Back Pain and Internet Shopping. Thread Number 5.

[PavlovtheCat]

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.

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, 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

You will see just how much we do talk if you read our previous threads (where you may glean lots of answers about pain relief, surgery etc, best winter boots etc):
www.mumsnet.com/Talk/general_health/2049637-Back-Again-Back-Pain-Support-Thread
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

Feel I should warn you Ins about a serious side effect I have through taking the tummy protecting drug (I use Lansoprazole). I can eat more cake and pastry products without getting indegestion now! Let's not mention the whole packet of chocolate hob nobs
I usually have a banana or a bowl of muesli with my anti infalmatory. I don't think it needs to be a whole meal.
Sorry Lost about your sleeplessness.

I am having a very low few days. I am in constant pain, doctors just keep giving me pills rather than actually sorting the problem. I feel like I am not believed and just being given pills to shut me up and get rid of me. I have lost my job. I have no income. I can't claim any benefits. I have been in pain for 19 months now. It's not just affecting me physically but very mentally now. I can't see a way out of forward. I have no life. I don't do anything or go anywhere because of the pain. I just stay in my protective bubble

Hello everyone, I'm home! Lots of posting over the weekend but will single out my old friend, Losty for a special hug and large slice of . You are a legend,woman...twelve injections?! Holy Moly I thought three was a bastard. Do hope you get some relief. I wouldn't be at a all surprised if the steroids were having a systemic impact. Are you hungry? Try not to gobble up the entire fridge. Keep posting and fill us in on life in the wilds.

Ins an hour after eating will be fine. A big spoonful of plain yoghurt would do the job. Main thing is to take the stomach protector, though. Also get your GP to switch you to naproxen 500mgs twice a day. It's stronger and doesn't mess your head up so might help you keep the fantastically effective but total head fuck tramadol to a minimum.

I can report a lovely weekend away but sooo difficult.. Just so exhausting to do the normal weekend away stuff. Airports are a nightmare event with Special Assistance. Madrid, your SA set up is CRAP. I did well for the irst two days then hit the wall. By the time I got home I was at the point of zombification with tiredness. So sad and frustrating. But, I did have fun,motor. Laughs, silly girly chats about everything under the sun, nice food, big doses of wine and lots of art. Just can't manage it all yet don't wish to stop it. So that's a bit difficult.

Hey ho. GP in an hour so better get up. Have a good day, my friends.xxx

Lost hope if it is the steroids that particular effect is short lived whilst the target therapeutic effect is wonderfully long lived! Are you also ravenous? (only had oral steroids).
We have a new pet - a young hamster. In researching ways to keep him warm over night I discovered microwaveable heat pads (meant for small pets) that keep warm for 8-10 hours. I am very tempted to buy one for me! Apparently they are not pliable (like the gel hotty pads) but the best nights sleep I got was when I had left a sticky warm pad on over night before reading the instructions that tell you not to do that! However a heat pad that is meant for overnight use might be safer. Has any one already tried one? No good at links but they are sold in pet shops and on amazon as (for pets) snuggle safe, or (for humans) amazing health allnighter.

Msdj Sorry you are feeling so low. I was treated like you for years. What I've learned is that you really need to go back to the GP and keep going back regularly. Tell them what you've said here and keep at them until they do something more for you. In my experience, they do pills first, then physio before they refer.to a consultant.

Glad you managed to have some fun Matilda.

I have had physio. I have been passed from doctor to consultant to pain clinics to musculoskeletal units. I have had 6 spinal injections and 1000s of tablets. Yet I am still in a lot of pain. No one cares. Gps are useless have no time. Rushing to get me out and onto the next patient. I was up to 35 tablets a day and oramorph on top but I have stopped most of them. They just don't work

Oh you are much further on than I though then.
You'll have to wait then for the people on here who are more experienced in pain and long term conditions.

Msdj, before I type anything else I have to say I understand, I really really do, this is probably the only place in the world you can say that and have everyone nodding at the hopelessness of most medicine and doctors in the face of unending pain. Can you get back to pain clinic and be insanely insistent and keep plugging on, and on, and on, until something works? I have no answer though because I've not found the magic trick yet that turns stupid pain off. Have you tried something like CBT? There was a poster on another thread a while back (who I have to say annoyed the hell out of me but that's another story ) she had an awful condition which gave her a lot of pain but she did some hard core CBT and just managed to stubborn her way through it. I'll try and find it for you, her insistence that no one ever in the whole wide world should take painkillers because this technique worked for her wasn't endearing BUT if medicine isn't working a different technique might for you? I know that if I really need to do something, I can loop around in my head 'it's only pain, that's all, what else can it do, only pain etc' I don't think I can explain it but it's kind of a bullish 'it hurts, yeah? So what?'. I can't keep it up forever but it's something insane different anyway.

