Its all new to me..i am confused.

Terry01

Im currently waiting to see my consultant, I have just been referred by my doc, as the blood test result showed a high rhumatoid count (his words).

I have read alot of posts on here and to be honest it breaks my heart to hear of all of that have suffered for YEARS..and I am only just about to begin my journey..makes me feel silly really to complain about the pains I have.

I really wanted to know your opinions on my problems, this way I can formulate what I want to ask and say to my consultant.

I Have had achey toes for a bout a year..I didnt even really think about going to the doctors about this, then about 3 months ago my fingers and wrist started to feel the same, painful finger joints and the feeling that my wrist was sprained. Then..I went to the doctors.

My feet..I should say left foot has got much worse, my ankle hurts very much and my toes on both my feet feel as bad as my fingers do.

I was wondering, is it normal for this problem to come on so fast?


It seems like some of you on here have had these same problems for years..and some of you have jobs and still battling with the pain.
At this moment in time, I feel that there is no way I could go to work. I mean some mornings I can hardly move..I walk up and down the stairs sideways to avoid putting all the pressure on my toes..I mean..I hobble...I actually hobble round the house. I can hardly hold a mug of tea without the feeling I might drop it. The only pain relief I take is Ibuprofen..which to be honest..isnt doing anything.

I dont even know what I have yet..and Im all concerned about possible injections into my joints..I hate needles..I dont respond well to those types of pains, and to top that off..I usually have a yearly bout with kidney stones which has put me in hospital a few times.

Its not looking too rosey.

Thank you for any advice you can give me.

Terry

woodbon

Hi Terry, Glad you've come along to this site as you will find lots of useful information and people who are in the same boat as you. I have OA, which is different, but lots of people on here have RA and I'm sure someone will be able to give you the facts you need. Also don't forget the Helpline, they are very good and can also send you leaflets that explain the condition you have.

It is very confusing, whatever the type of arthritis you have, because it is such a big subject and each person is different. Don't think that you will get to be as bad as the worst case you read about, as we are all different and its quite possible that you won't get any worse! Hope someone with more knowledge then I have comes along quickly - I'm sure they will.
Happy New Year, love Sue xxx

dreamdaisy

Hello Terry, it's nice to meet you but I am sorry you have had to find us. Arthritis is not that new to me now (fifteen years in, that makes me a mere novice compared to some on here) but it still floors me from time to time with what it can do, how it can do it and how it makes me feel. I think the first thing to say is that we are all different in how we are affected - yes, there are the umbrella titles of rheumatoid, psoriatic, osteo, palindromic etc etc etc but one person's rheumatoid will differ to another's and we all differ in how we develop the plans and strategies to help us manage life: one consistency however is that rest - and plenty of it - is vital for the latter.

It matters not whether it's one affected joint or ten, it's all an affront, an insult, a 'how bloody dare life do this to ME' kinda thing. The most important thing for you to focus on is that you are now being assessed and hopefully some measures can be put in place to help you - that usually means medication but don't be put off by that, the meds are meant to help slow the progress of the arthritis, control it to reduce pain etc, and for some they are enough of an answer for things to be improved. It may not mean injections into your joints (I think that's usually reserved for the cases of large sites of inflammation where fluid has to be drained and then a steroid is put in to relieve matters for a while) the more usual route is tablets first, e.g methotrexate and/or sulphasalazine and I suggest that you go and see your GP to discuss other forms of pain relief if the ibuprofen is not helping that much.

I know what you mean about the hobbling - the movements I am pleased to call 'walking' bear no relation to those my husband so neatly executes but hey, I can get from A to B and that is what counts. I use a stick in the house (sometimes crutches if both sides are playing up) and I find that helps matters a great deal. Like you my toes, ankles and knees are affected but I am now used to it and don't think that much about it (remember I'm fifteen years in, that's why). I am concerned that you might be throwing other joints out of true by not walking as easily as you have so please consider using a stick for support: it is very easy to cause oneself other joint problems because of joint problems, in trying to avoid pain in one area we cause pain in another. We stumble along a very tricky tightrope from time to time.

