Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: countrybumpkin on August 14, 2017, 07:31:56 PM
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My ongoing saga of squidgning discs! Last year i spent 4 months unable to walk due to severe leg and back pain from my L5/S1 disc prolapsing but eventually the sciatica went away and I could walk for 10-15 mins at a time. I knew the longer my back had not siezed up on me the closer it was to doing it partly because I was not behaving and doing far too much walking and standing. Sure enough end of June my back siezed up but I was able to straighen up after 2 weeks and no sciatica a few weeks later it went bang and I was totally bent double for 2 weeks unable to walk more than a few steps. I thought I was getting better as I was able to be almost upright by lunchtime and then the severe sciatica pains hit, 90% left leg ( back pain is left sided) but also affecting same place on right leg plus severe pins and needles and twitching muscles.
Saw GP last week and I have weakness in left foot as well and am being referred for yet another mri scan ( I will be magnetic soon). It's either the same disc as last year that has collapsed more or the one above it and only the mri will say for sure.
I cannot find any pain relief that touches the pain. Codeine and morphine affect my breathing so not allowed to take them. Tramadol does nothing, I cannot metabolise it. Tried gabapentin last year but never got a high enough dose for pain relief becaue of the side effects.
The neurosurgeon I saw last year said wait 4-6 months and if no better to have spinal injections before considering surgery as at that time I didn't have any weakness just pain. The waiting times on nhs for neurosurgeons
here is horrendous up to a year!
So if you have managed to read to end of this diatribe,many thanks!
I am struggling with the level of pain and the mental effect of being even more useless than usual and having no social life!
Any words of wisdom or cheering up would be appreciated.
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I really sympathise as my life has been halted these past few years with 4 episodes of slipped discs and daily back pain where I spent most times resting it as any activity, carrying, standing, sitting , getting on and off sofa caused the nerve pain
Naproxen didn't touch the pain so dr referred me to a MSK dr. I've not had any MRIs but he said I have a lower dysfunctional/ arthritic facet joint that is next to the disc that herniates and the nerves there are what is causing the pain. Because I cannot tolerate opium pain relief I had 2 options: try amitriptyline or be referred to the pain clinic to have steroid injections or the epidural type
I'm trying amitriptyline, it's changing my life. It's not stopping all the pain but I can do so much more now. I'm up and down off the sofa so much better. Yesterday I carried shopping in from the car with no problems. As I say not pain free but so far I'm managing to push through what pain I have
I hope you find a solution x
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Oh - I have intermittent sciatica due to not bending properly [note to self :kick:]
Look round your home and make sure that all your seating is 'correct' for you. Are the places that you sit regularly 'correct'? Shoe wear can make a huge difference to stance. Compensation etc. which aggravates any slight weakness! Are you easier sitting or standing, 3 weeks ago I had to stand for hours every day as I was unable to sit in any comfort, sleeping wasn't a problem.
Do you drive, if so, how is the car seat? [Some men developed sciatica due to having their wallets in the back pocket whilst driving ::) ]
Ice packs? or heat on the area? One can buy 'toppers' for camping, maybe one on your side of the bed? Himself has one when we are in the camper as extra padding ::)
:bighug:
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Its painful in my lower back when I stand up and try to walk and within about 3 seconds of standing I get severe pain in my left leg focused at the back of the lower leg and then after a few steps I get pain in the front of the right ankle. I also get severe pins and needles in my left foot. If i continue to stand or walk I get stabbing pain in pelvis and down front of thigh.
Because I have had many years of discs herniating I have the best of everything in the house! Stressless chairs and tempur cloud mattress. I don't drive ( partially sighted) have a cushion on the car seat as I find new cars have hard seats especially leather ones.
Annie, I cannot take any anti depressants as they cause severe acid reflux. This is why I was given gabapentin last year. There is also pregabalin which I may ask about - they want you to try gabapentin first as its cheaper. Both drugs come with some nasty side effects and I know so many people who have had to come off them because they produce dementia like symptoms :o they are also a drug that is hard to come off as well even when done slowly but given the level of constant pain I am in it could be worth it!
