Back Again! Back Pain Support Thread

[PavlovtheCat]

Only right I start the new one seeing as I was responsible for the last one ending so abruptly !

This is a support thread for people with back pain (that does not even cover the description of hell that back pain causes). It's for all types of back pain, for long term posters with chronic pain (including those on the upwards journey to recover), short term advice through tough acute episodes and all the in betweens.

We moan, winge, share successes, guide each other and hand hold through the maize of a million medical routes and options, treatments, investigations. We internet shop as a form of pain relief, drink wine, take strong painkillers, eat cake and we go through lots of heat packs!

We don't always have the answers but we do have a lot to say about it all

Here are the links to our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues
www.mumsnet.com/Talk/general_health/2023274-More-Terrible-Back-Stories

Actually go for it on all counts really. Blue badge, pip, ESA or whatever. I'm still waiting the outcome of some of these but on all counts it never occurred to me to even apply.

When I got my bb (local council form plus assessment done nearby), I must admit it made me feel very strange and conflicted. Like I was now officially disabled. Not going to get better. I wasn't exaggerating or anything. Very difficult. In fact I didn't use it at the start even. I was terrified of being called a fraud.

And likewise benefits. It simply never occurred to me. I know everyone had their own take on this but at least consider it. As previously stated PIP and Support Group ESA are not means tested.

Just be prepared for a very very long wait for PIP. I put my claim in on October 30th 2013. Am still waiting!! Emailed my MP to help. No reply!! I ring DWP every week to update them on new meds etc. am still waiting. But at least I tried whatever the outcome is

I think that's the thing, matilda. I do feel terrified of being called a fraud. Quite a few people I know - school gates etc. - haven't a clue this is even going on, as all I've mentioned is that I'm having "back problems" - which obviously could be anything, just a bit of an ache after doing the gardening or whatever. And they see me walking to / from school.

And though this has been going on for a year, it's been variable. it was only a month ago (hard to believe) that I was wondering if the disc was healing by itself as I was walking so well: 2-3 miles (even ground) without a break & only aching above the knee. I know it's not exactly major league hiking, but I wasn't feeling disabled either.

Not being able to stand for more than a few minutes has been more of a problem throughout - & some of the day-to-day ways that affects me are a bit ridiculous, like staggering meal prep. so I chop some veg. at one point, come back & do a bit more later, etc. etc. But a blue badge wouldn't help with that.

Also can't imagine my GP or anyone supporting these things when, in their eyes, I'm just waiting for treatment that keeps being presented as the answer to everything.

Oh, I don't know. I'm feeling obsessive about this injection ATM & there doesn't seem enough room in my head for anything else. I just want to know what happened. No way could I go for a year without left leg symptoms, get them within 24 hours of a nerve root injection, & it be a coincidence. No way. Keep reading technical stuff about rare risks & it's scaring the shit out of me. Think I should go & do some exercises or something instead.

We're not going away next week. DH just doesn't think it's sensible for me to be in the car that long. His dad's doing loads better & DH has taken it all out of my hands & cancelled the hotel etc. - think he's trying to stop me from feeling guilty. It makes sense, I know - a long car journey & then not being able to walk properly when I get there isn't the best plan. And stressing about it wasn't helping.

msdj, call the mp's office and ask whether the email has been received and you would like a response please. You are asking for help, not to have a rant. Your mp is employed to work for you. As you know mine was helpful but I did ask for a meeting. He didn't look remotely interested until I told him my sorry tale and asked for help. He then turned out to be very prompt.

Also, I have the address of the ATOS Head Honcho if it is they who are dealing with your claim. Happy to pass on.

Loon, probably the right thing to cancel trip for now. Shame, though. I know what you mean about people not realising there is anything wrong. I tend to give info on a Need To Know basis. From the outside I look pretty normal ( until I suddenly sway over and look as though about to fall).

