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im tired of fighting

shirleysshirley Posts: 201
i have been off work sick for nearly a yr with back pain, i do have to say it has gotten better but no way near manageable.

i saw hosp doc 2 weeks ago, he is gonna give me more steroid facet injections an another epidural, they were fun NOT,i live in the UK, i am claiming the new support and allowance benefit (USED TO BE CALLED INCAPACITY BENEFIT)

I had a medical to see if i was entiltled to this new benefit, i was accepted, now they are sending me for another one ???

i have been in so much pain these last few days, i feel like throwing in the towel an saying stuff the money,the hosp want me to go back to work ? tell me how ? when i can only sit for a few minutes, walking is agony and sleeping is near impossible.

my boss was sent a letter from hosp saying i could try going back for max 2 hrs a week as long as i have regular breaks, my boss not impressed.

i have been offered a 360 fusion at L4/L5 i still cant decide if im ready for it. i have to go to a job club every month to be able to get benefit money. they have no idea that just getting through each day is a major thing for me. my meds have been upped again and i feel so low but also feel im being forced to go back to work or have the op.

feeling very sorry for myself today, it just makes me mad that i know a lot of people on benefits who are perfectly capable of working they choose not to, i loved my job and would hope to be able to go back to it one day.

all i do is fight to be heard and to get the help and benefit money ive worked all my life for. my surgeon only does 15 of these ops a yr, ive managed to talk to 2 people who have had it done and they both are worse off than before. im rambling now but i needed to get it off my chest, thanks for listening x


  • Hi Wish I could help you threw your pain.We all know the pain you are talking about.And yes we all goes thur the pitty stage. But we all are here to help you thru it.

  • Unfortunately many people on the board can relate to your pain and the frustration that many of us live with.

    I wouldn't think that doing 15 surgeries such as a 360 fusion a year would be enough for the surgeon to keep up his skills. Is he a general surgeon rather than a spine specialist? Are you able to see a different surgeon?

    I see you have spondylolisthesis. I do, too. I have found that when the pain is getting worse, or at least you are no better, it is often due to that slippage. There can be just enough movement in the lower spine that it allows the spinal nerves to become compressed. It is not a situation like a herniated disc that a person can recover from without intervening. Usually there is progression. At best, the pain levels remain where they are...but, often the condition continues to slip and the pain increases. Depending on the amount of pain you are in, you really cannot ignore the situation....doing so risks permanent nerve damage.

    Try to maintain a positive attitude. I know it is really hard when one is in so much pain. We are here to listen.

  • Please please please do not give up!!
    I had a run in with a new surgeon yesterday, who reduced me to tears (this will be new rant somewhere soon - I am far too sore & angry to write it now!!!!)
    I too am in the UK, I was told last october by a pain specailist: Accept that you are disabled, this is as good as it gets, and it might be time to retire on health grounds and live on benefits - I had only just turned 40 the month before and if I did as he suggested I would lose my house and all of my self respect!! or what is left of it. I know it is hard to claim much - the most I have had out of the system so far is a disabled badge - I feel bad about trying to claim anything else and by hook or by crook I am still working 6 days a week - mind you the last time I took a full months wages was May last year!! You can only do what you think is right for you and work can not dictate what you can and you can't do there are laws that are to protect you. Have a chat to CAB and see where you stand on things, they often give good honest advice. When you are feeling stronger make a stand for what is rightfully due to you.
    You can PM me any time you want to rant or chat.
    Dorset Boy
    (the alter ego of Ian who still thinks he is under the age of 25 and thinks he can still get away with calling himself a boy!! LOL)
  • I agree you should find another Surgeon who does more surgeries and get his opinion. Although I hope the injections can help with your pain now. It's been over 2 years I've had back and leg pain and just had my 7th epidural and facet joint injections. One Surgeon told me I have all the signs of spondy but it's not seen on the MRI or x-rays so I'm not a surgical candidate although I think I would do surgery now. I'm being forced to give up my job to collect my pension from the hospital and national pension plan.

    Has the Surgeon said it is in your best interest to have surgery? I would get more opinions if surgery is necessary. It must be difficult going to all the other Drs for assessments for disability allowance. Talk to your Primary about not sleeping and see what options you have. It's hard to stay positive when you're sleep deprived. Take care and we're pulling for you. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I'm in the US, so I'm not sure about the system there. I agree that you need to see other surgeons/doctors - don't know how difficult that is under national health.

