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

And happy to share info on my 'excellent' application forms if anyone needs help. Courtesy of pavlov and another long suffering friend .

msdj I think but don't quote me on this but the 'reconsideration' is a process before appeal, so if this does not get the right outcome, you can formally appeal. Something like 75% of claims that formally appeal are granted! and you can ask what grounds you missed on, so you can ensure you are strong in the arguments for those areas, and chances are you are going to be in hat statistic given how close you are to qualify. And definitely get on to the mp, and while waiting put in a formal letter yourself. I have learnt from experience in so much of complaining about things that if it's not in writing, it gets ignored, and you need to make waves. I think having a blue badge will go in your favour as it is evidence that you already demonstrated enough issues with mobility to qualify so you should get the lowest level at the very least on that basis alone. Definitely take up the offer of everyone willing to help with any appeal or re application, or the letter to the mp it's what this thread is fantastic for practical as well as emotional support and cake.

denial sorry to hear you are not hugely improved is the diazepam helping at night? Hope you get somewhere with the insurance referral, in a way It would be good to be something not related to arthritis so you can get some speedy help.

re. constipation and codeine. If you do get this then it often isn't enough to just take a laxative, you need to take a stool softener as well. the laxative effect on rock hard poo ain't pleasant.....believe me!

I have the name and address of the Top Man at ATOS and can send to anyone who needs it.

Ooo Matilida is he ZG? We were in that area but voted for SK. We are over the river and bit further down now as our unplanned pregnancy while trying to buy made us scared and find something much cheaper. Kingston hospital is a pain to get to from here, I hate driving in Kingston too. I just done know where the other pain clinics are. Although I have been offered a counselling type group via the NHS services nearer by, it for people with long term conditions but I'm not there yet, I'm not ready to say I'm not going to leave this all behind and be pain free.

I am so tempted to look and get advice about blue badges and benefits. DH also earns more than the usual thresholds, we even have some child benefit to pay back. It just seems like the criteria is written to put off potential claimants. Plus it seems so unfair that childcare and housework are irrelevant when these can't be done when in pain or with mobility issues, they are essentials after all.

I was wondering what impact pain has on people, whether I'm typical or not. Is it normal to be shouty and irritable generally, but mostly the kids and partner? It is normal to feel on edge and negative generally about the world? And then obviously feel bad for being that way which is then a bit of a cycle.

I was driving a couple of days ago and this came on the radio cheese alert . The lyrics really made me well up 'life's going nowhere, won't someone help me, please?

pavlov, sorry! not quite Frank, but just a random thing, really. But yes to Staying Alive

I got 7 points on my pip so thought it worth a reconsideration. It's just taking such a long time. I feel to be getting nowhere. Same as my ESA I am still waiting to be assessed I should have been assessed after 13 weeks of basic ESA. It's now been 30 weeks. They said it will be backdated but living off £71.70 a week with 5 children is ridiculous

msdj I'm sorry but you must score more than seven points. It's all about filling the forms in to highlight all your difficulties. Can you indicate where you are located? The time scales are stupid and unfair. And five dc? Crikey that's tough.

queen, yup! it was indeed the lovely Zac. I went with my SIL and we did fall a little bit in lurve!! No Tory but actually I think he's very much in dependant in his thinking. He hated ATOS nearly as much as me. In terms of calming things I'm in the same boat as you and truly believed I couldn't qualify for any benefits. Pip and Support Group ESA are not means tested. And if you are up to date with NI you can claim a year of CONTRIBUTION BASED ESA ( sorry cap lock!) which I have had, too. pavlov suggested it to me and it's taken forever but at least I've finally been assessed.

I am in Lincolnshire

I filled all the forms in myself without help. Didn't know I needed help filing them in. I thought I would get the mobility side of things but scored low on that. If it's rejected again I will get help. Where do I go CAB?

Yes, CAB are great. If you want to pm me your details I'd be happy to send you some examples of my answers. I bet they got bored reading as I wrote so much!

Lying on bed as we have a special evening...a chef coming to cook a dinner party for us! Get me. Something my DH bought at a charity auction whilst extremely drunk. Should be fun. They lay the table and clear up, too. Only wish my back wasn't throbbing but alcohol will no doubt be consumed to help the multiple drugs along.

Have a good day, everyone.x

Queen* oh yes, in response to your reaction to pain. Pain makes me horrendously irritable, it makes my levels of tolerance reduced, and I think family get it worse as we let our guard down there more. DH says he can tell when my pain is increased as my mood changes and I am so much less patient. I also find the world seems more jaded, more edged with negativity and i sometimes find that hard to wade through. I am also somewhat less tolerant of people not realising how good they have it, and I have to remind myself that they have not reason to be thinking like me, and why should they? sometimes, it's a conscious effort to not think it's personal, that I have somehow caused this to happen. I don't believe in karma really, well, not sure if I do, but sometimes I find myself thinking, what have I done for this to happen? But, mostly, the irritability is horrible as I am not a normally shouty woman, opinionated yes, a little bit keen to get my own way sometimes, and I like things done my own way, but I am usually so much more chilled out than I have become. And, Absolutely Yes to the guilt because of all that, which makes my moods up and down. Poor kids don't always know what's going on with me as i try hard to be upbeat and it confuses them I think sometimes. Not enough of an even keel.

msdj did you have the scoresheet when completing the PIP? was that 7 for mobility or care? it's so hard to score the right levels largely as we almost without thinking minimise how much our health conditions affect us, it's easy for us to say 'we can do that' when we can't and we have adapted what we do so we can now do it. Yes I can walk 20m, but that is with huge pain, slowly and with a stop on route. But I can do it. That means the answer is NO. because, you should be able to do it at normal speed, without pain or difficulty and without stopping. But my default position is, yes I can do that.

