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

Sorry to hear this, Little. We'd really hoped I'd be able to have another baby, but I feel it's just impossible at the moment. I have the leg symptoms back again too - it feels so debilitating.

Matilda, thank you for your kind words. You made me well up. I'm not doing well at all. My DP, thankfully, is a saint. He is picking up the lion's share of things as I'm so useless at present. Reducing hours isn't really a possibility. I'm doing 10 hour days most days - I am only just leaving work now. I won't see my kids awake again tonight. My mum has been amazing these past 2 years, but my folks are currently on holiday for a month. I just really want my mum this week though - I'm really struggling. It sounds pathetic I know. I'm 38, with a DP, 2 kids, a PhD, and seriously responsible job, and I just want my mum to come help make it all better.

Anyway - stop being such a pathetic weirdo!! Get on with things. No injections as yet. I've had 2 surgeries, and I have to think there might be another one on the horizon.... On one hand I'm desperate to see the surgeon and find out, but on the other, I'm terrified again.

Hope you're all having a better week. Sorry for being such a downer. It's brightening up here - hope you manage to have good evenings all round!

Lil, have sent you a pm. My experience of pain clinics has been mixed but largely they focus on psychological approaches to pain. I've also had injections, lidocaine infusions, Alexander Technique and acupuncture. I still have counselling at one clinic and a consultant at another. A spinal cord stimulator was discussed but I am not keen phobic. Hopefully speak soon.

Casper,have sent you a pm. Sorry, it's just so very hard and unfair. There are other things to suggest but probably best to meet with your surgeon first for a discussion about what is going on and what your options are. In the meantime for both of you I can only recommend keeping your spines as mobile as you can and getting your meds totally optimised. A fabulous GP and physio are helpful here. Also a pain clinic consultant if your GP is struggling. As said many times, judicious drug combining is way more effective than taking shit loads of opiods that aren't even helping much.

said she who overdid it today and had to top up with extra tramadol

Completely off topic .. my tongue has another sore spot the last couple of days. Probably just bit it in my sleep but I am freaking out here! Some of you know what I went through last year so will understand. There isn't a scared emoticon so will have to do

Oh Ally I can only imagine how worried you must be. How quickly can you see your specialist? My fingers are crossed that it is something simple this time. (Hugs).

Casper you sound very busy, and I am so sorry you are going through a particularly bad patch. I hope there are better days ahead for you- and soon.

I had a physio session this week and for a few days I was in less pain, although I had pain (and numbness) more on the opposite side to the main culprit, so I guess things might be balancing out. I have been sleeping better, but oddly feel very lazy instead of getting a bit more energy. Odd! I have another session in a week or so, and then soon my long awaited MRI, but I know not to expect too much from that. It will no doubt be more waiting to first get the results and then await whatever treatment (if any) is thought might help. I know there will be no 'fix' offered as my back pain and unsteadiness is so longstanding.

I echo what we all say -there is so much waiting around.

Thanks Maggiso .. I actually have an appointment with him this Wed so by then I can either get him to look at it or it will have been nothing and gone away. My physio leaves me very tired too but worth it. Waiting is a right bugger .. soon be over though!

Ally, so sorry you have more tongue worries. Fingers and toes crossed for you, good that you have an appointment this week. Let's hope it's just one of those tiny spots we all get now and again or you chewed it by mistake whilst swigging cocktails and cake.

It's been ages since I last posted on here and I have probably name changed since then.
I've had back pain since teenage, after a femur #
I have bilateral sacroiliac dysfunction and generalised muscle weakness after a neurological illness 18 months ago.

I was just starting to make a little progress (a steroid injection into one SI joint) when I herniated my third disc last week. The compressed nerve is causing bloody awful morning pain and patchy numbness on one side.

I'm so fed up I feel like wailing I'm tired of having a fuzzy brain from pain drugs and tired of making plans and having to cancel them.

There are only so many health challanges to cope with at once, I want to get on with my life yet I'm stuck at home everyday in a state of disability.

