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PIP debate-live now

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Comments

  • rogerblack
    rogerblack Posts: 9,446 Forumite
    georgi72 wrote: »
    Hi

    I have a neurological problem which has left me with permanent drop foot left side for which I wear a leg brace and slight drop foot in the right which I dont wear anything. My brace causes me foot pain and i cannot wear it all the time although i do without exception when out.

    Without it I can manage indoors (as I hold on to things) but cant walk far (probably 10-15 steps) without tripping or falling due to loss of balance. I also have painfull knees and hips.

    I do not currently claim anything as with my brace on I can walk in excess of 200m and do indeed walk 250m to do the school run twice a day. Athough this at times is a big struggle but other days is a breeze.
    It may be worth considering claiming DLA, depending on exactly how your condition manifests.

    With your brace on, can you walk 30m without 'severe discomfort' ?
    (Not only foot pain, but also hip/knee count)
    If not, you may qualify.

    Have you been advised that a brace will impede recovery?
    I'm not awake enough to go into PIP.
  • sunnyone
    sunnyone Posts: 4,716 Forumite
    Tenth Anniversary 1,000 Posts Combo Breaker
    GlasweJen wrote: »
    The ATW stuff seems sorted for now but they are taking ages to pay the taxi company. I had a different driver for a few weeks in December and he actually takes a ATW staff member to work and apparently they're really short staffed here in Glasgow as there are people who have been moved/left their post/went on mat leave and not been replaced, hopefully when PIP comes in these problems will be fixed.

    As for work, it's a total nightmare just now to be honest. Things haven't been good since the buy over and I'm off sick just now as my new employer is an idiot who won't move his bloody stereo out of the T-loop zone, won't read my sick notes and generally is a total w@nk3r.

    I've been interviewed for a job that I really hope to get (same as job just now but huge company with loads of training and development opportunities and the people who interviewed me were lovely), got another 3 interviews lined up plus a fourth that has been promised but not settled on dates yet. Meanwhile my lawyer is trying to get a compromise agreement so that I can leave without working notice and with a wee bit of money for the stress, if they won't release me from my contract it's off to tribunal for discrimination which we're trying to avoid as stress is not good for the graft and we are hoping to get a firm yes or no on wether or not we can start trying for a baby.

    I've been told by the local council that I'm too disabled to adopt so if we can't have our own then I need to find a surrogate which is daunting, my sister has offered but she has her own kids to run around after and I don't want her to feel obliged to do it. It's all a bit crazy and we aren't even planning on cooking this baby until the end of next year but things move slowly in the world of transplant recovery.

    I hope you give your employers a bloody nose, they have treated you pretty bad for the past year or so and you do have a great case (not that I need to tell my granny how to suck eggs)

    Isnt it a bit early to talk babies yet?

    I know at your age many of the people you went to school/uni with are starting families but wouldnt it be wise to wait a while to make sure you as fit as possilbe before becoming pregnant and to make sure that you have a decent position to return back to work to?
  • sunnyone
    sunnyone Posts: 4,716 Forumite
    Tenth Anniversary 1,000 Posts Combo Breaker
    The treatment of pain dosnt just involve drugs like opiates, I use mediatiation and other deep relaxtion tecniques,alongside anti spasmotic meds with both neuro and traditional painkillers to make my pain bareable and any decent pain specialist should provide a similar pain relief regime.
  • dori2o
    dori2o Posts: 8,150 Forumite
    Part of the Furniture 1,000 Posts
    sunnyone wrote: »
    The treatment of pain dosnt just involve drugs like opiates, I use mediatiation and other deep relaxtion tecniques,alongside anti spasmotic meds with both neuro and traditional painkillers to make my pain bareable and any decent pain specialist should provide a similar pain relief regime.
    Yet again you talk as though everyone reacts the same to treatment.

    You name it, I've tried it.

