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

maizie yep still awake! you are not moaning. God no. You seen my wingeing posts right? my pain is not always intense, sometimes it's low level, but, like yours, constant, no letup. And that is fucking grinding on the soul. There is only so much constant knawing we can take. And, from my experience, I have found that if I can't decide if it's my drug tolerance increasing, my pain levels increasing or my tolerance levels decreasing, it's usually actually the pain that's increased. Do you have any ideas why? Is it from the surgery, 'recovery' pain? Or more than that, something else? the fact that you have gabapentin means there is nerve pain, and while that's a good drug to have, it also may well mask something getting worse? Just my thoughts on nerve blockers and not sure if there's any truth in that.

You have a lot on your plate! Is there anything you can do about the school? Can you go on a waiting list for better school? How long would you wait? Could you home educate while waiting for a better school to come up? Your second choice if the first is a noon? It's tough because you could potentially swallow need for improvements in some academic areas if their SEN provision and support was sound. DS got in to our first choice, which was bloody good as it was our only choice! We took a huge gamble, but decided that if he didn't get in, we would HE somehow until he was offered a place in that school, luckily we can work around our jobs/childcare, but HE doesn't have to be 9-3. However, we are in Devon and it's not so tough as in London and other SE areas. You in SE England? I can't remember sorry, memory is actually shite!

And well done on doing well in your last coursework! that must feel good though, even with everything else, you have worked so hard, it will pay off if you keep going. Boo to problems with credit card, hope it's an error and not another pain to deal with.

x 2.

loon I can't remember if you had your interview for the course you applied for? Did you have it? If so, i am sorry if I missed how it went.

thanks for the cake pav, oh yes do you know about the interview yet loon, fx have to go, kids posst later xx

Not me with the interview! Can't remember who now, I also feel my memory is going. No medication related excuses, either, as I haven't been on much of the strong stuff!

Have had some great days out with the boys this week & my leg pain has been really good - hardly went below the knee for nearly 2 weeks, no terrible shooting pains, able to stand for much longer. Think I overdid yesterday at wildlife park, though, & the calf cramps are back. Gentle day today with friends round in a bit.

Hope everyone has a good day. Want to use a bunny, so .

oh no, terrible memories all of us- perhaps it was like or denial?
comedy was excellent, went to Ping Pong beforehand and had cocktails and dimsum. AND wore my new red Fly ankle boots for the first time- very comfortable but also think they look good- someone asked where i bought them on the way home.
phoned doc and can increase the gabapentin gradually and hopefully with an aim to lessen and stop the codeine.
hope evryone had a good day today xx

I think it was 17 who was going for an interview for a course to learn how to be a speech therapist. How are you doing 17 if you read this, am I right about the course (perfect excuse for confused bunny) .
How is everyone today? I am not too bad despite doing quite a bit of housework including scrubbing a mouldy wall that was hidden behind the sofa.

I've had a crappy few days pain wise but did get up to London yesterday with my lovely friend aided by huge doses or drugs and steely determination. DH has advised a day off today. Off from what? Anyway he's going to take me out later on. Can't remember a time when this has been worse really but hey ho.

Hoping everyone is quiet because you're all having fun. live scrubbing walls before 9am is pretty hardcore, hope you are putting your feet up now. maizie comedy night sounds like fun. Any news on spinal referral? Red boots sound great. pavlov, I'm beyond jealous of beach trips. I love Bantham best of nearly anywhere and urgently wish I could be airlifted there immediately.

Now it's my turn for trying some bunny ears!

