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Help please, sciatica and amitriptyline

133 replies

Pixie1771 · 12/06/2021 09:38

Hi, hoping I can get some help...been having crippling sciatica for 6 months now . Have tried numerous pills etc and had a spinal nerve block last week (hasn't worked)
Most days I can't get out of bed, the pain is literally horrific.
Just been put on amitriptyline....started really low 5mg a night, got the usual dry mouth and sleepy etc.
Has anyone had a good response for sciatica on amitriptyline? I just need some hope as I honestly can't go on like this. Desperate.
Hoping someone can give me some reason to carry on. Thanks

OP posts:
SunglassesSeventy · 18/06/2021 22:26

How have you been today Pixie?

doadeer · 18/06/2021 23:05

My condition is slightly different as I have inflammation in the facet joints in my spine which compresses the nerves, I also have problems with a hypermobile pelvis which strains my back. I've had nerve blocks three times this year, it took 2 weeks to kick in and reduced pain by about 60-70% but it only lasted a month. I've also had nerve ablation where they burn the nerves, I have loads done all through my lumbar spine... Pain went after 5 weeks but that too has come back after a month. I have no advice but I'm very low about it. I'm in tremendous pain and just working out which drugs to go back on. I have a toddler with additional needs and I'm only 30 it's very depressing 😭
Sending you positive thoughts you get some relief 💐

Pixie1771 · 19/06/2021 08:15

Sunglasses....hi, def not quite as good as the day before, not in agony but not great . Back pain has increased as leg pain has reduced.
Petrified of that agonising pain coming back, living in fear which is ridiculous.
It's bearable atm so just keeping up with tablets etc.
How's things with you?
Doadeer....sorry to hear about you thsts a lot to contend with with a toddler.
You say your nerve blocks kicked in after 2 weeks did you get the local anaesthetic part work straight away for a short time, then the steroid part worked after 2 weeks?
Is there any long term way to deal with this for you? As its inflammation have you been given anti inflammatories? I was given them, even some miracle one slow release for arthritis but it didn't do a thing!

OP posts:
doadeer · 19/06/2021 11:53

I felt worse immediately after injections, felt nothing from anesthetic. My body is very slow to respond to everything.

My back is best when I lie and do nothing but that's impossible with my son and life

Pixie1771 · 19/06/2021 12:06

Doadeer....was your injection just steroid or anaesthetic too?
Like I said I'm.nor sure if my injection is working(the anaesthetic part didn't work) or the pulls helping ir just one of those times that it naturally goes away and comes back.
Like you I'm best led down doing nothing, when my sciatica was at its worst that didn't even help.
Just grateful its subsided now although my back is worse , trying to move about a bit but so scared of doing something to set it off again. Become quite phobic about it actually.

OP posts:
doadeer · 19/06/2021 12:10

Both. He put the highest dosage he could in each time. I had many many nerves burned aswell.

I do intense pilates sessions twice a week and go swimming as well. It's hell but I need to keep my muscles strong

SunglassesSeventy · 19/06/2021 18:18

Sorry to hear the back pain has increased Pixie, but glad the whole thing is bearable rather than hideous right now.

Mine is ok, I'm still figuring it out. It's ok if I don't go out and walk anywhere, which is frustrating. If I go out and walk that's when I get the pain, it seems ok with just one day of a short walk, but if I push it that's when the pain comes on in a way that I find more difficult. So last weekend I did 15k steps on Sat, after walking very short walks Mon-Fri (10-20 mins) and was fine, but when I stupidly did 15k steps on Sunday as well I was then in pain Sunday, Monday, Tuesday, with it starting to fade away Weds onwards. There are still niggles when it fades but it's much less noticeable.

I'm finding it frustrating as I like walking to stay fit and get me out of the house. I'm a bit worried about what to do on upcoming holiday as we usually spend our days wandering around, or going on country walks, I don't want to spend the whole holiday sitting indoors while the rest of the family go out and about. I'm even wondering whether to hire a wheelchair! I'd feel such a fraud though, because I'm not disabled, or in agony, I can walk normally, it's just that when the pain is triggered it dominates my thoughts and ibuprofen doesn't work.

