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

I'm begrudgingly taking it and trying to stay at 20mg. I was told to go up to 50mg but if I take it too late I am zombified for the whole next day, horrible. I gave it up when I went onto gabapentin as I thought it was a replacement. A GP said that if I was up to 50mg and still needed more then she'd change it to gabapentin (or pregabalin I'm not sure exactly). Without it I struggled to sleep and started using antihistamines. I aim to take it about 6:30pm but always end up forgetting and taking it about 8pm - what time suits you?

Queen, rightly or wrongly I regard gabapentin as my daytime nerve pain med and amytriptiline as my nighttime med. so I have 600mgs gabapentin at 8am, 1pm and 6pm then amytriptiline when I go to bed. It makes me sleepy pretty quickly but I think this varies so it's worth experimenting to find your best mix.

I've found I'm ok on 20mgs but again this varies so much so titrating
upwards is fine if you do it slowly. The next day zombie feelings should improve but it's really trial and error. I do sympathise because it's so hard when you are responsible for young children.

Good luck.

tough sorry you are still in so much pain. You told me your horrendous story recenently. Is it back pain you still have or more generalised pain. Although I don't have a full CA injury profile, I definitely have damage in that area and so many different pains. Although it sounds awful to say, I'm happy to meet others with poor surgical outcomes. It makes me feel less alone. Hope you are ok. I agree Queen Square pain clinic is mixed. Mainly just far, far too busy. And my new consultant seems a little lacking in people skills...

Tough, I had a micro discectomy that left me worse off. I was finally diagnosed with severe scarring around the nerve root several months later. I had further surgery to try to remove the scar tissue. During the second op it was discovered that butcher surgeon no 1 had cut though part of the nerve root, hence the excessive scarring and the increase in pain and weakness. Although I followed my post op instructions to the letter the scarring returned only even worse.

So a mixture of nerve compression and surgical damage.

The prognosis is very poor re recovery. Basically I won't and other than drugs and injections( which don't help) I have to get on with it. I do at least know, though quite accurately what is actually wrong. Not even knowing must be terrible. And knowing all that does also gain me a lot of support and sympathy which is helpful.

I am seeing Consultant at Queen Sq next month. He has ignored all letters for information from my pension provider. If he won't write a clear and definitive letter regarding my inability to work, they won't give me my Ill Health Retirement. So instead of using the appointment to discuss my condition I will be trying to get him to write this letter which would take all of about five minutes.

Grim. Sorry you are in a similar boat.x

No, my first op was done privately locally. Tbh Queen Square have been picking up the pieces. Yes, it's common practise for the consultant to supervise junior staff during surgery. Ironically it was one of the reasons I went privately the first time.

If I get no joy at the next appointment I will use PALS. Trouble is, that might get a letter written but not necessarily the one I need.

Why a bore. You mention Expert, are you taking legal action? I am.

Sorry to butt in but I am having some problems/side effects - not sure if it's from the Gabapentin or naproxen or a mixture as I have not long started those and the symptoms started then. I have found that when I drive and get home that I can't remember half the journey. I know I have had that in the past and I know a lot of people do. But this is every journey now. I do have a lot going on in my life right now which doesn't help but it's worrying. I also received two parcels yesterday. One was a dress that I ordered and the other was another dress from another company. Which I don't remember ordering and which was exactly the same as the other dress I ordered!! Dh laughed. But it's worrying me now.

Others side effects. A massive thirst but not needing to go to the toilet any extra and also when I do go to the toilet. My wee is very dark like I am dehydrated. Are these side effects?

I will see what happens in a couple of weeks at the appointment then get proper cross.

It's the nhs pension scheme I'm trying to access. You might have thought that a fellow 'colleague' would have been sympathetic and helpful . I think you previously said you were a nurse, have you been able to get IHP? Most people assume that if you get fired for illness the pension is automatic. Not so.

I don't think I feel spaced out. Unless I take the oramprph which I took a lot of yesterday due to the pain. I just want a full nights sleep. Haven't had one of those for a year and a bit. I wake up to turn over or wake in pain or head a mess. I asked my GP about anytriptline (sp) but he said no. I can't remember why. That's another side effect. My memory is awful. I struggle to talk as I can't remember words. If someone is talking to me I drift off somewhere and don't hear half of what they say. The GP did sort my mess out last week. But I never thought of these side effects as being side effects until now

