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

[MatildaTheRedNosedReinCat]

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 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 wine , 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

This is our 6th thread, here is the 5th, which has links too the others:
www.mumsnet.com/Talk/general_health/a2203923-Back-Pain-and-Internet-Shopping-Thread-Number-5

I'd been ignoring it festive. For nearly 2 years. But had been thinking it was pnd. It wasn't; it was that everything was very difficult and painful. I hadn't really noticed pain iykwim, till the Si joint stopped me walking easily and the wrist stopped me doing anything with my arm. Then one day I realised I couldn't lift that arm off my chest when I lay down and could feel all round the bone under my arm pit.

Currently I can't chop potatoes etc easily nor lift a large container from the fridge. Or easily load the dishwasher.

It sounds really stupid seeing that written. But being only 38 and working with much older women who really struggle (and moan a lot) plus the fact I'm slim and bendy made me think I was just not tough enough. So I kept pushing through not really thinking anything of it. I realised it might be time to not be at work when opening the doors at school left me in agony and I couldn't support a child in the swimming pool.

Pain for me is appendix pain. Not even labour was that bad!

Sorry wallowing a bit and feeling frustrated!

Hi thanks for the welcome several pages back, I've been so busy I didn't get a chance to reply straight away.
I had an appointment With my consultant this week who and referred me to yet another specialist. I'm also booked in for a repeat x Ray, MRI and neurological monitoring next week. They are concerned my already pretty poor nerve function down my right side is deteriorating further so want to move quickly.
They also want to speak to me about a possible discectomy does anyone know if they can perform this on multiple discs simultaneously? And how long a recovery time I would be looking at roughly?
I know I could search but Google is not my friend, I try to avoid it if possible

Wow - Mathilda, thank you! How funny I sometimes do do that when I'm in a "I both want to be steam rollered and feel like I have been steam rollered" moment. I will try that. I've heard of the Alexander technique.

Gp seems to think esr was indicative of no issues, asked again about lumps and bumps (???) and felt my upper ribs and neck. (In response to AS) I'm guessing that a rheum might test for that gene?

Thing is I'm trying to get better - I bet by the time I see a rheum I'll feel ok?! Will it be useless then?

I've got to get better as I want my life back. Getting better to me seems to involve physio, swimming and some core yoga work, and possibly Iron.

I think I've undoubtedly had the Costa thingy. I convinced my self I had Ms and learnt about the MS hug

Mama sorry, not ignoring you but you have issues that aren't in my area of expertise!

clarella you are speaking words that lots of us on here understand! It is baffling and wrong that we are like this at our ages (I am 40 now but have been whinging on about my back for nigh on 20 years and now struggle to do just about everything, stiff painful hands and shoulders make me want to scream with frustration). I thought I was depressed then realised that it was perfectly normal to be fed up and miserable through pain and lack of mobility. I gave birth to a 10lb baby with no pain relief without making a sound but sometimes the pain in my hands makes me fall in on myself and want to weep. Not bloody fair for any of us.

Thanks lost it

Does naproxen make peeps a bit sleepy?

*lostin.... Does naproxen make you dopey?!

I don't know, it's one of the one things I don't take! Your GP is an arse (sorry) negative ESR is just the start of things and having nodules is very RA but not all the other many millions of differential diagnoses that cover some of your issues. Get in and get pushy about having HLA B27, mention SI joint pain and x-ray and get to a rheumatologist. Sometimes it is helpful if you can find the £80-100 for a private appointment if it comes to that to get a foot in the door. Anyway, morphine definitely makes me dopey so I am going to bed. I will catch up properly tomorrow with everyone.

I don't think I'd realised how bad it has been till it's sometimes started to feel a tad better.

I went through a horrendous phase where I had pins and needles esp in my hands, then couldn't feel anything (hence worries re MS) nor tell the difference between a wet or dry sock. I think my blood has been a bit off, I had too many red blood cells for a while, pretty sure because I wasn't breathing properly (too scrunched up) so my body though I was living in the Andies.

