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Back Again! Back Pain Support Thread

999 replies

PavlovtheCat · 09/04/2014 17:01

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 Grin

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

OP posts:
Matildathecat · 09/05/2014 16:11

pavlov, glad the scan's done. Can you request a copy goes to your GP then cut out Dr Fucking Useless? Immediate link to shoes, please. I suspect a lot go on eBay because the sizing is so peculiar.

Special thanks to pavlov for her help in filling out my pip form. I had the assessment today and the lady said it was the best form she'd ever seenGrin. I should hope so. I took bloody hours. Hours of sitting I can I'll afford. At the end I asked if she thought I would get it and she said almost certainly. Let's hope so. Three assessments on one week has been way too much. Need to hide in my cave for a while now.

msdj, I really sympathise! I lost my job of 25 years, too. Are you getting any benefits? I've only recently discovered I could claim anything at all. I wrongly assumed that because my DH earns quite well I wouldn't be eligible. But pip and some ESA are not means tested. I hope the new meds help, but you need sorting out. I'm scandalised that your GP hasn't referred you to a specialist to treat you. 15 months of drugs is ludicrous with no diagnosis or treatment. As pav says your CCG ( formerly PCT) will have a pathway that should be followed. Young women or even menSmile shouldn't be left in limbo with potentially treatable spinal conditions.

Wishing you all an ok day pain wise.x

PavlovtheCat · 09/05/2014 16:25

matilda you are very welcome. I am a little sad in that I quite like a bit of form filling, I enjoy the whole having to evidence stuff, this is what I am saying, this is an example, and this is the consequence if xyz doesn't happen. (bloody good job I like it, as I am mostly doing risk assessments in my 'new' role!). I am glad it impressed the woman you saw! I am also glad she gave you an indication there and then of the outcome. I suspect that's a yes as it would be unprofessional to give you hope then make a completely different decision. And, actually, if you didn't get it I would be so surprised. Did you have to do any physical movements to demonstrate your immobility or was is a case of showing up and answering questions face to face to show you are not lying? Like, trying to read your poker face? Grin Hope you hear soon. You Rocked this week, enjoy a glass of wine, and as much medication and rest as you need.

good idea about the results. I am not hugely interested in his opinion now, as I am going elsewhere for the second opinion, so it makes sense for the GP to get it. nancy did you just ask for your results? from the GP? did you have to do data protection request for it or just ask? I really would be interested to see/read my report from last time, and from this time when it's available.

I agree about the sizing - these are odd sizing as I am normally between 5-5.5 shoes, but these are 5 and a little big. But a 4 would be too small I think and they don't seem to do half sizes. Insoles will be fine and I need some more padding to wear them. I can't wear them all the time as they are solid wood wedges, but they are actually lovely and comfy, and I am prepared for a little discomfort seeing as I am going to be good and take my meds Wink I will go get link from my ebay account.

OP posts:
PavlovtheCat · 09/05/2014 16:30

here are the shoes. I have them in cream/lemon stitching too Blush for the summer, and wore them two weeks before I had surgery (although my back 'went' the day after I wore them, i shall ignore that!]]

OP posts:
PavlovtheCat · 09/05/2014 16:31

nancy i meant, did you have to ask for a copy of your scan/report? not the results, it would be daft if we needed to to DP request for results!

OP posts:
Nancy66 · 09/05/2014 16:41

Pav - yes I asked to see a copy of the report which the surgery let me have and I've also requested a copy of the MRI scan on disc from the hospital which I have to pay £25 for but worth having.

Osteo has explained things to me fully now and it's actually not that bad. Basically the last vertebrae in my lumbar spine is fused to my sacrum when it should be segmented. It's something that can cause pain in middle age and surgical separation is a possibility.

Osteo said although it sounds bad it is far far preferable to a herniated disc

PavlovtheCat · 09/05/2014 16:49

nancy that's easy for him to say as he isn't living with pain! Glad to had some explanations, is there anything he can do to help? Rather surgical route, or suggestions for help?

OP posts:
Nancy66 · 09/05/2014 16:57

the suggestion is that I manage with painkillers for the time being and try to encourage the lumbar spine to move in a way it currently doesn't want to by doing certain rotation exercises.

Theory is that once that part gets used to movement it should 'loosen'.
We'll see !

Msdj · 09/05/2014 18:06

I have been receiving the basic £71.70 ESA since my SSP finished last November. I still am waiting for my Atos interview so I can be put into a group. I also applied for PIP on 30th October last year. I lost out by one point but asked for it to be reconsidered once the guy from DWP called me. He said I didn't need a dosset box for my pills. I explained to him I was on 40 tablets a day every day and that especially after taking Oramorph I could easily forget my name let alone remember if I have taken which pills and when!! I am still waiting to hear about that but they keep saying it will take a long time. Can I claim for anything else?

