Demented with all this and lack of care :(

niecsey

Hi sorry about the subject title but l am getting really frustrated. I will try to make this brief if l can and apologise before l start. I was diagnosed with bloody fibromyalgia and early wear and tear to spine along with straightening of lower spine and both shoulders a few years back... the bloody fibromyalgia l find has been a curse cos everything l suffer from gets blammed on to that! I havnt had much help at all other than pain killers which l only use nsaids when l really must. My symptoms are getting worse and my quality of life is poor to say the least. I do try to get on and the simplest of tasks i.e l polished my room and ended up in agony the next day!! I have lots of mid spine pain which refers to my chest and sternum, collar bones etc that can come about from sitting, reaching, using my arms and even the way l lay! I cannot lie on my back as this causes chest and rib pain nor lie on my stomach cos that causes back pain! I have pain in my sacrilum area and some mornings this wakes me up early and l cannot move at all and wake myself up groaning and my hubby. My fingers are very swollen and now l have pain in the bones runnign either side of my outer hands by the wrist area and also mid wrist upper hand right in the centre, l also get pains in my finger joints and lately above both knees mainly left knee. I also suffer severe night sweats which are getting worse lve been having these for years. I am on hrt as l had a hysterectomy nearly a year ago due to fibromyalgia YES all the symptoms l went to doc for for years was blammed on to fibro when all along l had endometriosis a 4 inch cyst lots of pelvic adhesions and small fibroids! I am reluctant to go to gp as l feel they dont take me seriosuly even after the hysterectomy fiasco and they tell me to exercise and take the pain meds l am getting nowhere very fast! EXERCISE HA! l do try l have books on back probs fibro etc etc leaflets of you and lve accepted l have fibro my consiton is getting worse what do l do? Im even googling cos l am that desperate lookign for someone even if l have to pay to get some help with diagnosis or blood tests whatever... lt took me 3 years to even get an xray a few years ago! 2 years to see a rheumy a few years ago what do l have to do? Sorry lve ranted to you surely l cant be alone left like this?

niecsey

Hi again feel l have to add l had graves disease and had a thyroidectomy in 07. In Nov last year my chest pains got worse and l had a rest and stress test scan done over xmas still waiting results for that. The cold causes my chest pains to get worse from trying to keep warm? Only this said day l had additonal pain stabbing in sternum not been able to take a proper breath as well as wise spread pain across top of chest up both sides of my neck. Im also experiencing pain in right side of neck near the bottom at the side feels like abolt been tightened really hurts when it happens sorry to moan on x

elnafinn

Hi niecsey

I am sorry I cannot help you but I wanted to reply because you must be feeling so neglected by the medical profession and it must be so annoying that any symptoms are immediately, according to them, associated/linked with your fibro.

We do have two things in common and that is the hysterectomy and a thyroid operation. I had a nodular goitre op when I was 16 and I am 60 now and so, like you, have to take thyroxine for the rest of my life.

Who will have the result of your test in November? It seems strange that you have not been notified orbeen given an appointment slot. Sometimes we do have to push so much to get noticed and obtain the attention we require. When one is unwell it is not so easy to keep on at the medics etc is it? That is one of the last things we often feel like doing.

The helplines do sometimes look in over the weekend but if not, they will be back on Monday. You could also phone them, on Monday, number at top of the screen. This may be easier for you, to fully explain your situation, as it would be one to one. Many people have been helped greatly by picking up the phone and talking to one of the dedicated helplines team.

You are not alone with all this and so although I cannot help I wanted you to know this.

Look after yourself,
Luv
Elna x

[Deleted User]

Hello niecsey I'm sorry you've not been able to get the treatment you need.

The helpline team are closed on the weekend but one of them will be looking in over the weekend and will repsond to your post.

Moderator Z

niecsey

Thank you so much both of you x Nice to know some one is listening x My heart tests were in the xmas week and lve since found out it takes six weeks for the film to come back and your consultant etc to see it 6 weeks is mid next week lm guessing if something bad was spotted l would of been informed by now or not in my case! I am having a very frustrated kind of day lve even ignored my pain and scrubbed the bathroom... hoovered... which l rarely do as it sets chest pain of big style to get rid of some frustration. I am not lazy or weak and l hate been like this there seldom any let up my confidence is shot to bits through frustration and fighting a loosing battle. I dont want special treatment l just want listened to and believed. Im sure they think the pain you have is is little twinges they want to try it. Sorry for ranting girls . I do feel neglected big time. I rang the helpline once when l got results of xray and dexa scan cos noone seemed bothered with the results and l didnt know what they meant. I thought when they said early wear and tear it must be nothing depsite all the pain