Pain and disability is so isolating and I feel alone with it today.
What a whinge - sorry, I just needed to get it out.

Thanks Matilda. Hi Merde sorry you are feeling so rubbish - I'm sure we have all felt the same - no need to apologise!

Hi Merde. You are not alone.

Matilda can I pick your brains about the comment you made above? The one about opimising pain meds, a combination of pain drugs being better than loads of Opiods.
My GP seems to give me endless and massive supplies of Codiene, Diclofenac and Lyrica. They do help but I wonder if there are more effective pain drugs out there that don't totally screw up my brain like the codiene does. He has a limited drug repertoire and I live in France so the medical system works differently - no pain clinics for example.
Any suggestions for different pain killers?

Arghhh! just lost a long post. Sorry Merde this will be the short version.

So you are on three different meds? Are you taking full dose regular paracetamol? It helps the action of codeine so do take that. Unfortunately all opiods cause drowsy side effects as do nerve meds like Lyrica, however these do improve so worth persevering to a n optimum dose. Naproxen 500mg x 2/ day might be better than diclofenac but do take a stomach protector. I guess tramadol might work better than codeine for you, apparently 15% of people don't even respond to codeine. Tramadol has bad withdrawal effects, though so be careful. I seem to be lucky I can take it or leave it.

I take amitriptyline at night for both pain and sleep. Again, it makes you drowsy but at night that's good for me. Diazepam regularly for three days can iron out acute spasm but also makes me very chilled unable to function much. Oromorph is my last resort and helps for short periods.

I'm sorry, I haven't really helped much. In the acute phase like you are now then I would be resting as much as possible with light pottering only. Physio may be helpful if the person is good. Ditto acupuncture. I've never had chiro or osteo but some people like it. I think it's all about getting the right person.

This really dose help. I swear by Alexander Technique for relaxing and straightening the spine. And heat. Heat patches, hotties, the lot. Spa pools, hot baths.

Hope that's of some help. After all your problems it's probably all well known to you. Hope you feel better soon.x

Hope your appointment with the tongue specialist goes well today Ali.
You have good reason to feel fed up Merde. Being in acute pain and having other health limitations is pants!! I hope you are able to rest up.

Thanks Matilda and maggiso

Your reply Matilda makes me realise I'm doing all I can. I get weekly physio, fortnightly chiro, I can give myself acupuncture.

We have a spa which I don't use enough - especially in the summer when it's hot anyway.
I've tried all the drugs you've mentioned and the ones I'm on are most effective I suppose. Tramadol gave me aural hallucinations and paranoia, so I'm steering clear of that one!

Living day to day in a positive, get on with it frame of mind seems to work. Occasionally, like with this recent challenge, it gets on top of me.

I'd like to get back to work but my body is so fragile I know that's not possible for the moment. I have enrolled to do a masters though so at least that gives me a great focus.

Positive thinking does help Merde .. sometimes its hard to keep it up though. Sounds like you are doing well honest!

Anyhoo, for Maggiso and Matilda I had the appointment with my consultant yesterday and they thought it was probably a bite and would get better but are scheduling another biopsy just in case ... I freaked out a little (couldn't find the exit at the hospital) but calmed down now as it will probably get better and I can cancel. The thought of further surgery scares me now I know exactly what to expect (and the biopsy itself is surgery when its taken from your tongue). It seems less painful today so fingers crossed I can just cancel when the appointment comes through.

How long does a full back and neck MRI take. Ds is ill and I really don't want to have to cancel - or take him to a hospital.

Maggiso not sure, maybe 40-60 minutes for the MRI but waiting beforehand, I'm not sure.
Hopefully you will get to it.

Thanks Merde. you were right -it took about 45 minutes in the scanner + 30 minutes waiting/changing etc. So at last I got my MRI. Now to await the results and treatment plan - if any.
Hope your tongue is improving and the doctors are right, Ally

Thank God you didn't have to cancel Maggiso ... fingers crossed for results now

Tongue has improved lots so cancelling surgery yippee!!!!! Gave myself the migraine from hell worrying about it but gone now phew!

