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The Back Pain Emporium, Internet Shopping, Drugs and Dealing with Doctors. Thread 6.

(1000 Posts)
MatildaTheRedNosedReinCat Wed 10-Dec-14 18:56:36

For anyone experiencing back pain it can be a very scary 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

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 sad.

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 wine shock, 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 brew and say hello smile

This is our 6th thread, here is the 5th, which has links too the others:

HollyBerrie Wed 10-Dec-14 19:03:01

Jumps into new thread, waves hands, runs round whooping then lies down quick

May this new thread see some lovely pain freeish days for all! fgrin

MatildaTheRedNosedReinCat Wed 10-Dec-14 19:06:10

Good evening, ladies, let the thread commence.fgrin

This afternoon I have collected my shiny new Motorbility car and am very happy with it. If anyone has a Phd in computing please do pop in and help me tune the radio and all the other dashboard gear that looks quite suitable for a space mission fconfused. I can confirm that the heated seats and lumber support are a joy. The months of dealing with the DWP, the tears and frustrations have been worth it.

I have had a pretty busy day but got a lot done with Dear BFF who took me into town and got all my shopping done and carried it all, too. Everyone should have one of these. Waiting for the inevitable backlash but coping with usual meds right now. Keeping the Hard Stuff (oromorph) for emergencies.

Hoping to see all my old friends here plus anyone who is lurking but nervous about jumping in. Come on in, we are nice fsmile.

HollyBerrie Wed 10-Dec-14 19:13:44

Woo Hoo! Lovely new car! fgrin

TInselaffe Wed 10-Dec-14 19:23:52

Wheee! First time I've been a member of any thread that's made it past 1000 post and I've still been around to post on the next one. Surely cause for celebration?

berrie Potty training rabbits consisted of 1. Let the rabbits poo and wee everywhere, 2. DM freaking out, 3. Me painstakingly picking up every single poo and cleaning up all the wee and moving all the poos to a corner stuffed with paper, 4. Every time the rabbit pooed, picking it and the poos up and putting it in the corner until it got the message that poo and wee went in the corner.

We may just have had two very biddable rabbits...

frosty Excellent news about the op smile

Am loving all the nativity reports from everyone.

TInselaffe Wed 10-Dec-14 19:25:24

PS - most important thing sorry Tramadol and bad memory, had forgotten by the time I finished typing congrats on the new car Matilda! Maybe it has a handbook? I used to read my parents' car handbooks when I was waiting for them and bored as a child. IIRC they have sections on how to set that stuff up.

frostydom2011 Wed 10-Dec-14 20:07:34

Ohhh ahhh a new car. Nice one Matilda thank you very much for the new thread.

TInsel I've tried that method with humans, ie cleaning the loo, hoping they will eventually understand, After Poo CleanThe Loo. But it hasn't worked. Now I can't do shit (ha-ha) for myself, I'm amazed at what other humans are capableof when needs must. *disclaimer

I'm running out of tilidin. Big box of tramadol left though. Might try and get through with that as feeling more confident that short of a miracle recovery, I'm going to go for the op next week. Only concern is DD but it'll work itself out.

frostydom2011 Wed 10-Dec-14 20:09:05

*DISCLAIMER I never said unable to clean loo person was same as now able to do all person just in case you're reading DH

LostyTheSnowman Wed 10-Dec-14 20:24:01

Oh lovely new thread Matilda, very nice, lots of wheatbags I see and super comfy chairs and a motability car, how swish grin.

TIns great news about drugs and the doctor being helpful, the only way is up now!

So excited about the op for you Frosty, I hope it works well and you need never grace our shores again.

I'm back from my new consultant, he was very lovely and listened and made lots of notes. I had an x-ray of my SI joints which showed possible evidence of inflammation and some erosions so he ordered an MRI which they fitted me in for right that second shock. I should have used my insurance ages ago. I am sore now though because they did my entire spine and SI joints on a special spondyloarthorpathy protocol which took way over an hour. I am proud of myself for not filpping out, I did get quite claustrophobic. So, wait now until next month and another appointment and we'll see what that and an armful of bloods show.

MulledWineMincePie Wed 10-Dec-14 20:38:32


that's about all I can manage to bookmark sad

I'm gonna do some internet shopping to cheer me up.

magiandco Wed 10-Dec-14 20:55:09

Hi all!
Was wondering how you got on Losty. An hour in an MRI sounds tricky. Is there anyone that isn't claustrophobic in them?
Wow a shiny new car Matilda!
Frosty glad the details of your surgery are clearer - and well done at ringing the surgeon to clarify. Microdiscetomy are what both my friends had and they have done very well.
Mulledwine hope you can rest up tomorrow.
TInsel we have been potty training the hamster- getting there slowly.

MatildaTheRedNosedReinCat Wed 10-Dec-14 21:06:28

Losty oh the joys of private healthcare envy. Though in fact my current predicament was caused by a private surgeon. Hope you get useful results and some relief. Any advice on analgesia since the patches have gone?

