My life is changing :(

tillytot41

Hello there,i am new to this site.I am 41 and live in wiltshire with my 2 children and 3 dogs.Im feeling pretty tearful this morning,ive been very unwell since febuary and been steadily getting worse.Started off with severe pain in both my feet.Saw a rheumatologist and had some mri scans done which showed slight tendontius and swelling round ankle joint which didnt make sense for the amount of pain ive been in.
Ive also had painful hands for many years but as i had my own florist shop i put it down to that.Then my back started getting very painful so had another mri scan which showed dengenrative disc disease and a faulty facet joint which i had a cortisone shot in.The shot made me feel very ill straight away and i spent 2 weeks in bed in severe pain,turns out the injection should have been done under xray and wasnt.
Since then i have been getting worse and worse,i am in terrible pain in nearly every joint exhaustion like you wouldnt believe,front teeth have gone wobbly,i just feel so terribly ill.
Had blood tests last week and they came back showing very high inflammation levels,ive also lost nearly two stone in weight due to loss of appetite.Doc said straight away she thinks it highly likely i have rheumatiod arthritus and its been arranged for me to see a specialist rheumatologist.Im just hoping its not going to be too long because i am really struggling,ive been put on steroids and they have taken the edge off it,last week i didnt know what to do with myself.
Im just struggling with keeping positive,my hands are extremely painful as well as the rest of me and night time in bed is awful the pain gets really bad.I had to close my shop in May and probably as so many of you ive had a real life change,going from incredibly active to not being able to do much although i still walk my dogs albeit very slowly.
Its just so hard waiting to see the consultant and getting on proper medication and what my future will hold.Have been reading a book on coping with chronic pain which has helped a bit but i dont know anyone my age with this problem and im feeling very alone.Sorry the post has been so long but just needed to get this off my chest.
Ali xxxxx

mellman01

Hi tillytot41

I don’t have RA but OA but I can sympathise with how your feeling, chronic unremitting pain drags you down, have you told your GP how it’s effecting you I was in the same boat and I had to do something about it as it was getting me really really down, one thing to remember is everything will take time to get sorted pain meds treatment etc, but try and hang in there if your like me I wanted answers fast as I did not know or understand why I was having such a bad time of it, the answers will come you just have to take it one day at time.

Regards

Mellman

chinablue

Hi Ali i have RA and have i like you was diagnosed when i was 40 and could not understand where all the pain was comming from i had worked very hard and had just been appointed as a manager after lots and lots of work and 14 hour days with lots of homework too and it seemed everything i had worked for was slipping away i had to step down from management. and gradully came down in working and then in the end could not manage it at all. There were all sorts of changes in my personal life too. But once you acept it you will find it easier and you start to consontrate on the things you can do and not the things you can't. its great you are being seen soon a bit of advice on that if you dont get on with them or dont like the way they treat you then ask to see someone else dont just put up with it as i did for a long time. another thing you can do is to make sure you take painkillers every 4 hours and not just when your in pain. Ask your gp for stronger pain killers. Once you have the pain under some sort of control which just might be tolerble. Try and find a hobby that can take your mind off of things something you have to consontrate on but only do it in short burst so you dont over do it . i hope some of this is useful to you but you have to find what works for you as we are all different take care and i am so sorry that your in so much pain and i do know what it is like sending you gentle hugs CB

wibberley

Hi Ali and welcome to the forum. Sounds like you've had a really bad time with the pain. Not helped by some bad needlework!

I'm also new here and have found loads of support already. I'm 43, have 3 kids, a retired guide dog and board guide dog puppies. I also trained them but had to give up in June as I was finding it hard to give them the exercise I needed.

I'm not completely new to RA but it had been in remission for almost 20 years and treatment has come on so much since then, that it is very new, and very confusing with all the choices we now have to make!

I'm on celebrex anti-inflams which keep the inflammation down (mostly) but doesn't do anything for the 24-hr aching. Am seeing my rheummy again, and I just know he's going to suggest mtx which really scares me but am feeling more positive about it now as there are some members here who have really benefited from it.

I'm so sorry that your business has suffered as a result of this RA. Sounds like you need to get on the right meds asap. Don't let anyone mess you around, you've been suffering since Feb which is long enough!

Fingers crossed you're specialist will be sympathetic - please keep us informed. A problem shared is a problem halved (I think I got that right?!).