And yes, I'd love to buy Bantham! Now that would be a cool purchase

to everybody- Easter is here and the chocolate feast can begin haha!
Not for me actually because i've put on half a stone in about 3/4 weeks, meds? or just not being able to exercise perhaps. Am now 9 and a half stone which feels too much, very annoyed as before my op was just going under 9 and nearly where i wanted to be. I will be motivated now i feel a bit crap about it i suppose. It makes one feel bad when clothes dont feel comfy any more.
pavlov you have said exactly what my dh did the other day- that will try HE if terrible school choice given. But actually think this text we got about the school offer was from the mainstream application we did as backup- so almost deff dont need to even worry about it coz his statememnt is finalised and he is in the SEN system. I will ring the woman about confirming this after Easter. so sorry to freak out needlessly!
The festival looks awesome pav- it will be such fun and you deserve something to look forward to.
my dh had very kindly booked tix to take the 2 kids to see MIL but she is really ill now in hospital with kidney infection (about a weekk in i think) so he may not go. Or he may go just for couple days. So I may have to decamp to parents house instead to get these essays done. Or the library but it is a bit difficult for me there since my pain worsened- not set up for lying down intermitedly or hotties!
ah yes 17 well remembersd like, fx for you then 17 that you got it.
Not too bad today so far, doing statistics home assignment and later will go by bus uptown with ds to get ultralight down coat from uniqlo.
cooking homemade chicken goujons for the kids for lunch, hope you are all having a good day, pain-wise and entertainment-wise,

Bit of a turn around here. Letter arrived from consultant and says well mmmm the opposite of what he said in the phone.They are going to offer me 1) adalimumab (humira) an anti tnf 2) pain clinic and 3) an earlier clinic visit. This is compared to on the phone "we can't do anything else for you, I will do a pain clinic referral if you insist but they will suggest opiates"

I think I've won the Rheumatology lottery

oh and I found misled trying on fly London shoes this week......it's catching

myself not misled

Just to keep you on your toes, denial? Bizarre. How are you doing? Shoe shopping a good thing. I can't find a stockist locally. Spring footwear is so tricky.

Waves to all and whispers very quietly, I'm feeling a bit better today. Have to go out to a birthday lunch which I'd prefer not to and have 17 for lunch tomorrow so plenty of scope for a relapse.

happy Easter.

Happy Easter! Having had an easter egg hunt around the house, and porridge with some mini easter eggs melted in, I am now back in bed. Back pain is reasonably manageable, there, lurking but ok. However, I am struggling with The Most Awful Fatigue I have ever had. On par with 2 hours sleep a night with a non-sleeping newborn. I can barely keep my eyes open, eyes watering constantly, napping on the sofa in that horrid unable to control it kind of sleep. I have done a lot this week, not huge amounts, but stuff every day to try and keep active, and I guess it's taken it's toll. Did 3 lengths in the pool yesterday (to try out my new waterproof headphones, they work quite well, needs some tweaking), as we all went for a swim and it seemed to have loosened me up a little, certainly my arms enjoyed moving (front crawl), but boy was I tired. 3 bloody lengths anyway, I should be grateful that my pain is reasonable and stop complaining. DH is working today, this afternoon, so early sunday lunch for us all then not sure what our plans are, maybe a walk to the park at the end of the road.

denial WTF? I mean, that's fabulous, but confusing?! How do you feel about taking the meds now, now that you were told no, then yes? Does it make you feel less confident about taking them, or are you very pleased, because, really, we know it was purely about the cost from their point of view wasn't it? But what a head fuck. Are you tempted to by some Fly shoes then? I would say, if you can try them on, find the ones you like, the right size etc, then go to Amazon to buy them. They have offers on them all the time, free delivery and free returns. You will absolutely get a good deal, but you might have to wait a little as they do deals on different ones at different times. Or, see what offers they have that you like, then try them on before ordering to make sure you like them we have two places to get them here in Plymouth, but they only do the popular boots, and one style of shoe so any of the more unusual ones they don't have (sole trader and office). But, sometimes they do offers on their online sites too.

matilda 17?! you don't mean our 17, do you? but actual 17 people? that's crazy, will you be doing that yourself or will you have help/will you be helping? Hope you don't find that too hard today, and you get to rest later. I find being around people quite hard at the moment, as I am always having to sit/move/sit/move and feel like such an old woman. I have accepted, for now, I need my crutch most of the time, but I am so aware that I stick out badly with it. Went on an easter egg hunt with the children on friday and some of their school friends, felt like I held everyone up and tried to keep up with them, and then sit drinking coffee for a couple of hours afterward. it was lovely and I should probably have bailed earlier than I did, but I wanted to just do normal things. Not even excessive stuff, just walked for 45 mins, slowly. And it wipe me out, I was in bed same time as the children, and pretty much went to sleep. So, I am sure today is going to wipe you out, hope you enjoy it though and glad you are seeing some improvement in pain levels, hope it lasts.

