Lost and don't know what to do

flareyclare

This is my first post on the forum.
I hope that someone will be able to shed some light on what is becoming a distressing and painful situation. I feel lost.
About three years ago, I started experiencing pain in my knees which was diagnosed as housemaid's knee. This is still quite tender. What then developed was joint pain in my knees and hips, which made walking very difficult.
I have now developed muscle pain and I seem to have become very sensitive to pain (ie. Anyone bumping into me on the bus seems to give me a lot more pain that it did before). All my joints are affected, but my elbows and hips are the worst.
Now, on a bad day, I have pain all over, my muscles, joints, the tips of my fingers, my jaw, and I ache and am really sore. A bad hip last summer felt like someone had stuck a knife in the side of me, and typing can make me feel like someone has put mini-vices over all my fingers. Some of my muscles have wasted.
Sometimes, swimming and healthy eating helps, but at other times there is no reason or logic to it and it just comes as a bolt out of the blue, and my plans are turned upside down. Nights can be painful and tearful, or dopey and blurry if I have taken cocodamol.
I have been seeing a rheumatology team at my local hospital and they have given me lots of blood tests for inflammatory arthritis, as well as x-rays, but nothing shows up. So last time they discharged me and now I am on my own with it, and really feel that too. I have moved GPs quite a lot in the last 3 years and my records have taken over six months to reach new surgeries. I have never been prescribed any painkillers or given any advice or pointers on any changes I could make to my lifestyle to make it easier.
I get so upset and sometimes just want to cry (and often do). I guess I need to go back to my GP and get referred to another (and better) hospital, but I'm so exhausted with chasing the people who are supposed to be helping me, but who show no interest whatsoever in the impact that pain has on my day-to-day life. If nothing is showing up on the extensive blood tests I am having, what can they do?
The emotional impact this is having on me is devastating. I never realised how isolating living with pain and an unknown illness could be. It is the small things which upset me, such as friends walking a couple of paces in front of me because they so desperately want to get to wherever they are going without having a slow coach on board or people suggesting that going to the pub might make me feel better. I am told to feel grateful that I don't have arthritis, to drink rosehip tea, that I look 'fine', and that painkillers are addictive so I probably shouldn't take them. I get pity and awkwardness, but rarely does anyone take the time to listen, or offer practical help.
What do I do? I am in my late 20s and work full-time. I am worried for the future.
Thank you
Clare

valval

do your joints feel warm and swolen sounds bit like when i get a flare up also the exhaustion is terible been to town and have to sit with feet up before can do anything else even while on tabs roll on when can take more pain tabs. but to get back to u get back to gp u need help u can not go on like this and do not try to make light of it tell all even if u think not part of it all. we all think they will say in our minds but my doc said it not so please do not put off any longer u need help life can be so much better

frogmorton

HI Clare
I am so very very sorry that this is happening to you.
I would cry all day every day too if i were suffering the way you are.
Lots of us understand the pain and frustration of going 'undiagnosed' bloods being normal but knowing ourselves that something is badly wrong. A diagnosis a 'label' goes a long way to getting undertsanding from those around us.
I agree that you need to see a GOOD rheumatologist. But what you need first is an ally - someone to support you when you go to these doctors. A friend family memeber or someone like that. You need someone else to speak up for you and say what they see.
Evidence Clare. Get it. Photos, take your temperature. Does it go up/down at certain times. How long does any stifness last? How much does it hurt on scale 1-10. Write it all down.
Now you need to try to research who to get refferred to. Maybe someone here knows a good rheumy? If it's ok you could tell us roughly where you live and someone might know a good one near to you.
In the meantime beleive that you have the right to feel so upset and that we will be here to support you while you hopefully get it sorted.
You take care
Toni x

topgirl

Hi
sorry you are feeling so down....Pain is awful and i know how you feel as 2 years ago i was a very different person to the one i am now....
when i first started with RA...i thought i'd broken my toe and torn a cartlidge in my knee..in terrible pain and couldnt work...
No arthritis was showing up on xrays and bloods were clear :roll:
Very strange.....
However i KNEW something was wrong( just like you)..and my consultant did key hole surgery for a biopsy on my knee....and the results came back that i had RA...i am know on treatment and dealing with my condition( as best i can :shock: )
I suppose what im trying to say is..trust your judgement...pester your GP for a hospital apointment and get the ball rolling....being with the sort of pain you are describing isnt normal....you need to get help...
Good luck
Kay
x

lindah

I am just going to agree with what's been said already.You need to tell the doctor that you want to know what you have got not what you haven't.
The onus is on them to help you, not for you to be sent away in pain and distress.This is a wonderful forum and the helpline are great so at least we will be here for support.
I know it seems as though the future is bleak bit when you get pain relief and treatment it makes a big difference,
Looking forward to seeing you around on here,keep your chin up

Linda H 8)

topgirl

have just reread your post....
I must admit i have had a little cry
You sound just like me...
esp the bit about walking to the pub :!:
BUT....i am begining to feel better....
xxx

kezzo1

sweet thats terrible that no one is taking u seriously my heart goes out to u its so hard when ur body is in termoil and u cant do anything about it. please def go back to ur gp u cant carry on like this cry in front of him make him realise ur situation.
ask for anti infamitory poss to help with the pain in the mean time.
take care and let us know how u get on. x

tkachev

Poor you.
I definately think you need painkillers.You should be getting them prescribed by your GP.They should make a difference,enough for you to cope better with the day and sleep better at night.
It really sounds like the start of arthritis,but even if its not they should be investigating what it could be.

