Hello everybody,

I was diagnosed with RA in November. I've been miserable, irritated, body aching 24/7, depressed and angry. The medications seems to take a long time to kick in. The weather is not helping at all. I've been off work for 2 weeks, doctor orders.

I've been feeling really low and very very exhausted with pain. Sleeping is a bit hard at the moment because my ankle and wrists ache so much. I wore gloves to sleep. Since last week my ankles have swollen and it's really annoying.

Most of time I sleep.I have no taste of food since the last 3 weeks. I'm feeling sick all the time... Feeling thirsty every minute...

Fortunately my fiance and his family try to understand me and they are very supportive. I live with my in laws and his sister and her boyfriend. I am very grateful that I have them because they do look after but most of the time I keep apologizing when I ask them something or when I can't do anything they do it for me. I keep saying that I am not lazy my body hurts so much but they understand me.

I have headache everyday from 3pm till I go to bed.

I'm still trying to understand myself and RA. i have been reading a lot.

I even change my diet so that I don't gain weight because I used to be active before. My favourite thing is every saturday I used to clean up the house (3 bedroooms, kitchen, living room, conservatory, dining room, bathroom). This was my thing and most of the time everybody will be out or to work. But now I still haven't accept it I can only clean my room and kitchen after that I feel very tired. To be honest I am not a freak in cleaning but I like a clean house so does everybody who live with me. And my family thinks I am freak in cleaning.

Sometimes I get very upset and cry because I keep thinking I am still young too young to have RA. I am 25 yrs old. And I am planning my wedding for next summer and there's so much do even if it's going to be a small wedding. I keep praying to have the strength everyday.

I am on tramadol, methotrexate and steroids, folic acids and omeprazole.

I keep reading the forum a lots and it's been really helpful. I wanted to thank everybody who took their time to help us specially those who are newly diagnosed like me.

I have a couple of questions and everyone is welcome to answer and it will be very helpful.

Do anyone have lost taste of food?


My feet are always cold even if I wear socks, slippers specially at night, I even have a hot water bottle every night is there a solution for this or I need special sock, any information about this will be helpful, because the pain in my ankle is horrible.

Does any of you take supplement vitamins or cold liver oil?

Any of you have practice any exercise over the years that have help you with RA and being active?

Is it normal that I feel my mouth very dry all the time and feeling very thirsty?


Any information will be very helpful.

I thank you all for taking your time to read and answer my questions. All of this is new to be.

Thanks a lot.

Sharon

right meds take a while don,t get inpatatent if they are going to work they will .
12 weeks or more you will find .I took 9 months before i could walk without hubby carting behind with a wheel chair

now i am back to normel apart from working as i have slowed down a lot .
see an O.T TO SHOW YOU HOW TO REST and play

memory foam matterss i like for the joints but they no long hurt .
get your coldness checked out .
Cold feet can be over breathing hyperveteating too much carborm
under ative thyiord
Raynaunds or auto iummume overlap ?
Ask for Amitripline for sleeping

once moblie then swim or somwthing as its helped me a lot .

you will get there in the end
Love Christine

Hi Sharon,

I was diagnosed in November as well so I'm probably on the same path as you at the minute. I've done 6 weeks of Methotrexate and am taking diclofenac and paracetamol as well. I stopped taking the diclofenac yesterday because I was taking it to get me through until my Xmas rush was all but over and I'm now there and thankfully got a bit of breathing space to try to sort out the rest of my life. I only started getting the headaches when I started taking the diclofenac so that's why I've stopped to see if its that drug which is giving me this side effect, its a devil of a job trying to work out what's going on with your body and which drug is doing what. The omeprazol has really helped me with the nausea. When I first started on the MTX all my food felt like it was a hitting my stomach like a stone and I've been really thirsty as well.

I've always felt the cold but have found like you that my hands and feet are much more cold nowadays, the hot water bottle is a constant companion! Emotionally I've been through the ringer as well, sounds pretty similar to you. But I've managed to carry on my weekly dance classes, even though I'm really bad at it, but I couldn't let the girls down with our tap dancing elf routine in the local panto could I?! Last Saturday I had to get up at 5.00 a.m. drive for an hour, sit in the cold for a few hours and then drive back because of my job. So to do this I had a relatively easy day on Friday, couple of glasses of wine to get me to sleep early (I've been waking up at 5 with the pain anyway) but still suffered on Sunday. I slept for 12 hours and then it took a hot bath and a slow early afternoon before getting going about 1.30! This is not normal!!! I feel so useless, not contributing what I used to be able to do and putting additional pressure on my poor husband. But it seems to be how things might be.