I've been expanding my chest for the last week (breathing, stretching) which has helped a bit though painful. Not worn a bra for a week either (too painful round ribs and decided it was a good idea!!)

I wouldn't worry about feeling better before appointment. If you do brilliant but please still go. These conditions wax and wane and that's part of how they can really mess with your head. Gentle regular exercise is ideal. Motion is lotion etc. The best thing my rheumy ever said to me is you can't make it any worse! (although some people would argue) yes losty sorry about the shouting I just get so frustrated that strong people are made feel like idiots by doctors who perhaps need to do a bit more training I do feel the " we can't help backs heres some drugs and it will go away" mantra in the NHS has gone too far. yes 80% of people or whatever will be ok but what about the 20% or whatever it is that would avoid life long disability with the correct timely targeted intervention grrrrrrrrrrrrrrrrrrr

hello Mama! Sorry its all the arthritic ones out in force tonight I'm sure there will be a disk person along soon. Clarella I've never had an anti inflammatory make me dopey oh except I forgot indomethacin it made me act like I was drunk. But its very old and not really used and was a last gasp attempt to save the NHS 12k a year on my lovely wonder drugs :)

Clarella Naproxen doesn't make me dopey or tired as such but makes my eyes go funny it iyswim.
Hi Mama sorry you're having such problems with your right side, I have no idea about the operation question but hopefully someone knowledgeable will come along in a minute. Have you already had an MRI? What did it show?
Thank you Berrie and Maggiso and Yay Ally

Well Matilda they saw me to the door and said goodbye - does that count? . I am going to do precisely nothing for a bit then maybe check out some volunteering locally. Am ecstatic Clarella - miserable job with crazy people - am quite hyper my first day of freedom! I second Matilda on the AT benefits - my lower back is eased with the things I have been taught.

Interesting re sertaline for me too - might cut back to 50 (from 100) now that I am less stressed (see above nutter alert). My hips are really keeping me awake at night so trying anything. I don't think its arthritis - doesn't fit the description. My upper back/shoulder/neck pain should ease up with less sitting at a desk (well that's my hope). Could just be referred pain - though not sure I believe them when they say that lol.

Thanks festive - that'llbe the only leaving do I get. I always leave places in a strange way - didn't even get to say goodbye to most of them but they probably don't care.

Goodness there are some awful pain stories in here at the minute ladies - not my area but pain is pain and we all know all about it!

Hope you're having a fun filled day Ally!

Sorry Mama, I know nothing about disk stuff. Hope you're ok today.

Thank you very much for people's advice. I'm annoyed I didn't push to see a Rheum back in October when physio suggested it. He was suggesting fibromyalgia at that point. But gp thought it all thyroid and hypermobility based. But I guess it's all interlinked, and a rheum could perhaps advise on muscle regrowth etc? Endocrinologist was useless. Didn't tell me anything I didn't already know.

The sertraline thing is only my gps theory, though the side effects leaflet blames anything and everything on it. I have wondered if it tightened muscles and inhibited repair, though I've had some lower back issues for years.

It DID lower the effectiveness of my thyroxine, thus I lost muscle through stress, too much physical stuff at work and a toddler, but increasing it did not help matters at all in the way I expected. However I didn't boost iron etc till more recently.

Had an awful night just feeling really unwell but managed to go for a gentle swim. I met a woman using a swim jogging belt, jogging in the pool. I asked her about it and she told me Andy Murray used one after his back operation, so I gave it a go. Bit tricky at first but then I got into it and oh my gosh it felt like it was really helping my lower back some how. Has anyone else tried it?

Hi, I've been looking more at the alexander technique and I really think it could help me. My posture has definitely changed considerably;I'm trying to change it but I think the AT really really could help.

Is it an nhs thing at all (watched a bmj thing on it) or just sign your self up?

Clarella, was the swim belt like a floatation belt? It sounds interesting.

It was like this

www.swimming.org/go/get-started/aqua-jogging/

But I just borrowed a belt an did it myself. Put it over my boobs at first.

