The Back Story Continues

[Matildathecat]

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive!

Helibee, I'm gonna have a tight arse and fanny when this is all over with. Lol
Don't mess with this kitten!

Going for Von Furstenberg dresses and Kennel & Schmenger shoes on ebay.

Hi everyone,

I've already managed to turn today from a good day to a fairly bad one. How annoying is that? I have the rare luxury of the house to myself for a few days so house is now nice and tidy and will stay that way .

Pavlov, hope your day goes ok. That's so difficult trying to carry on for the dc whilst longing for a lie down and some strong drugs.

Hi, Heli, sorry to have to meet you here but welcome. Having a tiny child must be sooo difficult. Sending you commiserations. Hope you get plenty of help and sympathy.

Goodness, well done with your progress. I think I've said this before, but my Pain Group physio was absolutely adamant that you should exercise under the pain. Much better to do even three reps of the exercise well than just going for volume. If you exercise to pain then you move less freely and no progress is made. It made sense when she said it! I wonder if exercising in the water would work for you, when you are allowed, of course. It's my favourite way of doing my physio as both warm and non weight bearing.

I've been considering this subject of telling people in our situation how amazing/ good/ wonderful they are in relation to their injury, operation or whatever. It happened to me a lot. I'm Mrs Cheerful Braveface. I hate moaning to friends or mentioning pain or other miserable subjects. In response I frequently got the 'oh, you're so good / wonderful' etc. this actually ended up with me feeling very conflicted and upset. I felt like I was living a lie. I'm not ok sometimes. I'm furious, heartbroken and deeply traumatised but I hardly ever show it. I'm scared to, actually. On the surface and indeed often really am, smily flippant and positive but it's hard to maintain. Seeing a psychologist has helped to identify these feelings but I haven't really addressed the issue. Thing is, I honestly feel that after a while everyone gets fed up with a misery. Who wants to spend time with a moaner? It is vital to me to see my friends very regularly and I'm scared to truly show my feelings for fear of being boring.

Sorry, I'm rambling. This is one place I really do moan so thanks for listening! And also, I'm doing my lovely friends an enormous disservice, I'm pretty sure they would stick around. Just trying to articulate why 'amazing and wonderful' aren't easy labels to have.

Enjoy the sun, everyone.

Matilda, that makes sense. Water makes sense too. Will try when I'm allowed in a pool. Prob won't get to one for 4 weeks (or just under) as not driving. Want to join a very naaaaiiice gym then, vs a posy one. Will feel more comfy around oldies and those who've 'been through the wars'.

Why has your day gone to poop?

Matilda did you mean you have been doing housework? no wonder you are feeling a bit down.

But seriously I know there was a thread recently about someone who hated it when people said I don't know how you cope, I couldn't, when the person had been through a traumatic time. My mum also said she hated that when people said it to her after something awful happened to her.

Matilda that makes an absolute tonne of sense. As a family we have had an incredibly, impossibly hard year, I know exactly what you mean about 'who wants to spend time with a moaner' I think the exact wording of that goes round my brain so often. I'm very much a 'well at least the tramadol keeps me smiling' and 'there are so many options for treatment, aren't we lucky to live in the modern world'. When actually I want to go, 'fuck this, I am SO miserable, not only have my bones stolen my ability to do nice things whenever I want and look after my boys, they have taken my hearing and that sucks big time. Plus the world has conspired to break a lot of other people I love in even worse ways so I don't have anyone to support ME when I need it. This is horrible and worst of all IT'S NOT FAIR.' (I think the it's no fair needs a big foot stomp but we'd better watch our backs ) But we can't and we don't, we just keep on and paint on a smile. Although speaking of which I have become overly invested in the Clinique counter recently but I find the morning ritual of painting on layers of happy face really helpful. Plus I pay a woman to sit in a room with me for an hour a week and just spill it all out to her which is just the best thing in the world. Everyone should have one, whatever is going on. It's like the valve on a pressure cooker . Such a conundrum because it is human nature to say 'you are doing so well' 'you are so brave' when actually someone going 'fuck me, that's a right bastard, you poor sod' would probably be more helpful.