One thing I'm really struggling with is being told by the OT that long term I can't do my job any more, it's too intensive for my joints. So I've been very upset about it all. After a long chat with my husband yesterday I've started taking control again today to organise the rest of my life. I've found an Expert Patient Programme nearby which I'm going to do in the New Year to try to get a handle on 'coping' with RA, I've been in touch with Access to Work to try to get an assessment to see if there's any way at all that I can carry on with my work even in a reduced way, I got in touch with the Council to see if there was any help they could offer, I've spoken to a Career's Advisor about possible alternative careers and even made a start on doing my accounts! This is my way of trying to cope. It's probably different for you but I always feel better if I'm trying to do something to change things rather than having things happen to me which are out of my control and boy is RA something that you cannot control!

I'm hanging on to the idea that there is a combination of drugs that will help me get 'back to normal'. I've started taking flaxseed oil every day to up my Omega 3s (I'm vegetarian so wanted a veggie option to the fish oil supplements) Also started eating a few more apricots, almonds and brazils to up my iron and calcium intake but I think a good varied healthy diet with lots of fresh fruit and veg is the best for almost any condition! I make soap for a living and when people talk to me about their terrible skin conditions sometimes all I want to say to them is 'it might help if you ate 5 portions of fruit and veg a day' of course I don't but sometimes quip, its a bar of soap not a miracle! Needless to say I don't make a sale!

I'm trying my hardest to carry on doing the things which I enjoy most and take the consequences accordingly! It almost seems like you have to learn to live your life all over again and at your age you've only just started learning that anyway so it must be especially hard. I haven't been able to offer much advice, take that from others with more experience of this disease than me. But it helps me knowing that other people are going through the same thing and I'm not going round the twist because I'm reacting the way I am, so I hope my little tale has helped you too. Roll on 2011, I've had enough of this year!

Take care
Sara
x

Hi Sharon,

Sorry to hear you you are feeling low just now, It comes with RA I'm afraid. We have all been there and at 25 you have more reason than most to feel the way you do. I'm sending you a big hug and reassurance things will get a bit better when the drugs kick in.

You asked about taste, I don't know if its the weather or not but I am exactly the same at the moment. I enjoy food but not just now, I cook things then can't eat it. My family eat it between them and I have soup or something.

You also asked about being cold, I think that must come from our lowered immune system as I am always cold, hands and feet are always freezing. I feel at times I am never very warm. My husband complains about our bed being too warm, as he feels the heat and I am so cold. Its then I put my feet on him and he jumps as I am so cold.

I take a multi vitamin and iron, I find this a help as it keeps me feeling healthy. I had my bloods done last week and my levels are all pretty even and my PV level ( the inflammation one ) was down this week.

Your thirst could be a sign of diabetes, you should see your GP. Don't worry until you get checked at the doctor. There could be lots of explanations Why, so don't worry until there is a reason too.

Try to set yourself little goals, and keep a diary so you can see yourself improving, I did and it made such a difference. When I was diagnosed 3 years ago I was hit very very hard and I was virtually an invalid. But with the help of the triple therapy and a POSITIVE mind I have overcome much of this. You can too if you try not to let it get on top of you. As I was told 3 years ago this is the best time to get RA as they are so advanced in the drug therapies.

Thinking about you,
Take care

Lorna x

hi Sharon,

you are so newly diagnosed you are bound to be feeling so down, and yes angry and at 25 who can blame you.

i am 6 months diagnosed and still haven't come to terms with it really ... i prefer to take it day by day rather than worry about what's ahead as we are all so different.

it's good you have such a supportive family they are worth their weight in gold ... my Hubby is my rock and soulmate and he goes with the flow with how i am.

i had a depo injection a fortnight ago and it has helped such a lot, i would ask about this by ringing your Rheumy Nurse to get you through these early stages.

i take a Multi Vitamin daily and a Vitamin C tablet.

i haven't suffered with no taste or thirst, but i do definately feel the cold more and wear thermal bed socks around the house which are very fetching !!

i would ask your Nurse about the thirst at your next bloods just to have it checked out to be sure there is nothing else.

you will be feeling tired and fatigued ... but try and think positive, as my GP always says to me this is a controllable condition it just takes time to get the right meds sorted.

i was given an anti-depressant by my GP to help at night and 2 months on i would say it has helped, something i didn't want to take but was re-assured it's non addictive and i know by reading this Forum lots of us take it.

it's a lot to take in but you will get there when you are feeling brighter once the pain is under control,

this Forum is a great help as well,

take care and keep posting,

Suzanne x

Hi Everyone

I've been diagnosed for nearly 4 years now and have improved greatly over this time. I can remember waking up in the night and thinking that if this was how I was going to feel for the rest of my life I didn't think I'd bother. Once the meds were sorted out I felt so much better but this does take time. I couldn't take tramadol because it made me very tired and sicky!

Regarding your ankles, someone on this website once mentioned Pernaton Gel which I have found amazing. Occasionally now (when I've overdone things) once I get into bed everything aches. I then slap Pernaton on everything that hurts and this helps.

Good luck to you all - Brenda