Not heard a thing from atos. I have been on basic ESA for 7 months now. Waiting to be assessed by atos but they are behind apparently

Forgot to say yes please Matilda x

Loon, I relate to feeling like a fraud. I was still in hospital in February, had some spine sawn off n a tumour taken out but still feel a fraud when using my BB (and I'm not talking about cream, here). Lol
I think it's conflicting when we LOOK well and ARE well but our backs are a bit fucked. That is all.
A charming mum at the school gate apparently sneered "Well she LOOKS fine!". Make up us a marvellous thing.

I was told by the BB people that having one dies not mean I'm registered disabled. So that's a relief as was worried about that, too. And they're dated - not permanent, don't always have to be used. Just on my more painful days/ times. Life's hard enough. It's move to have some allowance for it.

Hello just stumbled across this;
I am new to back pain lark but bloody hell it's miserable isn't it...
I have pulled something badly at the gym- been going on a week in total agony..went to the osteo today and she said she is sure I may have slipped a disc, and to see a dr today..

Didn't get to see the dr but over the phone she prescribed naxy something and diazapan. Said to go back in three days if no better to take it further, possible have scan etc...
I am In Total agony- can't stand up straight and I'm practically walking at a right angle..

I must say I am enjoying the diazapan though!!!
How long am I going to be like this for.. Right now I can't see past it and feel like I'm never going to be able to stand up straight again!!!
Sorry that your all suffering too!!! This is the pits isn't it!!

Anomite - it's great your GP is being helpful. Most of us seem to be dealing with longer term stuff that may have started out like you but with less responsive GPs etc. so hopefully you won't still be suffering for long. In fact 9/10 disc herniations are supposed to heal naturally. I had a slipped disc at 16 and got better with just physio, I'm sure it was a few months at the most and I responded quickly to physio once they identified the right problem. If you need the naproxen for long ask for something to protect your tummy as it causes cramps, bleeding and ulcers long term. Rest and heat seem to help too but keep moving gently like walking and stretching. If the pain is too much cocodamol is fab - from the pharmacy strength is enough if you are new to it. Amiltriptiline and gabapentin seem most popular to ease nerve pain if you are suffering with sciatica. You should be ok and fingers crossed are in the 90% who respond to conservative treatment and don't need surgery. Just watch out for numbness in the saddle area, difficulty going to the loo or incontinence - these are sign of cauda equina and need emergency treatment, it's caused by very big herniations but it's very rare.

Im still thinking about what to do and feeling definite nerve pain into my foot. I've started the gabapentin again but I think it gave me restless legs last time which I hate. I think 300 three times a day was bearable but is it enough? It's half the dose recommended. I'm not enjoying more waiting but at least there is an appointment with a surgeon. I'm just fed up of being a pain in the ass with the GPs. If I do talk to one I will ask about whether they'd support a BB and benefits application.

queen around here your GP is not connected to your bb application. You fill in a firm from the council plus add evidence like prescriptions, consultant letters etc then send it off. If they want more clarification they assess you. I asked my GP but apparently the system was changed because they gave so many! I think it's exactly the same with the benefits although the authorities my well write to your GP and or consultant.

All worth a try.

Been to the doctors today. Laid down the law. Showed him
All the tablets I am taking every day and how down it's got me. He has changed my 8 tramadol a day down to 2 slow release tramadol and my Gabapentin to 300mg tablets 9 times a day so no change there. But at least it's 6 less tablets a day. He has referred me to a spinal surgeon too for surgery but said it may not help but I said to him I was past caring. I just wanted something done. He said to the surgeon that I had come to the end of my tether which I have. Thank you for all your help. I couldn't have done it without you. Even my dh said that you had given me the confidence to speak to the dr the way I did x

That's great progress ms. Well done, it really isn't easy to be so proactive especially if you weren't a gobby type in the first place. now sit back and wait. And wait. But at least you'll be waiting for something different.

Anomite, welcome and sorry you needed to find us. As said already, hold out good hope because most spinal/ disc injuries do get better on their own. It can take weeks or even months so be patient. You might need to scale down any plans you have right now and concentrate on getting better. Queen gives good advice re pain relief.