Do you have a record of your original application? It might be worth going through it, with the scoresheet, and marking down any areas that you think might need expanding, writing a letter and sending it in to support why you want the application re-considered.

matilda I am so pleased you got an ace application in, I bet they don't get bored, as they probably get some shockers of applications, probably makes a change for them to read a well written organised one.

msdj also meant to say, CAB are great. But, in my area, there is an organisation called DIAC (disability information and advice centre) that has staff specifically designated to help clients fill in PIP, it is worth looking for one similar in your area, as CAB staff are not necessarily disability/PIP application trained. And as matilda said, use her, and me, and others, too from here. I agree with matilda that I cannot see how, even on the limited information we have here, that you could not meet the minimum scoring.

Sorry, don't have my pad of paper, so responding ala tadaa! in piece meal

I Miss tadaa and her nearly indecipherable posts so much! Must get her back. And Losty, who I think of often.

Lolling at the new Iain killers known as Amazon n google.

Pain

So I'm back. Can't even type a line without a typo. Lol

Pain killers
I have nothing against those called Iain.

Queen, yes. Quite normal - for me, at least! (Just scrolled down n read your comment on rattiness.

After having my back op., I had a veeeeey heavy period. This was apparently absolutely the norm. post back op.s in women. Would b strange in a man - hee hee.
Well, my point is, perhaps it's also normal for things including hormones to be affected down there if your back is skew-whiff in general. Who knows. I'm no medic. Just trying to empathise. But I do know that many back probs are sleep depriving, painful, unpredictable and make simple tasks (like functioning as a mum, traveling by foot/ car and working, etc. ) difficult. Not to mention the fact that many are poorly remedied with huge, hanging question marks. I speak for my own. Anyone else? Anyway, this means that we might JUST have every reson to be on edge.

Back with multi-posting:
My day is being pleasantly spent measuring how much I wee and how much I drink. Try getting a portable cup out in time when you're busting, in a sports centre with a 6 n a 3 yr old. It's actually quite depressing. Not sure why.
(It's for nunny physio - to see my intake and ... 'output'?)

Yes, I think a certain amount of evil moodiness is allowable. Actually, I'm rather calm a lot of the time. I think the gabapentin stupefies me. Someone said that it is used by certain people as a recreational drug! Whatever....

I scored 7 for the care section and 4 for the mobility. I obviously didn't word it right as I would have thought I would have got higher on mobility

What sort of scores did everyone else get?

There is no DIAC around me. Not from a google search anyway.

Will email my mp. Won't hold my breath but don't hurt and wait for the reconsideration to come back saying no again and then retry but go to CAB to get it done properly. Can't believe it's taken 7 months to get just this far

On a plus note the new meds seem to have helped my nerve pain but not my back pain but it's a start and I am only on 100mg of Gabapentin three times a day so far. So another 200mg three times a day to go yet. Side effects I do feel a little woozy, very tired and having hot flushes. Just worried about the weight gain part so have bought loads of fruit to snack on

Good to see you again, just - & hope everyone's having an okay day. Well done with all the form-filling, matilda.

Definitely agree about pain lowering tolerance thresholds. I know I'm more bad-tempered, & also more easily distracted - don't take everything in that the kids tell me, & I'm usually pretty good at listening. It's not the meds., I don't think - more the pain.

Not impressed at all with the results (so far) of this injection. Awful pain today, all distinctly nerve type pain. And odd sensations / some tingling / discomfort in left leg again. Anyone any idea how that's even possible?

The radiographer / guy who did the injection knew it was the right S1 nerve root he was injecting, he'd seen my MRI & said that repeatedly. So how can it have affected the left leg? Anybody know how close the nerve roots are? He did take ages getting the position right & I have two puncture wounds, not one. But I've never had any pain, at any point, in my left leg. It's still a pale shadow of the right leg pain, yet psychologically feels so much worse because I don't know what the fuck has happened.

Hello

I've just come across this thread and wondered if my "condition" sounded familiar to any of you back pain sufferers.

When I was pregnant with my second child 5 years ago I suffered mild spd and some mild on and off back pain. Last year I had my third child. During my third pregnancy I suffered more with the spd and back pain. I didn't manage to get a physio referral until late on and traveling to the appointments caused me more pain so I stopped going

Since the birth of dc3 my pain has continued although I now wonder if it even was spd to begin with

My symptoms are -
Constant dull lower back ache
Aches around right pelvic joint
Right pelvic joint clicks when I walk
Cannot sleep on either left or right side
Right leg turns inwards
Backache increases a lot after a busy day
When walking uphill pain and pressure build up in my left knee
Right leg has completely given way on me 3 times walking uphill

I know these aren't all back problems but I wondered if anyone on here was similar?

I am in the process of changing GPS as mine is truly useless

msdj I didn't get a 'score' for my application, just an award. There is NO WAY you should have got a 4 on care. I will go take a look at the scoresheet see if I can get a copy to post to you, so you have an idea how they score you, what kind of things you need to be looking at emphasising.