    With regards to benefits and exams - GO TO ALL YOUR APPOINTMENTS, AND IF YOU DON'T - MAKE SURE YOU LET THEM KNOW BEFOREHAND AND SEE THAT IT IS DOCUMENTED IN SOME WAY. I loved working, and suffered through six months of hell before stopping work - I worked with people with developmental disabilities and I got worried I would compromise their safety because I was in so much pain/fear and medicated. After I stopped work, I thought I would get better and be back at work within a few months. Two and a half years later, I'm still not working, not even part time. Bureaucracies have their rules that are applied to everyone (except the elite/favored!) - so my advice is to make sure you get your benefit in case you don't get better (you can always drop it if you don't need it!). I always hope for the best, BUT PLAN FOR THE WORST. That is what I always told the families of the people with disabilities I worked with. And send the bureaucrats LOTS of paperwork, from all your doctors, whenever they request it, and in a timely manner. They love paperwork/documentation!

    But the bureaucracy can't force you to have an operation, so really - don't feel forced into making a decision about that.

    Take it easy, take a breather; then when you feel a bit more relaxed and hopeful - get back to dealing with all these issues. Come here when you're frustrated - vent and read the stories.

    All the best.

  • can you give me a ring ? we have a lot in common and i think that we could help each other .i need the same op as you and i am waiting to see about the new benefit .i understand how bad things are for you as i could have written your post myself !! the4 not sleeping /sitting etc ¬¬!!! talk soon {i have sent my number
  • i cannot see another doc in another town, i have family commitments that mean i cannot go further afield. my surgeon is the best here and he teaches other surgeons around the world. he is a spinal surgeon. they just dont believe in giving ops here unless they really need to.

    he does open up patients if they need to be near the spine, but he does not do that many fusions, they believe in non surgery options until it is really needed.

    they did hope to do an artificial disc replacement but i have osteo arthritis in facet joints so its a NO.

    my GP is useless, he just says i dont know what that means when he looks at my referal letters, really need to change docs but its such a hassle. acupuncture has been my life line, i dont know what i would do without it.

    just wish there was a way out of this situation and without the need for surgery, a magic wand is needed can i get one on e-bay ??? thanks for replying, i really do mean that x
  • Maybe it is time that you found a new GP!!!
    Your Gp should be supporting you at every stage!!
    I called mine before I left the hospital on Monday after my surgeons appointment and she called me back within two hours and I am off to see her in 1/2hr time to discuss a way forward and to review my pain medications etc - my fentanyl patches are causing a skin reaction now!!
    I know that she was (on Monday) dictating a letter to the surgeon that i had hoped to see (not the numpty that I ended up seeing because I was about to breach waiting list regulations!!)to try & get me i there ASAP rather than the 4 months I will now have to wait to see him and also one to my local pain clinic to ask why I haven't yet got a treatment appointment despite it being 6 months since I last saw them.
    I am normally online during working hours (UK time) - I can't sit for long enough in the evenings after working all day to logg on!!
    The only thing that is keeping me working is the large doses of mediaction that i am on - some days I could quite happily give up - but only some days!!! As hard as it is you have to keep positive it can be a downwards spiral if you don't!! Everyone on here will give you a lift when you need it most!!!!
    Ever thought about a second opinion just from another surgeon?? sometimes this can help just to put things in perspective even if you get the same prognosis as your current one has given you - I have done this recently and for me it gave me some hope!!
    PM me any time
  • Hi Shirley~
    Oh girl...I could of written your post! I think that at one point or another many of us could have written that! I know (for me) some days are better than other days...I live for the days when the pain is less. I think the worse part of the whole thing is the waiting...waiting for the surgeon...waiting on the GP...waiting for the government...waiting on paperwork...waiting for pm appointments (it took me 6 months to finally get a pm appointment!)waiting to be well! Personally, one of the things that I find so heartwrenching is the disability tag in my car...been disabled since 1991..an eternity. I hate parking in the disabled spots...I get out of the car and people look at me like "why are you disabled??" They always have such angry faces...like I am taking up a space that someone that "looks" disabled should have! I have tried to go back to work numerous time to no avail and always reaped the consequences. I want you to know that anytime you need to vent or whatever feel free to pm me...I am willing to help in any way I can...sometimes just putting into words how you are feeling at any given point helps...sending you a gentle hug this morning~
  • Shirley,

    I know your pain. It is so frustrating to go through all the conservative treatment and none of it works for you! But you may stumble on one that does and can keep you out of surgery. Keep pushing on.

    If it comes down to it, have the surgeon explain the procedure very specifically and what your percentage of success can be. Ask how the osteoarthritis will effect the outcome of a fusion. Is the OA the cause of most of the pain or is it the ddd and spondy? Get all the information, twice if necessary, to make the most informed decision.

    Wishing you the best,
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