I was very lucky to get AT lessons for free through my local pain clinic. That was eight one to one sessions which you do need IMO. I like it so much I now pay to go once a fortnight to keep me reminded of the ideas. If nothing else do the constructive rest, remember 'let your neck be free' and be generally mindful of your posture and activities. Even sitting, standing, walking. It all counts.

If you can, have some lessons. YouTube probably does loads of good tutorials, too.

I think you can get AT on NHS but I got a guy locally through Google - 1st session was £55 and others £35 (maybe 5-6 times). I picked it up really quickly (he said that not me) so given my reduced income I am finished with him but now can stand, sit, walk, squat in slightly different ways which are less painful and yes the constructive rest I try to fit in most days (now I have more free time shouldn't be a problem). He thought I picked it up so fast as I was not only open to it but had tried everything else and knew all the "wrong" things so took to the "right" things easily. So glad my many years of painful existence finally had a purpose

Thanks

I'm struggling emotionally as I have to call school to tell them I've another sick note for a month. It's so hard as I can't tell them what the problem is. And we feel so guilty.

Phew not so bad, secretary is lovely. I need some assertive/ panic stuff. Years of finding it really hard to simply say - I can't do that (due to fatigue linked to when thyroid not great) has made really hard to do anything other than crumble! My husband has never really listened/ understood when I run out of steam, thought mutual friend commented the other day that not many people can keep up with him! Made me feel better!

Sorry being a bit me me me today. Sertraline made me very zen and confident!

I've ordered a book which teachers of AT commented was good on Amazon and looking into what / lessons I can easily get to.

I've always had v good posture. I'd been looking at katysays (alignment matters) blog quite a bit, but thinking will take it more seriously now!

Thank you clarella. I will look into aqua jogging. Amazon sell a couple of different float belts.
Glad the secretary was nice. I am afraid I gave up all but one days work a week about 5 years ago - I get fatigue too, and reducing my work hours helped. The guilt for my colleagues having to cover for me- used to be awful. When I resigned (a year after I became seriously ill with an autoimmune type of pneumonia) from my other days I did not realise it was a longer term thing. I think it is hard for others to understand how crippling severe fatigue can be unless you have lived it. Dh got there in the end- and took on extra work himself to make up the shortfall, but sometimes he forgets that I am not lazy! Ds is the one who does not understand - he is 15 now but has LD and ASD so plain does not understand.
Pavlov how are you? And Festive ?
Mama the people with disc experience will be along soon hopefully. I am awaiting an MRI so don't really know what is causing my longstanding back pain. I injured my back years ago (early 20s) so I blame that!

Just checking in, haven't been here fir a while, just had so much on, still working at care home, am now doing more parent helper at dds school with the year 1s and their reading, in laws still the same, we still have problems with mil. We had call last sat night at 11.15pm, to say that dh needs to go up their as his dad was in a state because mil had said she would stab fil with the kitchen knives, I was on an early shift the next morning so did not get much sleep. Work is still very busy, constantly running about all day, I am trying to apply for a ta job in a school, that I would love. Dd has started gymnastic and re started her horse riding again, she is mad on horses, mind you they scare me and I am so worried about her hurting her back or head if she fell.
I don't feel too good today, ny throat is horrible and scratchy, my neck hurts and I can't get warm, I am hoping I haven't got this nasty coldy fluey thing thats going round.
how is everyone else doing, I will read all the messages in a bit.

Oh, the agony of being off sick from work. Ghastly feeling to be off after being without a singe day for five odd years. Glad it went well, anyway. It's pure misery.

Disc wise, as far as I understand there I'd only any point in operating if a specific disc is pressing on a nerve root causing leg pain. It would perhaps be unusual for more than one disc to do this precise thing at a time. Discs can bulge without causing any problems at all so it is a tricky business. Disc bulges causing back pain are far less likely to be successful after surgery as I know to my own personal loss.

I have not heard of operating at different levels probably for the reasons above.

As far as any surgery is concerned, there can never be enough questions, be absolutely clear why surgery is being considered and listen to the risks as well as the benefits. Sorry,this may not be what people want to hear. It's just my experience.