The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a and say hello

Previous thread for anyone interested

Thanks for all the suggestions, the prn paracetamol and the hot/cold packs have taken the edge of it today. Seeing consultant orthopod tomorrow (must remember to put matching bra and pants on for a change!) The orthopod is part of team that includes pain management and neuros. So hopefully get a plan in place to get sorted.
Hope everyone else is coping Ok?

The SCS was mentioned once only and like you, I'm not a good candidate. I'm also properly phobic about the prospect of any more spinal surgery I start to shake and my teeth chatter if I think or read about it.

Very annoyingly my pension assessors spotted it in my medical notes and said I could only have the lower tier payment because I hadn't tried it and in their opinion it would be likely to help. My expert witness neurosurgeon strongly disagreed so I was able to use this to appeal. That was nearly four months ago...

Thanks all. Sorry to hear others are struggling just now too - it puts it into perspective. I really am so much better than I was, that I shouldn't complain.
Good to know that it can take much longer to feel the full benefit. My GP seems to think 6 months and it will be good!
Well remembered on the job/commute. I do about a 50-60 hour week, with an hour each way commute. I also have 2 under 5s. I am constantly exhausted, which doesn't help.
I am still on meds - much lower dose than pre-surgery, thankfully. Couple of gabapentin, couple of naproxen, paracetamol and the odd co-codamol. I now have a height adjustable desk which allows me to stand and sit as I need to, which has helped too.
Sorry for moaning - hope that folks are feeling settled this evening, and get some rest.

Hmm, only know one person who had a scs - didn't work for them sadly, but as with before it's horses for courses.

Matilda - I imagine I just sit and wait and hope they eventually get the sodding funding.

At the moment, my meds are working pretty well so I am doing the whole 'do I want surgery at all' thing, but I know that in a month's time they probably won't be and then I will be feeling that if someone offered to amputate my leg I would sign on the dotted line without a second thought.

There's also the whole moving house thing. It's my current CCG who won't pay, but the CCG where I'm moving too might. However, if the current one suddenly decide they will pay and then find out I'm moving and change their mind that could throw a spanner in the works.

Plus, we are buying a 450 year-old 'project' and as DH has unavoidable conferences the days of the actual move (move date is inconvenient but that is due to numpty buyer and his idiot lawyer) yours truly is masterminding the whole thing.

Have found someone to take DD for 2 days and I will basically stand/sit with clipboard directing nice men with boxes so not bothered about that.

However, I do want to unpack stuff before I'm forbidden to bend or carry anything and delegation is not my strong-point, so I won't be too happy if they call me tomorrow and say that they can do it next week.

Bloody hospital lost me in their system last year for nearly 4 months so I'm way behind where I should be in the whole thing.

Petrified about what moving is going to move re GP. Have a lovely set up at the moment with supportive GP and fab pharmacy and can't face the thought of having to start again with all that.

Tickle - its probably quite rare to have such side effects - I am the one in 10,000 you see on the warnings (literally haven taken part in a trial and been the only one to be ill) - I am very odd!

Tough we all have fuzzy days and don't let what stupid so-called "professionals" say get to you - we have all had the "its in your head" conversations with someone who deserves a slap. Oh and the "you are too sensitive to pain" one. Grrrrr Maybe we are sensitive to it cos its always bleeding well there!

Matilda my pharmacist is actually pretty good but I may have had the tramadol prescription filled somewhere else - I wonder if she would have spotted it?

Hope you all have a good day lovely ladies!

Where are berrie and frosty ... did I miss them or are they missing? I do get very confused (age not drugs lol)

Tickle Yes I've had injections. They were fine, I didn't get a lasting benefit from them so I probably won't have any more, but they really work for a lot of people. One thing I've been told since is I should have had an MRI first to investigate what is wrong where, and I wasn't offered one.

That bowen advice sounds terrible. I gather it's really important to take painkillers to stop your body learning to be in pain all the time if possible, as that is harder to stop even if you fix whatever is wrong.

good to see the advice about workplace assessments. I am really struggling at work right now and I maybe need another one.

argh! I wrote a really, really, really, long post, and it didn't post!!!!!! I am not sure I have the patience to write it all again

Haven't seen frosty/freedom for quite a while. Hopefully she's all recovered and got better things to do with her life.

Berry, hello lovely, are you ok? Hope DH is home and warming you up with cuddles.

We have snow this morning. Am waiting for my friend to take me to the park for a lovely stroll. Warm boots today. [ smile]

Has anyone any recommendations for treatment or drugs for SIJD? I had a SIJ injection four months ago and it worked well. After about two ish weeks it started to niggle a bit but this past few days it's even worse than it was to begin with. Am having to take oramorph and lay on a blazing electric blanket to take the edge off it. It's reducing me to tears every night.

I am i between pain clinics at the moment so I haven't got an appt for the new hospital yet. So can't see them

Any ideas on what I could do or ask for please?

Could you call the new clinic and cry to try to speed up the new appointment? It can work. Good news, though that the SIJ injection was helpful. I was told repeatedly that if an injection worked then they could do something longer term ( Radiofrequency ablation I think).

