More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

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.

So come and join us for moans, advice, downright rants or just a laugh.

Ouch Pavlov, that's horrendous.

I really do believe that when our body sends us a message we need to listen to it.

The 'child's pose' stretch feels great when I do it, the Cobra feels unbearable. That can't be for no reason.

might well done on the positive GP stuff and reassurances that you are doing things well.

matilda yey for your DS! hope it proves to be as successful as it sounds like it could be. And that means more good news for you is around the corner surely?

Talking of physios - my hydrotherapist was actually quite pleasant. Informative and more knowledgeable than some of the other physios I have seen. He said that disturbed sleep and in particular non-restful sleep no matter how much I get has clear links with increased intensity of pain and suggested I reconsider the nortriptyline but take it earlier. He told it me it should be taken, not at a specific time like I was told (between 7-8pm) but around 3 hours before I intend to go to sleep, so if that is 9pm, then I should take it at 6pm, maybe even try 5pm and it might help me sleep and also avoid the hangover feeling. He also said that if I find it helpful for leg pain, but 10mg is too much it can be given in lower doses, although not usual, he knows it can come in a 1mg syrup so has suggested I speak to me GP about halving it to 5mg, maybe even less and titrate really slowly upwards until I get the right level of taking the edge of the pain. He was clear that is is almost impossible to do the exercises required to build the spine muscles back up while there was intense pain and if I can get a very small dose to just allow me to exercise my muscles it would be worth it, and it might help me sleep too.

The first HCP that has not harped on about mood/sleep/pain/meds and focussed on the fact that side effects can be problematic and that pain can potentially be managed at a very individual low dose if needed, not some generic figure that will fix my sleep, pain and mood all at once.

He did say that he was not advocating that the hydro pool itself was going to help, heat will be pleasant yes but the focus was actually on the exercises in the pool, and were about the water rather than heat. 8 sessions in a group but with exercises tailored to me (he shifted me about like a rag doll a bit, drew on my back to see how my spine moves increased pain hugely I guess to get info to pick some exercises) with view to me going on to complete on my own in a pool - like you do now matilda. One session next week, two the week after - my boss is not going to like that…

I came away feeling a little like the hydro itself is probably going to be a bit of waste of time, but feeling that there is a physio out there who actually knows what he is talking about.

nancy the problem was, I was so desperate to get myself straight again, I was in so much pain, I actually listened to him, and ignored what my back was telling me. You are right, the cobra feels wrong. And actually, what I was doing was forcing my disc out further and then trapping it with the slipped vertebrae. It hurt so so much, but he had told me it would, to increase my meds, take time off work, which I did and to expect pain! Why the fuck did I listen to him! It was a hugely valuable lesson learnt. I also had another physio, before him, who got me to do pelvic floor exercises. That was IT. I said to her (young girl) 'I have had two children, I know all about kegel exercises ' but she insisted that I do them to help. Even though I said I do them already. Basically, she had no clue.

Saying that, I didn't learn today! I should have told the hydro man that I was doing no movements to show him how much/lack of movement I have! As I am So So Much Pain. I am feeling like crying actually.

I do love the child pose, stretched right out forward, and also downward dog pose is lovely (but don't lunge/step forward into it, as that will hurt a lot from experience)

chicken (sorry for multiple posts aka might stylie ) so good to hear you are doing well. Agree with Matilda to Go Steady. There is no rush and in fact rushing back to normality can delay your recovery. Definitely do pilates. I actually know a few people who run and they do pilates to build their core strength and balance, as apparently it helps their running technique. Or something.

ha - I know it's not funny but it sort of is. I've had the 'show my how far forward you can bend.' thing with my GP

me: 'I can't bend forward at all.'

Dr: 'well just try a little way.'

me: 'no it really hurts.'

Dr: 'Ok, but I just need to see you try. go on. just a few inches.'

NO....I am not going to cause myself great pain to satisfy your fucking curiosity, I told you it hurt just take my bloody word for it (I didn't say that obviously!!)

^

Yes. Agree. Cobra awful for discs. Just beginning to try a version of it but with a very tightly tilted pelvis so no painful arching and nerve pinching. It's supposed to be opening up my tight upper back .

Tbh most of my nhs physios never fid any exercises at all, I was always crying too much or looking like I might! So I got a lot of massaging. Nice but pretty useless.

