Hi to everyone,i am new to this site and so glad i have found people who understand the pain and how this illness affects us so much.
Well today i went to a tribunal for DLA, I felt as if i was trial and the doctor had no idea what ME Syndrome or Fibro,i explained symptons then got asked to go out of room and wait to be called back in.
Well after i got called in i was on the spot for 2 hours,continuious questions as to what i can and can't do,asking how i feel every day and why haven't i been to pain clinic or a ME specialist,OMG!!!Grrrrr,it's not my fault if my GP hasn't refered me to such clinics. I explained i asked my doctor about ME Specialist and told there isn't one in my area and my GP can provide drugs to help.
Yeah right,i'm on Fentanyl,Tramadol,Codeine and they do very little,i'm in a wheelchair as walking even the shortest of distance is so painful as you all know and experience,i'm shocked that the Tribunal doctors and independent advisor know very little about such illness and to top it off,i had a bladder bypass last April,and the doctor asked me this ''Is the bladder sewn to your stoma bag''?,What the hell!!!!!, i mean yeah he's old,but surely all the years he's been a GP he must know,i had to show them my stoma bag also.
I was informed after 2 long horrible hours of such a ordeal i will get to know in post sometime this week,but i'm not holding my breath at all.
If any of you are in the process of claiming DLA or due a Tribunal,for the love of god,please make sure you have every specialist you see in black and white,due to my memory loss i got so confused with being asked about specialist i ended up getting upset in the room and felt a right daft twit.
Also for people who suffer this illness aswell as Fibro,if we are so bad we have to have walking aids,wheelchair,grab rails, tip kettle ,hoist to help with getting out of bed and home help,all prescribed by our own GP.
My reply was i have a wheelchair which i brought myself and i can not afford such items as i only get just under eighty pounds a week and i need that for gas,electric,food etc.
Anyways,i'm babbling on cos i am so rattled about today,have a banging headache,in agony with burning legs and knees and also tired from haiving a seizure lastnight. So i will love you all and wish you all well and have a nice evening. Hugs Julie,xxxx
P.S.Does anyone else suffer with seizures? I started with them 3 months ago and prescribed Gabepentin,but not refered to specialist .
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julieann39
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what a horrid time you had Julie! I hope you recover quickly then you can see your gp and ask to see some specialists. does the gp not tell you why you had a seizure?. Life sure deals us some bad hands! I send you lots of soft hugs and xxx
Sounds horrendous, it makes you feel like a criminal when they treat you like that. I get all my treatment via my GP and she obviously doen't think it necessary to refer me but why should we have to explain it to them, if they have a problem with it shouldn't they be asking the GP for the reasons for the non referal.
Anyway Julie, I do hope you get a good outcome after all they put you through, be interesting to hear the outcome. Take care, Love Angela xx
Thankyou all guys,so nice to be understood by you all,i am trying to unwind by watching Steptoe & Son,although my concentration isnt as good these days.
May have to have a hot chocolate soon and pain killers and hope i get knocked out for night,lol.
Hugs to you and take care;xxxJules
Sorry to hear you are having such a hard time, hopefully you get a good nights rest, soft hugs, x
Thanks Fairy, i had another seizure lastnight and very little sleep,but i will try and rest again soon, soft hugs to you also hun,take care.xx
hi julieann,wot a rite ordeal 4 u,i my sen dnt get DLA,iv been told i shud apply but iv heard so many stories lk urs that its put me off.they a set of plantpots,ope u get ur money lm new t the site bout 5 days i fink,im not sure..that fibo fogs a git...but its dun my confidence a world of gud already.ope it elps u,lv fm me xx
Hi Gerisly,thanks for message and yeap it's not nice going for DLA when you have a medical doctor come out to you in cases like i did who write in report things you haven't stated or done,but you maybe a lucky one hun and have a genuine understanding doctor and support from other specialists,hugs to you hun and i'm glad your confidence is rising,keep it up hun and have a lovely hopefully pain free day.xx
how awful that you wre put through such an ordeal do they not realise that thisa lone is a trauma to you and now you will prob suffer for weeks because of ther non compassionate ways ido hopwe that you get the dla but you should never have had to go through that to get it love to you diddle x
Hi Diddle and thanks hun,i'm sure they do it on purpose to make us sufferers have a relapse even more and stress.
I am going to do another claim if i get refused,i won't let them beat me,next time i will have my note pad infront of me with all specialists i have seen what for and when,i jsut got so confused and mind went sidewall.
I can't believe you got tested in such an inhumane way! So much for our so called caring society.
I have been receiving dla for about seven years but am due a medical next month to assess the level of payments I get. I'm certainly not looking forward to it now!
I am happy for you hun that you have been awarded financial help with your illness and wish you well in your upcomming medical,fingers crossed it all goes swiftly for you hun
Hi Hun , wow what a load of crap you went through my tribunral was around 1 hr long with questions from dr and person who had same condition as me , then told to go out then come back in and was awarded high rate care and mobility indefinitely , bt that now means sod all as we are changing to p.i.p so will have to go through that all again .
I also am concerned that your dr hasn't referred you to any one else but one thing I would do is get your dr to write a letter explaining why and tell that dr that this came up in your tribunral , and submit this again as there is another teir on the appeals .
Hope you get dla as I too am in a powerchair as I can't walk far and I am having phyiso as I couldn't move out of the chair and had my home adapted and drive from a wav , my phyiso was saying in my case. That when I try and say bed a little instead of only one set of muscles working to bend over then the back muscles work to pull you back and the front ones stop mine don't and work at the same time hence causing the pain like most people with fibro , I would like to get to the point of not using my chair but only time will tell and I will loose around £600 a month when that happens on benefits .