My advice is to take this seriously (as if you can't!), take time off work, rest as much as possible and give nature it's best possible chance.

MSDJ - Fab news and it really is important to get your own info and not rely on the GP to do the right thing, sadly. All my medications and treatments have been self requested, including the pain clinic which finally got a proper diagnosis. And I am the gobby sort, even hysterical sobbing got me nowhere. It's just really hard to question the authority of a highly qualified professional you think you can trust. Ooo I'm definitely reaching the angry stage now!

Matilda - I don't have a consultant yet (appointment was confirmed when I called, no letter or details of who I will see yet) so I think it would have to be the GP or pain clinic. I'm using the direct gov form which isn't personalised for each borough. I also don't have anything in writing which confirms my diagnosis, just the letter suspecting it from the pain dr. I'll look on the local form instead. Just struggling to concentrate and still not finding info on non means tested ESA, fuckers obviously don't want people applying. I'm degree educated and used to work in central government so I shouldn't be finding it this hard to figure out. I also don't know if I would qualify for contributions based stuff - I left work in autumn 2010 and we do claim child benefit (and then pay it back), I don't know if that covers me. I don't think I qualify for PIP at all - being in pain constantly and struggling but managing to care for myself (if not the house and children) doesn't qualify me. I hate the fact they don't factor in looking after small children. I did ask the HV when it was bad and the answer was no, there is no help.

queen with ESA you just apply with everyone else. When you are assessed you are placed into whichever group they think appropriate ie work related activity group or support group. I'm waiting to find out which group I'm allocated. If it's support I will get money if work related, which is means tested, then I won't.

Re PIP I say go for it. pavlov gave me such great advice on the forms. You're right, they don't ask you the right questions. Well, there's a surprise. But I bet cooking hurts you, bending to wash in the shower? Fastening clothes behind you? Putting on socks or shoes? Driving? Does your pain stop you from going out? Or your meds make it dangerous to drive?

When I first saw the questions I thought the same as you. After thinking these things through I felt differently. It's not 'can you do these' it's 'does this cause you pain? Should you be doing these things'.

They can write to your GP for evidence, you can attach prescriptions. Ask for a copy of your scan report. Get anyone you know with qualifications to write letters of support ie solicitors or teachers. Physio reports or letter. Be creative.

In both instances I would urge you to phone and enquire. They will tell you fast enough if you don't qualify. I was exactly the same as you, couldn't see any point or didn't even know I could apply.

Yes, it's a hassle but bloody hell, we paid into this for all those years in the hope of getting supported if we were ever unable to work. And being like this is bloody expensive.

Go for it.

Just had a letter back from my MP Saying that he was concerned about my situation and sympathetic to the distress and anxiety it's causing me. Regarding the PIP and the ESA where I haven't been assessed or replied to. So he has written to the minister for disabled people at the DWP requesting a senior official to look into my case!! Two pieces of good news today. Thank you again for such brilliant advice. I couldn't have done it without you x

Matilda - I'm sure you are right and I have to look behind the obvious, pain does seem to be irrelevant on the surface of these forms, I can do everything but it's painful, I could walk for miles but be in pain and suffer a lot the next day. I did give up cooking last night and ask DH to finish, I then realised it wasn't because I'm lazy it was because standing was hurting. I feel guilty for thinking about applying for this stuff. I'm no stranger to benefits as my mum has been on DVLA for many years and is bad enough not to be assessed (I think), that's for severe mental illness, in fact I feel my depression would be more relevant to these questions and yet I think about it and some of the depression and anxiety is wrapped up in the back problem anyway. I do avoid going out a lot and the supermarket was really tiring and painful last time I went.

When being assessed would it be better to not take medication so they can see the real pain and limitations. When fully topped up and rested I feel fairly good.

I think I need to talk to an advisor, CAB perhaps. It's been over two years and I still feel like a fraud applying for help. I do know someone who had temporary disability benefits so I may ask her for advice too.