Pavlov I don't know how my back is feeling because I am resolutely Not Thinking About It. If that makes sense? I don't want to make it worse than it is by concentrating on pain? I don't know, it's an idea in my head but I can't really articulate it! I also have to admit that I have a prescription for diazepam from my GP because I have booked myself a holiday for my 40th birthday and I am scared stupid of planes .

Matilda, just rads rest if your post. I can only retain snippets of info, so respond bit by bit.
I completely understand where you're coming from.
I really do.
I find that even without trying, I put Mr Smiley face on around friends because, 7 times out of 10, I'm genuinely pleased to see my visitors (friends). But they know.
I made a Facebook group. I dragged friends and acquaintances into it. It's a secret one. And I spilled. I told them exactly what you have just said AND that I was scared that they'd not stick around to support me - as I needed them like life rafts. I did. Still do, even though I feel like I've approached, fallen and am now on the river but in shallower, smoothe-flowing water vs rapids.
They stuck. A few didn't. I felt terribly hurt by a couple who never posted even a 'xx'. Those who sent messages like this and never contacted me again (will now copy n paste for you):

Hi Karen, the text I sent u was not delivered. very strange, so sorry for delay. I am very sorry to hear what u r going through and my heart goes out to you. I can only imagine the pain u r in. Just stay positive and believe that everything would be fine and it will. Thinking of you. X

And this:

I will surely make a plan to come to visit. Take care.

Me: lovely. Just let me know which day you'd like to come.

Them: nothing. Ever. Again.

Back to me: but despite the odd hurt and non-'friendship' realisation, I've been overwhelmed. I added to my group everyone who expressed concern or said the casual 'let me now how it goes'. I went against (with all the mental strength I could mister( those insecurities/ little voices into head that said 'she won't care', 'I'll look needy / selfish/ whatever'. My need for 'life rafts' kept me grabbing on.

I was absolutely overwhelmed. I've learnt so much. I used to think that I was alone. No friends. Just acquaintances. Turns out I owed more credit to those acquaintances, that people do care. That I'm not alone. And that scary fucker of a black hole I was falling into, was closed. The hands seemed to mesh together under my (achey) bum.
Brought me up again. I was able to face everything I was going through.
I had MN and this secret FB group.
Damn it, they even got to know about poo-gate!
Lol

I held nothing back.

And humour popped out. Surprised me. I became me. Warts (emotions and, literally, shitty stuff too). I became 'brave' on there as I thought 'what the hell. If they can't handle it, they won't read it'.

I did get a bit freaked out a week or so in when only very few responded on the group. I posted that I was hurt. (That was scarily honest for me) and that I would remove anyone not interested or who couldn't handle it, that I'd possibly not be able to were I them, etc.
I had a number of texts and FB PMs to say 'please don't remove me. I care but I just don't know what to say'. I was touched. So I left it. I carried on blurting my stuff. And it's actually reeeeeerrally helped me.

Anyway. I've no idea whether this is of any interest or help. It's not a suggestion as FB isn't for everyone and, I suppose, it did take some guts (not that you've not got guts). I was pretty desperate for support n scared of falling in that black hole.

Just thought I'd share it.

Back to Breaking Bad now, and soup before druuuuugs.

I completely understand how you feel about the feeling crap and falling apart on the inside but feeling like you have to smile on through. Ever since I've had fibromyalgia I've had that because I don't look like every part of my body hurts and I like smiling, people tell me how good I look. I also put on weight with the amitriptyline last year, so when I came off of it, I of course dropped the weight and again I keep getting told, "oh you must feel wonderful"!! I wish my body worked that way

My DS1 has just bought me some yummy soup and we are snuggled up to watch a movie whilst ds2 is napping with DH.