Matilda, helloooo! How are you, did you eat some lovely food? I'm just back from the very southern tip of Spain and I ate and ate and it was all amazing. Airports are crap though, I was with people who were robustly healthy and loved walking and you could see they didn't 'get' how hard it was to trail around everywhere with my case. I have also copied you and bought the same pair of Fly London boots apparently, we have great taste .

Oh yes, ravenous I have just done the most piggy online shop of all time. I think I'll pounce on the poor driver tomorrow morning .

Msdj I'm sorry to hear you are having problems. Have you tried rotating around the GPs until you find a good one? I saw three before I found my most recent, great, GP who is being proactive in trying to get my back fixed. You can also book double appointments with the doctors so they have the time to speak to you properly. I really hope things get better for you.

Thanks Berrie and Matilda for the food advice. I had a glass of milk last night with them so will carry on doing that. I put so much effort in at the beginning of this year to losing weight and getting healthy just by eating more fruit & veg and exercising before we start TTC and I have put it all back on in the last ten weeks :( Very annoying! I could bloody murder a chocolate hobnob though

Beware the chocolate hob nobs! I have dared not step on the scales since my back problems restarted in September.

Have seen all the gps at my surgery. Two said I had a muscular problem!! Which turned out to be wrong when they saw my mri scan so didn't trust them again. One is constantly stressed. Jittering his legs the whole time we speak and the other just gives out pills. They don't suggest anything. I always have to say what I want. Unless they disagree. Like the Butrans, they wouldn't give me those as he said it was only if I couldn't swallow oramorph which I can. Have had an mri nearly two years ago and they won't give another. They referred me to the NHS pain clinic who were useless and didn't even contact me. So I referred myself to a private pain clinic who gave me spinal injections, diagnosed anxiety and said to come back in three months!

Not tried Cbt or heard of it

Losty, did your friends not take your case? . I'm extremely lucky to have the best friend in the world and she looks after me like a Ming vase. Unfortunately she can't make the pain go away. I'm also lucky to have the nicest GP in the world who sees me every couple of weeks for a catch up to check I haven't topped myself and just space to moan. Patches are on offer if I want them but I want to hold off as long as possible.

msdj hello and welcome back. You sound very low, ( depressed actually), have you seen your GP about that? You really haven't been well treated. I get that they can't fix you but they could be nicer about it and just 'look after' you.. One thing that you might want to ask about is a spinal cord stimulator. I've been offered one but don't want it for lots of reasons but for many people they do help a lot. Worth investigating. Did the injections help at all? If so that's good because there are longer term treatments if they can 'hit the spot'. Keep posting if it helps to get the frustration and sadness out. We understand.

The info about the patches isn't correct. The whole point is that you get a constant dose of drug so avoid the peaks and troughs we all hate so much. Oromorph is for taking when all else fails ( in my case anyway).

A word of caution re the dreaded , when you can't move around it's very hard to shift the weight so watch out is all I will say. It's depressing enough being in pain without needing to buy bigger pants . Losty you are excused, steroids make you starving and without food you might get THE RAGE . can I come round to share your feast? My fridge is empty.

Injections helped for about two weeks. Now pain back with avengance. Not back to pain clinic until end of December. I just don't have a diagnosis. That doesn't help either. If they had a name for it I could research it. I am only offered things if I ask and I have run out of ideas. Yes I sm very low. I will be ok in a couple of days I should think. Oramorph does help but I can't do much if I take it. Ie drive etc. so can only take it if dh here to look after youngest and do school runs. I don't talk to anyone. That doesn't help either. Tried explaining to dh that I am low and he just says I know. I just don't know what to ask for or where else to go

I have been very good and had a plate of beetroot and thinly sliced tomato with a drizzle of salad cream and a packet of supermarket sushi (could someone tell me why exactly they have to always make one of the stuffed ones a random flavour, thai curry is lovely, sushi is lovely, rice stuffed with tuna thai curry is GRIM). and a pot of chocolate mousse. My friends and also my mum do a lot of lip service to the idea of looking after me then just go, 'oh it's not very far, we'll just walk to the next thing OK' and stride off whilst I hobble along behind trying not to cry. It's not ideal, alcohol helps .

