Feeling frustrated.

barberella

I just wanted to quickly update about my appointment on Wednesday. Unfortunately after 6 months of pain and 3 months of waiting for an appointment with perhaps some answers, I have now realised it's not that simple. The rheumy asked if I had swelling, rashes or ulcers. As I have none of these he basically dismissed me and said he would see me in a years time. I was really shocked,as I thought he might at least investigate as to what is causing me all this pain. There is obviously something happening to my body, but what I don't know???
He did take bloods but nothing showed up last time, so I'm not expecting any answers from those.
I came out feeling frustrated and as though it's all in my head. I know it's not but what to do now, I just don't know???

Thanks for listening to my rant, it does make you feel better getting it all out.

Jo x

vonski

Hi Jo

That's horrible, a year seems an awful long time to have to wait Try your GP again and see if you can get a second opinion. Hope you get things moving quicker soon.

Love
Vonski x

elnafinn

Hi Jo

That is not on. Report back to your gp about the non-appointment you had and being dismissed for one year.

I would also get in touch with PALS - you can find info on the net or ask your local hospital/surgery for the local phone number.

Please do not sit back and do nothing. That rheumatologist should not be allowed to work in that hospital or anywhere else.

Good luck,

Luv
Elna x

barberella

Thanks ladies, I thought 1 year was a bit of a wait tbh. He did say if I have another flare I can go straight back to him, within the year but still!!! I should never have gone on my own really, as I always feel intimidated in situations like that and don't speak up. I will definitely take my husband with me next time. Jo

woodbon

That sounds as if you've had a really depressing time, all that waiting and then just sent off. Have you had any blood tests or xrays?

Do you have a good GP or doctor in the practice that you can talk to? If so, I'd go and discuss things with them, it nothing else they may be able to answer some of your questions.

My GP has really helped me with all the hospital appointments and referring me to specialists, but its not been straightforward.

Hope you can find the help you need. Love Sue

elnafinn

barberella wrote:

Thanks ladies, I thought 1 year was a bit of a wait tbh. He did say if I have another flare I can go straight back to him, within the year but still!!! I should never have gone on my own really, as I always feel intimidated in situations like that and don't speak up. I will definitely take my husband with me next time. Jo

Hi Jo

I definitely think that you should take someone with you to your next appointment, which I hope, you are going to arrange for the near future, either with the "waste of time" rheumy but preferably another one.

Takecare
Elna

magenta

barberella wrote:

I just wanted to quickly update about my appointment on Wednesday. Unfortunately after 6 months of pain and 3 months of waiting for an appointment with perhaps some answers, I have now realised it's not that simple. The rheumy asked if I had swelling, rashes or ulcers. As I have none of these he basically dismissed me and said he would see me in a years time. I was really shocked,as I thought he might at least investigate as to what is causing me all this pain. There is obviously something happening to my body, but what I don't know???
He did take bloods but nothing showed up last time, so I'm not expecting any answers from those.
I came out feeling frustrated and as though it's all in my head. I know it's not but what to do now, I just don't know???

Thanks for listening to my rant, it does make you feel better getting it all out.

Jo x

Hi Jo,
I'm frustrated for you! Your story sounds so familiar I would get your GP to refer you to another hospital.
I'm in the very same situation as you, I just wanted you to know that you're not alone. I know there's something going on with my body but the dr's don't :? You can PM me anytime if you want to talk about things. Take care,
Magenta x

colinone

Hi barberella
On Wednesday 8th April we are going to try and set a new record for most people being online at the same time on this site. I think the time is set for 6pm if you can join us please let BADGER know. If you cant locate him have a look on CHIT CHAT FORUM under are we going to break the record. We need your help to do this so please join us.
Colin

averyniceman

barberella wrote:

I just wanted to quickly update about my appointment on Wednesday. Unfortunately after 6 months of pain and 3 months of waiting for an appointment with perhaps some answers, I have now realised it's not that simple. The rheumy asked if I had swelling, rashes or ulcers. As I have none of these he basically dismissed me and said he would see me in a years time. I was really shocked,as I thought he might at least investigate as to what is causing me all this pain. There is obviously something happening to my body, but what I don't know???
He did take bloods but nothing showed up last time, so I'm not expecting any answers from those.
I came out feeling frustrated and as though it's all in my head. I know it's not but what to do now, I just don't know???

Thanks for listening to my rant, it does make you feel better getting it all out.