hi all, so sorry to hear alot of you have had bad pain days recently, sending you all very ummnetty (((((((((((())))))))))))'s , lots of , and of course big glass of , for those who don't partake of course.
school issue with my ds is all sorted, need to email them about other resource base schools but they are on same page now, phew- althiugh not 100% phew until we find out their pick for us.
have found gabapentin is working- but after a few days the effect lessens so still titrating up, currently at 1000 , 3x a day and to be honest not much side effects but i feel same as someone on here who said they cant remember an "un-spaced out" state of mind- so thet to a lesser degree.
hope you get your replies soon matilda for the pip and other, fx it will be approved. one less stress on your mind. That doc is being beastly, wtf? pain device deffo needed here, hasnt been used in a while on the thread i think- what a tosser not doing his job for god's sake. Waiting to hear myself about mri and spinal assess- she did it at a break-neck speed though. i was about 10 mins late but even so! she also wanted to see the mri results. won't see consultant about mri until 20th june as they cancelled other appt but it is to do more surgeries so i dont begrudge them really
feeling in a bit of limbo at the mo- pain a bit better with the gaba but still alwys there, will this be permanent now? I am starting pilates , physio already etc but with 2 kids, uni and a dh that doesnt often do housework im finding it hard to find time for all my exercise regime- it might control the pain when i do more but will it always return if i dont do enough?
hope you are feeling bit better loon, pavlov and matilda, bad flare ups it sounds like- hope your people near are being supportive and keeping you cheerful.
is your dh's knee still bad pavlov? knees are ouchy too, i know (broke acl but all fixed now).
Queen I started the ami at 10 and found similar side effects but they passed v quickly and taking 50 now and same kind of thing with taking right time- i take mine 9/10 and im ok getting up about 7/8 but made it a bit earlier recently as they dont make me sleepy right after i take them now- maybe not at all, but i sleep well, then again sleep was not ever a big issue for me, just daytime pain mostly. so maybe stick with it and keep increasing slowly as they are suppose to boost any other pain meds too. I dont know if my maisie-ness is increased by meds or just me anyway- as i've always been very forgettful and absent-minded, i put my tea in microwave and forgot it until next morning regularly! yet i can remember some things in alot of detail that others cannot. weird!
sorry about huge post- been catching up,

and the drifting off thing when others are talking- been doing that years too! msdj, at least you can blame it on the drugs! no, joking aside it is annoying because other peolple think you dont care about what they are saying

msdj, yes! sorry it's likely the gabapentin making you feel like this. You've not been taking it long, though so hopefully it will settle. I forget things constantly, leave pans on, iron plugged in etc.

I also forget conversations and apologise a lot.

So maybe it doesn't improve, you just get used to it [ hmm].

Oh, and drink more fluid. Dark wee is a sign of dehydration.

I have burnt pans, left heating on , leave things on buses, lose things alot, cannot remember large sections of my life- this is all pre-back probs i'm afraid! oh and
cancel appts when it was the day before!

I use the wrong words too. Infuriating. I know I'm doing it but can't 'find' the correct word. Also cannot 'hold' a thought in conversation.

All very frustrating. It's quite nice to know I'm not alone.

Have had all that. Now have no excise though.

Excuse

I have had a wonderful day out in the rain. We went to Lanhydrock, which is a National Trust House and gardens. It was pouring most of the day. Their attitude to people with disabilities was awesome, even though one of the staff thought I was also deaf or unable to understand her, she spoke really slowly, and carefully I let that one go... I have a membership for me and the children, DH goes in free as my 'essential companion' and the man at the desk gave me a free 'access guide' with info about other NT places and their access for disabled people. You are meant to send off for it, but he had one spare. The gold cart took me straight to the disabled entrance, so i didn't have to walk at all to get to the house, and the man driving it back to the main entrance took us directly to our car in the carpark so i didn't have to walk at all - which was bloody good as I was struggling a bit by then! They were keen to ensure I knew where the toilets were, offered me use of a wheelchair if I needed one, made sure I knew where the lift was in the house and regularly checked if I was ok on stairs etc. Generally, they made it clear they wanted people with disabilities to be able to enjoy the place.

And, they have free loan of huge golf umbrellas, so we could just wander around and let the children run in the rain. I could take photos as the umbrella protected my camera, and we even had an ice cream!

Pooped now though, golf cart still hurt as it jolted all the way back and then stuck in the car on the way home, having walked far more than i am used to. Painkillers maxed but feel happy and in pain, rather than miserable and in pain!

msdj I stopped taking gabapentin as I struggled to not appear like an air head. I often forgot words mid sentence, simple words - I would just go blank and go 'er, er, er' and then forget the whole thing I was saying, go red and just want the world to swallow me up. DH started to finish my sentences! I put things in the wrong place, couldn't find things, would walk into a room and forget what I was there for. I used to do it a bit when sleep deprived/distracted with children, but it was constant, all the time. I just felt, and appeared, or so it seemed, vacant. I found it was not better with amytriptyline, and that was worse in that I lost some peripheral vision - it was not actual visual loss, that was checked, it was a loss of spacial awareness, a distortion of what i saw, and it meant i had to stop driving. The side effects did not ease enough for me to be ok continuing with them, but for many people they do ease, but I was told by my GP, and by others on here and other forums that you have to give it about 4-5 weeks from the final dose you get to, to see a drop in side effects. My GP actually gave me 4 weeks off work to adjust to the side effects of amytriptyline. That drug worked a bloody treat for the nerve pain though, so gutted I could not continue with it, probably the best one I have tried for nerve pain.

Not a gold cart, now that would be fancy treatment , i meant golf cart/golf buggy.

shame it had that effect on you pavlov, are you on pregablin now? so weird how all these meds affect people differently. Pretty much all the things you describe I used to do anyway- you mention sleep and i was seriously deprived when working in top-end kitchens- even more than when i had my kids i think, or a different kind. I averaged 3 hours in any 24 at that time. Now i'm thinking maybe that gave me practice to deal with the fuzzy-headedness given by gabapentin and ami- am a bit concerned i have put on nearly half a stone recently, but gi probs could also be the culprit. Have been looking up the "FODMAP" diet that the nurse told me about- but told me to see a dietician to do it. lists of foods that aggravate IBS and ones that dont. anyone elae on here having GI probs- as they did ask in the spinal assessment appt, I had a flare up today after an apple and some cheesecake and it made my back pain get much worse, is that gaga? hope you are all tucked up in bed having a lovely dreamy sleep. more hugs, (((((((())))))))