NEW HERE AND LOOKING FOR ADVICE

devonmum

Hi, as the title says, i am looking for advice, info and maybe a shoulder to cry on if that's okay.

3 years ago i began having pain in my hips and my right would collapse when i stood up. I was referred to Orthopod in Torbay and diagnosed with F.A.I.
In 2009 it had got so bad i had Arthroscopic surgery . Over time it was getting no better and in October2010 Orthopod said i was in big trouble, that i was bone on bone and needed to go straight on the list for replacement. he also asked my GP to refer me to Rheumatology as what he saw was inflammatory and he was sure it was Psoriatic Athropy.
Had appointment with Rhemy and she confirmed it, also pustular on hand and foot and started me on sulphasalazine. Had hip done, struggled to get better, ended up with Meralgia and very swollen thigh. Was changed to another Rheumy who took me off Sulfasalazine as he said it wouldn't help me, he was'nt convinced i have PA. Ordered a scan of my feet and said if there was no inflammat
ion showing he would not medicate.

Well yesterday, my birthday, i had appointment to see him and he basically said he was not convinced i had PA and as he was not going to be treating me he was discharging me from the clinic.

I came home in tears, it seems i am just going to be left to rot, on fentanyl and oramorph. I just do not know hat to do, i am only 52, is that it? Am i just supposed to just take painkillers and stay at home? By the way i have moved from Torbay to another area so Ortho and Rheumy are in different health authorities.

Any advice would be great.

If you have got this far, thank you and well done!

Beatrix

Hi devonmum, welcome to the forum. I'm also a new member. I'm afraid I can't give you any advice as I'm new to Arthritis myself, although still waiting for a diagnoses. I'm sure you will get lots of helpful advice and support from the lovely members here. So sorry you had an awful birthday to.

Jackie xx

devonmum

Thanks Beatrix,

i have been a lurker but only joined today.


Hey at least i had chocolate cake

shay19

hi, devonmum

I'm very very sorry to hear about the trouble you have had so far. its appalling, i hope it doesn't get you down too much. I feel like i can relate to how you are feeling, as, at the early stages of my diagnosis i was told my several doctors that the pain i was describing wasnt possible and that i was a liar, i too was left to get on with it, and i felt totally lonely from the medical professionals point of views. Eventually i was diagnosed with psoriatic artiritis at the age of 18, 3 and a half years on i am now being taken very seriously by my rheumy, and they are doing everything they can to help, dont get me wrong ive had my ups and downs with them, but i just wanted to let you know, that the help is there.

hope you sort it out soon. shay x

Beatrix

Good for you devonmum Chocolate birthday cake sounds fantastic but I'm on a diet to hopefully help my knee's so have another piece for me lol

Jackie xx

dreamdaisy

Oh devonmum, I am sorry to read this. I too am 52, and fifteen years into inflammatory arthritis (only diagnosed as PA tho since the autumn of 2006 after a bout of the skin trouble on my palms and soles). We are always at the mercy of opinions, be they those of consultants, rheumatology nurses or GPs. The longer I have gone on with this malarkey the more I feel that it matters very much that you see the same person every time, so you get to know them and they get to know you. We are all different in how we are affected - the umbrella titles of RA, PA etc are just that: my PA will be different to yours and different again to others on here with that label. Right, not having helped you much I now have to go as I have to take my Ma out. I will be back later and try to answer with more relevance to your situation, I promise. DD

devonmum

Thanks Jackie and DD,

it's so good to talk to people who understand, i feel teary again :oops:

i have 2 grown up daughters but don't want to always be moaning when i see them

Karen

barbara12

Hi devonmum
How awful for you to be sent home like this, I have had this done twice with me, once with a rheumy, but by talking to the lovely people on here I have the the confidence to asked for other appointments and to see different rheumy...so dont let them put you to one side like this, you go back to your GP and try to get over how you feel, not easy I know, but dont forget we are all behind you.
Sorry and welcome to this lovely forum.

ironic

Hi Devonmum,

First of all welcome to the forum, and Hi from me.

I am not surprised that you were in tears after that appointment! How do you get on with your GP? Would they be willing to help or push for a second opinion?

I am sorry that you feel abandoned and I hope after a couple of days you will start to feel more able to begin asking questions and pushing for better treatment.

Gentle hugs,
Lv, I x

skezier

Hi Devonmum,

a welcome from me as well and glad you found the forum.

i think some of the problem now a days money..... this way for sure money comes first and well before treatment....

i agree with Ironic that maybe a second opinion would be handy. have you got a decent gp there cus they can help sort something for you as well.

its wrong they just change their minds like this. pa is hard to actually diagnose unless it makes its self obvious. mine has gone after my hands and wrists but its done some erosion so it luckily shows up on xray. i don't get much treatment for it though cus i can't get funding.....

back to money again...

just one thing, how ever abandoned you feel this lot will always be here for you and you are never alone or abandoned her.

hey belated happy birthday.... and .... you got any cake left nice to meet you. Cris x

devonmum

Thank you all for the warm welcome.

Feel less upset today but a lot more annoyed.

I am going to think over the weekend then hopefully get an appointment with my GP next week, go through what my options are.

I agree with the whole point about it being money and being in the right area.

Hope you don't mind if i keep coming back here and asking advice or opinions along the way?

Oh and yes i still have loads of cake left, did not really feel like eating too much the last couple of days, but sadly i dont think it will travel well

thanks again

Karen x

hileena111

Hi Devonmum
I'm sorry only seeing this today..,A warm welcome from me to the forum
I cant help you with diagnosis ....sorry....got OA in both hips, spine neck and ankle.
Its no wonder you were in tears being sent hom from the consultant like that

Love
Hileena

tjt6768

Hi Devonmum, welcome from me too...
Sorry that you are being treated (or not :shock:) this way. It's disgraceful.. I would ask your GP to refer you to a different rheumy for a second opinion.

I wish you well mi dear.
Keep on posting and let us know how things go.

Beatrix

Good luck Karen, I hope you can get to see your GP next week to see what your options are.

I have two grown up daughters that live with me and I try not to put my Moaning Myrtle act on too much but sometimes you can't hide your discomfort and frustration can you but my girls understand. Jackie x

frogmorton

Hi Devonmum

You poor poor girl!!

You have been treated abysmally there :sad:

Sadly though this is a common problem we are hearing at the mo. You are not the only one saying this sort of thing is happening.

Did the sulfa actually help you?? If you think it did then yo have to 'do something'

As Cris said l wonder if it is a financial issue :???:

Please stay on here and have some of our support - l know it makes you cry sometimes, but that's only because you feel 'understood' for the first time in years!!! and it's a kind of theraputic cry

Love and hugs

Toni xx

bubbadog

Hi Devonmum, and welcome to the forum, you are surrounded by people who understand what your going through and we are all a good support network for one another. You will always get a good shoulder to cry on here and a soap box to rant from. So never feel your alone. I hope you find answers to your questions soon.

traluvie

Hi Devonmom,

Welcome to the forum, i have been a way for a while so missed your post..

I was outraged to hear that they have just left you be.. how awful and no wonder you were upset, i am upset for you..

I really think as the others have suggested is that you speak to your GP and maybe get a different referral to someone else, not fair for you to be left like this..

Hope you get on ok and let us know how you are getting on..x