Feeling I am going insane

prayerman1973

I'm sorry to come here and moan but I have no other place I can.

I have, over the course of 10 years, been in and out of GP surgeries that it feels like I have my braces caught in the door . Each time I go to the Dr's I have pains in feet, hands, neck or back and I am told take pain killers. I go back and am told to take warm baths. I go back and am told to take things easy. I go back and am signed off work. I go back and am sent for blood test, results show high white cells, a sign of infection etc. told to rest and take pain killers.

Over the years of being told that things are in my head have paid a large toll on me that I choose not to visit the Dr's now even for severe chest infections, because I don't want to hear I'm imagining it AGAIN.

I had severe lower back problems in Dec, but I refused to visit GP, it took 2 weeks before I could walk properly again.
In March 2009 I had another episode with the back and was bullied by the wife to get to the GP so I went and was sent for lower x-raY Which showed narrowing of L4-L5 which the GP said could be because of Arthritis but I need not worry.
My wife was very angry and told me to get a second opinion which when the GP saw me immediately asked about RA in my family and said she thinks, 95%, that I have RA. She referred me to a Rheumatologist, 2nd July.
I was sent for blood test on Friday 12 June and when the GP saw my hands she said "I was only a little sure but now I'm almost positive you have RA" and prescribed me 75mg Diclofenac twice daily, it is not doing much.

I just want the blood to show that it is RA because it finally feels like we're getting somewhere and to hear that the bloods show nothing thus meaning I am imaginaing pains, swellings etc. will just leave me wondering what on earth is my problem, am I going mad?

Sorry to moan

I hope you're having a pain free day

Alan

frogmorton

Alan
You are NOT going mad.
Sounds as though you have been well-fobbed off over a very long time.
Take your wife with you - she sounds assertive! That's what you need.
I undertsand what you mean about a postive test result. YOu will feel vindicated! You might also feel angry about wasted time and greive for the loss of your health.
Though I must say even with RA people sometimes get neg test results. If this is you - agood Rheumy will still start you on DMARDs as they look at clinical signs too.
Now you and your wife should take a bit of time to write the history down (breifly) ready and to note any other symptoms like a temperature and severe tiredness. Then you should note how this effects your life e.g. work/driving.
Alan never feel bad about moaning to us we all do it and it IS one of the things we are all here for
You take care
Toni x

woodbon

HELLO Glad you're going to see the rheummy. When you get your medication sorted out you'll feel a lot better. I do understand what you mean though. Its hard when you feel ill but nobody puts a label on it. Good luck. Love Sue

debatat

I think we have all felt like you prior to diagnosis. Stick with it though and you will get answers. Hope your next docs appt goes well, and as the others have said take your wife with you.

Take care

Deb

vonski

Hi Alan

Glad you came here to moan, you've been put through so much over the years. Hope the Rheumy appointment goes well and you get sorted out at last. That would be good news

Chin up

Love
Vonski x

joyful164

Like others, I have been down this road until finally I got a diagnosis. Lost count of the number of reasons for the pains. Anyway, as advised do take the OH with you. Two heads are better than one and she does live with you I take it. Who better to know what you are going through.

Hope your apointment with Rheumy goes well and you get your medication right. You have to remember though, that it can take up to 2 months for some medication to start working. Everyone is different.

Good luck

joyful

suziev

oh alan

i've so been there and have the t-shirt, there is nothing worse then feeling like your going mad. it took me just 3 yeas to find out whats wrong and i thought that was long enough!
hang on in there, the wait is nearly over
suzie x

page35

Hi alan
just wanted to say good luck with rhumy hope you finally get some real answers. it took nearly a year for me and doc told me to get new shoes, have a rest and so on, felt like i was going mad too but youve had it 10 times longer so no wonder you feel like this.
Take care
Page

valval

hi we all been through it with some docs wear and tear stiff mussels u name it they say it glad u found good one stick to that one in future we all come on to have a good moan keeps us all sane hope u get meds that help and moan whenever u want just take care

elnafinn

Hi Alan

So sorry to hear what you have been through all these years. You know your body more than anyone else and to be told by a gp it is all in your mind, like others on here have been told similar, is beyond belief. A gp is not expected to know everything but if they are in doubt, which they must be to say that, they should refer you to someone else.

As I understand it you can have RA without the blood tests coming back positive and vice versa. You cannot purely go on the result of a blood test.

I wish you all the best at your rheumi appointment. Don't get fobbed off any more by the medics. You know you are not well and please don't let anyone tell you otherwise. You most definitely are not mad.