    Physiotherapy, including pacing techniques, not just muscle building.
    mindfullness
    counselling
    psychotherapy
    hypnotherapy
    meditation
    subconcious audio therapy
    acupuncture
    reflexology
    reiki
    Aromatherapy
    Massage
    Hot Stone relaxation

    excercise

    Steroid injections
    TENS


    MST
    Fentanyl
    Buprenorphine
    Methadone
    Oramorph
    Gabapentin
    Tapentadol
    Tramadol
    Dihydrocodeine
    Amitriptyline
    Nortriptyline
    Duloxetine
    Mirtazapine
    Cocodamol
    codydramol
    Naproxen
    Meloxicam
    Paracetamol
    Ibuprofen

    Capsaicin cream
    Lidocaine plasters (recently started)
    Tiger Balm

    Vitamin B
    Vitamin C
    Vitamin D
    Omega 3
    Magnesium
    Chondroitin
    Glucosamine
    Rose Hips
    MSM
    Feverfew
    Devils Claw

    I'm no better now despite trying all of the above. In fact I'm significantly worse. Do you know why. The condition is degenerative, no matter what the pain Dr does it will never improve. All he can do is provide suggestions of what medications MAY provide relief. He cannot guarantee success, nor can any Dr.

    Yet again sunnyone you're talking through your bumhole.
    [SIZE=-1]To equate judgement and wisdom with occupation is at best . . . insulting.
    [/SIZE]
  • sunnyone
    sunnyone Posts: 4,716 Forumite
    Tenth Anniversary 1,000 Posts Combo Breaker
    dori2o wrote: »
    Yet again you talk as though everyone reacts the same to treatment.

    You name it, I've tried it.

    Physiotherapy, including pacing techniques, not just muscle building.
    mindfullness
    counselling
    psychotherapy
    hypnotherapy
    meditation
    subconcious audio therapy
    acupuncture
    reflexology
    reiki
    Aromatherapy
    Massage
    Hot Stone relaxation

    excercise

    Steroid injections
    TENS


    MST
    Fentanyl
    Buprenorphine
    Methadone
    Oramorph
    Gabapentin
    Tapentadol
    Tramadol
    Dihydrocodeine
    Amitriptyline
    Nortriptyline
    Duloxetine
    Mirtazapine
    Cocodamol
    codydramol
    Naproxen
    Meloxicam
    Paracetamol
    Ibuprofen

    Capsaicin cream
    Lidocaine plasters (recently started)
    Tiger Balm

    Vitamin B
    Vitamin C
    Vitamin D
    Omega 3
    Magnesium
    Chondroitin
    Glucosamine
    Rose Hips
    MSM
    Feverfew
    Devils Claw

    I'm no better now despite trying all of the above. In fact I'm significantly worse. Do you know why. The condition is degenerative, no matter what the pain Dr does it will never improve. All he can do is provide suggestions of what medications MAY provide relief. He cannot guarantee success, nor can any Dr.

    Yet again sunnyone you're talking through your bumhole.

    I was diagnosed with the same degenerative condition as you many years before you were and I was convinced it was untreatable because at that time there was was no information available, in the days before the internet it was a life sentance but since then with patients knowing their rights and what help is available it is treatable.
  • dori2o
    dori2o Posts: 8,150 Forumite
    Part of the Furniture 1,000 Posts
    sunnyone wrote: »
    I was diagnosed with the same degenerative condition as you many years before you were and I was convinced it was untreatable because at that time there was was no information available, in the days before the internet it was a life sentance but since then with patients knowing their rights and what help is available it is treatable.
    Actually the condition itself is not treatable, but there options to try and make it manageable. These options however do not work in the majority of cases.

    Less than 30% of people with neuropathic pain gain pain relief of 50% or more.

    Unless you know a magic formula that can regrow nerves there is no cure. Spontaneous remission is sometimes seen, but normally only in cases that are Type 1.