I'm seeing lovely GP in the morning to discuss patches. Bit scared but worth a try.

Has anyone applied for a Taxicard? May be a London only thing but very cheap taxis for the disabled. My FIL has just got one then it occurred to me that I might qualify. Useful if meds preclude driving. I will call to ask.

Hope everyone is snug with hot water bottles and a glass of wine

Oh. Hollie, on the subject of weird pets, the car salesman's granny has a pet turkey strolling around her house fgrin. How we got onto that I have no idea fconfused

LostyTheSnowman Wed 10-Dec-14 21:27:50

I've been swapping the patch round every day, although that seems to lead to a little bit of eczema like skin in each spot it's better than nothing, although I am going to run out of skin fast because I now have 5 patches of rough sore skin that's not going down very quickly! I noticed that I've got quite dry skin everywhere so maybe it's a winter skin thing that's getting out of hand <clutches straws> <ignores advice on instruction sheet to discontinue if this happens>. grin I would definitely push for the patches with your GP, they have been brilliant apart from this recent skin thing.

I had three scans on my t-spine, three on my l-spine and three on my SI joints! It felt like forever I just held the panic in magic. It's a very British thing, staying in something that makes you feel awful because you are too embarrassed to make a fuss!

<wafts gentle soothing pain relieving waves toward Pavlov>

Toughasoldboots Wed 10-Dec-14 21:35:34

I have missed lots, just felt a bit too fed up to post really pavlov.

Can you give me a quick resume? How have you ended up going for more surgery? Hope it will help.

Hi to everyone else, I have been around for years, posted on pavlova very first posts when she had backache hmm

I had Cauda equina, GP refused to believe me, spent three months with three surgeries in Queen Square London.

I have permanent nerve damage, going to the pain clinic in Jan. Maybe I can come and see you pavlov? I felt quite isolated sometimes but hopefully you won't be in as long.

I have pregablin, buphranorphine and co codamol for pain, plus other regular meds.

I have had lovely PMs from Matilda to keep in touch, thanks.

So that's me smile

Toughasoldboots Wed 10-Dec-14 21:36:05


festivehopeandfrolicks Wed 10-Dec-14 21:37:38

Thank you Matildagrin

MatildaTheRedNosedReinCat Wed 10-Dec-14 22:10:00

Tough, it's great to see you here. I'm sure you must have lots of hard earned <unwanted> experience to share. Sorry life is so hard but as ever there is support and a lot of other diverting entertainment on here. I'm afraid we probably share some ongoing issues including pain which are no fun. Keep dipping in.fsmile

ColdCottage Wed 10-Dec-14 22:38:50

Drive new to us car today for the first time - very unsexy but practical and economical Fabia Estate. Great for getting DS in and out of with its fancy 5 doors and big boot for pram and shopping but my leg aches and I was limping a little after 2 x 20min drives hmm

Hoping as I get stronger it with hurt less.

Off to see consultant tomorrow. I'm off meds now but still slow to get up and aches in bum, leg and left side of back so not sure if he will want me back again on a few months or sign me off. The former I hope.

Also any idea if I have trouble again will I have to start again and be given a new doctor or can my GP just refer me back to current consultant?

For newbies I herniated my disc L5S1 a week after childbirth 7 months ago.

festivehopeandfrolicks Wed 10-Dec-14 22:43:24

cold it's very hard to predict seems to depend on the if they discharge you that's that back to the beginning so the decent doc's tend to keep booking in ever lengthening reviews that you can cancel if not required. my shoulder that wad operated on in 2010 is playing up so I'm starting again at physio (beginning of pathway) but they've got me in really quick and hopefully will have read the notes???

festivehopeandfrolicks Wed 10-Dec-14 22:44:22

lost well done in getting through scan I hope he comes up with as plan of action.

festivehopeandfrolicks Wed 10-Dec-14 22:47:48

hopes mulled pavlov is ok, wonder if kids will notice if the detailed tree ceremony details are slightly less onerous this year?? what about you guys decorate, daddy will help with the top, then we'll all have a family take awaygrin we didn't do this it was worse we went to the pub after

MulledWineMincePie Thu 11-Dec-14 09:08:12

tough is one of my oldest lovely friends who guided me through the absolute hell of medical professionals. So many threads from me, crying, unable to move, desperate for help in convincing docs it was not 'muscular' or ligament pain. if not for tough and a few others (denial and some others who dip in and out here) right at the very beginning of all this, almost three years ago to the day now, I have no idea where I would be right now. I had NO idea for example that we have the power to walk into a GP surgery and ask for what we want (and to be fair, I had no idea what that was without MNers who have already experienced it guiding me), for example 'i want to see a neurosurgeon'. it doesn't always mean we get what we ask for, but we don't have to rely on the hcp around us to do the 'best for us', we can work that out ourselves and ask for it. Sometimes, we don't have to, sometimes we have hcp around us who have the experience and understanding to guide us effectively, but sometimes/often we don't, so we need to take that on ourselves.

