New to this and a little scared....

dippydoodah

Hi, Im 32 and have just had my first Rheumatologist appt on 11th February at the hospital. Im still waiting for the results of my bloods and xrays to be sent back to my GP and Im very confused by it all.

I started with pains in both feets last year, its progressively spread to both ankles, both knees, shoulders and both hands. My GP thought it may be RA but the Rheummy said he thought it was OA - although Im sorry to be cruel but he was an absolute idiot who didn't listen to me, didn't ask many questions and was more interested in chatting with all the nurses in the room than dealing with me. I left the hospital feeling very upset and had so many unanswered questions. He didn't even explain OA, I was just handed a leaflet and told to come back in 6 mnths.

Im waiting for him to send the results to my GP so I can get some answers but in the meantime, Im left confused and a bit scared by it all. I used to be very active, now some days Im finding it hard to even get out of a chair. Im on anti-depressants and Naproxen for my pains and thankfully have an extremely supportive husband who helps look after me and our boys when Im having a bad day.

I just wanted to introduce myself and say how good it was to have found this site, knowing I can talk to people in the same situation
Caroline x

valval

hugs for you i think it the worse thing the not knowing. if the pain really bad go back to gp the naproxin not a strong pain med you can take paracetomol with it check at your docs. i take co-codamol with it and another anti inflam as doc said it was oa and rhummy thinks inflimation arthritis as well . good luck you can always talk to your gp and ask for second opinion if you do not get on with first rhummy good luck things will get better when you get right meds

wibberley

Hi Caroline and welcome!

So sorry to hear you were not treated well by your rheumy - he should have given you his undivided attention and was very insensitive in his behaviour. Perhaps your GP could refer you to someone different?

Do tell your GP if the pain is still intolerable, it sometimes takes a bit of stomping to get them to listen to us!

Perhaps the helpline team could help with some of your concerns while you wait for a proper diagnosis and, of course, we are here too! Feel free to offload.....we all need to now and then!

Lois x

dippydoodah

Thanks. I have to say my GP is absolutely wonderful. Such a kind man who actually stops what he's doing to listen to me. Im very lucky in that respect.

I should get my results through soon so Im hoping I'll be in a position to speak to my GP about it all then but in the meantime, I take the naproxen with paracetamol when needed. You're right about them not being very strong, they take the edge off slightly but not much. My wrists, shoulders and feet are constantly painful all day every day, that doesnt go away at all. Im lucky to have a husband who helps out when Im bad without the slightest complaint which makes me feel loads better at times.

Im curious as to whether the Rheumatologist confirms it to be RA or OA. He didn't really listen to my symptoms very much and I was examined on one of my more 'flexible' days much to my annoyance. Typical that he didn't see me on one of my usual painful days :? Im hoping the x-rays will show something. The toes on my right foot are starting to bend to the right which Im hoping show on the x-rays, which will be interesting as he didn't even look at my feet!! He kept focusing his examination on my knees and shoulders when I kept repeating that my hands and feet were the most painful...

Thanks for replying anyway, its great to have such wonderful support x

elnafinn

Hi Caroline

Welcome and it is great that you have an understanding, helpful gp unlike the rheumy you saw. :x I think, a good chat with your gp is in order and if you are not happy with what the rheumy has said perhaps a referral to another rheumi would be on the cards. It can make such a difference, depending on whom you see. It is quite scary really from that point of view. After all they are meant to be the experts we can only tell them what we are finding and how we are feeling in ourselves. If they do not listen, they are obviously not that interested, which is totally out of order.

I wish you well with your chat to the gp and see where that leads.

Do keep in touch,

Luv
Elna x

angel1

I`m so glad that you have found us Caroline. A big welcome , and I promise you will not feel quite so alone, and scared now.

The first thing you must remember - sadly - is that you have to keep shouting to be heard. How you were treated, unfortunately, is not uncommon. Sit down, with your husband, and make a list of everything - no matter how trivial - that is worrying you, or giving you pain. Make a double appointment with your GP, again taking your husband, or another family member with you. Be very polite, but firmer than you`ve ever been before, and DON`T leave until you are satisfied that you have effective pain relief, and, another referral to a consultant.

Things will get better for you, especially as you have good support, but expect to feel very low, and emotional from time to time. You are experiencing big life changes that will effect you on a daily basis. It will take time, and maybe even some denial on your part, before you can accept these changes. What I can promise you though, you will accept them eventually, with the right help, and life will be good again.

I wish you all the very best...........Ange.

snowball

Hi Caroline i was 35 when i stared getting pains in my hands and shoulders then it started in my feet eventually i went to see my docter who did some blood tests they came back with slight inflamation. My docter refferd me to a rhuemy docter who did more blood tests and xrays i went back 6 weeks later and was told i had r/a. I was lucky my docter is very understanding i also have a rhuemy nurse. I know how worrying and frustrating this all is, i find it best to make a list of questions as i allways forget what i wanted to ask. Go back and see your docter if your pain meds are not working i was taking co-codomal and diclofenac now i take tramado paracetomal and diclonfenac. Hope you get something sorted soon.
julie x

dolittle

Hello Caroline,
Glad you found the site. These folk are wonderful - you'll feel supported by them. I have.