Msdj I cannot believe they would rather have you swigging oramorph than give you BuTrans, they need to go back to doctor school and re do the pain module I think. I have a lot of sympathy for GP's it's an insanely hard job with huge responsibilities but they sound like they could do a little better. CBT is cognitive behaviour therapy, great for changing the way you look at things and let them affect you, I don't know a lot about how it works for pain but I think once you are used to being in pain you look for it more and it becomes a cycle. There is an awful lot more to it than that but it does help I believe. Although I am also a huge fan of prozac which is a bit of a shortcut! Persevere with pain clinic, it is very frustrating having to wait when you are in pain but with the info that you had some relief for two weeks they can go on and look at other things for you now, also probably write to your GP to tell him to give you BuTrans, that's what mine did anyway. I love him for that!

Oh Msdj you are breaking my heart here. I don't even have any new ideas for you but just wanted to say ... we understand .. the pain, the depression, all of it. My GPs are rubbish too .. if I am desperate I cry all over them and they will do anything then to get rid of you .. worth a try eh?

Perhaps a change of practice? I have thought of it but am scared next lot might be worse but you really need a proper diagnosis!

Lost do you use the BuTrans all the time and does it mean you don't need other drugs? My GP is very ready to give them to me but it's me that is hesitating because it's a definite notch up the ladder and I'm not sure I'm mentally ready for that. Having said that full doses of cocodamol, gabapentin, naproxen and sr tramadol is hardly low dose. Arghhhh, it's a headfuck. You give such good advice, I'm glad you are back < will I be evicted for gushiness?>

In terms of Pain Management, CBT seems to have been somewhat overtaken by Mindfulness. It's similar but mainly about living in the moment and allowing he pain to occupy a smaller space in your life. I highly recommend anyone going on a Pain Management Course but with an absolutely open mind. It's almost a year since mine finished and the group who finished ( a couple dropped out) still meet once a month for coffee, a moan and a general catch up. It's an odd group, we are very diverse but all have severe, chronic pain. Doing the course also opened the door to free Alexander Technique lessons and counselling. They have all been useful.

Reading this thread does make me realise how lucky I have been with the people I have had around me. But...I have been endlessly proactive. I have asked for specific things, pestered and begged. Refused to see people who haver been rude, didn't listen, made me feel bad. It's been and continues to be utterly exhausting but I will not give up. I will get the benefits, pension and other stuff that I am entitled to. I will peruse the surgeon who did this. The only way forward is to be clear about what you want, educate yourself on available options, get second or third opinions... Demand to be seen at a top specialist hospital and get answers. It will take forever but it is worth it for your own sanity.

I somehow don't think CBT would work for me. I am a born pessimist and would go defeatist even before it started. It's just the way I am.

Pain is pain to me. The further I walk the more pain I am in. It gets to a point where I can't do anymore as the pain is so bad

I will ask about the Butrans again at the pain clinic. I did ask to up my MST but my gp said that I would need to be taking 5 lots of oramorph a day to warrant upping it. Most days I have two or three lots but not everyday. Depends what I am doing

I have too much time to sit and think. Especially coming up to Christmas and not having any money is hard. I am not entitled to any benefits. I just don't know when I will be well enough to go back to work. Not this year anyway

Hi Msdj, sorry you are feeling low and rightly let down by the health system. I attended a clinic for chronic pain and fatigue management (I have ME/CFS, amongst other things) and was eventually (after some coaching on how to pace and put my needs further up the bottomless lists all mums have) sent on a Mindfulness course. I was the most negative sceptic possible so really did not expect it to help (much to woo for my scientific mind), but feared I would be thrown out if I did not attend and try it. Oddly it did help. Probably because I met similar others once a week and we chatted and supported each other. I was very isolated and low before that ( because I could barely walk or talk at the time) These other people understood, that we only had energy for a coffee and a short chat. But it also helped with the fear and guilt- you know the worry that we all do not admit to - mine related mostly to not being able to give my disabled child the level of care I thought he needed - and will need for the future. And yes it did help. I don't really practice mindfulness as I should, but over the course of the weeks I think it became part of my life, and helped me to look outwards for support and fun. The thing the coaching (for ME) taught me was to get better balance in my life. I was very limited so was putting all (literally) my energy into essential hateful chores, and feeling bad about the mess I could not get to as the chores built up. They suggested I get a home help and respite for ds, so I had energy for fun things, and spoil myself a little! I think we all need a bit of spoiling - hence the shopping.
So I would say chase up (or get the GP to chase up) the pain clinic. Insist. Do they have a chronic pain/illhealth clinic you could join in with?
I was on high dose oral steroids for many months for another condition some years back and put on some weight from the combined lack of mobility, hunger and poor sleep (why oh why does insomnia cause weight gain?). I now eat moderately low carb/ high good fat (not obsessively- ie no sugar or wheat or potatoes) and am back to my original weight, so rather than snacking on cake snack on strong cheddar or almonds.
I think my back problem might be sponylolisthesis. Anyone else?