Fucking hell, pavlov, is that what the cobra can do? Force the disc out further? My leg pain got worse & stayed worse after I started physio in August last year, & it spread lower down the leg. I wonder if that was why (I carried on doing the stupid exercises at home too). DH was always sure it couldn't be a coincidence.

When I saw a chiro he told me that I should avoid hyperextension. He was convinced it was discogenic & that I needed an MRI & would only give me a couple of gentle treatments because of that.

The child pose feels much better for me too, Nancy. Will need to look up the downward dog. My book is very basic!

loon it is only my theory, as he was never going to admit it! MRI 1 in August 2012 showed prolapse but not potentially significant enough to warrant surgery according to this physio. I did these exercises he asked for, he said do them, and if no improvement he would refer to neuro. I did them, and it was literally within days (but I continued for another few days at least) that my symptoms changed and went from shit to so fucking awful I didn't know what the fuck was going on. MRI 2 in December 2012 showed significantly more pronounced prolapse on the left of central, exactly as my pain reflected. The change in prolapse matched the change in pain which mirrored the only exercises I was doing.

I would say it probably was not a coincidence.

Sorry again for billion posts!

Oh, I meant to say also, thanks for asking after my feet everyone who did! thumb the discolouration disappeared once I put my feet up and raised a little, but then went red and hot again when i lowered them. It comes and goes and it uniform in both feet, although today the toes have gone the other way and gone cold and purple/white in places! My hands have also been red today, but they get worse when I type. I think I know what it is. And funnily it is/can be linked to RA losty and live but it can also be in isolation. I do actually think I should get the RA thing tested as there are a few symptoms that link with RA/ankylosing spondylitis, but it's probably just hypochondria

Erythromelalgia I have had the opposite of it for many years, used to drive DH mad as I stuck my cold feet on his back for fun! Seems the two might go hand in hand? Erythromelalgia and Reynaulds phenomena? Not sure about the last one, but the first one is definitely what I have now, right down to it being heat and exercise related.

I just a falling apart mess. But I am not really, I used to be so strong and healthy (apart from regular throat and sinus infections which funnily I don't get any more, not that often !)

No, it certainly doesn't sound like a coincidence. I don't understand why physios seem to be so keen on certain exercises if they're known to be bad for disc problems. Weird.

Thanks. I will go steady. I don't want to have a set back. And Pilates seems like a way forward.

Hope you are all well and keeping going x

Oh, that sounds a lot like raynards, pavlov. The extremities often get really hot & red after periods of being cold - the blood vessels all dilate at once & you get an abnormally intense blood flow. Is erthyromelalgia related to that?

I've got raynards mildly in my hands, according to the GP. It seems to be connected to other autoimmune conditions like hypothyroidism (which I have got) & RA (which I haven't).

The erythemelalgia (sp) is the opposite or so. purple and red swollen extremities as a result of heat, for example exercise, warm weather, stuff like stress can make it worse, standing on your feet I think. Apparantly it is often seen in those who have Reynaulds, they can go together it seems. So says Mr Wiki.

Funnily, my feet are ice cold in bed now for the first time in years, like it knows I am talking about it. This time yesterday, purple toes, today, white toes!

Oh, who bloody knows. It's just another thing to add to my list of woes. I won't think about it.

Pavlov, two words for you: Primark socks (the fluffy ones - if cold feet strike again).
Xxx

Ok. I am going to whisper this. I shall say it only once, then I will figure out what I am going to do with this information.

I think I might have RA.

There. Said it.

I just looked at the RA website and it talked about psoriasis. I have not ever had that. not had flakey skin. Except. Hang on. I wonder if the flakey skin and little sores/dark blisters that go hard and then peel, on my feet. And sometimes on my ear! (same one) that I have had randomly for years might be psoriasis? I have never bothered to talk to the GP about it, but have googled it a lot and never come up with an answer that I felt was accurate, possible shingles? Hmm. Nothing that has ever helped, and it's always so random when I get it. And, so does DH from time to time so I wondered if it was an infection of some kind so I cover it up when I get it. So, I googled images 'psoriasis on feet'. Fuck Me. They are my bloody feet!

It seems a certain % of people with RA or SA will get psoriasis. I presumed that it would be obvious/significant. But. Nope.