Come and talk to us because we do know what it is like, we can empathise and sympathise because we are are all in very similar boats. You will develop your coping strategies and coping mechanisms (mine is based on bloody-mindedness and sheer obstinacy) and we will do what we can to answer any questions. It may be useful to give the Helpline a ring - there are some very good people on the end of the phone, I can assure you of that. Take care and keep in touch. DD

lindalegs

Hi Terry,

First of all Hello and welcome from me.

'Yes' it can come on that quick and sometimes quicker with a major flare. Mine came on the same day as my 2nd son was born and over a three week period my joints closed down and I could do nothing for myself. But, I was taken into hospital and mobilised again.

Try not to be scared about the 'journey' as your arthritis might not be aggressive and could just be a problem now and again. You will be seeing your consultant and medication will be discussed so that will give you a better understanding of what is out there to help you.

Be reassured that your life won't end it'll, possibly, be different to the way you planned it and you will learn to manage your illness. Take each day as it comes (cliché alert!!!) and find out what you're dealing with.

We are all here to help you and if times do get a little tough then we'll hold your hand and get you through.

Luv,

valval

welcome i know it not easy and when not on medication it is the pits but when they find a medication that helps you it will be so much better i remember the exhaustion and pain feeling as if some one had turned the gravity up and life was so bad you worry about the future and what you will be like but remember if meds are started quickly the dammage is slowed and lots of people go into remision so try not to worry (i know easyer said than done ) keep a pain diary( when where how and how long stiffness lasts in a morning) you can take with you and list if any one else in family has arthiritis good luck we are here if needed val

Terry01

Thank you for your replies.

I am optimistic, and I know that there is a chance that the condition that im in at the moment could improve with the right care and treatments.

As far as working goes, I have a really sweet I.T. contract that will be coming up soon, Its good pay, much better than the benefits I get when Im not working, Im worried that if I wont be able to be at my best..and to be honest the job involves lots of walking, lots of stairs and fiddling with intricate peices of computers and the like. I was doing this only 3 months ago, now..there is no way I could face that, just the amount of walking would cripple me. 3 months ago I could happily get up early rush for the bus and get to work with 5 mins to spare!

I feel horrible, Im not a scrounger..in fact i would rather be at work getting wages..its much simpler than applying for benefits and getting payed on time and dealing with DWP Interviews that feel like you are being judged by someone who already has a job. And I now worry that The DWP rubbish is about to increase 10 fold when I have to come off JSA and say..actually, I cannot work at the moment and I havent actually got a diagnosis or any paperwork that states that I have a medical condition that would make it very difficult to work.

I now feel my "Journey" will be twofold..One, dealing with my health and going to appointments and keeping track of meds, dealing with GPs, tests, hospitals..etc
And Two,
Having to..its funny but..Convince the DWP that I cannot cope with work at the moment and having to deal with their..Im sorry to say "Bulls*t" and all the forms and judging that goes with them.

To be honest..Its the DWP that I fear more at this moment in time, the stress of thinking about it makes it harder to deal with, I feel like im about to be launched into a catch 22 situation.


Im so sorry to vent, I needed to say what was in my head right now.

So..Im basing my optimism on the possibility that my condition is..treatable and I WILL be able to get back to work without all of the discomfort I have now.


This site is going to be an incredible resource for me, Thank you all so much.

Terry

dreamdaisy

Maybe it's best to wait and see what the state of play with your health is when that new contract comes up - things could be better than they are now, you might be in a better place mentally to cope with any obstacles, the DWP are not going to be that empathetic (they're not with anyone) so it's probably best to avoid tangling with them for as long as you can! You are in the very early days of this, full-time working is not out of the frame, not by a long chalk but it is very hard to accept and adapt to the changes that this disease forces upon us. Keep talking to us, it helps clarify thoughts and stops them whirling around. DD

stickywicket

Hello and welcome from me, too, Terry01. I'm a long way down the road from diagnosis but, believe me, there is good stuff after it, though it may not be the stuff you had planned.