To everyone else - have a fab Easter Sunday. Eat too much chocolate, definitely. And positive vibes for a low pain day for everyone.

Hiya girls, hope you are all having a nice Easter sunday.
Fly boots/shoes that I got were from Amazon and about £40 so i think good price. I ordered 3 and sent two back. Quick and easy. They have a really large number of styles and colours
I can't lie I am not having a great Easter. Had a row with dh yesterday- started because we both have stuff to get done this weekend and he was going to do his late- and then all night basically- on sat but I suggested going earlier in the day so he didnt have to mess up his body clock and go to sleep at 5am and then sleep into the day. The row started coz he didnt want to give any idea when he-d be home. He left at 4, was gone all night and came back at 8am, at first refused to sleep, but is now asleep and will be for all morning and some of the afternoon as he hasnt slept all night. During the row i let slip that i dont feel he is supporting me anough- this is why he wouldnt sleep as he said "i dont want to let you down"- I said anything i could to reassure him so he would sleep but really?? he didnt want to let me down but he's fine with staying out all night when I had said i nneded some time yesterday to do work for my course. And how is it helping me to stay up and out all night, no text nothing so i dont jknow what the hell is going on? yeah that was really not letting me down. sorry to dump on you guys but i am so livid and mad as it feels like he has just taken what i said to go into a passsive agressive state of guilt and still get his own way AND make me feel shitty. and when he came in he was in a massive sulk and when i said are we ok he said "no we're not ok" but was surprised that that made me cry.
Anyway I only managed to do a little bit more of my home stats assignment yesterday as i was doing it while looking after the kids. Theres bugger all in the fridge to eat so i guess ill be taking both kis out to get food and by the time i get help from dh today ill be pretty messed up. its tricky to try to do writing while lying down but i ll just have to try because time is running out and i have this stats thing and 2 esays to finish before 30. no pressure then?
hope you all have lovely wether where you are coz its bleddy horrid and dark and cloudy here.
ok vent over, apologise again , just really grtting to me today.
soooo glad to har you aref feeling a bit better matilda, long may it last
pavlov that fatigue sounds awful but your last few days do sound very active and busy- partic the swimming- i find that makes you feel crazy tired even if just do a bit. have a morning snooze and hope you feel better.
dh's mum is feeling better but still in hospital and very ill. poor thing, hp she is better soon, is on the mend at least.

ps trying to decreas my codeine and took one less dose yesterday (only 2x in the day instead of 3) but have caved already this am and taken some as I have to look after the ids now and dont know how long for. hottie is filled of course

Have no idea really.Best bet is they actually READ MY FILE.Sorry for the shouting but I do wonder how much money is lost in the nhs because hcp are not given time to review patients histories thoroughly and rely on patient provided summaries and the last letter on the screen. Also pain clinic would be likely to refer me back to him because I hadn't been offered all the available options?

I think I will try it. My only concern (and these are worst worst case scenario) is I want dp to appreciate the risks.If i get a life threatening infection or cancer I don't want him saying I never told him this could happen.

re fly shoes I was in a random shop in nearest big town and tried on the pair lost bought and some sling backs. they looked great but hurt me. I don't do pain for fashion

Have had an ok week.Not much work out driving just took pain killers needed and tried not to fret about quantities / escalation. still found myself unable to zip dresses when shopping (couldn't turn) etc. sometimes it's the little things that really hammer hone

Matilda hope 17 for dinner goes well pavlov try not to worry one day at a time. kids don't notice half the dig we fret about

cross post maizie, you and dh have both got so much going on

forgot to say, that's really good about the turnaround denial- yes the fact they changed tack may be worrying about the system but you gotta take what you can to try to sort it out. Perhaps somebody looked over your case and thought it wasnt handles properly- sometimes things get reviewed by people in charge. You could ask i suppose but the important thing is to have options to try. What do you mean by the risk for cancer? I understand why infection would always be a risk with anything invasive. Any op carries risks- the blurb they read you about a cs is enough to make you go " oh I can probably get them out the normal way, don't worry"
and yes- both of us have too much going on and neither of us is "string" itkwim. I would say him psychologically and me pysically but i an a bit messd up both ways tbh.
I just need to get these last essays in and finish the summer term. maybe when im back a bit more routine will help us organise our time withoiut so much rowing.

maizie that's just really hard for both of you. Hope you can make friends with DH very soon.