MSDJ - Fingers crossed for you. I used to help write letters and get them signed off by Ministers. Because your MP is writing to the Minister it should be a quicker response and signed off by the Minister (is the disabled minister that awful ex TV presenter). It will be higher priority for the officials responsible, both timing and getting a satisfactory response.

queen it's not about if you manage with the pain re PIP (we are all managing, but what choice do we have to do anything else? ), you need to think about how much you have adapted to manage, as matilda said, do you avoid going places you used to because it's not longer manageable, do you shower less because it hurts or wait til DH is about to have one in case you fall? Do you use the microwave more as picking up pans hurts, or cook less because it hurts? Do you find your walking is slow, and you occasionally stop when you would not normally, just to get your composure (I get the bus at the moment, trying to be independent, and I break the walk from bus stop to office with a stop at the coffee hut, so I can pause for a moment before moving again), it's amazing how much we adapt, change, avoid and thus when we look at these questions, we think 'no that doesn't affect me, I can do that' but actually, you have already made huge sacrifices. I also think it sucks big time that they don't consider the ability to keep our homes clean as important for our emotional well being.

msdj I'm delighted we've been of a little help. Tbh now I don't work I need an outlet and do worry a bit on here in case I'm a knowitall busy body.xx

queen, yes to the drugs bit. I did tail off for a couple of days to ensure it was a proper bad day. I waited so long I wanted to get my point accross. I'm sure that's standard. Happy to offer any form advice. You're right the depression would indeed compound your problems and could be incorporated into the application. My assessor was very keen to keep asking if I'd been feeling low or depressed. It does gain further points. When you are up to it give them a call.

And you are feeling like a fraud and that is because the system is designed to make you feel like one, to feel like you should not apply. And then you won't apply. I have said this before I know but more money in benefits such as pip are unclaimed compared to the amount of people who allegedly defraud the system, because people are too scared. If you apply, and you are honest, and you qualify, then you are not a fraud. And working the questions to fully highlight the impact of your disability on your life is not fraud, it's the same as applying for a job - you know you are the best person for the job, you know that if you get it, it will be through merit alone, but must word your application in such a way as to evidence how you meet the very specific criteria set to get the correct number of points to be selected for interview. Pip is no different.

Also dla tend to avoid contacting the GP or at least putting huge emphasis in their input because there had been cases (allegedly) of people putting undue pressure on gps in the form of intimidation to support their application. So, they might contact them, but the decision is much more based in other medical info for diagnosis rather than how it affects you, and mostly on how you say it affects you and the assessment forms the info on how it impacts you.

In ever considered that I would be entitled to anything, and so did not apply for a very long time despite my boss at the time saying I really needed to. I felt like a fraud, and when I was awarded it I still felt like I was a fraud, and I now know that is in part how the system is designed, and in part my own personal issues with seeing this as anything less than a temporary blip in health, and not a disability.

I feel like a fraud, even as the bus driver lowered the the floor for me to get on and off it, and someone gave me the disabled seat, people held doors open for me, i hobbled like an old woman on my crutch (high pain levels should probably have had both today) I still feel like a fraud.

But the are so many levels of disabled. And the impact is enormous, financial, emotionally, physically.

Oh for a 'like' button for that last post by pavlov.

Thanks so much for the helpful advice.... It means a lot to not feel alone. I'm sorry to hear about all your suffering and for such a long time too...

It's so bloody hard when you have kids isn't it! I shall watch this with interest...

Wishing you all speedy recoverys..

matilda I am still working and am probably a 'knowitall' we work to our strengths, and unfortunately, disability and all that surrounds it is your strength, I don think it is so much time that makes you so knowledgable and supportive! I think it is experience and desire to help others. You were a midwife, so that caring nature is not going away just because you no longer work in the profession, it has transferred.

Ignore my random ! From the iPad, as usual.

Msdj, glad you had the confidence to tell doc how it really is. Hoping it gets you where you need to be- with someone who can help.