Doctors...help!

controversial

I have 'suspected RA' and have done for many years. I have a lot of blood tests and scans, but nothing ever confirms. There is a huge history of it in my family, but none as bad as I have it.

I am on Co Codamol and Amitriptiline (20mg). I haven't seen a doctor since August. Since then, I've just got worse. Walking is so painful, and the pain has spread to most of my joints, and up my back. I've been to A&E four times. I'm so tired all of the time, and I sleep alot. The cold makes me seize up.

I haven't been to uni due to this, and now need a doctors note to explain why, or I have to leave the course. I had hoped A&E would write it, but they won't, so tomorrow I need to go see my dr.

I always think they will think I am lying and I'm so scared of going. Even when I eventually do go, I'll feel like crying and pretend everything is fine....

Has anyone got any advice? I've got no one who can come with me, as I live alone. My parents are estranged from me.

lucymum

oh hun I really feel for you babe!!!!
Maybe when you go if you took notations of when things have happened, like a diary. I know it's a bit late to keep one for ths time, maybe keeping one from now on will help. However taking a notation of how you have been may help.
As for the doctors not beliving you, put that out of your head as much as you can!!! I know it's hard when you have no dignosis but you have to try, you have to fight!!
Furthermore please note that the doctor may charge you for a letter to uni, so make sure you have cash on you!!
Sorry I am not much help, but take strength from knowing that there are many people out there who feel like you do and hve been through this type of thing!!
Good Luck hun x x x

skezier

Hi,

You sound as if you need some help. Its hard on your own, I know but this site becomes an incredible place for support when you need it so I am glad you have posted.

Your not a fake and they wont think your lying. So many types of arthritis don't show in bloods and I honestly think you need to see a Rumo.

You must go and see a doctor, I think you also need to tell them exactly how you are and do a no holes barred thing. Sometimes it helps to write it down before hand and maybe you should try and get a double appointment?

I really hope you can get some help and I promise you your not alone. Please keep in touch with the forum and i know the people here will help you all the way. A (((( )))) and take care Cris x

minky67

Hi, Im so sorry to see that your suffering like this.
I would advise you to see your gp & ask for a referal to a rhymatolagist at the hospital.
They have a greater understanding of all types of arthritis.
I have OA & Fibromyalgia,these dont show up in blood tests. so with me its bones & muscles. I suffer terribly with cronic pain & fatigue.I also have other conditions to long to list.
You need decent pain relief for a start & sometimes physiotherapy can help.
from the rhymatolagist other things can be discused & at the mo im under the pain clinic & have a pain management plan.
Theres loads of help but you have to start with your gp to get the ball rolling.
I really hope you can get some help & things get better for you.
I hope thats some help to you. sorry its a bit long winding,i do go on sometimes
debs

trisher

Hi

You must go and see your GP. He can make a referal to a Rheummatology clinic.

They can do so many tests and then they can start you on the meds you may need.

Please take that first step and go to your gp. The A&E will just send you home.

Trish xx

woodbon

Hi, As all the others have said, its time to see your GP!
Love Sue

colinone

Hello, i'm with the others you need to get your GP to send you to the rheumatology clinic at your local hospital. If your finding it hard to talk to your GP write it down and hand it to them. Some Arthritis is hard to diagnose are there are now new tests to help it show up in its early stages. If you impress on your Gp you are finding it difficult to cope and want to see a rheumatologist he should help. Take care and i do hope your feeling better soon.
Colin

margaretschild

Hi,

I agree with everyone else on this one.

When you go to see your GP be honest very honest, I have to write down all my probs before I go to the docs, so I don't feel a b****y idiot when he asks whats wrong and I've forgotten.

The support is out there for you, it is just sometimes difficult to find it.

Good Luck

Linda

dachshund

Hi Contraversial.
a doctor is only a person that has learnt about illness and things so they know the right meds to give people so if you dont tell them whats wrong they wont know what to give you think of the doctor has if he is your friend or write it all down. make sure you tell him every thing.
you will feel pleased when its done.
joan xx

controversial

Thank you all so much
I'm writing a letter now. I tried to get at appointment for today, but they are full until Wednesday at four, and that isn't with my normal doctor. Maybe that will make it easier?

I'm so happy to have found such a supporting forum
I woke up in agony today, and had to travel into town to get painkillers and heat patches, which was expensive. They help, though.

I really appreciate everyones support, I feel much less lonely now

jordan7j

Hi controversial, so glad you made an appt, and its good to write it all down too. Everyone here is amazing, and very knowledgeable. I hope you get some help with pain and a referral to the rheumy too. Make sure when you go to rheumy to tell them there is RA in the family, it does make a difference, I didnt realise this until I went.,My mother had bad RA, and it does seem to be hereditary. Good luck with your appt on Wednesday, let us know how you get on, and take care of yourself.
PS I hope you dont get charged for a letter for your uni Jay x

valval

hi i not good with docs but find if i make a list with what i want to say does help and when they say how r u tell them do not smile and say ok as i used to and if u r bad tell them if u want to cry well i do so do not worry u not the only one

woodbon

Hi, I find that when I ge to the docs I've forgotten all the things I want to ask about. I find if I write it down on paper before I go, sometimes just a few words to prompt me, I don't even need to use the list as I can remember it! :shock: It seems that by writting, the brain takes it in and when I start talking it comes back to me. I know other people who find this with shopping lists or exam revision.

As the others have said you do need to get help so that you can have the right treatment, then, hopefully you will feel loads better! Love Sue

controversial

Well, I'm feeling more nervous then ever...

