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

[PavlovtheCat]

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?

Anything that can help, i am willing to try.

Sorry to hear that your GP isn't being helpful. Sometimes you have to insist on being seen by the right person. If the osteopath doesn't know how to treat you, it's probably worth looking elsewhere for help.

Once your extreme pain has begun to ease it might be worth seeing a physiotherapist. Mine showed me how to get out of bed and climb in/out of a car, bending from the knees etc when my back hurts. If you feel able to do them, try doing some of the pilates exercises that help as you want to try to get your strength and movement back once the inflammation has died down a bit.

Do you have to sit for long periods at work? Try using a wedge cushion. It will help your posture and using a lumbar roll cushion (or rolled up towel) will also help support your spine. Also make sure that you have regular breaks (to get up and walk around) and that your chair is at the right height.

The throbbing calf and patches of numbness are caused by sciatica (which I've got). It will gradually ease off once your disc bulges improve slightly but it may take weeks or even months to improve.

just seen your last post. Yes, the sacral region would have been scanned in a lumbar MRI (as mine showed up problems).

tough yes, that is the one. I now have a grand cocktail of drugs and will be getting a lockable box for it all so I can reach it (our normal drugs/first aid box is high up out the way of the children, can't reach it!).

mouldy ok so that is good, although I was sure that much of the pain was from that area, I guess it is the L5/S1 disc pain that is eminating. I have a proper lumbar support chair at work with a dip at the back, but could probably do with more support at the base. I will talk to OH again and get my chair reviewed. I do sit for long periods, and it is the type of job that sometimes I can sit for 2-3 hours getting carried away with a report before even remembering to move. My boss suggested getting a timer for my desk to remind me to move/get up every 20 mins. I would use my outlook but that pings and I automatically click it off so that won't work. The biggest problem is that I do a lot of 1:1 work with my clients which involves working with them for up to 1 hour, normally sitting down. I need to be thinking more diversely when working with their needs so I might do more flipchart work and get both me and them moving around more! my boss would be impressed I am sure

I have taken low level drugs today (15mg/1000 paracetamol plus diclofenac) as I have had to do school run, and visit a friend. It did me good but has knocked me out and I am in more pain, despite being able to stand upright. I seem to be hurting everywhere right this second. I had a bug last week (which seemed to trigger this episode of acute pain) and I guess I am still not over that, nerves seems to be hurting everywhere, facial neuralgia thing that I normally only get when I have migraine. Maybe I am getting one due to feeling a bit stressed. I don't know. I just don't feel right, or happy. I am in all honesty wallowing in a pit of self pity. What I know is, that should I feel this way on monday I cannot return to work. And that pisses me off as I have stuff to do. And I enjoy my job.

I called the head osteo guy this afternoon, the one who did the MRI referral as I am not happy with not much being done. I got a call this evening! 7:30pm so must be his tidying up the paperwork time before going to the pub home . This is the doctor who refered me for MRI and did the steroid injection. I think he is, in fact the Pain Clinic Consultant. I have never been told. He works as a GP at the surgery, and he is an osteo, but I am now thinking I see and have been seeing him in the capacity as 'consultant' that people say I should have but seems like I did not have. Normally I see his colleague and for MRI referral/results and injections he is the man. Sound like the consultant to you? nice I was told, but hey ho, got there in the end...

anyway, we had a good long chat. the crux of it is he considers the problem with my back as 'wear and tear' (like I am a car), and not too bad. He said it won't get better. But, it might not get worse. I tried to engage him in discussion about possible outcomes in the future and he said the problem with this and back problems generally is the psychological effect on people, especially around looking at what might be. He then talked about trying not to get down about it, keep positive. I tried to explain that the type of person I am, I will worry less if I know possible outcomes, even if they are potential worst case scenarios, as then I can plan around those as far as I am able. Some people might then become maudling, but I am less likely to. I am a risk assessor by profession and part of how I look at things is to look at what is the risk, when/how/to whom and what measures can be put in place to reduce or manage that risk? And, that is how I look at my back. It is the not knowing. I don't want to be told it might not get worse, if there is a good chance that is will. I need to know that. He just does not get that. He said try not to let it get me down. Well, it has. I said if I can know, I can spend a week down the dumps and wallowing, get it out of my system and crack on. Anyway. that was a ramble.

He talked like I am old woman. He said when older people's discs dry out, they suffer with less pain than younger people with disc problems as there is less disc to bulge out/trap nerves and that in time I may find this happens to me. I said that very statement made me feel old.