Lois

woodbon

Hi, I'm so sorry that you are suffering so much. I don't have RA, I have oa so its different but still painful. I hope that you've told your GP just how desperate you feel, so that he can hurry the appointment up. I think it may be a good idea to go and see him again and tell him just how ill you feel and keep on reminding him until you get an appointment. Patients who make a fuss often do get seen quicker, I know its not fair, but it seems to be the way things work these days!

Good luck, love Sue

lindalegs

Hi Ali,

Welcome to the Forum.

I'm so sorry you feel poorly at the moment, it's so grim when you feel as you do. It's such a shock also and takes a lot of coping with especially when you have a family and animals who rely on you - the trouble is it's you who needs looking after until this flare subsides.

I agree with Sue and you need to get onto your GP and even make a nuisance of yourself, if necessary, while ever you're quiet your GP thinks you're fine he/she doesn't realise how much you're suffering.

It will settle down with the correct meds and the nature of the disease itself. I've had it for 23 years since the age of 27 and brought up two boys so I know that life will be good again for you, I promise, even though it may not seem that way right now.

Talk care and ring your GP.

Luv Legs

frogmorton

Hi Ali
So sorry to hear how badly you are suffering
Yes you are so right so many of us have severe pain and our lives are not the same as they were.
Lots of us are as young as you too and some even younger
What I will say is if we can help you get through till yoiu get your proper pain releif and meds to stop the joint damage (DMARDS), I promise you will get a lot of your life back.
You will feel better and life may be a little different, buit it IS ok I promise
It is so hard adjusting to such a huge issue as possible RA, but over time and with lots of redaing and talking and help form the medical profession you will get there.
You take care
Toni x

tillytot41

Thankyou so much for your replies its been such a comfort it really has! So it looks like RA or whatever it is they find i have isnt the end of the world and i can keep some of my life?Ok i understand i prob wont be able to go back to working 6 days a week as i did but a life without pain would be great!I also find the exhaustion really hard as i keep trying to tell myself to buck up and get moving but my body isnt doing as its told!!
I suppose at the moment i dont really know whats going on,ive also got an overactive thyroid due to the doctor increasing my thyroxine dose too high so ive got all that going on as well.
Doc also keeps going on about depression but of course im fed up,ive been struggling quite a while now.Feel like ive got all this things and pills being thrown at me and feel like a walking chemist at the mo.
I have been nagging the doctors,have seen them quite a bit and am back again next tuesday.Hope you guys dont mind me keep coming in here and posting cos at the mo i feel like im lost in lala land.
Ali xxxxx

wibberley

Ali,

Good luck with your next appt and don't feel bad about posting. This is what the forum is for - a virtual shoulder to cry on!

Lois x

lindalegs

tillytot41 wrote:

Thankyou so much for your replies its been such a comfort it really has! So it looks like RA or whatever it is they find i have isnt the end of the world and i can keep some of my life?Ok i understand i prob wont be able to go back to working 6 days a week as i did but a life without pain would be great!I also find the exhaustion really hard as i keep trying to tell myself to buck up and get moving but my body isnt doing as its told!!
I suppose at the moment i dont really know whats going on,ive also got an overactive thyroid due to the doctor increasing my thyroxine dose too high so ive got all that going on as well.
Doc also keeps going on about depression but of course im fed up,ive been struggling quite a while now.Feel like ive got all this things and pills being thrown at me and feel like a walking chemist at the mo.
I have been nagging the doctors,have seen them quite a bit and am back again next tuesday.Hope you guys dont mind me keep coming in here and posting cos at the mo i feel like im lost in lala land.
Ali xxxxx

Ali,

There's nothing to say you won't be able to work 6 days a week - it's early days for you yet. Take one day at a time, each one's different and try not to worry about work. Once the arthritis is under control then review the work situation again.

...and feel free to tell us how you are - we've all been there and understand.

Luv Legs

woodbon

Hi, Don't give up on things too quickly! It sounds like you have a few health problems to get sorted before you know how you feel. It may take a while, but things do take time to settle down and the right medication sorted out for you.

Once all this is done, and you feel a lot better, then you can decide what you want to do. At the moment, I'm not surprised that you feel depressed, part of that will be due to the medication problems and part due to the effect of knowing you have another illness to cope with. It could be that you don't want to work so much, not because you'r ill but as a life style choice, or you might be feeling fitter than before, as the meds will be helping,who can tell? You may have to be patient as it can take a while, but hold on, and you'll come out the other side. Wait and see!
Take care, love Sue