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Calling Lumbar Disc Sufferers...i need to ask some questions...

(217 Posts)
PavlovtheCat Wed 13-Jun-12 22:21:24

Its me. again. if you are reading this you have probably read some of my umpteen posts about poor old me and my back. feeling very sorry for myself, and yet know so many of you have it worse than this.

Anyway. My back has 'gone' again. However, this time, as well as lower back pain, I have also had a pain in my neck/spine which has eminated into my head, across my right shoulder, and the nerve pain has followed it there into my arm and fingers. It reminds me of when you pull a muscle or something sleeping funny. And then as i have been thinking of this, I remember that I have had this a few times, but not ever connected it, just put it down to sleeping badly. I get a 'clicky' neck a lot too.

So, never gave it much thought, but as my back has been painful so has my neck/shoulder, and the pain in my arm and into my fingers has been at times almost as bad as the right leg sciatic pain, and it certainly feels the same type of pain.

so, given that my MRI has spotted 'several' disc bulges, could this be something that could be a problem higher up too? does that ever happen? could they be linked, or a seperate hypochondriac type problem? The MRI did not go that far, only did lumbar region.

The pain in my neck has subsided now, likely due to all the powerful drugs I have been taking, but the sciatic type pain comes and goes down my arm into my hand/figners intermittently, although nowhere near as bad now as my current sciatic pain.

so thats my first question. is neck related to lumbar pain? or, can it be? (i think I am worried it might be degenerative? this can affect all discs can't it?)

next is:

is there any complimentary treatment or therapy, or food/supplements etc I can take to support helping my discs go back to where they should be/get stronger/stop my back going again. I don't want this to keep happening, as it is affecting my life so badly now. I can't work at the moment, I can't clean the house, pick up my children (esp my 2.5year old), lie down with them. I can just about drive the car. I can't walk far without it hurting, stand up for long without it hurting, but surprisingly I can sit down for a while. I of course will continue with the usual route but nothing seems to be being done for my back that will help - injections not worked, acupuncture not worked, MRI shows no nerve entrapment (think the results might be a little different right now) so nothing surgically feasible. What else have I missed? other than drugging myself up on codiene and diclofenac?

<Sigh>

Anything that can help, i am willing to try.

FanjoForTheMammaries Wed 13-Jun-12 22:26:13

Can you feel your shoulder muscles and check whether they are tight? I have muscle injury to neck and that makes muscles spasm and squeeze nerve down arm. GP said if disc related it would be very painful turning head. I was also concerned as have disc issues in lower back.

Labradorlover Thu 14-Jun-12 08:35:11

The neck could be refered pain from the lower back. When I'm at my most sore the whole of my left side hurts. I've got buldging discs and damaged ligaments in my sacroiliac joint.
Have you tried Amitriptyline for the nerve pain? And ask doc about pain management.
What I found helped most apart from drugs, was exercise ( very gentle build up ) to make my hamstrings, bum and stomach muscles as strong as possible. Accepting the pain, rather than using my energy to be angry at it, also helped, but took a while. And I still occasionally get pissed off when I hurt. However, 13 years down the line, I'm more fit and active than I thought possible.

PavlovtheCat Thu 14-Jun-12 09:00:16

fanjo when the pain was in my neck/shoulder it was painful to move my head, really hurt, but not now, although my neck still really creaks. I tried to feel for muscle spasm and could not, but does not mean there wasn't anything. I did not mention it to emergency doc at the weekend (when my back went again and my drugs were not strong enough to help) as I just thought i felt like a hypochondriac with all manner of different things wrong. I will keep an eye.

labrador, good to know it can be transferred pain. I mean not good that I have the pain, but good that it might not be additional disc problems further up. My nurse friend has suggested Amytriptiline for the nerve pain as the next step, GP has not mentioned it, I will go back for a meds review I think. I joked with my friend that as it is also used for depression it might kill two birds with one stone!

re learning to deal with it. I thought I was. I had a bad acute episode at xmas which was the start of the diagnosis of disc problems, as i had acute episodes before, GP gave me drugs, it sorted itself out, I carried on not thinking much of it. At xmas it was much worse, took a lot longer to get over it, and has never fully gone away since (where other times, I went back to 'normal' although did not realise that occasional twinges in my leg was sciatica, i ignored it). Once I was mobile again and had been given the ok by the osteopath to start gentle exercise, I joined my local gym end of Jan this year, started to swim, and once the pain was mostly under control I built it up, did walking on the treadmill, used the cross trainer, and most effectively started Pilates and Body Balance (which I love!). I think I have helped to avoid some further acute episodes by strengthening my core muscles, as there have been times my back felt like it was going to 'go' and a day of rest sorted it out.

