scared of the drs

devillete

hi all,
i was diagnosed with OA in my hands 18mths ago and was given lodine and co-codamol and told to get on with it! i started getting severe pain in my back and hips but it was completely ignored. i moved so changed drs and he ran every blood test going, all clear apart from inflamation. i have been fighting all this time to be refered to a rhuemotologist and now i changed drs and finally have it but i'm scared to go!!

i am a single mum of 4 young children (2,3,7 and 8 ) so its hard, i cant do the school runs cos i'm in so much pain and dont have the energy to walk that far without stopping all the time.

what if they say its not arthritis after all and i lose my dla?? or even worse i lose the little pain relief i have (not that i feel it does much or if it does i'd dread to think of it without). i know it sounds mad but i know theres something wrong cos of the pain but i keep thinking it cant be that so i'm doubting myself and scared they're gonna take it all away :roll:

sorry for rambling!!
kate x x

traluvie

Hi Kate,

Sorry to hear you are feeling so rubbish at the mo...
I take it you wasn't referred to rheumatologist before? did your old gp diagnose OA??
tThe rheumatologist will prob do another series of bloods to cover everything and check your movement and look for any obvious swelling and other things.. This is to give a thorough investigation to get to the root of the problem... That way you can be treated appropiately..
I know it easier said than done but it will be ok and there are many ppl on here to talk to.. Do you have a friend or a family member who can come with u to the appointment??
You are obviously in pain so there should be no reason for doc not to give you painkillers..Regarding your dla di u get that for u OA?? If so i see no need for them to stop it... if your concerned you can contact the helpline here and they will be happy to help if they can..
I know how hard it is when u have to go school run.. i am struggling the past few days with my ankles so has been a struggle for me..Do you have a close friend or family member to help u out at home and that??
Your not rambling either luvie.. were hear to help eachother if we can..xx

devillete

hi
yes my old gp diagnosed the OA but only beacause i had caprel tunnel and the surgery for that and he ruled out RA by blood test so said its OA but wouldnt refer me, he was pretty poop tbh
new gp has done all of the blood tests she can do, she was looking at M.E as a cause for the pain but its been ruled out, i also have suspected narcolepsy so that doesnt help much either!
my sister is taking me to hosp because i will have the 2 youngest with me, my mum comes round when she can to make the older 2 help with the housework etc, they dont listen to me cos they know i cant get up to do anything!!

i get lower rate care DLA, they say i dont need help frequently enough during the day to qualify for anything else. some of my family dont seem to believe me and say i should just get on with it regardless of the pain so that makes me doubt myself even more, if they can do every needed to be done why cant i!?! i know what i can and cant do, i sit on the floor and shuffle around just to pick toys up but it feels like some of them come round and look around then moan that the kitchen isnt spotless or theres a few toys on the floor. that just makes me feel worse.

traluvie

Katie
sound slike ur old gp was ****.. ra doesn't have to be diagnosed from blood test alone... what a waste of time he was..
Sounds like u have a better gp now which is reassuring and the rheumatologist will do lots of tests.. so hopefully soon you can get to the bottom of it..
I still do not have a diagnosis.. so i know that feeling of living in limbo an not knowing..
Is there no1 can come with you into the consultant room when you go.. cause if u anything like me you'll go in sit listen nod your head come out and go what was all that about!!!! so if you can get some1 to come in with you they can be your extra ears.. When is your appointment???
Regarding your family... it is really hard for them to understand how it is we are feeling... on the outside we may look ok, but on the inside we are suffering.. saying just get on with it is easier said than done... from the sounds of it you try your best and thats all you can do.. are you on any meds???
Maybe you can get some of your family to look on website regarding arthritis... let them read some of the stories on here for them to get some understanding of how it affects your everyday life.. You really need support... you are not making it up.. i used to have days when i would think it was in my head but then i realised it's not... I am still learning to adjust.. it not easy but there are lots of ppl to talk too so don't ever feel your on your own...xxx

devillete

my sis coming with me to watch my girls but not sure if she coming in with me or not, app is 3rd feb so not long!