I have been offered steroid injections via the pain clinic as well and again if this does not improve soon I could be willing to try them. I also have a prolapsed neck disc making it incredibly difficult for me to lay on my front ( causes severe vertigo) but they said they would not put me on my front until they were ready to do the injections.
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Steroids are used to reduce any swelling ?
Maybe amitriptelene [sp] would work with a gastric liquid prior to taking? like lining the gut .........
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I read the leaflet on amitriptyline. As an AD standard dose is 75mg. I'm on 10mg but can increase to 20mg if needed so maybe side effects wouldn't happen at such a low dose?
X
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How awful countrybumpkin :(
Have you tried fentanyl as a painkiller - I had patches which were effective, a bit hallucinogenic but better than the pain, alongside anti sickness tablets.
I then had an epidural (steroid) which helped dull the excruciating sciatica pain and allowed me to start physio, which really helped.
When I had a flair up about three years ago (bulging C6 and L4/5) I had a course of acupuncture which despite my scepticism, 'cured' me :D. I now do Pilates and Tai Chi to keep mobile.
Good luck and I hope you get some relief soon x
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I tried amyltriptylene at minimum dose and still got severe acid reflux!
Not sure if I can have fentanyl as I cannot take morphine or similar drugs? Will discuss drugs further with gp tomorrow at my appt.
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I can't have anything that will make me ultra drowsy, weirded out etc, as I drive, work in payroll so need to be on the ball, plus babysit grandchildren. Because codeine weirds me out I can't take anything else like that. I'm also waiting on a physio referral. Since starting the amitriptyline it's become apparent just how debilitating my back pain was. I'm chirpier, more active and just all round happier
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Let us know how you get on!
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Not sure if I can have fentanyl as I cannot take morphine or similar drugs? Will discuss drugs further with gp tomorrow at my appt.
Might be worth having a chat with doctor. I had an anaphylactic reaction to morphine but can tolerate Fentanyl and Tramadol
Good luck :)
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interesting re fentanyl when allergic to morphine, I assumed it was connected. Will see what Dr says tomorrow. I am at my wits end with the level of pain, the codeine is not touching it at all >:(
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CB, I know we share a common problem, except I have been down the surgery path.. I rattle with pain meds. I really wish I could get up to the higher dose of pregabalin as it does help, but the side effects are just to bad......but that's not to say you won't tolerate them......Worth a try?
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Thanks Ellie. I had a google of fentanyl and its a big no no for me as just codeine makes me feel I can't breathe and the one time I took 5mg of oramorph which is half the starter dose I def felt very tight chested for 4 hrs so they won't give me anything that has this effect as I am super sensitive >:(
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My doctor won't give me fenatol patches, saying they are highly addictive. I am on Butrans patches, but I doubt you could tolerate them either. To be perfectly honest, nothing really helps much with chronic pain, in my case anyway,I am waiting to go to the pain clinic and maybe have a trial for a spinal cord stimulator.
Have you been referred to the pain clinic CB? It seems you are having to wait a long time to see a neurosurgeon, could you perhaps phone his/ her secterory?.......if you are having numbness you should be seen.
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ellie - could you use the drug on alternate days i.e. your regular dose plus higher ........
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I have tried very hard to make pregabalin work CKLD, I can only manage to get up to half the recommended dose, and missing a dose just brings on the nerve pain very quickly.....But for some people it is like a miricle drug.....Just not me.
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It's a real shame :'(
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It is, but that's life :-X
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But .............. :hug:
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What I have noticed since starting amitriptyline is that I wake now with a painful back whereas I didn't used to, its movement that has always triggered my nerve pain, not rest. The pain actually woke me last night trying to shift positions. I'm desperate for this to work as I really am scared to go down the injection route x
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Annie, you probably wake with back pain now, because the amatrip is is making you sleep better, and this unfortunately will make your back stiffer.....