So, this new acute pain has floored me, and in terms of mentally, screwed me up. I feel like I am back where I started in Jan (i know I am not, i have some idea of the problem now, I am fitter), but I am, as you say, angry. Not sure who with (well no-one). I am frustrated as I can't do what I want/need to do. I am tearful. My DH is pissed off (he says not, but he is not a carer!), my work are likely pissed off especially as we have had chicken pox x 2 and a broken arm in the space of 5 weeks. I just can't see that my life is going to improve further than expecting a period of 6 months with minimal pain that flares on the odd day or two, then a period of 1-2 weeks or more, unable to function.

Has anyone tried meditation to help deal with the emotional/mental side, to find some peace/acceptance with their lot?

PavlovtheCat Thu 14-Jun-12 09:01:17

labrador and yes to the pain being on one side for me too. I have some left sided nerve pain, and a little hard back pain in one spot there, but it is mostly and very prominantly the right that is the problem.

I was at my GP's yesterday and she said the neck pain that I have is probably transferred from lower down.

I really empathise with you, I have permanent nerve damage from a herniated disc and had x3 lots of emergency surgery.

I am left with residual pain and was very tearful yesterday for similar reasons to you, I feel like a nuisance, burden and as if dh has an 80 year old wife.
It has affected the family so much and the pain on top of it makes it all pretty crap.

My GP suggested ADs, but I am not sure as I think that my response is quite reasonable given the situation and it would be like papering over cracks.

Has surgery been suggested for you yet?

PeggyCarter Thu 14-Jun-12 09:19:58

Message withdrawn at poster's request.

thejoyfulpuddlejumper it was suggested as an antidepressant , I have a carrier bag full of tramadol , gabapentin , morphine patches etc for the pain but there is not much more that can be done for me now other than spinal fusion.

It definitely sounds as if pavlov needs reviewing though.

PeggyCarter Thu 14-Jun-12 09:39:16

Message withdrawn at poster's request.

FanjoForTheMammaries Thu 14-Jun-12 09:48:09

i am on a tiny dose of Nortryptiline for nerve pain and it really takes the edge off. A higher dose knocked me out a bit too much but worked really well, like permanent infusion of painkillers

PavlovtheCat Thu 14-Jun-12 10:12:07

tough oh that sucks! I know what you mean about not wanting ADs because the reason is a bloody good one. I am in two minds, well, I am not, but DHs perspective is very different. He feels that depression/feeling down is a symptom of a problem in the same way as sciatica/pain, and therefore ADs is treating that feeling, the way that other drugs help the other pain. He is of the view that if we deal with the emotions, it gives us a break from feeling so terrible so we can evaluate things more clearly. I see his point but would be reluctant if suggested too.

tough i have my next osteopath appt to discuss MRI results on thursday next week, could not get it brought forward (I had one last week which I had to reschedule, wish I had not now). The head honcho osteo called me with MRI results saying there were 'several disc bulges' but that there appeared to be no nerve entrapment, so he made an appt for me to see his colleague/my normal osteo again to discuss the results in detail/next steps. He said surgery is not an option as won't achieve anything. However - at this moment in time, I would say there is a trapped/pinched nerve as sciatic pain is constant, its just whether it stays that way once this acute episode eases off. I don;t know yet, why or what discs are bulging/what extent. I am almost certain there is something going on with sacroilliac region as pain, esp when acute pain eases is low down at the base/around backside, when acute it is there and higher up.

It just all seems so hopeless in terms of long term outlook, although it seems significantly better than where you are right now.

Iamseeingstars Thu 14-Jun-12 10:14:52

Pavlov I fully feel for you. I am going through the same myself and getting very weepy all the time. Got to the point of what's the point., my life is so difficult to cope with and I can't do anything for myself. Family are getting fed up with me now because it's gone on for so long. My pain keeps moving so it's probably referred pain.
Painkillers don't work or ease the pain. On strong opiates, patches, morphine and other stuff? I get conflicting advice from doctors, hospital, physios etc so I don't know if I am coming or going.