Out of interest is there anyone in your family with any type of arthritis? This is a question that gp's ask so that was a big oversight by the gp you saw all those years ago. It does not necessarily follow that it is hereditory - it has to start somewhere but that question should have been asked of you before now.

Please let us know how you get on.

Chin up,
Elna

sarahbenn

hi there, sorry to hear your having such a bad time getting a proper diagnosis seems like most of us have had the same ordeal, I too suffered for quite a while before I found out i had RA, I'd been to the GPS loads of times with pains in my hands and fingers but all bloods tests came back with nothing showing thought i was imagining the pain until one boxing day I'd had enough sat on my living room floor and couldn't get back up so I took myself off to A&E who referred me to a specialist it was only then a few weeks later after chatting to a rheumy nurse she said in the conversation "how longs the RA been active??" Ra didn't even know i had it or what it was :shock: still learning now about it tbh, this is a good place to ask any questions or get any advice you may need as were all in the same boat, so if you need a moan go ahead we all have to sometime or most time in our case
take care hope its soon sorted then you can get the meds you need and get your life back on track

sarah

suncatcher

Hi Alan i was fobbed off at first. Take your wife with you she is your witness and if no joy then get second opinion.
It is not in your mind and i and many others have experianced the same rubbish off our gps. keep strong dont let them beat you . I hope you get some answers soon joanne

prayerman1973

Hi,
Thank you all so much for your encouraging words. I will certainly take my wife with me to the appointment.

Elna, Arthritis is big in the family, especially the women on my mothers side, Grandmother had it, mother had RA, her niece has Arthritis, 2 of my sisters are being investigated for OA and I believe my grandmother on fathers side had it too.

I have started making a diary of how I feel on certain days with the pain, fevers and fatigue along with feelings in the affected joints.

Once again I thank you for your supportive words

Alan

elnafinn

Hi Alan

You could also take photos with you to your appointment as proof, if you get swelling in the hands, knees etc because quite often you can guarantee on the day you see someone in the medical profession the swelling/puffiness has disappeared.

Excellent idea, writing a diary.

Quite a history of arthritis in the family then ......

Good to hear that you will have support when you go to your appointment and remember none of this is "all in your imagination" . You can hold your head up high at all your appointments (if you have not got pains in your neck :roll:) it is the medical profession that have done you an injustice until now with their attitude to your unwellness.

I sincerely hope you are finally getting the help you deserve and wish you and your wife well.

All the best,
Elna

airwave

Yep, we've heard all the 'diagnosis's' that the doctors can think of and we still need help, so what do we do? Well, the practice and me are in a Mexican stand-off at the present, they don't want me in there and I don't want to be there.

I ended up with the practice nurse a couple of months ago and she has referred me to the rheumy, mmmmm! Been waiting years for this, I'm wondering whats going to happen.......... Watch this space

It does seem that we represent a conundrum to the medical profession, they can't give an accurate diagnosis, they won't refer (spend some money) without a solid idea of whats wrong and their guess at medication can be wide of the mark, so we bounce around the system for a few years, slowly deteriorating.
8) Its a grin, honest!

suzster

we all know how you feel, sadly!
i have RA and it took nearly a year of gp visits, various painkillers, me crying and getting angry, but eventually you will get answers i'm sure.
it is upsetting and it makes you angry, i know myself that being told it's in your head is the worst thing, i came away from a painclinic, before the RA actually started, when i was having terrible pain in my hip, it had been resurfaced but i was still in so much pain, the dr in the painclinic told me that the pain may seem real but it is in your head, i needed to learn to turn off the pain, yer right!!!
still i did get sorted eventually!
take care and sorry to moan to, but i wanted you to know there is light at the end of the tunnel!
sue

mrsdalloway

Hi Alan unfortunately you are in a very big boat as we have all been where you are! It never ceases to make me angry when we have to fight for basic care and treatment. For the sake of a simple blood test and assessment they could have saved you months of anguish. I think we should stop being so stoic and start stamping our feet a bit more (well only symbolically because it would really hurt! but you know what I mean) Hope things get easier soon!

livinglegend

prayerman1973 wrote:

I just want the blood to show that it is RA because it finally feels like we're getting somewhere and to hear that the bloods show nothing thus meaning I am imaginaing pains, swellings etc. will just leave me wondering what on earth is my problem, am I going mad?

Alan

Can I suggest that you read the online leaflet by clicking on this link: (Link removed as it no longer works, suggest a look through Publications at top of page.). which comments that 'About one third of people have the symptoms of RA where the rheumatoid factor is absent.'

Have a read and it may help.

Joseph 8)

frogmorton

Hi
Hope you are feeling better today.
Keep talking - it helps.
Don't forget to let us know how things go for you
Toni x