What is making you really scared of injections for your back?
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Ellie I'm scared for a few reasons
1) I've had no MRI so this facet joint dysfunction diagnosis is purely on examination only, I've had 4 episodes of diagnosed herniated disc in lower back but the MSK dr ignored that saying it's the joint, yet I know it's nerve pain I'm feeling
2) I've been quite unlucky in medical procedures in the past
3) the pain of it !
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Annie, I totally agree that you should have an MRI scan, a proper diagnosis most definitely cannot be made without one.....
As for procedures going wrong, over the years I have had too many steroid / epidurals to count and never had a problem........Operations are a different matter >:( ( with me )
As for being painful.....yes they are uncomfortable, but over very quickly, and I promise you, your are worrying unduly......
Guess where I have been this morning? I have had a steroid injection in my knee......it's was an OUCH! moment. Gave the doctor a pat on the back he was so nice. :)
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Sorry Annie, I forgot to ask what you had done that went wrong?
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Saw gp this morning and she said I need an mri scan. I don't have any true numbness its more intense pins and needles and feeling as if there should be numbness in my foot but all my reflexes etc are fine. I knew the wait on nhs for scan is around 4 weeks with 2-4 weeks wait for results. I found that Alliance Medical who run alot of nhs scanners will do same scan for various prices depending on how lon you wait but can be as cheap as £199 so my gp was happy to refer me to them and I should get my scan within 10 days although i do have to travel quite a long distance to the nearest scan centre ( in a nhs hospital!). The results are back wihin a week as well. I had got a very small inheritance recently so am using this to pay for the scan so don't feel as guilty for spending "our" money.
As for pain relief, gp said all opiod drugs are a no no and its probably due to my having bad asthma as a child and these drugs are triggering the breathlessness but its too iffy to keep trying. She agreed I lack a liver enzyme which is why tramadol has no effect. So its the nerve drugs like gabapentin. I am going to try them yet again and try to get up to the 900mg min dose for pain relief but do it over a week slowly. She also told me to take paracetamol regularly rather than just when I am crawling the walls with pain. I had grand total of two half hours sleep last night before waking up and the pain stoppin me going back to sleep >:(
GP also made me laugh by telling me to stick my finger up my bum and clench daily and if my bum does not clench at all them thats medical emergency and I need to go to hospital ::) ::)
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Oh i hope things get sorted for you countrybumpkin
Well I'll think twice before opening my mouth as during the night/waking and today has been my worst day pain-wise since starting amitriptyline. I have a physio assessment next Wednesday
Ellie: to name a few blunders....
amniocentesis- gynae took blood from placenta instead of amniotic fluid from sac.
Foot op - staple went through toe and side of foot nerves
Laporoscopy- theatre staff left swab inside me
Straightforward delivery but non delivery of placenta- they pulled so much cord broke and I haemorrhaged ending up in theatre and suffered complete prolapse
Hysterectomy- nerve damage and 2 clots were not seen plus ovaries blood supply was severed resulting in ovarian failure at 32
So although some things were 'just one of those things' some were definitely unprofessional and I do worry about anything being done with a risk factor. It seems if it can happen it will, to me!
I'm sure there's more but they're off the top of my head x
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CB I hope the gabapentin works for you and you get some relief.
As for sticking your finger where the sun don't shine 🌞 , your GP will be checking for Claudia Equina, and tingling in the legs and feet will be just one of the symptoms that will be making her cautious. ( Good doctor) .....After my last back surgery I woke up with partial cauda equina in my saddle area, and still have it.......So please if you get any numbness around there, do something about it quickly.
As for using some inheritance money, don't feel one tiny bit guilty.....it's yours.