And that's why this thread is amazing. I had 4/5/6 threads or more with all the advice in these threads, from amazing, supportive and caring people. This thread brings on that together, gives us the confidence to know we don't have to just take the painkillers, and drag ourselves through the rest of our lives, desperately clinging on to some vague hope of normality. For lots of us, especially those who might dip in with early problems, this thread can make the difference between recovery and not. Many, many people have back pain in their lives, and for most it is temporary - for those people, this thread can help them through the acute phases and onto the next steps of strengthening core and recovery. For those of us that are not that fortunate, we can help others, and get support when we need it.

Ooooh, an outpouring of affection shock <hides from MN police>

tough I took the advice of people here and of my GP and I sought a second opinion, , and chose to go to Mr S in Queen's Square. My GP was delighted with my choice, said Queen's Square was fab. This decision was made because my local surgeon pretty much gave up on me and neither I nor my GP were happy with his decision, or felt it correct, who performed the last disctectomy, telling me that there were changes that were likely causing pain, but that he didn't think fusion at this stage would be better than pain management. He wouldn't go into detail of what was wrong, so I arranged to meet with him. He was bloody rude and said the same thing, surgery would not help me, but would not tell me what was wrong, or what treatment would help. He said it was not his area of specialism, go somewhere else.

My pain management doctor also saw the MRI that the surgeon saw, and was very 'oh, err, well, err, i think it will be good to get the surgeon to clarify that he doesn't think surgery will help...' after initially telling me (before seeing the scans) that it was probably all neuropathic pain, as he had already spoken to the surgeon. He then viewed the scans with me and changed tack!

So, following this, and an injection, and ever increasing pain, I saw Mr S in mid October in London (stayed with the lovely m who fussed over me and made feel very welcome). He had my scans up on the screen when I walked in, we had a conversation about how I came to be there, and he talked me through the scans. He showed me a 'healthy' disc. He then showed me two vertebral levels where the nerves are being compressed on exit from the spinal cord, by bone and thickened ligament, on one side. It was Really Fucking Obvious, based on the scan from April, that the local surgeon saw, that the nerves where not flowing as they should on either side, but compressed properly on the right side, at TWO levels. He told me I was more disabled than I needed to be, did some tests on reflexes and whatnot, and then recommended double level laminectomy and decompression. There are disc bulges at both levels, more so at L4/L5, possible that they were bulging more since the April scan, he will address that when in there if necessary. He booked me in for 7th January there and then, surgery to be performed by him, in Queen's Square.

That's not really 'brief' is it grin

MulledWineMincePie Thu 11-Dec-14 09:16:52

festivey love the new name! that's the plan this evening. DH will get the tree ready to be decorated this afternoon before he goes to work, short shift today. We will do hot chocolate and I will 'supervise' from the sofa, and chose the christmas music, as they do the decorating, then we will have pizza, then christmas stories before bed.

Now. Next big thing that worries and stresses me. Clubs. Both children having swimming lessons at 4:30pm. Normally, we drive straight there, have a sandwich, read school books/do some homework for half hour. Last week, we didn't go as I couldn't walk let alone take them. This is not a huge problem for DD, as she is coming to the end of an intense 3 week Every Single fucking Day swimming course as part of school activities (school for 8:30am every day), so she has had loads of practice - mostly learning to play water polo and using the diving pool. DS has not, and he needs the practice more as he is at the 'not drowning' stage, rather than 'swimming' stage. Also, today is very likely 'badge' week, when they might move up levels. DD missed this last time because she got confused between butterfly and breastroke and did a combination when asked to do breaststroke. This has meant she is now fab at both grin and is very, very ready to move to the next group.

What should I do? I am slightly more mobile that last week. Swimming is chaos, and full of MILLIONS of people as they have so many lessons on at the same time, but it's a really important skill to have, especially by the sea. They are unlikely to go again this christmas, as despite it being 'free' over holidays, it's just not gonna happen.

allypally999 Thu 11-Dec-14 09:30:08

I'm here too waving lovely people.

Sorry can't remember names as menopause stole my few remaining brain cells.

For any newbies I am 7 years post-surgery but still have referred pain and nerve memory (so they say) and am not entirely able-bodied.

Am about to have a wee op (something else) and have some tramadol to get me through as co-codamol made me sick last time. If I like it I will ask for it for my back too.

I am better than before op (just in case anyone is freaked out that I still have pain so much later) and I am old so spine is probably starting to degenerate anyway.

That's my story in a nutshell. This site is great as all these lovely ladies know their stuff.

Toughasoldboots Thu 11-Dec-14 09:38:16

smile That's so sweet pavlov, thanks.

I think that Mr S is the best, he is world renowned and trains junior Neurosurgeons.

I once got very drunk and posted that on his blog- unsurprisingly , he chose not to publish it!

I am so pleased that he is seeing you, he is the most modest surgeon that I have ever met and you will be in safe hands.

Food there is amazing too- they do a fusion curry menu.

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