I can't offer any constructive advice but my thoughts are with you.

For other members this post is about Pavlov, not me, so I would appreciate it if you could stay focussing I Pavlov. Thank you

Oh, is that a dig at me sad

PavlovtheCat Thu 14-Jun-12 10:19:44

the whole meds thing is a pain in the backside (excuse the deliberate pun!). Gp told me he was referring me to Pain Clinic at the hospital, but in fact referred me to an osteopath, which has been fine in terms of trying acupuncture (there and then as he is qualified) and having steroid injections (his boss does these) and they referred for MRI. But, as they are not my GP they cannot prescribe medication, so have told me to speak to GP about changing/reviewing meds. Problem is, my GP has little idea about back pain ('you can't herniate a disc by sneezing/coughing' for example), and the pain relief he gives is the standard 'someone is in pain' medication. I don't know how he will be able to guide me on what I need, or agree with my own suggestions, for specific back related pain, such as amytriptline, or others. I could really do with seeing someone who can do the whole shebang.

PavlovtheCat Thu 14-Jun-12 10:32:29

I don't mind this being a sharing thread. In fact, maybe that is what we need, there are other collective threads for various things and I talk with people on the whole waiting in the system for appts diagnosis etc which is great as the slowness gets me down. May we should have a thread for coping with back pain and alternative coping methods? Maybe there is one already and I have missed it.

Once upon a time we would have to drive to a support group, and now we have it at the tip of our fingers, so lets share, positives and negatives. I know when I feel down like now it is good to know others understand. and i am happy to offer that same support to others.

brew

PavlovtheCat Thu 14-Jun-12 10:33:19

iamseeingstars sorry to hear you are where I am now.

Iamseeingstars Thu 14-Jun-12 11:39:39

Thanks Pavlov. Just looking at photos on the web about the spine. Really should stop looking at the Internet.

Tough - sorry not a dig at you or anyone else and I am sorry if I have offended you. I just didn't want to take this post away from Pavlov.

Tough - do you find any of the painkillers work at all

Onlyaphase Thu 14-Jun-12 11:44:12

Sorry Pavlov it sounds like you've reached the end of your tether.

I can't figure out if you've had physio or not? DH and I have both had really painful episodes of back pain, spasms, immobility etc over the last 2 years, and physio sorts it out. One session improves mobility, four sessions puts you back to normal in our experience.

PavlovtheCat Thu 14-Jun-12 11:49:47

onlyaphase no physio offered. Osteo said he did not want to do this until pain was under control...then he would give me some exercises to do. I really don't know why I was referred to osteo rather than pain clinic as he does not really do much. apart from sympathise.

I think I should go back to gp.

PavlovtheCat Thu 14-Jun-12 11:51:27

and the problem is that by the time the gp or anyone refers me on to someone else it takes so bloody long the pain has subsided enough for me to manage without intervention other than some anti-inflammatories, by the time i got to a physio they would be like 'and we are doing this why?'

Iamseeingstars Thu 14-Jun-12 12:03:18

I chased physio and they have now said I must not do my exercises and have complete bed rest. But staying in bed makes it worse when I need to get to get up and walk around

Onlyaphase Thu 14-Jun-12 12:23:38

Can you not self refer to the physio? I did as I couldn't face going to the GP and having to wait.

It is £34 a session around here, and it does the trick in stopping spasms, releasing the tension in muscles that is causing the problem in the first place and increasing movement and flexibility to stop recurrence. I'd happily eat porridge all week if I had to as the difference it made to my quality of life is immense

PavlovtheCat Thu 14-Jun-12 12:27:59

only if I thought the physio can help I would go and happily pay the money, but the osteo does not think physio will help right now hmm and I am worried I would be wasting money I dont really have for them to tell me they can't help at this stage.

iamseeingstars is yours a lumbar disc that has prolapsed or bulging? more than one? is the bed rest for that reason or another?

I am going to go back to the gp, I am just not sure what to ask any more, what will help, what is next. It all seems to be pain management only. And I am not happy to accept that right now.

PeggyCarter Thu 14-Jun-12 13:29:53

Message withdrawn at poster's request.

PeggyCarter Thu 14-Jun-12 13:33:12

Message withdrawn at poster's request.

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