.

Start keeping a record of what hurts, when it hurts, possible triggers for the pain, tiredness levels, other symptoms that could be connected, whether your diet affects anything etc etc etc so that when you do get to see the rheumatologist he can gain a good picture of you and your symptoms. I suspect your first treatment will be methotrexate in tablet form: this is a drug that has side effects but not everyone gets them so don't scare yourself silly reading up on them. Meth doesn't work for everyone, and the docs will tell you that it will take 2-12 weeks to kick in. If you do a search here on methotrexate you will be inundated with references to it. Folic acid is often recommended to take too, to lessen any side effects.

If the pain control isn't sufficient then you need to go back to your docs and discuss further options, tho to be honest pain comes with the territory. I honestly can't remember my last pain-free day. Something is hurting all the time and the meds only take off the edge. You do get used to it.

Be prepared to be tired all the time. I am in the middle of a flare at the moment - at least I hope it's the middle, it started last Thursday and shows no sign of abating just yet! - so the tiredness is currently beyond reason. After 13 years of this (just 3 3/4 diagnosed) I know what to do. Basically I hibernate and I am now returning to my pit as my energy has gone. If I think of anything else I'll come back later. I wish you well - I'm sure more people will be along soon. Dreamdaisy

ailsarobby

thankyou dreamdaisy..luv ur user name...Im so glad I have found this site ...I did start a diary but find it so hard to write I get really bad pains up my arms...so Im thinking of doing a sticker calender eg;red stickers for bad pain ,orange foe bareable pain ,,so on n so on that way not much writing...this web site is very helpful tho I do find myself in tears most of the times when reading some of the stories...but so glad im not alone as I have no one really who understands apart from my lovely fella who is learning about the diaease along side me..x x x Ailsa.

dorcas

Hi Ailsa and welcome to the forum from me too.

It's understandable that at this stage you are worried about the future. It does take time to understand the condition and also to get the correct treatment that suits you, which might bring the RA under control and hopefully minimise the full blown symptoms you're feeling just now.

Like DD I have PA not RA but treatment follows broadly along the same lines. When you see the rheummy it is likely he will organise blood tests and xrays as these are basic tests that we all go through. He will do a full examination of all your joints, ask a million questions about your health history, onset of symptoms, type of pain/ swelling you have and where, whether you get tired at certain times of the day, whether you have stiffness in the morning and what meds you have already tried.

It would be a good idea to keep a diary between now and then...your OH could help with that if your hands are sore just now and writing difficult.
It is likely you will be prescribed anti inflammatories and with the right meds, treatment and support you might see a great improvement in your pain and inflammation.

Don't stare too far into the future just now as it is easy to feel panicky...and in any case it may be better than you think...just take it one step at a time.

so glad you've found us and I hope we'll see you posting around the forums.

best wishes,

Iris xx

catlady

Hi Ailsa, and welcome (???) to the forum from me too. How we all wish we WEREN'T here You can get lots of info on this site, also ARC (all arthritis forms) and NRAS (specific to RA). Everybody seems to refer to the diseases as arther, I like this Keep looking at the forums, there are loads of us here who can help with questions and even a joke sometimes. Keep you chin up. re writing, there are pens out there with fat rubbery grips near the nibs, they are easier to manage with RA. Glad you have your partner to support you, I would be sunk without my hubby to do things to help. see you on here soon x

ailsarobby

all ready feeling better today thanks to the replys and now not feeling so alone.....

carola

Hi Ailsa and welcome.
Glad you are feeling a bit chirper today.
My pains started in hands then things started swelling up like elbows, wrists, hands, knuckles, knees, balls of feet, toes, ankles etc.
Had to give up work in March this year and was diagnosed with RA. But, I kept questionning the docs as I didn't match all the symptoms. Was then diagnosed with SLE (a form of Lupus) and also PolyArthritis (which just means multiple swellings).
You will likely be given some meds to try like Methotrexate to try to stall the progress and they normally take a few months to kick in. I have also started some steriods which although I cannot keep on them forever they are certainly giving me a wee break from pain, pain and more pain for a wee while and then anti-inflams like diclofenac. I have other meds too.
Don't be afraid to ask lots of questions when at Rheumy and make friends with the Rheumy Nurse as they can be very helpful inbetween visits and grabbing extra appointments.
Fatigue is normally a big part of RA as well as some meds make you even more tired so listen to your body when you need to rest.
Keep us updated.
Carol and keep smiling

dreamdaisy

I'm back, briefly, to say that it is a steep learning curve for everyone involved with you in this. It is a difficult condition for those that don't have it to understand - it's bad enough for us that do. If your OH is supportive dictate your diary to him - he can type it up for you! One person mentioned that she kept a photographic diary of swelling too, as everything seemed to magically go down when she went to the rheumatologist. Right, I have to get ready for work then a crawl to the hospital is required for bloods. I'll pop back later to see how you're doing. DD

marion1952

Hi Ailsa

Welcome to the Forum, but sorry to hear of your diagnosis of RA. I have had RA now for two and a half years and my symptoms were pretty bad at first (like yours) but I DID improve considerably on the drug methotrexate, although it took about 6 weeks to kick in.

Those first months after diagnosis are difficult/scary and to be honest it took me the best part of 8 months to accept/adjust to it.

The other peeps have given you some good advice about keeping a diary of your symptoms. Also, take someone with you to your appointment if you can.

The Rheumatologist will also probably send you to see the Occupational Therapist, who will give you different kinds of splints to help the pain in your hands/wrists. You might also be referred to the physiotherapist for some advice about exercise to help with the stiffness, and possibly for hydrotherapy (which is wonderful!)

Please keep posting and let us know how you get on.. I hope the next few weeks pass quickly for you, as once you are 'in the system' and under the Rheumatology team you should start to feel better all round.

Marion x

tarasmygirl

Hi Ailsa

Like you I was diagnosed with RA about 2 months ago. Main pain at start was in soles of my feet, shoulders and hands.
Doctor started me on Diclofenic and referred me to Hospital - I seem to have been lucky as I got appointment in 3 weeks. Consultant examined joints, listened to me & took blood and xrays. had me back a week later to get results and started me on methotrexate. Went through a bad flare up and was given solpadol to take for pain as well as the other tablets already mentioned. I did start to feel better and when I saw him 2 weeks ago, I said pain was down from 8-9 to 1-2, he wasn't happy that hands were still so swollen, although glad that pain was under control, so gave me a steroid injection to help until the metho kicked in. It takes anything up to 3 months before you feel the benefits from it.
Now pain and stiffness are much improved and I have to go to the day ward in 2 weeks to see Occ Therapy etc.
Only problem now is a I am full of the cold and because I am on Metho , have to take antibiotics, so that's more tablets. Still GP said to take a couple of days of work and rest so I am following doctors orders

take care and welecome to the forums
Cath

dreamdaisy

Hi ailsa, I hope you are feeling a little brighter. DD

ironic

Hi Ailsa, Welcome to the forum. So sorry you have RA and I can well understand that you are worried.
You have been given a lot of good advice already. Just wanted to stress that keeping a record of you symptoms is really good. It helps the Rhummy so much when he is forming an opinion.
Good luck with the appointment. I know that when your are given the right medication you will feel so much better in yourself.
Please keep posting and asking questions.

Lv, IX

frogmorton

Hi Ailsa

Good to meet you and welcome from me.

This is a lovely forum a lot of us would be lost without it.

I hope you find us helpful and supportive while you get your meds sorted out.

By the way diclos and ibuprofen dont suit me either but ARCOXIA does as an anti-inflam.

Love

Toni xx