Have you had an injury magso (sorry, I've got a bit behind on who has done what!) what makes you think you have spondylolisthesis? I have spondyloarthropathy but that is caused by auto-immune disease, it's bugging me most at the moment because it gives me inflamed tendon insertions too and my shoulders are now sore from using the crutches! Just can't win . Mindfulness sounds brilliant, I am by nature a proper tigger, all bounciness and insane levels of optimism, I've got to say it helps although probably bugs the hell out of the people around me at times!

I love my Butrans patches, as you say Matilda it gives me a constant level of pain relief, I started on 5mg but moved straight up to 10, I do top up a bit with tramadol no choice on day 6 because when it starts to wear off, OUCH. I think I could probably do with going up to the 20 but I'm trying to get by for now and hope that the injections help more and give me some wiggle room. I do realise that I'm not leaving myself many options for the future when I have a progressive degenerative condition! They'll invent something new by then right? Sadly not the end of tablets for me though because I take 6g of sulfasalazine a day to try and keep a lid on the base line illness, omeprazole for the rest of my life because I buggered my stomach with NSAIDs and now and ACE inhibitor because the Stupid Arthritis has decided to play with my kidneys as well. I think that's all of it anyway.

Msdj if you have too much time to sit and think had you looked at the online free courses. There is so much to learn out there. I am currently obsessed with something called Volcano Cafe which is a gang of clever people talking about volcanic eruptions, been fascinating watching the current eruption in Iceland. I love the Ted Lectures as well. I get a real buzz from learning new things, I try to think that I'm lucky to have the time to look at it all and live in an age where it is all free on the internet.

Losty you are amazing. Why haven't I thought of doing something like that?< shoots self in the head for general thickness>. So I have rashly signed up for a course on money management that starts in January. Very different subject for me so will be interesting. msdj anything that interests you?

Magso I agree about mindfulness, it needs work and willingness but like most things can work but only if you want it to. Pacing is paramount, too, and can be a total bore but keeps the angry lion at bay. I've tried like mad to accommodate the angry lion even though I dislike him a lot. Sadly he has no plans to move out of my house so my best option is to keep him calm.

This analogy was on another thread recently and I liked it so much I saved it. It sums my experience up so well. I always used a lion but this is even better: (sorry it's a bit long)

Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too may have a gorilla in their house.

Thank you Matilda. That makes so much sense

Lost, those courses look really interesting. I don't have a diagnosis for my back, but had an Xray done (and shown to me) by a chiropractor (who promptly moved away) about 13 years ago that showed spondylolisthesis, although I did not know anything about it (or remember the mouthful of a name fully) at the time. I had problems with my lower back since a fall down icy steps about 20+ years ago (not Xrayed at the time) adding to my existing regular upper back lock ups etc). The replacement chiro had some dire predictions about wheelchairs in the near future and actually worsened the pain I was in that I did not go back to that practice!
I like the gorilla analogy Matilda. I have a couple of them!

The gorilla analogy is brilliant.

Magso there are a tonne of 'spondy' diagnosis, so it could be quite a few things, although best as I, a radiographer, don't admit that I always get confused by them and forget which is which...

Online courses are a lifesaver, I've actually managed to get maths and IT qualifications from the OU that give me letters after my name since my work finished . Hoping to do a degree but I've put it on hold for now whilst I seem to be going through a ramping up of the disease, having a month of brain fog every new medication isn't really conducive degree level maths oddly enough!

I just had a delivery of an entire bedrooms worth of IKEA furniture for DS1 (he grew out of his bed!), it's a very good job that I have someone coming to help and the steroids appear to be giving me much less swelling in my fingers today. Right, I'm getting out the screwdriver and going in, wish me luck.