Pixie1771 · 21/06/2021 18:12

Hi sunglasses, sorry you're still having issues although at least its bearable.
I didn't get a notification of your post so only just seen.
Unfortunately today mine has started again. It's not agony but this is usually hiw it starts
I honestly could cry because I feel like I can't go through that again, maybe it won't get to that point....but have a feeling.
I know what you mean about exercise, you want to do it but it's risky....especially hard if you're going on hols.
The only thing I can hope is that my respite was it just going away as it sometimes does and the amitriptyline is not yet working, so hopefully it will soon.
Honestly 6 months of this is too much and I'm feeling literally petrified of it getting unbearable again. Back to bed, agony etc. I just can't do it again. Maybe it's just a blip of a day and tomorrow will be better

OP posts:
doadeer · 21/06/2021 18:24

Have you got a check in with the surgeon who did your injections?

Pixie1771 · 21/06/2021 19:35

Deer... hi, yes I basically have to go for another nerve block (more detail up thread) so just waiting for that. Luckily I had the sense not to cancel it when I felt better...I always knew it could come back. But because the first one didn't react at all my surgeon is sceptical to operate ( again more detail up thread) so having one L5 next (L4 last time)
I'm just hoping it doesn't get as bad as before. Upped my amitriptyline to 20mg tonight, so hoping it kicks in soon.

OP posts:
Pixie1771 · 21/06/2021 19:36

Ps my consultant didn't do the nerve root block, that was done by a radiologist under a live xray etc

OP posts:
doadeer · 21/06/2021 19:48

Ah just read yes I had that done but for me they did coccyx, L5,L4,L3 in one session. Had that three times then the nerve ablation, have they mentioned that to you? I understand it's usually the next step after steroids.

SunglassesSeventy · 22/06/2021 14:22

Sorry to hear it was getting worse again yesterday. I really feel for you, it's not surprising that you feel scared of it getting bad again, being in agony and bed-bound must be so unbearable.

I am hoping so much that it is better again today.

Pixie1771 · 22/06/2021 15:35

Same as yesterday....middling. whilst I'm grateful it's not gone severe yet I have a feeling that's where uts heading.
The pain is bearable atm but the fear is not. Sounds crazy but its like some form of torture just waiting.....
At present I'm trying to be positive as I can get about, also I'm on 20mg now of amitriptyline...so hopefully that will kick in soon. Been on it 11 days now so still maybe bit early. Have only just got to 20mg dose so hopefully soon.....
Too scared to go out or drive as if the pain kicks in more will be terrible stuck in car and away from home. Doing the usual chores round the house etc so rhats fine. Trying to keep moving periodically.
I guess I still have the 2nd root block in the offing and maybe it won't get as bad as before.
Will have to wait and see.....

OP posts:
Pixie1771 · 22/06/2021 15:39

Deer...I'm surprised they did so many at once. My consultant said not to fo this as that way you never know what part is involved.
I.E if it had helped you he wouldn't know which part was causing issue.
No haven't had ablation discussed yet. Guess he's trying to find the root of the issue.
It all takes so long.......

OP posts:
Pixie1771 · 22/06/2021 15:40

Deer....ps pilates made mine worse

OP posts:
doadeer · 22/06/2021 15:45

@Pixie1771

Deer...I'm surprised they did so many at once. My consultant said not to fo this as that way you never know what part is involved. I.E if it had helped you he wouldn't know which part was causing issue. No haven't had ablation discussed yet. Guess he's trying to find the root of the issue. It all takes so long.......
They could see the areas of concern from the MRI and I also had a nuclear scan. I have inflammation across my lumbar spine which compresses the nerves. Trying now to find out if I have an autoimmune condition that is causing the inflammation as the injections and procedures aren't really addressing the root cause of why my back is like this, they are just trying to deal with the pain.