Right now you are caught up in a nightmare of physical, practical and emotional chaos. Linda's advice of the old cliche 'one day at a time' is worth adopting. Sometimes there's a good reason for cliches being cliches ie they're right. Just try to prioritise what must be done now and what can wait. It is so hard not to worry when all the future seems uncertain but (as I keep telling Mr SW) worry solves nothing; it only grinds you down so that, when there is something practical that can be done, we end up too emotionally ground down to do it.

As you will have seen, we all try to help out on here and, because we've all been there - and, indeed, still go there at regular intervals - we understand the need to just get things down and out of our heads, and share them with others who understand. It does help.

valval

was reading something the other day and it said break down what you need to do into manageable bits rest and exercises are important listen to your body it will tell you what it needs good luck val

tillytop

Hello Terry - and welcome from me too.

I am so glad you have found us (although sorry you have had to).

Between us we have all sorts of arthritis-es (if that's a word) and hope that you will find us a good source of information, support and practical advice. Please don't ever feel you can't post - my experience is that the medical docs are fine at dealling with the physical side of things but that often practical and emotional support are sadly lacking - which is where I feel the forum can be of most help.

I too can understand completely where you are coming from and your desperation about your current situation. I have had RA for 16 years and, in the early days, all I wanted was someone to tell me "this is what you have, take a pill and it will all go away" and I found the "not knowing" what was going to happen the most difficult thing of all.

Although I am a long way down the line, compared to you, I have had some other long term health issues to deal with over the past few years and I have been struggling with the same feelings and worries all over again. And the only way I have found to cope is to try (not always successfully) to adopt the approach mentioned by the others - one day, one problem at a time. I have also found that writing things down really helps me to feel more in control. So for example, in your case, the rheumatology appt is the first step and I would be trying really hard to concentrate on that and that alone and to refuse to let myself think about "what next" until I have some more information. I would do exactly as you are doing and work out what you want to ask when you see the consultant and I would also keep a very clear record day by day of how things are which will help the consultant when you see him.

I know this probably sounds trite and/or impossible - and it's true that you do have to work at it because it is so easy to become bogged down but I have found that when I do manage just to focus on one thing at at time, I do cope better.

Anyway, think I am probably rambling but I hope that maybe some of this will be of help to you. And please do keep posting and asking questions because chances are whatever you ask, someone will know, or will have similar experience to share with you.

Thinking of you.

Tillyxxx

magenta

Hi Terry,

I just wanted to say hello and glad (but sorry!) you've found this site. It's been a godsend for me. I have found out so much about my problems-fibro, OA and sero-neg arthritis. People on here are very supportive and if ever you have a question, there's always someone that can help-we're all in this together.

Take care and hope to see you posting again soon,

Magenta x

bubbles

Welcome to the forum Terry, you are certainly in the right place for support, help, a listening ear, a place to rant and grumble. I can offer little else, only to support what the other lovely people have talked about. Arthur takes so many forms, causes different reactions, pain etc, in every person, hence the visit to the rheumatologist is a big step forward. They can do more in depth blood tests, arrange for x-rays to be done while you are there and discuss treatment plans with you.
Sometimes one treatment is less effective than another and it can be a bit of a journey at times.
One step at a time, see what they say at the hospital and take it from there. I know I am the worlds worst, but, it is important to listen to what your body is telling you, so rest when you need to. I am sure your GP can offer a more effective pain relief package for you in the meantime.
Do keep us posted, pop into the cafe for a natter, look forward to your future posts. Take lots of care, XX Bubbles

Terry01

Thank you all,

I feel that I am definatly in the right place.

Terry