Does anyone get car mobility - Fibromyalgia Acti...

Fibromyalgia Action UK
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Does anyone get car mobility


Hia, I am still running my work due to my problems and did not shut down because i still do not know whats happening (hate this taking so long) it is eating me up badly!! I cannot do the physical side of my job and because being self-employed i have had to pay others to help here and there and had to pay out more for insurance too cos i never know what my days are going to be like! i chauffer round my girls and check work and organise and deal with customers every day but i am doing about average 120 miles a day and my left side is worst and of course those really bad days where it is very difficult an automatic would help and i cannot walk far more than 15 mins as the tight band feeling i have i cant stand long and i just get so fed up and have to come home!! i have a stick for the longer walks but not sure i too embarrased to use it cos i dont exactly have a true diagnosis as yet even tho docs are along same lines as me with fm but i have to wait on seeing Neurologist on 12th of this Month April.. I also have and had all symptoms of MS too but they wont confirm until seen Neurologist its been a nightmare for 2yrs and fianancial struggle too, but not claimed any benefits just kept the work going best i can incase there is a cure but i STRONGLY doubt this daily weakness, strenght, tiredness, band feeling and well neck aswell as one side spasticity sometimes worse than others.. HELLLLP sorry i just think of too many htings at once at go on and on!! some days i cant even rite and on top i think i have arthritis too as my bones are starting to mishape slightly :-( xxxx

11 Replies

i still apologise over pic but this is the ONLY site i cannot get a pic on. I am on FB if allowed to say then you can view me the?! Nothing worse talking to some one with no face hmm

HiddenThis reply has been deleted
fairycazzie in reply to Hidden

hey jules. how are you doing today hows it been for you. and thanks

.can you claim for anything even if not definate diagnoses but everything is causing problems day to day ie being able to walk longer than 15 mins sometimes 10 without gradually just feeling like the heaviest pregnant woman on earth or like the biggest gorrila is squeezing you is the only way and if i then stand the base of my back and spine really plays up and then i limp trying to walk..sometimes want to cry :-( because more of the frustration not knowing whats up or the legs getting weak..or your hands dropping things.. i usually do things with 2 hands as i dont trust one hand! i get such a tight horrible aching around my neck too and you know when you want to go find an outifit and everything is on racks above and you cant hold your arms up to look because they feel too heavy and hurt or spasticity feeling.. ohh the days are so unpredictable. It is very hard to accept and yoou know you feels so selfish too because there is worse off out there. My worst is when i cannot go anywhere or do anything at all everything is such an effort, taking machine out of the washing and trying to fold and trying to make the bed.. i have to take breaths when talking as if eel am using all the oxygen at times and jumbling words.. sorry sorry i talk too much i am just so frustrated and i cant get my head around all this at all its eating me away day in day out constantly on the net looking for answers.. the docs have said tho along my lines just waiting to eliminate ohhh and having accidents too that you cannot FEEL at all embarrasing!! xx just felt like such a moan as am over tired and dont know what to do with my self half the time ... just working to pay the bills but my heart is not in it like it was 2yrs ago!! cant bare watching girls do what i used to fly around doing it is so upsetting i keep filling up.. xx


Hi i dont know how youcan drive 120 milwes a day bles you i could not do that at all but good for you you are doing sowell and i too have stick but have only used it hanful times , i hope that you get on ok on 12 th aprillove to you diddle x


Im with Jules on this one fairycazzie. Ring Adult Social Care, they are best to advise and i know you can get help with mobility if you are on higher rate dla, but hats off to you, i know i dont drive but being sat in a car for any amount of time makes me sore.

Hope you get help. Hugs xx

Gracie59 in reply to Hidden

You don't have to be a driver to get a Motability car. If you get higher rate mobility DLA, you can still qualify for a car and nominate 2 (I think) drivers. In fact you don't even have to be in the car, so long as it is being used for your benefit - this means when my husband goes shopping for me, I don't have to go with him - though, of course, he can't park in a disabled space or use my badge.

