Worried about future, diagnosed with degenerative disc disease

Heidi9024

Hello everyone, I've been diagnosed with degenerative disc disease and I'm really scared and worried for my future

Bluebell21

Hello @Heidi9024 Welcome to the Community. I hope you enjoy your time on the forum. Any questions just ask.

It can take some time to come to terms with a diagnosis. Do you have any support to help you with this. Could you talk to your GP about how scared and worried you are about your future?

Have a look around and join in when you are ready.

Take care.

Heidi9024

I feel let down by my doctor's, they didn't explain the condition properly to me and I'm having a game getting medication at the moment, I'm only 41 i live alone. I go to the chiropractors and have physio but the physio is grueling and im worried it's causing more damage

Morgan_Scope

Hello @Heidi9024. If you're unable to get a doctor appointment to discuss, your physio should be able to explain your condition to you more fully to you and also help with your worries that the physio is causing more damage.

I'm not a medical expert and cannot give medical advice, but I would think that physiotherapists are very familiar with your condition and wouldn't do anything that would risk more damage. But if you're worried or want to understand more, I'm certain they would be happy to talk about it with you.

Sandy_123

Hi there @Heidi9024 welcome I have this also, so know how you feel, speak to your physio and they will put your mind at ease. Is there another Dr that you can see in the practise.

Heidi9024

Hi @sandy_123 it's a different doctor every time i go, how long have you had it for and do you have physio?

Meredithshep

I have it too, diagnosed at 35 years ago. Had surgery then when it was an ortho surgeon that operated doing a discectomy and hemilaminectomy and it was big surgery then, they have made leaps and bounds and now neuro surgeons do keyhole and your in and out and that's if you even ever need surgery. The best advice I have is keep moving, do the physio when you get one, my walking is very limited but I do walk and use a stick. I had some nerves damaged during the surgery by the ortho surgeon though. I know people with the same condition who are fine, it seems scary when they say you have a disease.

Sandy_123

Ive had it a long time I can't even remember when I was diagnosed. Physio said nothing they can do for me. I'm limited in everything, can't bend, I have all sorts of tools Todo things. Like house work etc. can't walk far either. If I get a flair up I can't do anything and just about move. I had adjustments at work, in the past, I've had an adapted bathroom done. I find I feel the pain all the time even resting, but I've managed to just put up with it. Strong pain relief when the pain gets too much. It will effect everyone differently.

Meredithshep

That's awful Sandy, have you never seen a surgeon to ask them if there's anything can be done. I know physio's are great but they should refer you at least and if nothing can be done the surgeon may refer you to pain clinic who can do injections and radio frequency procedures that do help. Mine has been ongoing for 35 years and I've had a few surgeries and have pain clinic procedures too. Physio could even refer you to the pain clinic but they won't see you until you've seen a surgeon so you're better off just asking for a referral to a spine surgeon. Surely a surgeon would be the one to decide if anything can be done x

Heidi9024

I've had mine over a year but was diagnosed about 5 months ago, doctor has put me on gabapentin which don't do anything for me, i still have a physical job but had to get a doctor's note for modified duties although they still try to get me to do certain jobs. I'm unsure what i can and can't do because i don't want it to worsen or deteriorate futher. which sleeping position work's best for u guy's? i wake up crippled every morning and i googled online and it said to sleep on my belly but that's a definite no for me because it hurts and i can feel it putting more pressure on my lower spine

Heidi9024

Doe's the physio decide whether you're eligible for surgery? I've heard about injections aswell

Meredithshep

I can't lay on my belly either, I lay on my back with a pillow underneath my knees depending on what else is going on as I have a few problems laying on my side with a pillow in between my knees is another option. A spinal team involving several people including surgeons are who decide on surgery or not these days, I'm currently on a waiting list for cervical spine surgery, I do take gabapentin at the highest dose but can no longer use morphine patches as I have to inject a drug it doesn't agree with for an autoimmune condition so I do use the pain clinic and take whatever treatment they will give.

Heidi9024

ok thankyou, is it the doctor i talk to about surgery then? I'm on gabapentin 200mg and they gave me some Naproxen aswell but i still feel everything, I've tried a pillow between my legs but that hasn't worked so i will try lying on my back with a pillow under my knees instead. Will that be the last surgery u will need? x

Meredithshep

Have you tried physio yet ? I was referred by MSK after physio hadn't worked this time, it's worked in the past though and I would hold off any surgery until you have tried every other avenue. I'm on gabapentin 3600mg per day plus other things so there's a lot more can be done with meds before you even consider surgery and you really do need to try physio they have all sorts of things besides excercise that can help. I am hoping it will be the last but you never know. Surgery should be a last option

Heidi9024

Yes i go to physio every 3 weeks and it's my 2nd session there, it's grueling and after the last session i was given new exercises to do 3 times a week but it's killing me and feels like if i was to lift something with some weight to it i feel like il end up in hospital, i have to do 30 reps of dead lifts and 30 reps of swinging lifts whilst being bent forward and it's the being bent forward whilst swinging a 5kg bottle of water that's worrying me, i go to the chiropractors every 2 weeks aswell. my gabapentin is 200mg 3 times a day x

Meredithshep

Bloody hell that sounds like boot camp not physio, I couldn't do one of those let alone 30 of each! maybe don't do them and explain to your physio when you see them next or do a few if you can manage to and let them know you have reduced them until you can build up to 30. Could you ask for your meds to be reviewed as you have a long way you can go with the gabapentin, pre gabalin are very similiar and some people respond better with those, I couldn't tolerate them so went on gabapentin as the alternative.

Heidi9024

Yes i haven't done any in a couple of weeks because it knocked me about when i did the last lot, i will try again though before i next go to physio and see what she says. Have you ever felt any clicking in your spine? x

Sandy_123

Yes Im under the surgeons been back n forth over the years, I've had injections in my spine but they didn't really work. So no point having any more.

I find heat helps with the pain, hot water bottles, hot showers. Like I say, people with the same condition will have different symptoms, also it's a game of trying different meds to find ones that suit you

Also it's about finding ways that help you, with tasks and daily things. If you can't bend like me a helping hand stick is brill.

egister

https://forum.scope.org.uk/discussion/comment/963593#Comment_963593

it looks like mockery of a sick person

Heidi9024

what do you mean?

egister

https://forum.scope.org.uk/discussion/comment/963839#Comment_963839

As your fellow sufferer, I can only say one thing: only the absence of physical exertion, very smooth movements plus swimming help to live.