'although Im sorry to be cruel but he was an absolute idiot who didn't listen to me, didn't ask many questions'. You're not being cruel ... there's a lot like him/her about. Many of us have come across them. I have come to the conclusion that they back out of discussion because they haven't the answers. It would be a lot better if they just said so, and spoke some gentle words of encouragement like 'we'll get to the bottom of it, don't worry'. Now THAT would be nice.

My RA started exactly the same as yours - overnight. Stick with it, talk to your gp, take a list with you next time you see the rheumy and make him answer what you ask.

Keep in touch and let's know how you progress. Don't be afraid or let your mind go into overdriive - I know what that's like too. Hugs and support.
dolittle

redkettle

dippydoodah wrote:

He didn't really listen to my symptoms very much and I was examined on one of my more 'flexible' days much to my annoyance. Typical that he didn't see me on one of my usual painful days :?

Hello Caroline,

I'm only new here myself and have my first rheumy appointment at the end of the month to try and diagnose my joint problem. I'm 30 and in the same boat as you to the extent that i don't know what i have yet, only that i'm in a lot of pain.
I pop nurofen like skittles to keep the swelling and pain at bay, so i'm wondering if i should stop that for a few days before visiting rheumy so that i 'present' at my worst. As like you, i'd hate to go on a good day and be told i'm ok.

Anyway, welcome and i hope that though you feel you weren't' listened to very well, that the science will do the talking and the bloods/xrays will dictate your treatment.

John

skezier

Hi Caroline,

Nice to meet you, they are a good lot here and very good at helping you feel your not alone I think.

I am sorry your Rumo wasn't so good and I agree go and see your gp and see what has come through in the reports.

I think sometimes doctors of all departments forget we are not just numbers but are 'real' people and its a shame yours was one of the ones who seems at best disinterested. Sometimes they look at certain joints as they are markers for which it is you have. Not all the types come up in bloods either but I really do hope your gp can get things moving for you there and you soon get sorted out better than now. You should probably tell him you need different pain relief and well I know its all horrible and confusing and worrying but in time I promise you it does get easier. Take care Cris

frogmorton

Hi Caroline

All I can say is hang on in there. You WILL get the help you need but sometimes it takes a while lots of battles to fight on the way.

Lots of us get treated like this at first but in time you will get the help. Maybe your GP will have some ideas in the short term or will send you for further tests.

Thank goodness for your hubby - ALAWYS take him with you to apts if you can

Love

Toni xx

airwave

I'm putting on a course for doctors, lesson one: -

1. Patient care-pay attention to your patients, they have the illnesses!

This is a recurring theme on these pages and seems to affect most of us.

I'm off to see rheummy on Thursday, will I get any further? I doubt it!

8) Its a grin, honest!

woodbon

Hello,
Welcome to the club! I hope that you find it useful and supportive, I know I do. Everyone has been through the mill and gained tips they can pass on. Dont be afraid to ask or just have a good old moan when you need it! Love Sue

Wonkylegs

HI Caroline

welcome to the forum although again I am sad that you need us .... but I find this a great place to let off steam and to learn more to help myself.

as the others have said, at times you need to make a fuss to get the proper care .... and also it takes a bit of time to build up a relationship with your consultant.

Taking someone with you to a n appointment is a great help, especially if they also live with you and are able to point out just how hard life can be for you day to day. I know how hard that is though, as my hubby struggles to take time off work but he has done for times when, like you, I needed answers but felt I was being fobbed off.

I really hope your GP can help you with answers .... and I'll be thinking of you.

take care & lots of hugs
WOnky

dippydoodah

Thanks folks, will keep you posted and let you know.

John, I did the exact same thing. For the day or two before my appointment I didn't take any painkillers on the hope I would be able to describe my pains accurately but my Dr wasn't really listening anyway. If I could give one piece of advice for your first appointment, it's write everything down. Even if you have to give the paper to the Dr to read, make him/her listen. I made the mistake of leaving the office without questions answered and I totally regret not standing up for myself now.

Hope your appointment goes OK, will keep my fingers crossed!

redkettle

dippydoodah wrote:

If I could give one piece of advice for your first appointment, it's write everything down.

Good tip! I've a poor memory on a normal day, so as long as i remember the pen and paper, i'll jot it all down

dippydoodah

Definately write it down, everything, even if you feel it is insignificant. Ive started writing everything down from the smaller things like opening the oven door (a fight which the oven wins every time! to the bigger stuff like getting in and out of cars - even if its as simple as brushing your teeth (which really hurts my wrist).

Hope it goes well for you.