please help

[LondonKate]

Hello Mrs T, you do seem to be left to wander and wonder in the dark. Where do you live? the Isles of Scilly or the Hebrides? UK

There must be some way of getting specialist medical care, even if it's a Skype consultation?

Both the Arthritis Research UK  and Arthritiscare websites have comprehensive and authoritative information available

Here are some links - starting with an immediate need. These other people that should be involved in your care

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But first things first.... have you had a formal diagnosis of psoriatic arthritis? Do you have psoriasis?

If not do you know if you have signs of inflammation in your blood? Has the GP given your blood test? even if you don't have signs of inflammation in an elevated ESR ( an inflammation test) it does not exclude an inflammatory arthritis.

Here is more information about psoriatic arthritis

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Anti-inflammatories

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Most NSAIDs can take a little while before you feel the full benefit - it's a cumulative effect.

There's a video about drugs for arthritis generally. Here's a link - I suggest you don't try and look at the individual drugs until youre prescribed something

Being unwell, in isolation can be very distressing, especially when no one seems to be able to get to the bottom of the matter, and being on an island ent must make things so much more difficult... but I'm sure there's some help out there for you.... you do have to be strong and persist however. A PA diagnosis can sometimes take a long time but it may be something else?

Thinking of You

Kate

Please come back to us with any questions or information

[Islander]

Thanks Kate... i live in the Shetland Islands. GP guessed PA with very little p (occasionally on my scalp and tiny plaques that come and go here and there) but my hands were/are sore and...for want of a better word, deformed. Put on diclofenac, which just doesn't work, even taken every day. Referred to rheumy clinic (there's one session every 6 weeks I think but there's a lot of people need to see him, so appointments are sllloooowwww). Anyway, went to see him, it was all confirmed as PA and he said he wanted to give me a SIJ injection and that was that, he said he would discuss meds, physio, splints etc next time. Went and had the SIJ injection about 4 weeks after and he said he would see me again in 6 weeks. I'm getting worse by the day and honestly don't think I'll be able to walk in 6 weeks, so went to see GP on friday and she was very concerned but said she couldnt do anything without speaking to rheumy. So waiting to hear back... she said she would get him to either see me ASAP or get him to give her the go ahead to start me on dmards... i'm just really really struggling and because i work an hour away from my gp it's not exactly handy! nearest hospital (where we get sent in real emergencies or for stuff they can't do here) is Aberdeen Royal Infirmary, if we have a set appt th e NHS pays for travel, otherwise it's about £300 to get there and back, or £60 but you have to get a 12 hour ferry over night each way...i know they are dealing with me...but it's on their time, you know?and my body/pa just doesn't give a flying eff about their time. it's going so fast. i think i've had this since about 9/10yrs old and its progressed very slowly but just now it's gone into overdrive. all of a sudden it's like BOOM!and my husband and parents can see the changes in the shape of my fingers, they were they are going in different directions etc. it's just really scary... but I try not to moan cause my husbands mother has MND and she is a lot worse of than me... just dunno what to do really, the waiting is killing me!

Thanks for letting me get that off

[LondonKate]

Letting off steam is what we're here for! It is absolutely essential to have some sort of outlet where people understand you. Yeah, the NHS works slow even on the mainland.

But why have they set up a system of Skype consultations with you the GP, and the consultant, that would be better as an interim measure..... but an hour's travel to reach the GP ouch!

Was recently in the Scilly Isles, on St Mary's to be precise and watched the ambulance boat zooming off to the islands to bring back people to the rather limited hospital there.