niecsey

sorry had to continue with new reply page was rolling... l was told that early wear and tear does not mean the start of nor does it tell you how much damage/pain there is. Ive even googled how to got behind docs back and see someone else but l keep hitting brick wall saying your gp must refer you! I hate goign to docs now cos l come away feeling lve got nothing from it! Ive seen over the years all the gps in my practise they just look at the screen and see fibro and thats it grrrrr MY PROBLEMS PHYSICAL I KNOW IT IS I KNOW MY BODY... I wish l was a gobby cow lol will stop now cos lm going on and on Thanks for been here x I hope your having a painfree day if you get them xxx

elnafinn

Hi niecsey

I know what you mean about the page rolling - drives me insane (even more insane lol) sometimes. I think you should call your consultant's secretary on Monday and ask what is going on. I do not want you to be forgotten as does sometimes happen. You should be told either way what is going on so that you are in the know. That is what I would do anyway.

Although it is not in our nature sometimes we do have to get a little "bolshy" with these medics. I bet you do hate going to the gp if you have been through them all and they give you the same old story. As you say, you know your own body more than anyone - it is just conveying that over to them isn't it? Could you perhaps take someone with you if you make a gp appointment and they can jump in, so to speak, if you feel unable to, when you are "fobbed" off with the same repy ie it is your fibro.

Good for you for getting on with things today but I hope you don't overdo it and suffer more tomorrow. :roll: We tend to do this, don't we? I know I cannot help you and I wish I could, but at least a problem shared makes a little bit of difference, doesn't it?

Luv
Elna x

niecsey

Elna you are helping thank you Im not even under a rheumy! I seen one 2 years ago thats when l had my xrays done and it was left at that! I only got to see this rheumy after a doomed visit at a different hospital 2 years before that who did no xrays or anything he was a non believer in fibro for a kick off and told me so... and his answer to everything was anti depressants which l told him l wasnt happy about in end l DID take them and they made me ill they were stopped. And it was after a really paiful time a few years later l told the doc another locum tut l really really needed to see someone which was when l seen the rheumy who did order xrays etc. Now l do know ya cant cure fibro and athritis but boy is this my life now? Ive just turned 45 and lve been like this for years fgs! and getting worse! Ive tried a few different meds and because l am sensitive to alot of what they have giving me which is tramadol which caused throat spasms, diclofenac l take only when desperate as they iritate my gut paracetmol l take regular the odd codeine and alot of heat lve had a few physio sessions which made me worse l paid to see a chiropractor before l knew what the xrays results were which also made things alot worse and locum gps who order the basic of blood tests and lab ranges rule the world!! The blood test has the final say!!! what am l to do? Has anyone here sought help else where even if theyve had to pay for it? And ld rather do this without my gp knowing until l KNOW what is really wrong with me?? Im having a right rant arnt l? lol sorry suppose its getting it off my chest... lve been threatening myself to go to docs all week but 3/5 days l havnt been able to get washed before 3 till pain subsided mad isnt it when you cant go cos your too bad!! Will see what next week brings

niecsey

Page rolling again lol. Elna what type of arthur do you have? You managed well? x

elnafinn

niecsey wrote:

Page rolling again lol. Elna what type of arthur do you have? You managed well? x

Hi niecsey

I have oa and have had both knees replaced in the last two years which went well so that has helped me a great deal. I have oa in my thumbs - I have been told that they are as deformed as they are likely to get and do not give me so much jip as they used to do. I can manage. I had some injections in my lower back at the pain clinic 14 months ago which got rid of sciatica I had for about one year. I am saying this with fingers crossed lol. I have lower back pain if I don't watch it! A few other things thrown in for good measure as well. Nothing like you are contending with and I am very sorry to hear it. By the way, you are a spring chicken compared with me I was 60 at the end of December.

Luv
Elna x

elnafinn

Hi niecsey

I can understand that it can take you time to get going in the day. Don't bother about getting washed before you go to see the gp! Don't suppose anyone will notice, only you will know and what if they do! If you are unwell that is the last thing you are thinking about! I would suggest, if you can, to go and see one of those GPs and ask to be referred to a rheumi. Why shouldn't he refer you? You could say that you will go private and I bet he refers you then. But you should not have to do that. When you take the diclo has your gp prescribed a stomach protector to go with them? You take the stomach protector on an empty stomach and take the diclo half an hour or so after that. There are other anti inflams if diclo does not agree with you. I was given Lansaprazole - think it was spelt like that - which is a stomach protector. I have been given cocodamol for pain, the strength that only the gp can prescribe. Has that med been suggested to you?