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Annie OMG!! :cuss:........won't list mine, but last back surgery I was given a 5% chance that I could be left in more pain and with some paralysis. :-X..........we just don't think it can happen again do we :(
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I know Drs are human and so can make mistakes but it worries me
With the amnio (I'd had one before with previous pregnancy that was fine) but this new gynae scanned me then turned scanner off to do the amnio, realised what he'd done and quickly started over with a clean needle. I asked if I should rest when I got home and he said no need to (last amino instructions were bedrest 24hrs following) within hours I was getting tightenings so saw my gp, she said it's internal bleeding and have complete bedrest otherwise I'll miscarry. I was so angry at that consultant for his blasé attitude to what was precious to me, why I let him do the laporoscopy and hysterectomy I'll never know x
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Was baby Ok Annie?
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Yes thankfully, but I continued to contract the whole way the pregnancy, I was on bedrest more than I wasn't and had to start my maternity leave at 29 weeks instead of my original plan of leaving on due date. The dr bullied me into the amnio, I was willing to accept the consequences of not having an amnio x
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Hindsight and all that. When ladies are vulnerable the Medical Profession should be more open to discussion :bang:
X-rays can show a lot but MRI where available is probably better. One can diagnose back problems by the way a patient reacts to pressure points and movement, but it is nice to have a clearer picture to refer to!
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CB I hope the gabapentin works for you and you get some relief.
As for sticking your finger where the sun don't shine 🌞 , your GP will be checking for Claudia Equina, and tingling in the legs and feet will be just one of the symptoms that will be making her cautious. ( Good doctor) .....After my last back surgery I woke up with partial cauda equina in my saddle area, and still have it.......So please if you get any numbness around there, do something about it quickly.
As for using some inheritance money, don't feel one tiny bit guilty.....it's yours.
The gp also said that unless someone has bowel/bladder involvement then no back symptoms/level of pain are considered urgent for scan. I have had weird feeling around my anus for years when I first get out of bed in the morning, feels as if it should be numb but isn't and goes away within minutes. All previous scans have been fine re cauda equina. Last year another Dr insisted she do the finger up bum test herself and as long as you can squeeze they are happy!
The private company got the referral this afternoon and phoned me within an hour to make the appt :o I had two price options, first one scan within 5 days or the cheaper one 14 days so chose the 14 day one as thats still 2-3 weeks quicker than the nhs would have been.
I have taken the paracetamol today as she advised and used ice pack alot and has been a bit easier so may wait a few days before starting the gabapentin, I really don't like this drug but know that it may really help the pain ::)
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Just an update everyone ;D Had my mri scan and another disc above the one that prolapsed last year has gone squish. I was improving with physio but yesterday I went to try out mobility scooters :o and all the getting on and off did not do me any favours and today I stood up and wham got knifed in the back again so although as yet not as bad as all those weeks ago I am almost back to square one again.
My gp asked me if I wanted to be referred for surgical intervention just 2 days ago and I said not at moment but after today I wonder how long I can avoid either injections or surgery.
Pain wise I found out I cannot take any of the nerve pain drugs ( there are only 3) due to severe side effects and an exisiting health problem stopping me using the 3rd drug so only dihydrocodeine ( I react badly to oramorph) but trying not to use them due to the lovely effects on bowels ;D ;D ::)
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Sorry to hear your back issues continue. I have a vision of a lady whizzing here, there and everywhere! Not that they go fast really! Have you chosen one?
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Sorry to hear your back issues continue. I have a vision of a lady whizzing here, there and everywhere! Not that they go fast really! Have you chosen one?
Yes bought a second hand one that is only 6 months old and hardly used like new but half the price of new one and still got 6 months full warranty and further year labour warranty. Like new cars they depreciate the most in first 6 months.
The shop was saying that loads of people are losing their higher rate mobility allowance and having to return the scooters and this one they had supplied less than 6 months ago - they said it was awful as some of their customers had been with them for years then having to return them. Its the 8mph one so have to register it with dvla. Thankfully I live in a quiet area so can whizz round the area practising before going further. My neighbour can't wait for it to be delivered so she can have a go ;D
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How cruel for those who rely on them. My Mum has one, but is too frail to use it, but my Dad will get use of it, particularly when he has to stop driving. He's 92. They are fortunate to have inherited some money to cushion their old age.