Hooray for MRI done and sore tongue feeling better. Hope you don't have to wait too long for the MRI results, Mags. And more importantly, they are of some practical use to you.

I am really sorry for being silent and unsupportive. I have gone back to work, and tried to 'recover' from my surgery in January but it's been slower, and harder than I thought it would be, and I have been significantly exhausted. I lost you, then found you and each time I went to post, just was too tired.

I am not entirely sure, if I am completely honest, that the surgery has fixed me very much. BUT, physio and pain clinic peeps, and consultant remind me that this is early days, that my recovery will be slow with baby steps. I am reminded regularly to slow down, right right down, not to try to be well too quickly, think months/year or more. Advised no gym, pilates, swimming etc for now, right back to basics with physio - I have significant muscle wastage on right side of buttocks, hips and spine. So need to work on building these up. Nerve damage is likely causing lots of pain and so basically, get stronger, then see where I am.

Feel sad, frustrated, impatient, but still glimmer of hope that all the pain I now have, and the continued mobility issues are more linked with poor muscles and nerve recovery that continued damage and deterioration within my spine.

I am however, walking straighter much of the time, and have had some reasonable days/weeks. Apart from last week when I reverted to my old self of walking at 45 degree angle. Acupuncture has not yet fixed that.

So, now I have given a quick update (quick for me, ha!) I'm gonna go catch up on the gossip, find out the most recent purchases, and meet the new peeps who's names I have seen.

missed ya'll !

Oh Pavlov I am so glad to see you back and in one piece (mostly). And I am exactly the right person to answer this one.

Recovery can go on for years (4 in my case and I am in my late 50s now but 49/50 at time of op). I reached 80% mobility and can do most things (for a while at least). I struggle to sit/walk/stand for a long time without moving around but you learn easily how to fit that in (ie squirming around at the table enables you to sit with friends for a meal - if that fails regular fake loo breaks cover it). I can do the housework (mostly) just not all in one day. I have stopped working now but that was more because I hated the job (and the people!) more than I couldn't do it any more. Just make sure you get up regularly (stand when you are on the phone, etc) and put things away one at a time to spin out moving periods. I remember how slow the progress seemed but I have gone from walking like a 1000 year old woman to looking pretty normal unless I have overdone it. There is nerve damage (and memory) to contend with but its manageable for me so hopefully you will reach that stage too. A good physio is essential and Matilda and I both recommend the Alexander technique. I also manage much better when I exercise regularly (I have put together a selection from physio and AT and tips from other people). People often say to me "I bet you wish you hadn't had the surgery" and I always say "no actually I couldn't stand for 2 seconds before and now I can stand for around half an hour". Welcome back!

As for shopping I have been on a handbag and shoe fetish lately but not sure I can fit any more into the house! I couldn't do any actual shopping before op either!

I remind myself of you telling me this a while ago, every time I get frustrated with the slowness, remember that i will continue to progress for a long time yet. Sometimes it gets a little hard to believe I've done some cleaning, deep cleaning of the bathroom, which then led to needing to clear the hallway, and now my right leg and hip are On Fire! Oops

See that's progress! You are doing well really ... its just so slow you don't notice it yourself. I remember the tears and frustration very well but try and be positive (it does help honest) and you will get there. You are younger so you might get more improvement than me and quicker too .. just don't be signing up for any marathons!

Sometimes the urge to clean or do something is stronger than the knowledge that this activity will equal pain. I don't think this is always a a bad thing, we all need normality. Just not every day.

matilda you are right, not every day! Couldn't manage that. Am cooked today

Not sure what's going in, but my spine muscles are solid, literally like concrete, my legs feel like they can't move as they are attached to the concrete back, so walking is almost impossible, literally taking pigeon steps and can't move the right leg front or back easily or put much weight on it. Definitely nerve pain there, but the muscle spasm/backlock is unreal. Time for diazepam, and hopefully acupuncture tomorrow will help a bit.