My gps just couldn't care less. They say now i am under the pain clinic that I am being dealt with. But all they do is give me two spinal injections per year!! I have seen all the doctors at my GP. All saying various things. One says one. another says another. All conflicting advice. I just don't know what to do. I am really down at the minute. But lots going on at home too

Somersaults · 09/05/2014 20:05

Lots of progress today in some respects. Obstetric Physio phoned to offer me a place on a seminar about pelvic girdle pain on Monday afternoon. I said I wouldn't be able to attend because of work as the head would have to pay for supply to cover me, but if they just gave me an appointment instead then she would have to let me go to it. so they gave me an appointment with a physio on Monday, late afternoon. I'm not holding my breath for magic results but at least I'm in the system with an appointment now.

I saw the GP this evening about pain and she thinks it is the SI joint which I would probably agree with. Pain at the very bottom of my back radiating out towards the left hip. There is a spot that is rather tender to poke with I suspect is the joint. She gave it a damn good poke too. She thinks the physio will really help (hmmmmm) but has given me 30mg codeine to take in the meantime. Which will be fab for night times and hilarious at work I should imagine as I think they will make me drowsy and somewhat spaced. We shall see. She said they won't want me taking them leading up to delivery but that hopefully the physio will have helped by then. I'm excited at the possibility of a comfortable night for the first time in a while though.

PavlovtheCat · 09/05/2014 20:37

msdj did you put in a proper appeal? I would speak to your MP if you have had no joy from your appeal after such a long time. I say that as I have a friend who was turned down, appealed, kept hanging on for both DLA and PIP and turned to his MP as he lost the mental ability to fight on his own, the MP kicked up a fuss about it. I also think the MP gave ATOS a kick up the ass for matilda too didn't he matilda? I would say you need to re-apply for PIP now. And don't fill the form in on your own, as it's not just about writing down what is wrong/how it affects you, it's about writing it down in a certain way to emphasise the negative and to concentrate on the areas they look at. it needs to be focussed, structured, and clear with evidence and that is so hard to do, so seek advice when completing it. If you are having morphine, and injections several times a year, then your mobility is clearly not great, and as you said, memory means you need more care etc. But it needs to be spelt out according to a checklist, like applying for a job, you need to score points and there is a technique to that.

tough i have my lovely blue badge! I do love it. Although I did get a £35 fine for parking in a 3 hour car park without displaying both bits. I appealed on the grounds of being a novice user and they just reduced it from £70 to £35. fuckers, so that's some way to paying for the rest of my parking Grin It's been fab for work though, as sometimes I can't get the bus and instead of DH driving me in, I drop DD off and drive in for 9:15am and can park in the all day council run car park literally opposite my work, 10 steps into my place of work. I don't always use it though, if I have a good day, and feel reasonably mobile I will leave the disabled spaces at the front of the supermarket for someone who is much less mobile than me, but there are days when I simply cannot walk to the trolleys without pain so I will not have a problem using them then. It also makes the difference when I take the children to their swimming lessons as there is a little known disabled section near the leisure centre which is round the back but two seconds from the entrance, or the main carpark is a good 2-3 minute walk if I am lucky, and I have to walk a mile once in the lisure centre to the changing rooms! I have no idea how the hell I managed for over a year unable to walk far, without the blue badge before I stubbornly accepted I needed one! And it makes going to certain places easier such as Eden Project and large children's adventure places, where the carparks are huge and far from the actual place. Eden in particular is spread across like a mile of carpark, and I went without the blue badge one time, by the time I got to the entrance I was ready to go home I hurt so much and the next time I had the badge, it took 30 mins and huge amounts of pain off the trip, especially at the end when I was in a lot of pain from hobbling around the place and could just fall into the car.

msdj you can apply directly to your council for a blue badge. it is easier and more straightforward if you have DLA/PIP as it's automatically approved once you apply then, but they still will consider your mobility even without the DLA/PIP as they will call you in for assessment. I know several people who have a blue badge but no DLA mobility (their issues are bladder/bowel related rather than mobility related) and they applied direct. Although it's not a huge amount financially to help with the impact of your pain, it might help a little? If you drive, you will have free parking, and if you use public transport, buses are free (possibly after 9am?) and you can get a discount card for trains too if you use them often.