Worth a try.

pavlov Lost posts are infuriating. Where do they go?

I'm here - thanks for asking.
Not feeling so great so only lurking.
Very jealous of the snow - DB sent me pictures from your way this morning Matilda

Just called the new pain management team and I have an appt for next week. So that's come at a good time

There you are Berrie! Lurk away - jealous of snow? Clearly not Scottish lol you can have it

I know Ally It's because we hardly ever get any. I should be grateful really as the lack of - keeps it as something special and exciting. Still disgruntled though!

(I wrote another long post and lost it. Luckily, this time, I was smart and saved it first so you don't get out of it. It's shorter than the first one, so count yourselves lucky...)

I love snow. It's the best thing in the world. but only because we have it so rarely. I am sure if i had it all the time here i would not feel the same.

tough thanks for saying Hi to QS for me! I am up there in March, if anyone wants to meet for lunch, let me know, would be lovely to see you all in person. Thursday 6th or something like that (thursday is right, can't remember the actual date, will confirm soon).

Sorry tough that you have to wait so goddam long for your appt for injection. That sucks. How can that be helpful? I had partial success with epidural. Didn't last long enough for them to do it again, which i thought was shit, as was told 4 weeks would be considered a success, and when I said ti was around 4wks, told not long enough for 2nd one money saving bastards Is it x-ray guided? I was told that it is 50/50 success, but usually as not x-ray guided so guess work getting it into the right place. If x-ray guided the success is substantially increased. Can you be put onto a cancelation list.

ally thank goodness you stopped the tramadol.

matilda update. I am doing brilliantly. Did the school run without my stick today. Ok, it meant driving into the school carpark, and walking 100 yards max, slowly, stopping several times and a bit cautiously, then back again, but did it nevertheless! I have tidied the kitchen, and the bathroom (kitchen was shockingly filthy, not the loo or sink, they are always clean, but generally, walls, doors etc all grimy) today, and have just made muffins with the children, so am now feeling it hugely in my back, but it feels good to be doing stuff. I am trying not to overdo it, but it's feeling good to have movement again. Leg pain has settled, still some, but significantly less than before surgery, and apart from some twinges into the knee/calf, the pain is largely located in my back, butt, hip, top of thighs, around the groin area, so I think it may be healing pain.

I have a couple of raised lump areas on my scar, one at either end. Not inflamed, or red, or particularly sore, but harder than the rest of the scar, and the muscle is swollen (i guess it's the muscle? swollen around the area of the scar, but not the scar itself iykwim), I am pretty sure it's not infected, but is there is anything I can do reduce the lumps? I am guessing it's scar tissue forming or something? It's not particularly painful unless I press on it, and I am going to start using bio oil to help reduce the redness but any tips to get rid of the swelling and the lumps would be great.

Pav - you are cleaning already? My you are unstoppable - I barely clean now - 8 years on haha

Never took much notice of my scar but it was lumpy/ropey for a while and I did nothing and its fine now ... bio oil can't hurt though

You snow virgins lol - once you've slipped numerous times and had to dig the car out, etc the fun wears off trust me

Yes, as you say it I remember my scar was quite lumpy and much slower to heal the second time around. I guess it's healing on scar so a bit different. It's fine now though not a thing of beauty. I have a LOT of scars from hip and knee surgery as a child. Also some very strange triangluar shaped scars in a line on my left thigh. Caused by me sticking lego into my plaster casts as a toddlerwhich became imbedded into my flesh. Eughgh! Apparently I bacame quite grizzly and was taken to casualty on Christmas day where the poor doctor had the shock of his life .

The cleaning is awesome but do make tomorrow a rest day as it WILL catch up .

Berrie, lurk away, lovely until you feel like posting again. Snow was pretty in the park and the dogs love it. I struggled to get my warm boots on but worth the effort. I am super scared of slipping, though. It's pretty much gone now.

Elf, that's a pain that you just wait. Does it get brought up at meetings and voted for? I hate the fact that complete strangers make these life altering decisions without even meeting us. Moving sounds great. Is it way out of London or more Greater Londonish? [nosy emoticon] Finding a good GP is indeed a challenge. Can you stay registered with the old one until you find one? The move sounds soon. Exciting yet scary I imagine. I've hardly moved at all. Only once since we had DC. We were lucky to get our current house before it was too late. We certainly couldn't afford it now.

msdj good news re PC. I hope they are helpful. Can you take DH and a list of points?

Ally one good thing about London area is it's quite easy and normal to have a cleaner .

Better go, am prone to rambling as you all know.

It's been a while since I came on here, I must catch up with the end of the last thread.

Last week I felt something pop back into place in my back, and thought great, stopped taking the painkillers, and it's gone back into spasm today. Yay.

Does anyone get nightmares from the painkillers?

What are you taking? Tramadol gives me psychodelic dreams. I try to ration these It's good that it felt better for a while but not good about the spasm. Does massage help? It does for me along heat and drugs. Nice to see you again.