Jo x

I have joint pain with no swelling, rashes or ulcers too. But fortunately I have been taken seriously by the rheumatologist -- even though he is unable to make a diagnosis. He wants to see me every two months -- sooner if the symptoms change.

Though I think that the truth is that there isn't much they can do for this type of arthralgia, other than help you control the pain (and your GP can prescribe pain control.)

Maybe he's thinking that there's no point in seeing you sooner because he can't really do much to help.

Knowledge is power in this game, I think.

Google "CCP antibody" and "arthralgia" and you'll see that it's real imprtant that you have a CCP antibody test done, I think. At least have the discussion with one of the medics -- if they've not ordered one for you then they should explain why.

And it's good that he hasn't discharged you -- if swelling does develop you should be seen quickly.

Best of luck and keep in touch about how things go!

frogmorton

Hi Barbarella,
You must be feeling totally let down.
Thi was my 2nd worst scenario when I first went. The worst was that I would be discharged altogether.
I think that there veryniceman is right it it SO difficult toi get a diagnosis if nothing shows in bloods.
Howevere I have a friend (in real life) who had neg bloods at gp and pos at rheumy so you never know.
Also - next time you get a flare you will get down there and someone will see it.
In the meantime please do as the veryniceman says and get pain releif from your GP
Take care
We're still here
Toni x

sharmaine

Sorry to hear that your visit to the rheumy was so frustrating. I always come back frustrated with my doctor who seems to only want to ply me with more drugs to take for pain. Even more so as she hasn't yet referred me to a specialist. We rely on these people to allay our fears and help us. A years time is a long stretch. I was always told if you have pain for more than 3 days then something is wrong. What greater sign than pain to acknowledge this? Don't leave it a year ask for another appointment.
Take care.
Sharmaine

barberella wrote:

I just wanted to quickly update about my appointment on Wednesday. Unfortunately after 6 months of pain and 3 months of waiting for an appointment with perhaps some answers, I have now realised it's not that simple. The rheumy asked if I had swelling, rashes or ulcers. As I have none of these he basically dismissed me and said he would see me in a years time. I was really shocked,as I thought he might at least investigate as to what is causing me all this pain. There is obviously something happening to my body, but what I don't know???
He did take bloods but nothing showed up last time, so I'm not expecting any answers from those.
I came out feeling frustrated and as though it's all in my head. I know it's not but what to do now, I just don't know???

Thanks for listening to my rant, it does make you feel better getting it all out.

Jo x

suncatcher

hi just read your post and just wanted to say how discusted i was at reading how you rhoumy has treated you. :shock: :shock: :x :x
I would tell the gp and insist you get seen again.
A year is too long and if you are new to the disease ,it is a very worrying time as it is with out haveing all this on top. I hope this gets sorted for you. from joanne

collettem

I would request a second opinion. I was referred two years ago and at the time explained my back pain and hip pain. X rays were taken of my back and as the reel of film was rolled two tightly the base of the spine which is where the pain was could not be seen. My hip pain was ignored ( I am no two weeks post op from a hip replacement at 35). I got referred to another doc in December who was excellent, so it is important to keep pressing to get an answer I know I spent 4-5 years banging my head of a brick wall and my doctors thought it was all in my head. So do keep trying you know your body better than the doctors.

Good luck

airwave

barberella wrote:

I just wanted to quickly update about my appointment on Wednesday. Unfortunately after 6 months of pain and 3 months of waiting for an appointment with perhaps some answers, I have now realised it's not that simple. The rheumy asked if I had swelling, rashes or ulcers. As I have none of these he basically dismissed me and said he would see me in a years time. I was really shocked,as I thought he might at least investigate as to what is causing me all this pain. There is obviously something happening to my body, but what I don't know???
He did take bloods but nothing showed up last time, so I'm not expecting any answers from those.
I came out feeling frustrated and as though it's all in my head. I know it's not but what to do now, I just don't know???

Thanks for listening to my rant, it does make you feel better getting it all out.

Jo x

Hi Jo,
Your (and mine) rant is OK, it may be a slightly hotheaded reaction to a professionals lack of caring/understanding/lack of time but then we aren't professionals. I've been asking what my rash is for ages, non of my gp's know. My own doctors have 'lost' two blood test results for the consultant aaggggghhhhhh...... (take a deep breath) so we will have to go through this all again, I'm always waiting for something!

Take care

8) Its a grin, honest!