And so. On to the eye problem. uveitis? I have had that. Only once, but I remember it clearly. I went to walk out to take the children to the park on a not particularly sunny, nor excessively cloudy day, and I opened the door and it was as if the sun had been shone directly into my eyes. I had to put my sunglasses on, back in the house and shut the blinds. I could not open my eyes At All. I posted on MN too! and someone said this condition, but never had it before, it lasted only a few hours, but weirdly strong for those hours, never happened again to that severity. Never saw GP or optician about it as it passed.

So these are the symptoms I get which fit:
*Back pain. Specifically lumbar, some muscular issues higher up now (have taken it that it's linked with posture from back pain) - pain wakes me at night, has been (up to recently) improved by exercise (remember me saying cross trainer works wonders?)
*Flu symptoms which coincide with significant increase in back pain and a flare up that can last for weeks
*Feverish feeling - usually accompanied with flu symptoms and back pain (not fever I don't think)
*Reynaulds/The other one - or at least issues with extremities
*Extreme Fatigue
*Poor sleep
*Psoriasis symptoms
*Possible uveitis

Now, I don't doubt for second that my problems with my back have been caused by disc and vertebral problems. but perhaps it's masking something else. RA of one kind or another.

So, there, I have now said aloud my fear. not sure what do with it. I don't want to be a drama llama.

Fear quite tearful. As, before I thought, no, just coincidence. but, now I think, maybe it actually is.

losty if you are right, I shall bow down to your greater knowledge. And to you thumb! And anyone else who has badgered me about this.

That was a loong whisper.

and now I am going to shut up

pavlov look at psoriatic arthritis.

and don't panic. You just need to see a nice rheumatologist and have a chat. That's all. One step at a time.

I always thought psoriasis was something widespread and really obvious. And, do you know what? I recall the first time I ever had it. I had an 'infection' on my forefinger of my right hand, across the knuckle, which I was given cream for by the doctor, blistery yucky sores that went scaly, and left the knuckle of that finger numb to touch ever since, never liked that finger being touched as it always felt odd. I was 8 or 9? Then again as a child, bit older, on my ear. And had that through my teens a handful of times. It then stopped for ages and I get it perhaps once a year but not as bad as when I was younger. The feet thing are not so much yucky blisters, and only had it mildly recently, but a couple of years ago it was quite bad.

I wonder if that's all the same thing? Really though? from childhood? Must be something different to the feet thing.

It's amazing what info you can dig from the depths of memory isn't it?

denial yes, it was you! you were hassling me, sorry my lovely to miss you out

I will try not to panic. I actually think your name is very apt for how I am I am though tbh so fed up of feeling rotten i would quite like to feel ok again and someone - either you or losty - said once diagnosed it was relatively easy to get a handle on, especially if not too far advanced.

But, it might not even be that. Will my GP refer me if I ask him? or will he do tests first? Would he not have already tested for the inflammatory marker when I had my bloods done a few weeks ago? Surely that means it's not likely?

or. maybe. I will just bury my head in the sand and pretend. Like I have been doing. FFS. I don't really need this. Just some normality would be ok!

I can keep up with you guys! Matilda great news on your sons job. might glad you got done advice that "feels right". were you entirely truthful with the gp though I'm sure you've mentioned a little pain??? chicken glad you feel better, don't go mad.

Pavlov. I know it's v upsetting to be told/ realise/ even think you may have something ELSE to add to your bag of joys. Hang on in there! Going to a rheumatologist sounds like a good idea. Does being in the sunshine help? Does your ear get better in the sun - on holiday, etc.?

psa is a seronegative inflammatory arthritis. that means it stories doesn't show in bloods / inflammatory markers. about 10% of sufferers get the arthritis first and then the psoriasis. I read about it years ago and thought mmm I tick a lot of those boxes and guess what??? that's what the rheumatologist landed on without my suggesting it........it's like a game of arthritis bingo though, for a couple of years I was "probable seronegative spondylarthropy". then I mentioned that my nails had all peeled off once and yes I did have a few patches of dry skin and some other typical symptoms started and now he talks chattily in letters "this is consistent with msdenials psoriatic arthritis"

stories should be sometimes

I might just boldly go in to see the GP and say 'i think I have this, test me/refer me please' and see where we go from there.

Ok. Enough about that.

Let's talk about shoes and clothes! i need help finding some nice trousers/chinos that go with my fly boots...