There is no harm in having a rant, my lovely, it is good to get it out of the system. Having a good rant can make you feel a little better then and you can go on to use your energy for something else.

Bye for now,
Luv
Elna x

niecsey

Thanks Elna LOL l dont know about spring chicken more like a frozen old one LOL hahahahaha aww bless ya hun with all you have going on too!! My bloody shoulders are going mad been on here too long today with me venting looks like its heat pad and tv tonight! Ive thought about threatening with the private rheumy but doesnt the gp have to refer ya even if you want to see one privately? Want to be sure l dont look daft too lol. I could afford a consultation but l couldnt afford treatment!!! lol. I remember about a year ago when l went she looked through notes and said the rheumy doesnt need to see you again! When l went down in agony... Oh l feel like lm in limbo land right going to try have a bath after me cleaning frenzy lol thanks Elna take care xxx ps yea l have had lansoprazole for stomach l dont rate them much yuck x

dreamdaisy

You have been going through the mill, haven't you? I think you said at the top of this that it was 'wear and tear' arthritis, that to me says OA and there is nothing that a rheumatologist can do to help that - they 'specialise' in the auto-immune variations of arthritis (the forms where the body attacks itself) but cannot assist with the other form. It is true, as you have rightly said, that there is no cure for any form of arthritis, though anti-inflammatories and pain dullers do help to alleviate the worst of the symptoms.

I learned from the forum that fibro often goes hand-in-hand with OA and RA (there are quite a few threads about fibro on at the moment on LWA) and yes, the only things that seem to be 'prescribed' for it are rest, exercise and pain dullers. It seems astonishing that in this day and age that that is all there is, but unfortunately that is the case. I think you are right, all your problems are linked/allied by the docs to the fibro and no-one is looking at you as a whole - it can be very difficult to get doctors etc to sit up and take notice, I found this when my arthritis started in '97, it wasn't until 2002 I was eventually seen by an empathetic rheumatologist (having been dismissed by an un-empathetic one the previous year). It can take a while to find the right person to help, all you can do is keep looking. (It was eventually determined that I have PA (psoriatic arthritis), which is an immune-system based one, hence my seeing a rheumatologist.)

Arthritis and its related conditions is a minefield of raised and dashed hopes, pills that help and pills that don't, tiredness and stress: the only thing that one can count on with it all is that life does become a battle, and it's one that all of us on here fight every day. I wish you well in your fight, and I hope that you can soon find someone who can support you better than you have been so far. DD

caterina57

Hi neicey
I too suffer with my back spondylosis? O/A I have had a physio assessment this week and was told that physio cannot help and that I haveto self manage (I could have told them that, I had physio 4 years ago and it was no help at all) The Physio was surprised that having looked at the Xray I was mobile at all LOL. She is though referring me for hydrotherapy which will not cure but will probably assist in relaxing muscles.

I have suffered for 20 years but now at 54 the OA is creeping round my body, My hands, thumbs, wrist, knees and hips. As DD often tells us the painkillers dull the pain for a while and yes I do take Lanzoprazole as well. I am learning to be at one with my body- there is no cure although a joint or two may be replaced in the long term - I have got to learn how to self manage - What have I learned in the past 8 weeks whilst off work sick? I have learned that my body needs both rest and excercise, if I sit for too long I am stiff and sore, If I do too much I am in agony.

I dont sleep too well mainly because I find it difficult to get comfortable with pain in my neck - If i need an afternoon nap I have one - If I dont feel up to getting washed and dressed then I dont. This is all possible because I am off sick at the moment ----I really do not know what will happen when I have to go back to work - It will be another challenge to face and "manage"

Go back to your GP ask what the outcomes of the tests that you have had are, ask if there are any more tests that you need. I feel that you may be particularly stressed waiting for your heart test results. Ring on Monday and ask when they will be ready, You may feel more calm once you have those results.