I really feel for you
Take care
Tkachev

flareyclare

Thanks so much everyone, that advice is really useful and i will make another appointment with my GP.
in all this time i have been thinking, 'there are people worse off than me. it isn't that bad but when i read through what i have written, i realise that it is actually pretty bad'.
will keep you updated.
thanks so much again,
you guys are lovely
C x

dianel

Hi,
Just to add to what the others have said - I have sero-negative arthritis which means that it doesn't show up in blood tests. In other words just because the signs aren't there doesn't mean you don't have it. You need to be very forthright about your pain and I agree that you probably need someone to go with you for support. Please don't let them fob you off - you know the pain you are in. All the very best. Diane.

livinglegend

dianel wrote:

Hi,
Just to add to what the others have said - I have sero-negative arthritis which means that it doesn't show up in blood tests. In other words just because the signs aren't there doesn't mean you don't have it. You need to be very forthright about your pain and I agree that you probably need someone to go with you for support. Please don't let them fob you off - you know the pain you are in. All the very best. Diane.

My excellent rheumy said exactly the same as Diane, that you should not think that tests are the be-all and end-all of diagnosis. Mine listens to me to find out how I feel and takes that as the major diagnosis. After all, I am the expert on me. I have me around 24 hours a day, 7 days a week and I know what hurts and you can't see pain.

The muscle pain could be because of the joints being swollen. You tell your muscles to move a joint and it refuses to move freely. This could cause muscle strain and hence localised aching and muscle pain.

Muscle problems are also part of the bodies defence system. When you are ill it wants you to rest and recover, so all your muscles ache until you rest.

I would follow the suggestions as given by others and seek a new appointment with a different rheumy. Difficult though things can be at times you can't go on without more help.

Joseph 8)

twiggypuss

Just another thought: you could also ask your gp to refer you to a pain clinic. They wil be able to prescribe painkillers and help you manage your pain while you are waiting for a proper diagnosis.

dachshund

Hi F Clare.
I please go and see your gp as you need some thing to help you.
i know what pain is like and itv wears you down and you get up set and all you can do is cry.
no body else will do it you have to as you know how you feel.
joan xx

woodbon

Hi, You do need to see your GP, I know how hard it is when you get discharged, to go back and see someone when you still have the same symptoms. I'm in that sort of position myself, not to clear about the diagnosis, discharged from rheumatology, but still worried, I've been referred to the pain clinic, which was good and I hope to see a specialist spine physio soon. It does often take a while, a long while for the medics to be certain of what you have, but don't give up on them, keep on asking questions.
Love Sue

ritwren

What an awful way you're in at the moment. I'm so sorry to hear they've sent you away without help. I agree with everyone on here and do hope you see your gp as soon as possible and are able to explain just how bad your symptoms are. It's good to come on here and see how others cope I'd be lost without this site. I understand where you are coming from when you think, others are much worse than me and they manage But everyone is different and that does'nt mean your pain is any less. This is something I'm still trying to accept myself. I hope this makes sense. I wish you nothing but the best of luck with your GP.

loz23mcg

Hi Clare,
So sorry to hear what you're going through. I'm sero-negative as well and the temptation is to feel somewhat lost, as there is no solid evidence to point at and say "That's what's wrong".
I have the same problem of worrying that there's nothing really wrong with me. So often, in my head, I hear my Mum or Gran saying "there are people much worse off than you", "you're complaining about nothing" "just making a fuss", and so on - but deep down I know that the way I feel is *not* normal, there *is* something wrong and I really need some help!

I didn't catch where you were from, but when I was dismissed by my first Rheumy I came on here and asked for anyone to recommend a good Rhemuy in my area. I took her name and hospital, went to my GP and got him to refer me. I got an appointment two days later! As a result I'm now with a very kind and understanding Rheumy who is doing her best to help me.

Hopefully the good folk here can you can get someone, too!

elnafinn

Dear Clare

Wecome to the forum. We are all in the same boat to a lesser or greater degree on here and so we do understand what you are going through as you can see from the replies you have received to your thread.

You will have to take a few deep breaths and start again your battle with the medics. It should not be like this, but unfortunately so often it is. We have to fight to be listened to and believed. To be sent away to get on with it, is terrible and those people should not be in that profession. How do they sleep at night?

Never let anyone tell you it is in your head. It is not. I think it is good that you wrote down how you feel and on re-reading it, fully realised exactly how bad you are feeling both mentally and physically. Say all you wrote down to the gp.

We know our own bodies more than anyone else and as has been mentioned write down facts, dates, times and go back to a gp preferably with someone who you can rely on to ask questions you may not have thought of and to remember facts you may forget at that moment and be referred to a good rheumy/pain clinic and take it from there.

Keep posting on here and we will support you all we can. You are an important person with your life ahead of you and you have had enough of being pushed from pillar to post with no help or guidance from those that are paid to help you.

Luv
Elna x