DS1 is 6 and has been at referred to an immunologist as they can't work out what's causing his pain and fatigue. His consultant is next to useless and she thinks I'm a pushy mum. Well yes I am as I don't like to see my 6 year old fall asleep at 4 pm or not able to go to school because he can't stay awake. He often sleeps for 14-16 hrs!! He tested positive for CMV, so they think he may have developed CFS from it. Last year they thought he had bowel cancer so we are at least in a whole better realm of diagnosis! It's very draining though fighting for a diagnosis constantly.

Sorry I'm rambling. . . Off to eat

Helibee, so worrying re your 6y old. Stuff what they think (pushy mum). Mummy's instincts are so important and your 'evidence' / his symptoms are clearly not right. ;(

What you posted there goodness is what I admire about you. I've become quite introverted but I'm finding I'm needing peoples support more and more otherwise I'm falling apart. Well done to you for asking for it and for being brave enough to post the gory and vulnerable parts too.

Thank you for your message about DS1. I will fight for him. DH and my in laws are amazing too as is our GP. His first consultant at Yorkhill was fantastic too but now that they have ruled out cancer she is just so laid back. She also really upset ds by telling him that he needed to cut out his pain relief last time we tried cutting it down on her say so and he needed to be put onto the dihydrocodiene!!! Thankfully our amazing GP is an amazing advocate for him and said no way, so she upped his ibuprofen and paracetamol again and his pain is back under control. He has swollen lymph noes in his bowels and in his neck which seem to cause him a lot of pain. The consultant says, well other children don't normally need pain killers. Well I don't care what other children want, my child does and I'm so fed up of seeing him cry in pain. I think I need to film him to show her next time.

We have been filling out the frenchay activity chart and she was looking at Christmas week, when he had a bad week. But of course DS says, I definitely was the first one up on Christmas Day, nice try buddy, but we have video evidence of us waking you up after you being asleep for 16 hrs and the first words out of his mouth were "please can I have 5 more min". So his consultant looks at me like I'm lying thank you child!

Film it of you need to. Just sounds so clearly poorly.
Someone once said to me about their own DC, 'if I don't stand up for him, who will?' That statement has always stayed with me. Isn't it true! We mummies are the only people who will fight (if necessary) for our DC's rights to be healthy, happy and as well educated as possible. Professionals and relatives either forget, loosen the reigns or stick their heads in the sands of denial. It's natural for them to do so. As natural as it is for us mummies to stick our necks OUT. Ignore those 'pushy mamma' labellers. Ask them the question: if YOUR child had (list symptoms on your phone for long n lengthy symptoms), would you sit back and let it be?

My internet went awol that was horrible.

That must have been a very scary moment for you!

Yeowch. Let go! Easy. We're here now, honey ;) how you doing?

Good, it's ok, I think with a bit of counselling and a vat of wine I can get through this! I actually went out of the house in desperation, I spoke to my children and played Grand Tourismo with the giant teen. It was ok but I'm glad you are all back with me now .

Helibee you go fight for your baby, poor little thing. What is CMV? My DS2 had an auto-immune thing called HSP when he was 7, it was horrible seeing him ill for months.

Goodness that's really interesting about your private FB group and how friends react. It is very weird how other people react when you are vulnerable. I love that you have found a sense of humor through it though. It's been a hell of a roller coaster for you.

Hi I have been lurking for a few days because my prob is not a back one but it does result in back pain. I had spd with my first pg and after when he was about 6 months i still had hip pain so they did scans and found a slight hip dyslasia. I didnt get the surgery done because i was still into my career (chef) and it didnt fit into my plan- things got better and I had a second child and more spd, alot worse this time but never had to use crutches thankfully. Things improved slowly again and i saw a chiro as well as the nhs physio but when i went back to work i had a bad flare up and it didnt really "go back", just stayed achey. I had been taking alot of codeine, paracetamol and ibuprofen in the months before it flared up but only taking them on and off when it was bad.