Pilates doesn't improve my back, but it helps the rest of my body and if my core is strong it helps to support my back if that makes sense. But I do 1:1 with a specialist teacher and we change what we do depending how bad my pain is that day.

It's all so tough 😢 and long waits for everything... I've had 3 years of daily pain now. Very hard psychologically which sometimes the doctors don't acknowledge enough

Pixie1771 · 22/06/2021 16:10

Deer....yes I had a one to one with a pilstes teacher, then that night wow it started full blown again. So won't be doing that again. Although she did say I had a very strong core as I was able to do all the exercises she gave me including ones that many can't do. So at least I know that now.
It's all long winded and yes no one understands how regular pain eats you alive.
I do hope you get some results soon.
I think psychologically I'm wounded now as I keep thinking what if that area if my back isnt the cause ( my consultant said yes you have this issue but we don't know how long you've had it and it could have not been causing you issues for years)...and I eventually head down the huge surgery route and wake up and find my leg still hurts .
Someone suggested seeing a neurosurgeon for second opinion but I can't keep paying out for these things. To be honest it all gets a bit much.
I just want to be a normal person, I get jealous seeing people walking about.....thinking why are you ok and I'm not?

OP posts:
doadeer · 22/06/2021 16:18

Did they say they will see how this next procedure is then confused surgery route? The wait times on NHS are crazy. I have medical insurance I'm so fortunate, I'd probably still be waiting for first procedure if I didn't.

Yep I'm super jealous of everyone... I went from training as a yoga teacher doing the splits to a couple months later I couldn't walk, mine was triggered in pregnancy very suddenly. My body just won't move that way again.

I have a toddler so the bending down is absolute hell 😭

doadeer · 22/06/2021 16:19

Sorry not confused
Then go down the surgery route *

Pixie1771 · 22/06/2021 17:15

Yes I think that's what they want to do but they want to try another injection lower down first.
I paid to see him privately initially (again more info up thread)
Yes I was active, sporty and strong prior to this. The sciatica is just unbearable at its worst. I never go to bed with illness etc but when this is bad it's the only place I can go. Can't walk...literally. is the sciatica aspect something you suffer with or just the bad back. Tbh my back pain is minimal it's the sciatica that kills me

I'm writing this and I can feel the pain increasing..its not looking good to be honest .
I just don't think I can go back there again.....
What a nightmare. Mine started January, again more info up thread.....
Keep wondering.g will it ever end

OP posts:
doadeer · 22/06/2021 17:38

Well best of luck I hope you find some relief 💐

Qwertywertyisme · 27/06/2021 16:47

Pawsqueen

I gave L5 S1 issue too! Did surgery fix you please?

waterwaterwine · 27/06/2021 17:14

I feel your pain, I had a really bad flare up about 3 months ago. Ended up on naproxen, amitriptyline and co-codemol. I was told to take the amitriptyline at night and I was up to 50mg and it still didn't help. I was told the max was 70mg. At the height of my pain nothing was easing it. I was told exercise but the problem was I couldn't, I couldn't get down on the floor to do the yoga moves without crying in agony. There was a number of occasions I nearly wet myself because I couldn't get out of bed. It was awful and I feel so sorry for you. Eventually I was lucky enough that it started easing itself but I dread the thought of having to go through it again.

Qwertywertyisme · 27/06/2021 19:16

@Pixie1771

Hi Pixie

I am in exactly your position I'm sad to say😭

Mine started last August. I did nothing about it as knew my doctor wouldn't be interested and it was bearable. Then just before Christmas it got worse so I had phone appointment with Gp who sent me for hip/pelvis X-ray as both hips and bottom of back hurting. X-ray was clear but pain continued to get worse. A second phone appointment with nurse and I was recommended Codeine, Amitriptyline, Naproxen and Paracetamol and Lansaprozel (to protect my stomach) I was shocked at the number of meds but took them and was pain free in less than two weeks.