So. He said, I need to speak to the other Doctor (his osteo colleague) to discuss physio etc. I might talk to him about a long term course of acupuncture, only had 3 sessions last time, maybe I can have some more. won't hurt as he does it there and then and he can talk to me about other options while I lay there like a vodoo doll.

He talked about these acute episodes being a backwards step but to not let them dishearten me, as they can become fewer and far between with exercise.

Now, this is the worst bit. He said that there is no reason why I can't do most things I want to do, being sensible, within reason and not being daft about it, swimming, the gym, going to work, playing with the children. So I said 'well that is really positive, will I be able to kayak again? obviously not right now, but in time?' and he stuttered and carefully said 'nooooooo, not really, well, not at all' and went on to tell me why not, twisting/pushing/pulling etc was exceptionally hard on the back. He said if I did I could really do some damage or words to that effect. I asked if he meant for now, or ever and he stalled and said 'see how it goes in the future but not now or anytime soon'. And then he went onto the whole 'don't let this get you down' business again.

But I am allowed to be down aren't i? for a little while at least? honestly. Kayaking is what I love doing. I don't do it much these days with the kids, but this year, been waiting to get out there on the water. DH says that 'we can afford to be positive can't we?'

Wow that was long and I doubt anyone will read it. But if you do, well done . I am in pain right now so off to bed to take painkillers.

and he said something along the lines of 'lots of people do not understand back pain and it can be seen that wear and tear might not hurt that much, but in fact it can be very very painful'. sort of made me feel like my pain levels are not really understood or beleived. and that makes me feel very . I want some-one professional to bloody validate my pain, you know say 'no wonder your back is hurting, you have a prolapsed disc, that is going to hurt when its popping out'. I know I am, but no-one really seems to fully understand HOW MUCH pain this is, and how constant and neverending it is even when it is ok.

How can that just be 'wear and tear'? I am not 70. I am 35.

ok, so 'wear and tear' is degenerative disc disease, but its ok, as 'even those with 'flare-ups of acute pain in their 40's will eventually find themselves pain free by their 60s as the discs degenerate completely'.

well thats ok then. Only another 25 years of pain to go.

fuck.

another lapse. unfortunately, my DS was running around when we were out for father's day, father was busy socialising with other fathers! DS refused to come with me as it was raining, so I had to pick him up and he kicked and fussed and wiggled his legs. Could not put him down as he fussed while we on some concrete steps.

i am not sure if it has gone again like last weekend but i suspect so. last weekend it went on saturday, I could move a little on saturday, sunday, unable to move. Today, the pain is the same as saturday, but I can move a little. Waiting for the seizing up of the back .

And, cant take heavy duty painkillers, as DH is comatose having drunk too much whisky with his male friends and has passed out! (an entirely different thread). But in the morning will take them again.

Back to square one. I really did not realise I actually have to stop most things for a week including caring for the children

Pavlov, it sounds like you haven't given your back a chance to heal rather than a new injury causing your pain.

Your DH (or other friends/family) need to help you out with DS during the next few days, otherwise the prolapse will take much longer to recover.

mouldy, yes I agree. Don't think its 'new', just gone back a few days in recovery and feels like it did when this 'lapse' happened.

Mostly DH has helped, but I have to remind him constantly and I feeling like such a nag. And out for a meal today, like a drama queen.

I am quite pissed off with DH though, because it was ok when at our lunch gathering to celebrate fathers' day with some of our other friends with very young children, so the men could pat each other on the backs on how well they have done as parents, and the kids could all play (and they did beautifully, aged between 5 and 1).

What the problem was, the men wanted to go back to one of their houses to have a 'whisky coffee' and watch some footy. They have a good sized garden, weather was nice, kids stuff mostly done for school, they offered to feed kids, great idea. Lets do it.

On route to their house, I told DH that my back was starting to hurt a bit more, and I had not taken high dose of medicine as driving so DH could have a couple of beers, so, although Father's day, could he please help with DS, picking him up etc. He was like course darling, its about us being together as a family, not me being centre of attention blah blah.

Cue, the men getting absolutely hammered drinking whisky, me then having to look after DH/DD/DS, get them into the car, get them home, into bed.

My friends helped, and more so after I cried in pain and their slow realisation that my back is not just a little sore. But, they have their own children to take care of too.

I just can't see how I am going to be able to give this back enough time. Life continues. I can't make it stop. And DH works a lot of evenings so I do the whole bedtime/tired cranky kids period. And I do the early morning excited period. both of those times involve children who like to hang on my neck and lift their feet off the ground!

Sorry. that was a right ol proper moan.