Morning Andrew and thanks for your supporting words and kindness. I am glad you recieved high rate and had a person who understood how fibro and me syndrome take away our ability's to do what we used to be able to do.
I know how you feel with walking,i can just about manage a few metres now and then i'm exhausted and need rest,hence why i have wheelchair,but how they see it is if i can take tablets and wash face myself,then i'm in great shape(yeah right numbnuts)
As for the new PIP benefit,what a nightmare that will cause alot of people and loss of financial help too if rejected.
I have so much wrong with me,i'm suprised my family aren't fed up of helping so much,i would love to be like a spring chicken again,but my body is saying otherwise. Hugs to you hun and take care.xx
WE SHOULDE ALL LOBY OUR MP'S IF WE ARE OR FEEL THAT WE HAVE BEEN UNFAIRLY TREATED MAYBE IF WE INUNDATE THEM WITH REQUESTS WE WILL GET OUR PLIGHT HIGHLITED THEN HOPEFULLY RECIEVE WHAT WE ARE ENTITLED TO.
Thanks for your message hun and yes,what a wonderful idea,but will we really get answers and entilement? We need people in authrity who understand our illness and let us have what we deserve benefit wise,i'm discusted with DPW and Doctor's who seem to know very little where i reside.
Hugs to you hun.xx
I had the same treatment at my dla tribunal, I was hysterical at the end of it, my gp had prescribed all the wrong meds wouldnt support my claim,the panel were horrendous it was a lynch mob, as for seizure I STARTED WITH THEM LAST SEPT AND like you was given gabapentin
Hi Lally,i feel for you so much hun and understand why youwere so upset,what gets myback up is people who get benefits for being a alcoholic or drug user,thats self enflicted,although i do sympathise for them they can do something about it,as we can't,as there's no cure and no meds seem to help or improve our pain.
What warning signs do you have regards seizures hun and have you seen a specialist regards them?
Hugs to you .xx
forgot to say, I had to fight with my gp for a referal to a neuro after my seizure, she told me they were a headache, on seeing the neuro it was diagnosed as probable epilepsy
Oooops soz hun,just read your 2nd message lol. well that's some help at least with neuro,my gp who filled my claim for DLA is a gp i ahve never seen or knows how i am. Grrr so annoying.
sending you massive hugs JulieAnn for the awful ordeal you went through and for going the mill afterwards xx
ffs having to show them your stoma bag - how degrading is that? Makes me want to punch the buggas out! (I'd regret it afterwards but would sure feel good at the time!)
will keep fingers crossed they see sense and give you what you've claimed xx
Thanks hun and yeah i was so close as to wanting to jump over the table and punch them all,had a right bitchy woman,old independent male advisor and pakistan gp who i could not understand a word he was saying,i wasn't impressed when gp said''does that mean your bladder is swen to your bag and can we see?''. I was so bloody angry and annoyed as to having explain the illness and bypass procedure.
Useless bunch of a***S. I'm crossing everything hun and if i loose i will fight back.
how terrible that humans can be so callous to others who are in need because of there disabiltys!i hope you get the benifits you so deserve julieann,im waiting for my assessment&been disabled for 10yrs&now have FB to top it off!im not looking forward to being made a second class citazin just because im dissabled,love&hugs your way xx
Hi Lollypop and thankyou for your support and kindness.
I hope you get a good result with assessment and get what you deserve,it's amazing how callous some humans can be.I don't get the DWP tribunals at all,so many of truthfull deserving people being turned down,so unfair. Hugs to you hun.xx
How disgusting to be treated like that ! I so feel for you Ive had one knock back after the other recently makes me so sad that we are treated like this If only they knew how we feel ! I wouldnt wish this illness on my worst enemy lots of love to you xx
Morning Jules, i have had numerous seizures and they do scare me. I have a warning sign of electricity shock feelings racing through my legs to my feet,then they shake,my head does the odd jerk and my hand/hands jerk also. It's not like a epileptic fit,i know how they are as my friend suffers with them.
My gp said they are caused through having fibro/me syndrome,but i will be insisting i see a specialist as when i have them i also get palpatations and sometimes stabbing pain in chest.
I have just recieved a form to fill n from Social services for a assesement and help for aids,thankyou for your kind words and help Jules.
Thanks Lynn for your concern and kind words. I have made a appointment to see my gp yet again as i had another seizure on night of tribunal and again tonight,i was told they are probably due to having fibro/me syndrome.
I need a positive answer though,not just a probably. As for the tribunal well hun,i got confused,couldn't remember dates or specialists i have seen in past 3 years.
I'm still getting over having bladder bypass and wearing stoma bags,and then i get the emotional termaul of the tribunal and being treated like a benefits scammer,i want to work,but i have so many other illnesses i have been advised not to.
Thanks for your kind help and support,take care.Hugs to you hun.xx
Thankyou Christine,and yes ishall get advice from my Mp also and taking it further,it's inhumane how us sufferers get treated and not understood.
I will let you know hun how it went,not holding my breath though and ready to fight back,hugs to you hun and well wishes,so nice to have support and understanding from everyone on here,so glad i found so many genuine lovely understanding friends.xx
I agree with you hun,we are treated like criminals in tribunals and have no sympathy,maybe they should all reside with us for a week and see just how terribly incapable our illness makes us all.
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DLA Tribunal 5th March
Second tribunal tomorrow : (
Pip Tribunal waiting times! 
My Tribunal going to Adjournment
I was expecting a custodial sentence by the end of the tribunal!!!!