There are such things as shared care agreements between GPs and rheumatologist for the treatment of inflammatory arthritis, so once you get past the initial stage, you should be fine and the GP will be able to take care of your better and liase with the consultant if necessary...I'd be very surprisedif that sort of arrangement wasn't in place in the Shetland Islands.
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Matters will get better in the end so try and relax. I know that sounds barmy but the more tense and stressed you get, the more pain you will feel, and the quicker the pain will arrive until you become totally exhausted and depressed. Are you familiar with any relaxation exercises? Anything to help you reduce your level of stress will help reduce the pain....You also need to pace yourself very carefully. Do not overdo things, in desperation to get things done and then have to rest up to recover. This boom and bust cycle doesn't help....so do what you can until the pain arrives, stop have a little rest ( I sometimes carry around a little stool, if I'm out and about). It's amazing what a little sitdown can do to release tension and pain. The technique is called pain pacing

Sounds as if your GP is on the job though so hang on in there! Thinking of you

Kate

[Islander]

tbh i know nothing! my work know and are very sympathetic, i stop work and have a walk round if i feel tense...and i go for a walk at lunch times. generally take it easy the rest of the time. try not to cook if im alone cause i cant manage pots and stuff now. husband is very helpful. waiting to get started on some meds then gonna apply for dla.my husband is a mechanic and hes gonna make a few modifications to my car to make it easier... i just want to be fixed...and i know that thats never gonna happen. some days im fine but some days i just wanna scream - why me???i know im getting there and lucky to have a great gp (finally) but, ive known something was wrong for over 10 years and the docs are only just catching on now, so while it might be just a 6 week wait for them, its just clocking up another years wait for me... omg - i ranted again!sorry

ps, we dont do the skype thing cause he's here as a different type of doc too, those are the only times for a rheumy appt. but think hes gonna squeeze me into a different clinic and see me about the pa anyway...if that makes sense?

[LondonKate]

Rant way! We've all been there....and will be again!

[Islander]

lol - feel like its all i do just now. im turning into someone i dont wanna be, crippled, unable to do anything, sad, sore, angry, moany, bitter... im tryinmg to stay positive and not let it win, but some weeks (not days) its hard...

[flower fairy]

I can certainly relate to you Mrs T when you say you'v known something was wrong for 10 years (2and half for me) and the doctors are only catching on now and think it's great to be coming up with treatments that are making me sick half the time but the reality is I have lost my business which was my only source of income and security and even if I do improve over time I cant get a loan because of a long term illness, and a break in the accounts plus as my profession is childcare I have to be certified as fit to do the job and ther's no way I could at the moment. The frustration of dealing with that thought everyday and the fact that I had to part with a couple of thousand while I was trying to save the business and get help from private hospitals here in Ireland due to the ignorance of my local hospital bugs me no end. I know people are worse off than me who have life threating illnesses but at the end of the day it gets me down cos I have no idea how I'm going to survive financially on my own and if depression hits that rules me out of childcare for ever. Somedays I hope i wake up and its all just a bad dream

[Islander]

I hear you there. I feel so lucky I got a new job about a week before I was diagnosed as I used to be in social care for children (lots of lifting and moving quickly) and I just couldnt do it the state im in now i'm with you on the money thing too, altho mine isn't cause of my pa - but we r struggling financially just now... it sucks... i had a dream that it all got sorted, money, my pa...everything. woke up this morning and just wanted to cry

[riaY]

My heart goes out to you both. Constant severe pain really does wear you down I know. I can't add much really to what's been said but I'm here if either of you need to talk, rant, cry or anything.

Mrs T apply for dla NOW not when things improve. On this front I'd also advise you to get your gp and consultant on board from the start. ask them for statements of your current condition and send these in with your claim. if you can get help with filling in the form from Citizens advice or the welfare people, whoever you have access to even if only by phone. I know it might seem like just another thing to stress about at the moment and can understand why you may want to put it off but realistically you have a much better chance of getting it now than when things are under control and also why should you miss out on weeks/months worth of the financial help you need and deserve. It's great that you OH is going to adapt the car for you but again this could go against you if it's already done when you claim as they could say that you had no problem getting about anymore. Sorry if this seems cynical but I'm afraid you do have to "box clever" some times. Good luck with everything and I do hope that you get some desperately needed and well deserved help and relief.  ria

[Islander]

Thanks for the advice Ria, I'd never thought about it like that before... the forms for DLA ask about meds etc and I'm not on any yet, that's why I was gonna wait cause it doesn't look as serious if you're not even on meds, does it? just waiting for my appt with doc so i can get started. how do i go about applying. I was gonna speak to CAB, but do i download the form and take it with me or can I just go to cab emptyhanded and say, help me?