I've printed a copy of the letter that I sent to uni, and I'll ask him to do that first, and as it pretty much explains the changes hopefully I won't have to explain everything.

I'll ask for more amitriptyline and see if he will give me any different pain meds, and then I'll ask to be referred to a rheumy.

It's very snowy here, so I'm having to walk in the cold, which isn't going to be perfect, and I'd much prefer to chicken out and not go...especially because I thought I had a woman doctor, but I have a man I've never met before...I just found the idea of a woman to be a bit easier, but I hope I'll be okay...

I hope everyone is having an okay day

controversial

I just wanted to update, in case anyone is reading...

I went to the doctors, didn't get my letter for uni as the doctor was in a rush and I didn't feel able to ask, but he gave me more amitriptiline, and started me on Tramadol, which I've never taken before.

He also managed to get me an appointment with rheumatology, he rang up just as I'd got home (within half an hour) and told me that he'd got me one for 11am tomorrow, so I'm feeling nervous about that.

I'm hoping uni will hold on for the letter, and not kick me off the course just yet...

controversial

pixyandfaries wrote:

well done! dont be scared there there to help you

Thank you I haven't been in four months, and the doctor dismissed me completely then, he just ordered bloods and sent me home, promising a 'fast' follow up appointment which didn't come til now.

I'm feeling so scared I guess I feel lonely, too, I don't know anyone with this. I'm pathetic :P

I hope the snow hasn't affected you too badly today?

minky67

Hi, Its right to feel nervous but they really can help.
From my experience.I have OA.
The 1st thing, when you get there the nurse should call you in to do height, weight & a water sample.
Then when you go in to see rhymy he should do a full examination of joints. Ask your history of pain,how long, how bad & limititations you have.Start you on some medication, usaully with a prescription to take to the hospital pharmacy.
He may send you for bloods, order xrays & a follow up appointment.
Through the rhymy you can be refered to physiotheraphy, Occupational theripists, scans etc.

I'd recommend you wear clothing you can easily remove ( the nurse will help if your struggling )
Good luck, Take a list of problems with you so you dont forget & write things down if you want to so you can go over the things theyve said to you when you get home. Thats what i have to do as theres to much to take in.
debs

controversial

minky67 wrote:

Hi, Its right to feel nervous but they really can help.
From my experience.I have OA.
The 1st thing, when you get there the nurse should call you in to do height, weight & a water sample.
Then when you go in to see rhymy he should do a full examination of joints. Ask your history of pain,how long, how bad & limititations you have.Start you on some medication, usaully with a prescription to take to the hospital pharmacy.
He may send you for bloods, order xrays & a follow up appointment.
Through the rhymy you can be refered to physiotheraphy, Occupational theripists, scans etc.

I'd recommend you wear clothing you can easily remove ( the nurse will help if your struggling )
Good luck, Take a list of problems with you so you dont forget & write things down if you want to so you can go over the things theyve said to you when you get home. Thats what i have to do as theres to much to take in.
debs

Thank you so much I really appreciate your help, the hospital told me to bring my parents for support which made me feel so alone but I feel a bit better now

minky67

Hi, you'll be fine honest & the relief you will feel just for going & seeing a way forward is a great feeling.
You wont feel so alone when you get the help you need & then youve got us for back up & support.
Please just make sure you tell them everything, list everything & dont feel put off by consuming time. Its your appointment & your time with them.
I hope its goes well & let us know how you got on.
debs

skezier

Hey your not pathetic!

Its honestly normal to feel nervous and when you go you are not alone. We shall be there with you and don't you forget that. I am glad your being seen and if you can write down how you are on a bad day cus a lot of the arthritis types don't show in bloods but are still there. Good luck and remember your not alone. ((( ))) Cris x

valval

we all go through this it part of coping with arther u should take some one a friend would be good as when i come out do not remember a word they said lol but we love having u here there is always some one on and lots of suport u r not on your own we r all here for u

controversial

Well, I've been. I'm not sure what to think.
He felt my joints a little, but not much, and sent me for blood tests. He confirmed I have fibromyalgia, and upped my amitriptiline to 25mg. He said my calcium levels are non existant, and gave me calcium tablets, and 4 boxes of penicillin, although he didn't say why.

He said that while I'm so young, he doesn't want to 'commit' me to long term treatments, and he'll see me again in 6 months. He wouldn't consider my doctors advice of getting me a wheelchair or something for bad days...

I need a letter for uni about all of this, as I haven't attended and they are holding a meeting about it next week, to see if I can continue on the course despite being up to date with coursework, lessons etc. I didn't feel able to ask, though, and the doctors hasn't got any appointments left

tkachev

You have a diagnosis now so let your uni know that you have only just been diagnosed after months of pain.I think 6 months until the next appointment is too long as you are new to all this and trying out new medication which may,or may not work.If you dont feel any benefit go back to your G.P and ask for a different medication.Dont be afraid as they know you are unwell and in pain. Blood tests are also used to monitor medication performance, as well for a diagnosis.There is loads of different medications and one of them will help with the pain and inflammation and then you can start to deal with life more easily.
You could claim DLA if you are having difficulties with dressing,walking,washing,cooking(such as using veg peelers,opening jars,carrying pans,picking up a full kettle).The forms are gruelling but if entitled you will find the money very useful(it is not means tested).CAB can help with the forms.You need to have had the illness for at least 3 months ongoing(check this as it maybe 6 months).
Anyway,try not to feel so alone as we are with you and will help you through.Good luck!
Elizabeth