In the meantime take care and try not to get too stressed you will find ways to manage - we all do and on the days you dont you can rant on here

Cath

niecsey

Thanks girls for your thoughtful replies x Well my eye has kicked off now... went to out of hours last week as my eye was pure blood red with clotty looking lumps in it... l did/do have graves eye disease but had a thyroiudectomy nearly 4 years ago and was told my eyes wouldnt get any worse... last time this happened was when l was first diagnosed in 04... well it was settling down blood had gone and it was yellow and lve just noticed lve got like abloody blister spot forming lm sure its connected. Out of hours doc last week didnt know what had caused it l looked like bride of dracula lol. I do exercise when l want too and l always suffer for it l can ride my exercise bike but cannot hold on using my arms gives me chest and back pain and the chest pain l can do without! Im not stressed about the heart thing cos surely if anything had been spotted l would of heard by now? Anyone else had the myocardial perfusion scan test done? These flare ups have been happening along time now and they have nothing to do with waiting for results l know! Im defo coming back as a man next time lol Thanks again ladies xxxx

elnafinn

lol It is me again, Elna

I know that you do not normally see a rheumi if you have OA but if you have fibro then I am pretty sure that this is a good idea. Unfortunately you do need a referral from a gp on the NHS or private or that is my understanding of it. Why not go and try to be a little forceful that you wish to be referred to a rheumi as you are in so much pain and have not had a rheumi appointment for such a long time. There is no harm in asking, is there?

I do hope that you feel a little better about things now that you have had some replies. We cannot wave a magic want, oh we wish we could, but remember, you are not alone with all this, on the AC forum.

Luv
Elna x

traluvie

Hi,

Sorry i am a bit late reading this post..
I am so sorry to hear how things are for you at the moment..
I too have been let down by the medics.. took 5 yrs to diagnose my endometriosis and then another 5 yrs before they took me serriously and tried to do something about it.. I was at my wits end and felt really let down.. Even now when somethings not right i am reluctant to go to gp incase they think i'm a hypocondriac.. Luckily though i have a nice GP now..
Any chance you can move doctors.. it worked or me and i was finally taken seriously.. might be worth giving it a shot.. not fair you have to see a GP you not happy with.. and who certainly isn't doing any good..
You need some answers, support and confidence of the medics again... Maybe another doctor can offer you this..
I really hope something good happens soon for you, you deserve some happiness..
Thinking of you
Take care
Tracy
xxxx

niecsey

Thanks Elna x Hi Tracey oh we sound so similar hun!!! I was going to docs at least once a week at one stage they kept blaming my fibro and thyroid levels!!! took me to collapse through the night and be rushed to hospital to be TAKING SERIOUSLY i HAD a 4 inch cyst on my ovary 6 months after that they did the lapra and found l was a mess inside loads of adhesions l suspected endo l had every symptom going and after the hyster l was told l had it from the surgeon he said no wonder you were in so much pain and l said yes l was for years!!! I couldnt even do a basic stretch like you do when you wake up it was too painful l had years suffering from that took it out of me! It crept up so slolwy then it was all the month horrible disease endo bless ya hun x I am so reluctant to go to gps now liek yourself l am considering changing need to do my home work... been thinking l might wait until l get heart tests back then if they come back ok l can be armed with the continuous on going chest/spine pain aggrivated by minimal activity and tell them l need looked at again... but also decided if lm in too much pain this week l will go and see what happens l hate going grrr lm so grateful to you girls thank you all so much xxx

skezier

Hi Niecsey,

I so know where you are coming from! Once you have one thing they can pin it on they tend to do that.... i call mine the donkey and he has that many tails on him its a wonder he can still be upright

I also had totally disinterested and useless doctors (escaped from them now and if it weren't for the fact it would count against me for ever after would have them for negligence!) The lack of care can be frustrating and staggering even at times but I think you are entitled to ask to be referred?

I would push to see a rumo cus something is going on there and a rumo is the best person to rule out any inflammatory arthritisis..... mine also deals with the oa now but only as a pain relief and keep an eye on thing.

Its wrong but sometimes you have to stand your ground and fight your corner.

I get the sternum pain and rib pain but I might also have fibro... i wouldn';t let the rumo tell me what the other suspected condition was and said if its fibro I would rather not know. he changed the subject so....

Anyway they put the rib and sternum pain down to the pa so i honestly thing it would be a good idea to see a rumo..... even if you have to do it privately just to be seen. its around 180 here cus I thinking of doing it re the oa in my neck just now cus they don't think its worth getting an ortho opinion on could it be helped by surgery.....

have to pay off the vets bills first but its just an idea.