Over christmas time it settled into a chronic pattern and the doc (not my usual one) took the codeine down to just 500/8's when i had been used to taking about 30-50 codeine at a time (with either paracetamol, diclofenac or both)and sometimes still getting some pain. I saw my usual doc again after xmas and he put me on amytryptyline (i take 50g/night) and gave me a small prescription of the codeine but stressed that i had to bring it down or if possible come off it all together. he also gave me diclofenac and omeprazole to protect my stomach. I am now waiting for the op to fix my hip- it will be about 4 months but i will prob have to wait til june because i am currently going to uni to retrain in Psychology- and boy am i glad i am now because the whole cosmos is deffo teling me not to be a chef any more. I had foot issues too- plantar fasciitis but got orthotics through nhs and it has gone away since i was signed off work in december. Sorry for the massive post but it has been a rather drawn out path to now.

I dont ever get the sciatica-type pain you guys mention alot, and it doesnt stop me moving, it just hurts while i am. I feel my pain in my low, low back as a dull ache and feels like i have a heavy weight attached to my coccyx , pulling down. I seem to get worse pain on my period ?? I used to get little achey pains through my muscles in my bum and thigh but the amytryptyline has seen them off. The side effects of that wore off quite quickly but lately I am getting super-vivid dreams- sometimes good of flying etc but other a bit disturbing. My little boy is 4 now and has ASD, we found out when i was 7mnths pg with his sister and my spd had just ramped up so I didnt really take it in until a lot later. He has a staement underway and we arehoping it'll be finished very soon so he will go to a resource base school in sept(not special school but have extra support). He doesn't talk much but it is coming along and I think Robyn will help him as she is strting to talk now- she is 20mnths.

I felt a bit of a fraud to post here but you all seem a great bunch and so much of what you say i recognise- hot water bottles, the drugs (i'm rattling), the mental arithmetic to work out what you can do without going over the top and ending up in bed. This week has actually been lowest pain for ages but it because I had gastroenteritis and a uti and so spent a butt-load more time lying down. I can feel the ache coming back last couple days so am gonna have a lie down couple times a day now. please excuse mahoosive post again and nice to meet you all

Yes, illness and disaster really do sort the men from the boys in terms of friends. I worked at the same unit for 25 years and had many friends there. Only one has stayed in touch ( more than that, actually. She's been great). Others texted once or twice did the, 'oh we must get together' thing then nothing. I think for some of them they left it so long it just got embarrassing for them.

On the other hand there are some people that I didn't class as especially good friends who have shown real friendship and solidarity.

Others, close friends have almost literally saved me from going under. They have been there for me every step of the way. Amazing people.

goodness, I noticed you were thinking of dropping your amytriptiline. Can I say I felt just like you and really didn't want to take it. However, that's a tiny dose and it works. If you stop your nerve pain might increase, you will then need more opiate and that isn't as good for nerve pain. As an antidepressant you would be on approx 150mgs. So you see, 25 mgs is not a therapeutic dose for depression anyway.

lost I want a weekly therapist. Trouble with my sessions is that they are spread out and I kind of feel I need to show I am making progress so I'm kind of faking it there, too. I'm so used to saying it could be worse etc I never get to say just how shit it feels to be in too much pain to get up for a wee in the night, to need a wheelchair at the airport, to have reduced pelvic sensation blah, blah. I have a legal case now in action and am sick to my stomach with fear of having to meet or even discuss the person who did this to me. I can't even say his name. The very thought off him makes me shake with anxiety. That's not like me. I guess this is just my tipping point. We all have one.

Enough. I've actually had quite a nice day. Hope you all have, too.xx

maizie you are welcome and thanks!