OP posts:
PavlovtheCat · 09/05/2014 20:37

nancy you don't sound hugely convinced about the physio?! Grin

OP posts:
PavlovtheCat · 09/05/2014 20:40

somersaults 30mg of codeine will absolutely goof you out a little, so be careful if you need to drive as it might take a day or two for the drowsiness to wear off. I hope it helps you sleep. Doesn't do that to me, it wires me, although not as much as tramadol Grin

I have a poorly boy who had a long nap this afternoon. He is currently next to me in bed, pawing my face, happy as a pig in mud that I have let him sneak into bed again 'just this once' 'i am poorly still!' he said giggling his little head off. Admittedly he is only feeling ok as I have dosed him up and soon that will wear off, but, he is a sneaky one Grin

OP posts:
Somersaults · 09/05/2014 20:57

pavlov thanks for the heads up. I've had tramadol in the past for a couple of weeks for my back but I really can't remember how i was on it. My main concern about codeine is the probable constipation that will come.

Somersaults · 09/05/2014 20:58

And I hope your little man gets well soon. It sucks when they're ill.

PavlovtheCat · 09/05/2014 21:07

Constipation is not inevitable if you prepare for it. I don't know what lactulose/movicol type stuff you are allowed to take but check that out, also remember to drink plenty of fluids, eat fruit as often as you are able, and, can you drink prune juice? Is there something that says you can't drink prune juice in pg? or is that pineapple juice? and move around as much as you can allowing for pain. Exercise helps to keep the bowels from being sluggish. I learnt all those things from horrible experience! I took something like 3 different meds that all slow things down, as well as zero exercise and not eating too much so nothing was being pushed through. It was the worst thing ever ever ever and never again for me!! I now take tramadol daily and slow bowels is a side effect, along with codeine most days to top up in the evening, and I don't take movicol very often now as I ensure I drink enough liquids (still not as much as I should) and eat fruit/drink prune juice if I feel it all starting to slow a little.

OP posts:
Matildathecat · 09/05/2014 21:44

One big slug of lactulose at bedtime works for me. Not that pleasant to be around but hey ho.

And codeine is vastly enhanced by paracetamol so if you have been prescribed codeine tabs take each 30mgs with a paracetamol. If cocodamol then paracetamol is included anyway. But you could for instance take one codeine 30mgs with 2paracetamol, or one cocodamol with 1 paracetamol or when push comes to shove, 2cocodamol. Hope that makes sense.

denialandpanic · 09/05/2014 22:03

sooooo, went back to gp today as improved but not much.She is convinced that pain is not necessarily (sudden onset, classic getting from stooped) from arthritis and was going to refer me to nhs spine guy to rule out disk issues. I said I've got private health insurance and because she doesn't think it's the arthritis they have agreed to cover a consultation and diagnostic tests. so early next week thenHmm

denialandpanic · 09/05/2014 22:06

of course if there's any indication that this episode is due to my "chronic"condition private health will be all bye bye nice knowing you. despite the fact that I had the policy years before the arthritis started. how in earth do people (tories) think this kind of system can replace the nhs???? They don't want to touch anything that's not easy /curable

Matildathecat · 09/05/2014 22:06

Well that's good at least. Sorry you are in so much pain. Have you got proper analgesia now?

denialandpanic · 09/05/2014 22:07

60mg codeine four times a day. diazepam for night time. She offered tramadol but it makes me hallucinate.

Msdj · 09/05/2014 22:09

I did get a blue badge about a month or so ago. Never thought I would be granted one else I would have applied sooner

Did the forms for pip by myself. The DWP called and I asked for a reconsideration. The reconsideration was done three months ago and I keep chasing every week. They said I had gone to the bottom of the pile again. Might try my MP but doubt he will do anything but worth a try. Thank you for your advice x

denialandpanic · 09/05/2014 22:10

just reading back I use laxido for the constipation. i think it's generic movicol? works very well without the hmm flatulence I experienced with laxido. matilda I think you deserve a holiday after the week you have had!!

denialandpanic · 09/05/2014 22:12

msdj,I work in the public sector.any mp interest generates an instant review by a "higher up". of course atos etc all are a law onto themselves but it definitely won't hurt.

Somersaults · 09/05/2014 22:17

I am planning on drinking, drinking, drinking (fluids, not wine!) to try and keep things moving. I will look at prune juice too.

And good advice about taking the paracetamol too, thank you :) the GP said I could take paracetamol alongside but she implied that I should take paracetamol if it's not too bad and the codeine if it was having no effect, she didn't mention taking them together.

Matildathecat · 10/05/2014 09:43

msdj, I did indeed see my mp after many months of totally useless chasing up ATOS. He was excellent ( glam and well known Tory;)) and did indeed give them a hard kick up the arse. I received appointments very quickly indeed. Pm me if you want any info. I took along a letter, too, detailing my issues. The main thing was to concentrate my concern solely on ATOS who were dealing with all three of my claims. I asked for his help rather than just go along and whinge. Anyway, as I say, it made a big difference and he promised to help if I got rejected, too.

I'm sorry you've had such a crap time, you sound really defeated. We have all been there and will definitely support you and may even help Smile.

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