What sanity? update

magicdragon

Hi all!

As i say every time i come on sorry 4 not bein on 4 such along time but headache after headache, hope everyone is picking on arthur as much as he is on you? *hugs all*

Well as i said b4 i have a social worker hes been g8 thank god. OT has had a additional rail put in for me, a grab handle on the shower & a shower stool.

He arranged for a welfare rights worker 2 help me with my benefits which as things where just getting painfully desperate DLA came through from HRM & LRC to nothing, which then changed to HRM & MRC so they listened finally.

Ive had no help from my rheumy shes basically dumped me 4 six months as they have been swamped and im petrified that arthurs jumped into my 'good' hip, they couldn't care less. I really think i need 2 complain its spreading quickly

Went to the initial meeting with the psychiatrist for the pain management programme which no one said it would be a srink, he said i may be 'a little bit stubborn' i don't know what he was talking about ? :oops: but worth a try, does anyone have any experience of this? did it help?

Had nine trigger point injections into my back through the pain clinic not a good experience couldn't say if its helped yet although feel a little loser. Secretary was rude and unhelpful my hospital has changed from addmitting ppl 4 the day 2 doing it in 15 mins and u waitin 4 15 so i was a tad concerned i tried 2 ask her bout this she said she didn't no & could cancel it if i didn't want it,oh yes of course! :x seems if you question anything you don't want the treatment? :? i only learnt what they did when i got there as my consultant is really nice, shame bout his secertary.

I really dont know what 2 do pain worsening and with the fabulous propaganda lumping genuine disabled ppl in with the fraudsters and the amount of ignorant ppl believing everything the papers print as gospel and being walked through,pushed shoved and ignored I feel more invisible with every passing day and hated at the same time.

One plus I have is I finally passed my Zoology degree with honours although not to the level i could have if arthur hadn't been bouncing around hopefully going to do a masters at the OU (brick unis to much now)

Sorry if i seem all over the place

Many thanks and hugs

Magicdragon

julie47

Hi magicdragon

First of all congratulations on your university degree and good luck with the ou masters.

Sorry you are having such a bad time and hope soon that the injections you had start to kick in properly soon.

Sorry this hasnt been much help but I send you hugs (((())))
and hope that you get seen by a doctor or rhummy person soon.

Take care
Juliepf x

skezier

Hi Magic dragon,

Good to see you again but sorry your going through it all just now.

Hey well done on your degree and hope the next bit does well for you too.

Lumping everyone together is never good but at least they have got it right for you in the end? I hope things will soon get easier and leaving you a ((())) and a hope. Keep in touch eh? Cris x

speedalong

Hi Magicdragon, congrats on your degree - well done.

Secretary sounds a right *!*!*!

Hope you continue to feel the benefits of the trigger point jabs, especially once you feel less sore from the actual jabbing.

Is it possible to be referred to another rheumy clinic? Is there more than one hospital near enough? Could your GP intervene?

Speedy

dorcas

Hi magicdragon
congrats on your Degree ... fantastic :!:

I agree with speedy.... ask to be referred to a different rheummy. Others have done so and benefited hugely from being seen by a consultant who is truly interested in their patients. :!:

I've no experience of being referred to a pain clinic or in trigger point injections... but have read of others here who have had a lot of relief from having them. I shall keep my fingers crossed that you soon begin to feel the benefit of those jabs.

keep in touch magicdragon!

Iris xx

dorcas

Hi magicdragon
congrats on your Degree ... fantastic :!:

I agree with speedy.... ask to be referred to a different rheummy. Others have done so and benefited hugely from being seen by a consultant who is truly interested in their patients. :!:

I've no experience of being referred to a pain clinic or in trigger point injections... but have read of others here who have had a lot of relief from having them. I shall keep my fingers crossed that you soon begin to feel the benefit of those jabs.

keep in touch magicdragon!

Iris xx

magicdragon

Sorry 4 the delay & thanks alot 4 everyone's posts, really appreciated it.

Do you think i should say 2 my rheumy that i dont think its working & i want and both need better treatment (although i have already said this on many occasions) or just ask for a second opinion ? there is another hospital that covers my area im in the catchment for both & how would i go about doing that?

Would really like some advice as if u complain 2 my hospital they just threaten 2 cancel ur app as u obviously dont want it in there opinion! :x

psyart

Hi magicdragon

well done on your degree - i know what you mean about how 'arthur' can hinder things - I am in the 2nd year of my Fd and went from C+ to D- last year

if you go back to your doctor and say you are not happy with the treatment you are getting and feel that they are not listening to you then they can transfer you to another hospital :!: surely its worth a try :?: What is you doctor like - do they listen :?:

take care and keep in touch :!:

Louise xx

skezier

Hi magic dragon,

I think you can mention it..... Its better they know flower.

I have a very nice rumo and Loise will back me up here we don't get the chance to transfer cus there isn't another hospital to go to in the Dutchy and there is problems getting funding to go to Devon.... He is nice, he is kind and he has helped the circulation big time but the bones have been out of control from the beginning.....

I did say to him its not working and we upped the does and so far its not working but its hard to to say too much especially cus mine is so nice...... Its a bit of a problem isn;t it?

I hope you can get some help flower and honestly think if a chat to your gp might be helpful? Hang in there flower. Cris x

frogmorton

Hi Magicdragon

Well done you!!!! amazing stuff getting honours degree!! I am totally impressed.

Sounds a bit of a worry if the arthritis is in the other hip, good though that your consultant is nice. That helps 6 months will hopefully go by quicker - I expect you wont ring for an earlier appt if the sec is so scary?

As for seeing a psych - i would go for it - anthing is worth a try and it might just help. After all it is just a title and then you prove yourself not stubboprn, but co-operative

Good to see you

Love

Toni xx

magicdragon

Thanks 4 the reply s everyone & the congrats.

Psyart - my arthritis has severely gone down hill since startin uni, havin 2 travel in became the worst prob followed by sittin in lecture halls even though they had put support in2 place. I should have got higher but being in constant pain isn't helpful & gettin really sick from mexo made everything alot harder... instead of 6 months for dissertation i did it in 2. So my full support 2 u *hugs*

Problem is my gp & pain consultant both think that the rheumy isn't doing what she should b but they don't want 2 tread on her toes.... dermatologist did but that's cos he was worried 4 my life (nice guy)

i was seen by the registrar b4 she was lovely but i think she left & now i see the consultant who i have little confidence in as when summing up my notes she said "oh its only in ur left knee" i had 2 stop her & say no it was in both which gave me little confidence since then. In addition I have pain and weakness in my back, wrists and ankles. Then six months of her doing nothing it spread 2 my left hip which I was then told " I should take comfort in the fact it isnt active?!"

now im getting extreme pain in my other hip the same as b4 they said it was in the left, oh & they didnt tell me that it had gone 2 my hip i found out at my gps. Ive told her on many occassions that im struggling and i told her that my finger has become deformend 2 which she said " ok il see u in six months". So no i dont think she listens and the thing is im only 25 and im just so worried about the rate this seems to be spreading at that i need to try and do something. So i think i need 2 make a appointment with her asap?

Thanks all

magicdragon

Oh also anything with the possibility of being muscular along side the arthritis they dont seem to want to touch with a barge pole as my pain consultant thinks the back, wrists and ankles are to do at least in part with muscular problems.... has anyone had the same experience?