my nan had RA so they know what it is and how it affects u, esp my dad and he seems to be the worst! i'm on lodine (etudolac) for the OA, co-codamol for the pain and heart burn stuff to counteract the lodine lol i was on folic acid but new dr said theres no reason to be on it, its normally given to people on methotrexate. so yeah my old one was **** lol

i'm not sure whats worse, the fatigue, falling asleep or the pain. i keep telling myself that just one of these things would drag anyone down but i still cant convince myself that its a bad as i feel if that makes sense

barbara12

Hi Kate
And welcome to the forum,its is normal to be worried has to how appointments will go, I must say like you I fought to get a rheumy appointment, them when I did it was a waist of time, he just asked a couple of questions, I had to get on the bed while he bent my legs, then he said you have OA, and that was that.
So dont worry , you obviously have something wrong or you wouldnt be taking pain meds, and no they wont take these away from you.
Make sure you take a list of any questions you might have, and a list of all your symtoms, it really does help.
Good Luck
and let us know how you get on.
Barbara x

tjt6768

Just wanted to wish you the best, sorry that you are suffering this way, it's horrible when family members doubt you eh? I've had that...
Hope that the rheumy gives you some help..

devillete

hi barbera and tony
thanks, fingers crossed they can do something!!
kate x x

traluvie

devillete wrote:

my sis coming with me to watch my girls but not sure if she coming in with me or not, app is 3rd feb so not long!

my nan had RA so they know what it is and how it affects u, esp my dad and he seems to be the worst! i'm on lodine (etudolac) for the OA, co-codamol for the pain and heart burn stuff to counteract the lodine lol i was on folic acid but new dr said theres no reason to be on it, its normally given to people on methotrexate. so yeah my old one was **** lol

i'm not sure whats worse, the fatigue, falling asleep or the pain. i keep telling myself that just one of these things would drag anyone down but i still cant convince myself that its a bad as i feel if that makes sense

Well your family should be a bit more understanding.. maybe sit down and talk to them and explain how you are feeling.. and say it's not that easy to just get on with it, especially being a single mom.. that hard enough on it;'s own let alone with OA too...Hope they listen.. were always here and the helpline too..

I know what you mean about which is worse... i struggling with pain at the moment, i kinda got used to the tiredness and not sleeping prop lol...
When you said you can't convinve yourself that it is as bad as you feel... i understand.. My friend from work messaged me yes to see how i was.. i told her i was not gd but stil smiling... struggling to brush me hair and walk recently etc etc.. and she then said i had made her cry and didn't realise i was so bad??? i was then thinking did it sound that bad??? too me i am slowly learning to adapt and getting used to it(not that i'll ever get used to it but u know what i mean) i never looked at it as though i was really bad..but recent things like being off work and how things are getting worse for me is making me have to face things differently... It's not the easiest of things..
Least your appointment not far away.. hopefully you may get a few more answers then,,, and like barbera said write a list of questions for you to ask.. will help..
Keep us posted and you can message me anytime if you want to talk..xx

frogmorton

Hi kate

welcome from me

Don't panic!!!!!!!

Most of us are scared of going to the consultants (unless they have a wonderful one!).

Very very unlikley that you will be told 'it's all in your head' even though this is your worry. Think ppostitively - you need to get a firm diagnosis and they may actually be able to help you.

Have you thought of asking social services to help at all with the kids? I dont know if they can, but the kids might be entitled to a carers assessment if they are helping out at home more than kids who don't have a poorly mum. Or you could get in touch with one of the organisations that help with young carers.

That might mean help instead of feeling like family are critiscising your home and making you feel disbelieved :sad: Maybe they can arrange help to get them to school or anything at all I'll bet. (Was on my own with two kids when I had my back op so i know how it feels).

As for the actual appointment - as the others have said I think you will be fine and am glad you have someone to go with you. Get the list done too. It really helped me when I first went and I still do them now.

Love and best of luck

Toni xx

julie47

Hi Kate
welcome to the forum
I hope the rheumatology app goes well and that they can soon put you on the right medication . Then hopefully when that kicks in you will feel much better.
Take care
juliepf x

tkachev

Hi Kate,

I am so sorry you are having such a struggle. I have young children too and I would find the school run a problem but OH does it. I can reach the school but doing both ways is a nightmare.Supervising them is such hard work too when you feel so bad.I have been there.
It must be such a worry for you, pain and fatigue too.

You won't lose your DLA. It is for symptoms and you don't have to have a name for your pain.As you are struggling so much you deserve it.

Is there anyone you could pay to pick up/take your children to school? There is a recession on so must be someone who needs a few pounds. Or a s Toni said get social services to assess you and see if you qualify for direct payments and that way you employ a carer to help a few hours a week.
Hope you can get some help soon
Elizabeth

dorcas

Hi Kate and nice to meet you.