I think they should refer you via the NHS but that's in such a sorry stare in part it might be they wont. I am sure they have to once though.... going to test that one out re my ortho opinion actually

I agree with Elna they have the results and you need to chase it up. mind the fact they haven't contacted you is a good sign normally.

One thing that might help is being referred to a pain clinic? They do deal with fibro.. as does a rumo.. and get a good one and they are worth their weight in gold.

I so wish i could help but just know on the living with forum you will always be heard and sometimes that's all we need to have a fellow human to talk to about this bone stuff and its cousins. hang in there and hope you can get some real help soon. Nice to meet you Cris x

niecsey

Thanks Cris x sorry you have been 'here' too .. The last time l seen rheumy was about 18 mth ago that was my 2nd time the 1st one 2 years before that wasnt interested at all.. seemed very pig headed...patient a woman in her 40s must be depression type crap! Pig headed man! Had a really bad night again sweating like mad hardly had any sleep and l am shattered today so if l ask for a refferral at cost to me l dont mind at all had enough of been psd about does my gp have to agree with it so l can see someone? Will leave it short lm shattered goign to try have an hour thanks again all xx

helpline_team

Hi Niecsey

Really sorry to hear all that you are having to go through without much medical support. However I'm glad you have found the forum and so many supporters. I just wanted to say that if you wish to talk through how to proceed or anything else feel free to give us a call.

Best wishes

Simona

skezier

Hi Niecsey

Does the gp have to agree is another one I might be about to test out

I think that one is they don't... they might tell you your waisting your money but they should do it.

there us this thing called choices... we have none her cus we have one hospital in the whole county and its a failing one ..big time and has been for years. We have a bad ptc and well collectively it means we don't get the best of treatments and nobody cares basically....

Not sure how choices work but have a look on line and see if that's something you can use to help you? I looked but here its just not funded so there are none..... tis so wrong actually but then again we are always behind the rest of the uk here.

Niecsey I really do understand where you are but not much help eh?

You could try Pals..... I did it once.... made it worse but that's cus this one is under the ptc's pocket..... can i say that?! Its also on overload as the ward and opd nurses now tell people openly to contact them.

Even give them the number..... its that bad here!

I don't know what you can do except ask, scream and cry.... sometimes that's works... it got me new doctors I walked into a new practice and when they said I was out there area i just burst into tears, they asked who i was with, told them and they registered me there and then so things can get better......

Does it help? In some ways but what i always find I need is someone real to pretend they care! That's unachievable i guess? See i do know how you feel......

Fight is all you can do but just remember this forum is full of folks that do care and well your not alone in it all.

Will let you know about the doctors having to agree re private consultations etc.... going to find out cus i just been written off and stuck on palliative care and there is a huge bit of me that objects to that so much

Oh and sell the donkey! I didn't and its just so handy for everyone to be able to blame it or pass the buck to it.... I will have yours as a companion if you want

Sorry gone on and on but I gets some cross when they don';t care cus I know what its cost me! Don't let them do it you flower cus its hell when your washed up and know they ain't going to help you bar what they are already doing... mind I do intend to scream over that one just not sure how yet ((( ))) and hang in there Cris xx

niecsey

I am so grateful to you all for understanding thank you from the bottom of my heart seriously x I KNOW my OWN BODY just like all them times l went for help and they kept fobbing me off when all along l was a mess inside god knows how many docs l seen and not one over them years figured it out cos l believe they look at that pc screen see fibro and your stuffed 9/10 times well l must be amedical wonder if fibro caused me endometriosis pelvic adhesions and l mean lots and all the rest of the crap! God l even told them my symptoms it is so damm frustrating ... l can honestly say l met one doc in an out of hours appointment a few years back he listened to my symptoms ( not the gyny fibro ones lol) and he said to me it sounds like you have ankolysing spondilosis sorry cant spell it and told me to mention it to my doc as he couldnt of course diagnosis things like that. Well l did and doc just shook his head and no more was said... l have looked up symptoms of AS a few times and l do think it may be my problem but they have put me in the corner on the quiet chair for that long that lm now afraid to even make a suggestion! I feel so uncomfy when l go to docs now l feel belittled like l dont count and weak only l KNOW l am not weak or pathetic l dont want to live like this? Christ who would? Oh l did complain to Pals over a year ago... told them how l felt it was more aimed at me needing the hysterectomy after asking for help for years and been fobbed off... l also mentioned that 1st theumy l seen and his attitude. I got half an apology on the gyny stuff the rheumy reply never materilized! I didnt follow up either cos when the letter came my Mam had just died.. Right sensible head on. Good look finding out the answer about private refferrals really interested in your reply x And Simona thank you l will be in touch no doubt, x Take care all

skezier

Hi niecsey,

Oh flower that's a lot to contend with. I really do get cross when this happens to people cus i been there and its cost me my neck so i do know what price lack of care can bring.