I stayed pain free (apart from my normal back twinges and aches I've had for years due to L5 S1) until April. I'd been working on the laptop sitting in a stupid position with my left leg tucked underneath me. I stood up after 2 hours and BOOM!!! It was back! I immediately got a third phone appointment with the nurse and again got the previous meds. Sadly this time they didn't work. I was taking 8 x paracetamol, 8 x Codeine, 1 x Lansaprozel , 1x Amitriptyline and 3 x Sertraline and 2 x Naproxen .

When I woke in the mornings the pain was horrendous for the first hour and I could barely move and driving was horrific. The pain was steadily worsening so I asked for a face to face with the Gp, but on the day they refused to see me stating my nose was running (I blew it once) and I possibly had Covid. I was so angry as they were so dismissive. The previous week they'd messed up my prescription leaving me with no meds over bank holiday. I was so angry I write a letter of complaint and was given a new appointment for the next week. By then I was in really bad pain and had made a private appointment with a neurosurgeon who was highly recommended to me for back/sciatica issues.

Like you I saw him once and now he's seeing me on NHS so I jumped the queue. Wrong, but I am desperate! However the road to that point was horrific with my surgery blocking every step.

Then on the last bank holiday it came on even worse than before and I was taken to A&E by my son! They were absolutely awful! Told me my pain was a 6/10 (how do they know.) as they said "well you're walking, sitting and assume you've driven here" I had not driven. Had 2 mins with a doctor who then sent me home to see my Gp.

Two weeks later the pain increased again and I drove straight to the surgery in tears with no appointment. Was told "I really don't know what you expect the doctor to do" They agreed to let me wait for the Gp and I sat crying for 45 mins in surgery, pacing and sweating with pain. The Practise Manager came to talk to me and asked if the consultant was sure it was sciatica. She said getting referred to see him on NHS was not easy and may not be possible. She said I could not go on the NHS to a private hospital. When it was finally my time to see the Gp they told me I had to drive to their other surgery. By then the pain was easing off unfortunately. I think this went against me as at the other surgery the Gp examined me and said "There is no urgency to rush for surgery until all other methods have been tried. I am not concerned and will book you an MRI. The wait is 8 weeks" I have spent hundreds and hundreds of pounds on other methods which all made me much worse.

Following day I ring my surgery asking for them to refer on NHS to consultant I'd seen. Was told no, as the hospital wasn't on their system that I wanted to go to. Phoned private hospital and told to be pushy with my surgery as all other surgeries referred to them so could not understand why mine couldn't. I did this and was told only the practise Manager could sort this and she was busy. However half an hour later a different receptionist called and told me that the hospital was in fact on their system and she would call me the next day to sort it. She didn't call so I drove to the surgery and was told I had to go home and call her. I stood peering through the window whilst calling them and was told she would call me back. When she did she said I could not be referred to the consultant I had already seen because he was a neurosurgeon and I needed to see an orthopaedic back surgeon. I told her it was my right as a patient to choose and I was choosing him and I would not accept anything else. By the next day they had referred me.

Then two weeks ago I lifted something and a 🔥 spread through my lower back. It wasn't even that heavy but it did something terrible and the pain was unbearable.

This has got worse and worse and by Friday night I was rolling around the bed and floor in hell. My son drove me to A&E (not the last place) and I literally fell sobbing through the doors crying out for help. I collapsed onto a chair and was rushed through. I truthfully though I would die. They gave me morphine which did nothing, followed by diclofenac and two other drugs. Even after all that I could feel pain. I was prescribed 6x Gabapentin daily and sent home. I have to say that they were excellent in the care they gave me. The consultant had suffered it himself and fully understood

I am now back in bed, can hardly walk, cannot stand up straight and can only lie down. I'm on 30 tablets a day now and the pain is going nowhere. I am devastated and terrified!!!! I see my consultant in mid July and now need to fight for an urgent MRI from my surgery who have been ascaklous as it is possible to be.

So so sorry for this rant

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