Oh how I wish I had 17 coming for lunch instead of 17. I'm pooped already and DH has done almost nothing. Gone out with the dog now. I'm on strike. We have a 6.8 kg rib of beef in the oven plus a whole side of salmon so we won't be hungry! Plus I'm concocting canapés, rice salad and potato salad. Others bringing stuff so we'll have far too much.

Have a great day everyone.

ok, I have a question, or rather a ramble for you to help me work out the answer to! You know what i'm like right? Can't say anything in less than 4 paragraphs

I have so far been 'under' a neurosurgeon as a result of disc prolapse, which has caused nerve damage. I am presuming the nerve element is why I have been seen by a neurosurgeon rather than an orthopaedic surgeon.

It appears the prolapse is now rectified. This might, or might not be accurate now. I do however have a vertebral slip (also known as spondylethesis or accurately for my particular direction of slip retrolysthesis) which some (unknown) degree of movement. This is, as far as I can tell, not nerve related, although it seems the movement of the vertebrae catches the nerve from time to time.

So now, if I were to have any kind of surgery it would be fusion surgery, to fuse the bones together. So that is orthopaedic surgery right? I was originally told, when I first had issues, that fusion was orthopaedic (and no orthopaedic surgeon does fusion in my hospital). However, the neurosurgeon who operated on me does spinal fusion if and when required, he would not be referring me to orthopaedic surgeon.

But, it seems that orthopaedic surgeons can also do discectomies/disc related surgery as that and nerve related surgery go hand in hand.

So. When I get my second opinion, should my GP be referring me through the neurosurgical route or the orthopaedic route? Or, at this stage does he not decide, and that is decided by someone else (i.e. the spinal pathway route that decided where I went last time).

I ask because the surgeon that I have in mind, well there are two, one in my area, and one in next city, who is the best from reputation for disc surgery, are orthopaedic surgeons. The one in Exeter, the 'best' one, he is known for fusion/disctecomies as well as disc replacement (i don't think I can have that due to the vertebral movement).

I don't know if the orthopaedic surgeon in my area does fusion as they stressed to me at the spinal pathway that there was no-one who did fusion for a period of time, and this surgeon, he has worked there a long time so it can't be him. He has reputation for doing hip ops, but also spinal, so must be though? anyway, that's just me working it out in my head that last bit, sorry.

If I need to ask for orthopaedic surgeon opinion on fusion I will talk to my GP and tell him who it is I want to see. If I have to wait an age, sobeit.

Thanks!!!

pavlov I think I would ask your go that one....

maizie the cancer risk and infection risk are associated with the drug (immunosupressant). They are a relatively new type of drug (1997) and the long term risks are not clearly defined. But they can make you feel "normal"and sometimes put the arthritis into remission.

oh ok thanks for the info denial and sorry for my ignorance/not googled it yet. It sounds like it could well be worth the risk- and even that there may be no risk associated just that they dont know yet.

pavlov that sounds like an unsolvable conundrum in the wrong hands- but I bet if you find the right person to handle it the "problem" may well dissapear- ie someone who will just use common sense and knows how to manipulate the system to suit you rather than the other way around! I would think to go from wherever both orthapaedic and neuro are sourced. On the other hand maybe ortho if you want that guy to do it. I think you need to speak to someone working on the frontline as it were to advise.

pavlov, I think I'd be asking to see the Exeter chap. Or you can ask for a London opinion. My experience was that the second surgeon looked at the post op MRI and saw a whole lot more than surgeon no 1.

The 17 have left. Hallelujah. It was nice but just so much work. I feel a bit drunk but need drugs now. SIL has a prolapsed disc but so differently. She keeps saying 'oh, I know I'm not the same as you' which is actually very annoying. Pil basically both annoying in different ways. Does anyone else have long diatribes on the ghastly state of their satellite dish? No? Just me then.

Must go, more clearing up needed. Actually loads done by various rellies.

No more chocolate. Dread the scales tomorrow.

I have chronic back and joint pain and cannot take AFs due to GERD. Anyone any suggestions?