Hi maizie, sorry! cross posted. You are very welcome. I actually was born with quite bad hip dysplasia. I had plasters, traction and eventually surgery. I really, really don't think these things are a coincidence. If you look up thread a bit you will see my recent post on a chiro appt. our bodies are essentially wonky and as the song says, the hip bones connected to the back bone or whatever. Doctors are remarkably tunnel visioned, they only ever focus on one tiny portion of the body instead of looking at the whole person.

You sound as if you've had a lot of pain and not a lot of answers. If you are studying psychology you might find a Pain Management course helpful. It's not for everyone but I found it enormously helpful.

Thanks for the cake. anyone for a

Holy crap Pavlov, yes, that. Exactly that.

goodness re amytriptiline. Agree with matilda I am only on 10mg of Nortriptyline which is similar to amytriptyline (i never get it right, and spell it differently each time!), so 10mg of mine is about the same as 25mg of yours. I didn't really think it would do much, but it has helped so much with my leg pain. I don't think it has done too much for my mood, but if it did, no bad thing , but, I missed several doses this week due to wanting to drink some beer, and I am really feeling it today, my nerve pain has increased a lot today, which is likely in part due to my increased pain generally, but I think the reason i was feeling my pain largely in my back not legs is due to the nerveblocking drugs, and the stopping it has increased the leg pain too. It's probably the one I would suggest reducing later rather than sooner if you are managing the side effects ok.

pavlov, now cross posted you. Seems like I've triggered quite a few of us on here today. Hope that in some way it helps that we all have these very difficult emotions. I so get the bit about being defined as 'Matilda with the bad back'. bad back? Please? It's a bit more than that! I'd prefer another reference point actually.

Grin and bear it...someone came up with that one.

Yes. I'm glad I started this thread. It's fun, we laugh but sometimes a f*ing good misery fest is needed. Chronic pain does grind you down. We all need outlets to release the pressure. It might be music, dancing, shopping or anything. It might cost you in terms of deferred pain, but only you can decide if it's worth it. We do these calculations all day, every day.

And yes, do tell it as it is to your boss. It's his job to listen to you.

Totally understand the worrying about moaning thing pavlov but then you also worry you arent being honest withem too, bollixed either way! I have a small circle of friends but all are quite close so they have been really understanding. I have just studied a bit of health psychology in our last module matilda which did make me understand it a bit better. although the irony of learning about pain while being in pain was not lost on me. But psychology is already a bit ironic because you are trying to learn about brains by using another brain! crackpots! My GP said if it doesnt improve in another 2 weeks he will refer me to a pain management clinic. It has been alot better while i've been ill so who knows it might come back lower level than before. I have been going to pilates- helps alot

losty it's clean, I have my own one

One of my close friends, she has had back problems for, well for all her life, but it was always put down to xyz, never had any correct diagnosis. She has one leg markedly longer than the other, curvature of the spine at her shoulder level, but nothing was ever done about it. She has had pain for years and it has messed her life up. She was told that it was actually all related to her hip, which she found out has a problem with (can't remember what). Anyway, she spent years with this before, aged 40, a different doctor suggested she had an MRI (yep, that's right, no MRI in all that time). She has Spina Bifida , so, has obviously always had that! Not diagnosed til 40 years old! She got so feb up with being fobbed off as it not being so bad that she self medicated with drugs when younger, then alcohol and stopped going to medical professionals until she met the partner she is with now and he encouraged her to explore it again and be pushy. Even then it took 3 years of fighting and everyone thinking it was in her head/due to alcohol use and not looking after herself.

Tbh it wasn't until I had the standing X-ray just last week that the root of all my troubles became apparent. One leg longer than the other ( ? Due to hip dysplasia), spine therefore pushed into abnormal curve and disc squashed out.

Problem is, there isn't much to be done about it. I will be looking at orthotics and maybe chiropractor.

Thing is, I'm just sick of doctors, treatment and the whole thing.

pavlov, what has happened to your friend? Is she getting any help?