I am glad you were able to let that lot out and sometimes that's such a help as well.

Simona is right and a chat to her would help! She is lovely as well and listens. You need to let that out for real cus I know it will eat into you! Obviously there are many people in the helplines but they are there and it might help to ring them.

The AS side... i haven't got it but my lumber especially is fusing its self up for what ever reason.. they never said why but its ok and actually kinda strengthens it in a weird way. You can help that by exercises you can find both at the top of this page in the AC pages.. can't remember what its under and the AS people also have their own site and exercises etc to help keep it supple as it can be and for me more importantly fuse up strait... mine wouldn't pass a spirit level test but its been kind to me.

This donkey thing... oh flower it needs shooting! I know how much they blame the other things and everything gets lumped on it regardless.... how you stop them i don't know but they have to look at you as a whole person and not as a fibro case!

Look sometimes it helps to just print something off and let them read it... maybe it could help if you printed off what you have written here and handed it to them? Tis time they helped you and well it might shake them to know how your feeling....

Right with you about sitting in the corner and feeling your worthless.... I hate bad doctors as they underlying your confidence so much.

I feel like yelling I am a human being well actually i really feel like being booked in as an odd primates and going under my vets I know they have told me they would put me down but sometimes that seems easier

Niecsey I going to pm you cus the helplines forum might not be the best place for all this. i can't do much but you can chuck your junk at me and at least that's letting you spill it out flower... i am totally ok with other people's junk its my own I can't handle

Will try and dredge something that would help out of the mush that seems to be my brain. Will pm you now ((( ))) and ring the helplines as might help as well. You need to talk flower... that much i do know is necessary. Cris xx

niecsey

lol do l sound like l need carted off to the funny farm? LOL not quite there l dont think yet lol l am grateful to you all really it helps to share eh? Well l pmd you back what do you think of my idea? Ive printed diagrams of the human skeleton front and back and highlighted where my problems.. are its like dot to dot lol. Going to wait until l have one of them days when l cant get to docs ( for pain and feeling awful) but l will go and hand it over least that way l wont have to try and shove as much as l can into a 5 minute appointment will be back later xxx

skezier

Hi Niecsey,

Back much later :roll: i really do need to learn to say no and getting sheep with self shearing hooves might help

i think that's a very good idea actually but also ....

Look at what you written here, modify it a bit or knock out some of the emotional parts so it reads as facts rather than frustration and anger and put it into easy read, big letters (i would go for at least a 12 size font thing) with paragraphs defined clearly with spaces between them so its idiot proof to read!

then make a double appointment with a gp and hand it to who ever you see as well as the chart with where you hurt! You have to make it nice and simple for them cus they can't deal with more than one or two things at a time....... shame really cus it would help if they could stretch it a little to 3 or possibly 4 things

I kinda wonder if you could change doctors maybe? You need someone on your side.... I still after all these years don't know how to achieve that Hell with the new docs, and they are good, I still been waiting months and months and months to see a gastro as urgent with an ulcer

Mind got the appointment at last ( i think its been about a year now) its either march or may and I best check which For me that's a last hope....... by the finger nails actually cus i got crohn's and some of the drugs used to control that will inadvertently control the pa and since the rumo hasn't gone for funding the gasto might...... Probably a flap, flap oink mind

See i do know what its like to be totally disregarded and invisible.

While i was plodding evening duties i did wonder if a pain clinic referral really is a good idea.... They deal with fibro and some are very good. i was lucky there actually. Mine does treat me as a human being as she says stress is a major factor in my endless flare.

What ever you do niecsey you must not let them side line and rail road you out of their surgeries and clinics... i did and look where its got me

You take care and i don't know as any of my ideas are sound but its all i can think of and yours i think is brilliant! Go for it... be nice, be ultra nice cus they can be shamed..... or in someone who I have treatment by every 4 months see you as a soft target and basically bully you Hell I am so useless.... does knowing it make it more acceptable

Keep in touch and let us know how it goes and just remember you ain't alone or invisible with the folk on this forum. ((( ))) Cris xx