Can I ask another question, specifically for those of you taking medication for nerve pain such as gabapentin etc. How would you know, if this is working well and there is no sciatic pain, if the nerve becomes trapped? Would you still have pins and needles, and numb patches? what should i look out for in time as the sciatic pain eases with this medication I am on?

The reason I am concerned is because I obviously have a trapped/irritated nerve right now, so although the MRI showed no nerve entrapment, that was several weeks ago and this 'flare up' is doing something. GP and osteo consultant guy seems to think that is due to the 'episode' I am having. But, if this happens again, or continues to cause severe sciatic pain, how would I know if this is not nerve entrapment now, or, in the future. what do I look out for?

The disc that is herniated could herniate further in the future couldn't it? (or could have already), and the other bulges could herniate in the future, so does this medication mask those things happening as I won't have pain in my sciatic nerve?

not sure if I made sense, I know i waffled. sorry. I shall blame the drugs

Hi, I have followed your story (so to speak). I am 35, used to be able to be able to do all sorts, dance as a hobby etc. Now I cant. My back has always been a bit iffy. It went before I had kids, then went as in hospitalisation about 8 years ago.

Since then I have episodes like yours every so often. I have prolapses at S1/L5 and L4/L5. I have permanent nerve damage in the sciatic nerve now. So they could operate but its probably not going to be that successful, they left it too late to do anything - kepts saying I was too young.

I am on diclofenac, co-dydramol and gabapentin (dont like amitryptilene (sp??)). I have had two injections so far and lots of MRI scans.

The point of my potted history is to say, I do understand, giving up a loved hobby is shit, really shit. I would say, give it up mentally for now and have a real downer about it. Then if things pick up a couple of years down the line - great! I sobbed like a baby when I had to stop my hobby, now I can do bits but not much.

I know you were doing core work stuff too?? When this all calms down, go back to that and dont stop. The instant you stop, things go floppy and you are at risk. I know if I exercise and I am at risk if I stop (so I dont....).

Your DH - needs a real kick up the arse. Go to bed, stay there if you can and force him into action. Your DH will need to help you with the kids and work later, re-jiggle things about for a while to get you over this.

Gabapentin - take it at night, not in the day if you can. I started straight onto 300mg at night. I am trying to increase by another 100mg, tried it in the mornings and I was awful so I am adding it to the night dose. Helps with sleep. I dont think that the gabapentin would mask anything major going on. If something slipped further or trapped anything seriously you would know. The pain meds / gabapentin only does so much.

Hang in there and get your DH to help... Or lose is 'D'.

Oh and it does get better. 35 isnt old even if you feel it right now. I creak like a battleship at 35 but its ok....!

HTH

lookbutdonttouch thank you for posting. how that they did not move quick enough to stop nerve damage. I am worried about that. But, I have full movement in my legs right now, other than they are not working well as I limp/hobble when i walk right now!

thanks for the re-assurance about the gabapentin not masking real problems that might go on, i can take it better now. I did not take one last night due to the reason posted before. I took one this morning, and will take the second one due today this evening. I don't want to delay it any more, as I am hoping the side effects will have reduced enough that I might be able to go into work on friday for 2-3 hours. Is that being unrealistic, to think returning to work is possible on friday?

right now I am back in bed (well on the sofa) moving every hour, standing and walking, but it is very painful. It is not as bad as sunday/monday, but probably same as tuesday, as in mobile but not good. I am not able to stand straight without shooting pains down my leg and my back hurting, i am hobbling, it is taking a long long time to move anywhere.

I am glad you have been able to move forward but sad for you that you have had to mostly stop your hobby.

I didnt want to scare you! I work full time and go out and still have a full life, have fun with DD etc. It just means I plan more. Dont do the ironing all at once. Dont clean the kitchen floor ever . Hoover floors rather than the house all at once. Things like that.

Oh and I wear heels. Not every day, but if I am going out or something, I wear flats all week so I know I can get away with it (and take diclofenac with me).

If the gabapentin makes you feel funny in the day, seriously think about taking a large bit at night and then the other bit in the afternoon. The side effects do wear off.

Mine went through a phase of popping out every so often without warning so I have crutches at home and a set in the car. Depending where you live you can the spare pair??

Right work, do not over do it or go back too soon. I would say dont go in on Friday, wait til next week. I dont know what you do though. However if you have to do the kids that night then dont risk it!!

There is life after a prolapse - promise.

oh no you didn't scare me! i have always been concerned as I have heard lots of people who have not really been taken too seriously and it has left permanent damage.