    I've never experienced remission in the 18 years I've sufferred from pain in that area, that obviously includes the period since I was diagnosed in 2006.

    You believe whatever fairy story you wish to believe. I happen to be interested in facts. I know quite a lot of those facts considering I have researched this condition since before the day of my diagnosis looking for a way to beat the pain. So far nothing has worked.
    [SIZE=-1]To equate judgement and wisdom with occupation is at best . . . insulting.
    [/SIZE]
  • Parva
    Parva Posts: 1,104 Forumite
    dori2o wrote: »
    Less than 30% of people with neuropathic pain gain pain relief of 50% or more.
    To turn that arbitrary figure around (I don't know where you got it from), that suggests that close on 1 in 3 people do experience at least some relief from any combination of the meds / therapy available. If you believe it won't work then it won't. If you have an open mind to the various remedies then you may just find one that actually does alleviate some of the pain (whether this be a true or placebo effect).

    Anyway, I suggest that the disabled amongst us concentrate far more on matters in hand than attacking each other. :(
  • GlasweJen
    GlasweJen Posts: 7,451 Forumite
    Part of the Furniture 1,000 Posts Name Dropper Combo Breaker
    sunnyone wrote: »

    Isnt it a bit early to talk babies yet?

    I know at your age many of the people you went to school/uni with are starting families but wouldnt it be wise to wait a while to make sure you as fit as possilbe before becoming pregnant.

    Graft wise 2-3 years in is the best time to do it apparently, next November will be just over 3 years so its about right to keep the doctor happy. We only really get 1 shot at it too, I'm not allowed to miscarry and if I dare to have twins (OHs whole family are twins) then my consultants head will explode!
  • sunnyone
    sunnyone Posts: 4,716 Forumite
    Tenth Anniversary 1,000 Posts Combo Breaker
    dori2o wrote: »
    Actually the condition itself is not treatable, but there options to try and make it manageable. These options however do not work in the majority of cases.

    Less than 30% of people with neuropathic pain gain pain relief of 50% or more.

    Unless you know a magic formula that can regrow nerves there is no cure. Spontaneous remission is sometimes seen, but normally only in cases that are Type 1.

    I've never experienced remission in the 18 years I've sufferred from pain in that area, that obviously includes the period since I was diagnosed in 2006.

    You believe whatever fairy story you wish to believe. I happen to be interested in facts. I know quite a lot of those facts considering I have researched this condition since before the day of my diagnosis looking for a way to beat the pain. So far nothing has worked.

    Many people get relief with a combinations of therapies, it takes time to find your individual cocktail but it worth it for the relief it brings.

    I was diagnosed before it became common practice to prescribe neuro painkillers, I was prescribed massive doses of ordinary pain killers at first and while thay helped with my spinal and pelvic pain they did nothing for my RSD so when I was first prescribed gabapentin and diazipam the change was amazing, it didnt last but I got relief for the first time and over the years I have found the right drug/therapy combination to help me (it needs tweaking regularly to keep it affective, about twice per year in the past few years)

    I was toatlly isolated at first, I felt like the only person in the world with RSD, this changed with the internet and veI talked to many, many people with the condition since then and most people do find some relief, the degree of relief varies from person to person like everything else.

    Just because you havnt found something that works for you dosnt mean that many other people with the condition havnt, maybe if you read a few real fairy tales it would give you a more positive outlook which will increase the chances of you finding relief.
  • rogerblack
    rogerblack Posts: 9,446 Forumite
    sunnyone wrote: »
    Many people get relief with a combinations of therapies, it takes time to find your individual cocktail but it worth it for the relief it brings.<snip>

    Just because you havnt found something that works for you dosnt mean that many other people with the condition havnt, maybe if you read a few real fairy tales it would give you a more positive outlook which will increase the chances of you finding relief.

    The corrolory of course is that many people with the condition do not respond in this manner, and do not obtain effective relief, even through combinations of therapies.
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