Arther is the devil of a condition and comes in many forms... not all show up in blood tests so you are not unusual in that respect.

There's a whole group of arthers' called 'sero-negative arthropathies' which have a negative Rheumatoid Factor ( which is the one they look for in blood tests to diagnose RA).
I have PA which is psoriatic Arthritis and it took a year of seeing a rheummy before they were able to settle on the diagnosis.

For some people it can take even longer and much depends on what the rheummy's see on xrays over a period of time, blood tests and what you tell them of how you feel and your history of having joint problems.

My advice would be to keep a diary between now and the 3rd Feb. Write down daily which joints are sore, red, stiff or swollen; whether you have any morning stiffness and how long it lasts; when you feel fatigued; what kind of pain you have; whether any meds help with the pain;whether your sleep is disturbed; what impact all of this having on your day to day life.
This helps to show the pattern of your condition and can be helpful for the rheummy to see as it gives an insight into how arther is affecting you!

Seeing the rheummy is hopefully going to help you so don't be afraid. Being prepared for the appointment helps .

Good luck Kate! we'll all be supporting you.

Iris xxx

ironic

Hi Kate,
You have some great advice here and I cannot add anymore. I just wanted to wish you well for 3rd of Feb.

Keep posting as at least you know you are not alone now and it would great if you can keep us all updated.

Hugs,
Ix

sunnyhours

Wow! It's pretty much the same EXACT story as mine...I know I don't have a herniated disc...I know that much...
I'm battling the doctors for some relief/finding what the hell is wrong with me...it's been 2 years. Don't lose hope! You'll find a doctor who cares and everything will get better from then on

jilly

Hi Kate , I have been doing the same for the last 4 years , i have had OA for 15years but it as changed so i am trying to sort it out, this week they seem to have decided ,So your not alone i think there are a lot of people on here in the same boat. you are in the right place there are a lot of well informed and helpful people on the forum. If you feel fedup there are people to make you laugh so welcome . I hope you get some answers soon .....jilly

BoleynBlue

You sound like me regarding pain in hips and back, my blood tests also only showed up inflammation until the doctor ran a new test which showed raised levels (I cant remember now what the test was for) because of this he thinks I have gout, some days I think he is right and other days I think it sounds more like OA, especially since my hips are clicking when I walk.

Regarding DLA, as you are still in a lot of pain you will still need to have it (that's my opionon anyway).

Dont be scared.

devillete

hi all, thanks for all your advice, i will keep the diary for rheumy, thanks for that i never thought of it!!
my children now walk to school themselves (its only round the corner and theres a lollypop man/lady at the busiest part just outside the school) but when my youngest 2 start i will have to do it.
i cant have a carer because i only get lower rate care dla atm for my hands, i'm hoping rheumy will tell me more and it could go up so i'm entitled to have someone come help, cant tell u enough how much just having a friend round for the afternoon is a help.

thanks for everything

dorcas

Hi Kate,

hope you're having a good weekend and not in too much pain.

Having someone 'pop in' to see you is definitely a bonus.... but please remember that you can always come on to the forum where you'll always be welcome and can share with others who understand how things are for you.... and vice versa!

There's also the Chit Chat zone where you can have a cyber cup of tea in Val's cafe and join in the banter there.

Keep posting so we can support you with your rheummy appointment ....and when the time comes let us know how it turned out.

Iris xxxx

hileena111

Hi Welcome to the forum.
We've all come across gPs like that....mine was dreadful took ages and constant saying I wanted a referral and eventually he sent me to a rheumy.....diag with oA so when I came back GP took over until about 6 yrs later i asked to be referred again.
Anyway....you are in pain...theres no reason why you shouldnt have painkillers...in fact if you get a proper diagnosis from an ortho/rheumy you might manage to get decent pain control.....
Ask your sister to come in with you.....{if thats possible} I find it helps to have someone that remembers exactly what was said...I come out and say...what did he say about that LOL
Make out a list of questions and take that with you as well....if he's half decent he'll appreciate you making a list
Love
Hileena

tjt6768

Devilette, at least now you know for sure that you are not alone eh? This place as already been a big help for me, was laid up pretty much 1st two wks of this yr, this place was were I spent most of my time, lol....

Be well, we are all here for you..