And, fabulous news about high heels! obviously not this weekend though and I dont wear them a lot anyway, just nice to from time to time. I think the crutches idea is good and is something I have been thinking about already. It just helps me move, and it will help me get back to work more quickly when the disc plays up. Did you get yours on the NHS or did you buy them? they are really not very expensive from what I can tell but DH is very 'no way are we buying them if you can get them on the NHS, don't be daft'. but, at the end of the day, this is my back, and I will use my money to buy it if I have to.

You know I asked about neck pain and arm pain, and possibility of it beng a disc further up? I think it is. Main neck pain had gone but...

The day before my lumber back 'went' again, I developed stinking headache and pain the neck, and threw up. From then on I had sore muscles and nerves, in particular in right arm and leg. Anyway, it probably was still a bug. But. When my back went I also had neck/head/arm pain. And I had tingling pins and needles sensation my my face. I thought that was the bug. I had it when I threw up and thought it was a migraine or something at first as I sometimes get that type of face tingling with migraine, but it was not.

So, since the bug has gone, the face pain in re-occurring, I jus thought I was run down and stressed, and arm pain was transferred as suggested here, made sense. Still have some but not bad finger pain.

I just read about cervical disc rupture or bulge, not deliberately, it was in the same article I was reading about lumbar disc stuff, and the symptoms of cervical disc problem include pins and needles in face and neck, as well as nerve pain in arm.

I am now worried that the disc degeneration I have it further spread than just my lumbar area. Spoke to osteo as in a lot of pain today with lumbar pain, and can't get thurs a lot moved forward. He said very little point as I need to rest up today and getting to his clinic would aggravate it. Need to stay at home. Yeah right, I have two children and my Dh is at work...

I will talk to him about if this is possibly higher up too.

And I think a nerve is trapped right now as pain is severe, can't stand straight have pins and needles in foot, intermittently but often now, and in calf. I feel like a mess.

Can you get another MRI SCAN DONE? I know the waiting times are often long though.

Last time I had a bad relapse and couldn't walk or wee I was admitted to hospital so I could have an inpatient MRI done and it was done within 4 days. But as an outpatient it can be weeks/months.

viva I am going to ask on thurs. the actual wait from referral is about 2-4 weeks, it's the admin that takes the time as there is a mobile scanner locally so is very quick, but my osteo has to refer me to his boss, a weeks wait, then he completes referral, then the company he refers to calls me, another week, sends the referral to people who book it, another couple days before they call me then bout a week, maybe more for the date. If I could bypass the joke of a referral system it would be two weeks tops.

I do wonder whether I should go to hosp when it is acute, as walking is impossible for several days, but weeing is only a problem insofar that I can't walk to th loo easily! What happened when you were in hospital? What did the MRI show?

tough I can't. I got parents evening, I got to get both kids from school and Dh from work. I am sure it can wait til thurs, I don't have drooping foot or bowel/wee problems. I have just taken some diazepam and strongest dose of painkillers, should sort it out to get me through today. I did not do strongest this morning as had to do school run. Well Dh took them in but I needed to drive car home after dropping him at work after, he called his boss to say he would be lat so he could do it. I should not have driven really as it hurts, but no choice.

I asked osteo about crutches, he said not to use them, as if in that much pain my walking is difficult, I should not be walking. He said do ice packs, which is great, but That is easier said than done!

I was admitted onto an orthopedic ward where they didn't much apart from give me morphine hourly. They also ended up cathertising me as I couldn't wee.

The MRI showed I have degnerative disc disease, 2 slipped discs - one lumbar and one cervical. The discs are bulging but not pressing on a nerve so they won't operate.

I also have a friend who was admitted with the same problem as me - her disc was touching hte nerve. She was unable to walk and after a few days it was no better so they operated.

viva sorry to hear it is degenerative. I have been digesting the report from the MRI and it is ddd too, they just have not given it that name - uneven end plates, reduced height prolapsed disc and the other lumbar discs are all protruding and dehydrated.

How do you cope? What strategies do you have to cope with it, both acute and chronic phases? You might have told me already...

Pilates, but I think you said on another thread that you already do pilates.

Amyltriptelene is good, only take it at night.

Trying to keep as active as I can. Have spent £1k on a memory foam mattress. It is bliss. Best money DH I ever spent.

I was scared when I was first told it was degenerative, it gives imagies of it progressively getting worse. My consultant says thats not the case and people in their 30s are normally at the worst stage and then the discs dry as you get older and shrivel up and don't protude as much. Not sure how true that is.

I work as a midwife and am scared I won't be able to as I get older.

viva my osteo said the same thing, it will get easier as I get older as the discs are too dry to protrude when older. That makes some sort of sense.

Does it badly affect your work now? Are they supportive?