Hia diddles, jules and kia cant remember that one now sorry lol eek.. thankyou so much for replying!!

I do not claim anything at all i not even tried! all because they not diagnosed me yet even though there is things in mind but i have to wait.. iam just end of tether at times cos on outside look so normal apart from bad bad days where i limp or can hardly walk.. i am like 5ft 1 8st and was so very extremely energetic , now am complete opposite...and as for driving yeah it can be hard because you get stiff and then weak at times. i feel at times i walk on side of my feet or heels before toes if makes sense.. i am just concentrating so much on the day and what i have to do that when i do get home i literally park mi botty on the sofa and dont move!!! ..i really appreciate all your comments .. but do i have to have a diagnosis to claim benefits?? hmmmmm xxxxxxxxxx

ohh and its the very base of back as well as my spine and neck that just has this contstant feeling in the back ground thats sometimes unbearable...huh ohhh i dont know..but i feel ok i guess at side of some of you guys i still get out and run my work x

hi there you do have to have some kind of diagnosis or your gp backing you as for mobility, i have that, and you have to walk so many metres or yards i certainly cant walk 15 mins anywhere so not sure what they would say to you, they class 1 double decker bus as 2 metres, but i have spinal problems aswell as fm so my walking is vergually nil xx hope this helps, it wouldn't hert to try!!

good luck with everything xx

If you receive high rate mobility and use it to get a Motobility car I'm not sure if you could use it for business because they pay the insurance on it but this is something you would have to ask. also if you are doing 120 miles per day you would go over the 60,000 miles over 3 years and I think it's 1p for every mile you use over the 60,000.

Hope this helps

thankyou for those bits of info. lets just say i know some one who has bad feet and has a car and works and had no problems getting it and i can no way do half the person this can do at all anymore compared to 2yrs ago.. not sure i want to say too much but they have more of a life than i do going out socialising, pubbing, walking round parks etc.. because of the leg weakness, my worst days are i can barely get up and down stairs at all as my legs are too weak, but on a good day i will walk 10-15 mins but i am already hurting before hand but it gets worse with the feeling in my spine, very base of back like its going to snap and my ribs like a gorrilla or a tyson squeezing me its so uncomfortable and i soon have to sit or hold something but i have not walked any lengths at all lately to find out how bad i am because i am in and out of car into houses or a shop but i feel i got permanaent frown cos its hard work! to look at me though you would never believe a thing!

I have no diagnosis Ebony i was originally told it was the discs in my neck pressing on my spinal cord causing compression, but after Rheumotology and Neuro surgeon and Muskeletol examinations etc my reflexes are badly messed up aswell.

.the rheumotology felt i needed an operation ! the Neuro surgeon said because it is not on just one side (the right side and it is wide spread it would be more chance of paralys than any good and would prob make me worse than i am now. (ifeel as though i sound like i need a wheelchair) when my legs are weak i could definately do with one as too wobbly and shaky!! i try to walk normal and they start playing up on me especially my left and the spasticity too arm and leg..i cannot even carry anything strenuous and carrying the 2 ltr milk from work top to fridge is heavy taking washing out and trying to fold from machine is a chore! .

I also had a hernia op where a nerve was trapped around the titanium and i was crippled from that. it was burnt away and the band started, really bad sciatica, vision probs then my neck went 3 times in 3 months!! so they were thinking fibro but they need to eliminate other things i am constantly uncomfortable from my neck down and a lot of compression in my head too. debilitating at times and the fatigue can be a nightmare! i have jumbling of words and slurring on and off my speech has been to the extent i could not get a word out it was as if was a deaf person! and yet they not given me a solid answer until i see Neurologist. Think its to cover the GP's backs incase get it wrong. hmmm not sure..

sorry to have made this post so so long

Ohhh and teh mileage that much is hopefully temproray as i am having to car share with hubby hence that kind of mileage i would be doing half in a car of my own is that any better lol sorrry!!!!! blaaahhhh blahhh i do go on tooo much

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