A CROSSOVER POST: WARNING - this post... - Atrial Fibrillati...

Atrial Fibrillation Support

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A CROSSOVER POST

BenHall1 profile image
67 Replies

WARNING - this post straddles both Pain and AF …. so … if considered inappropriate please delete, I understand.

A few weeks ago I posted that during the night I had to make a comfort stop and in doing so I tripped over the cat … went flying through the air and smashed my osteoarthritis ridden left shoulder into a door jamb. Brill ! Thus started a learning curve …. about pain ! I know enough about AF ( after almost 14 years since diagnosis ) to not be too phased about it. About Pain I know/knew nothing…. Until now.

Damage report on shoulder nothing broken, referred to MSK Interface for Ultrasound. Meanwhiile on medication for pain relief. ( my personal feeling is some sort of rotator cuff damage ). Although I tried to see my GP she referred me to our surgery Physio, she in turn gave me exercises to do but which I found too painful …. I mean, I couldn’t put a shirt or jacket on without assistance much less do painful exercises. Meanwhile I’m still waiting for an appointment for the Ultrasound, also, GP meanwhile starts me on ( for a second time ) Amitriptyline at 5 mg doses. This is the second time I’ve tried this for pain relief with diarrhea as a side effect. Soon abandoned that. Asked for an appointment with GP again … was told she would phone me.

Waited a few days and GP phones … apart from asking how I was she launched into a previous tried enquiry …… would I come off Warfarin ( my preferred anticoagulant ). She then went onto explain that with the next level of pain relief ( two choices – Gabapentin and Pregabalin ) …. however this required me to come off Warfarin … would I do so ?

Of course I would because not only is the pain now impossible but I cannot sleep – maybe, 2 hours here, an hour there, sometimes 4 hours … its a QOL thing now. Waiting now for the prescription for new meds. So I am wondering if you wise guys and gals out there have any experience of side effects with any or all of the following : Edoxaban, Gabapentin, Pregabalin and/or coming off Warfarin onto Edoxaban or any other of these NOAC’s. GP claims Edoxaban has proven to have the least bleed rate of all A/c’s, including Warfarin yet still does a good job of protection.

So, there we are … I’ll post this on Pain Concern forum too in the hope that someone else will have endured rotator cuff damage.

Meanwhile the cat is absolutely fine, enjoying life and preparing for Christmas !

John

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Threecats profile image
Threecats

Hi John

I’m so sorry to hear what’s happened to you. I developed rheumatoid arthritis some years ago and the excruciating pain was something else. Not being able to sleep at night due to pain is incredibly debilitating and so you have my sympathies with that.

I don’t have any direct experience with the drugs you mention (I was on a different cocktail of meds) but my neighbour has been on Pregabalin for OA of the neck for some years and said the difference it has made to her quality of life and ability to sleep at night is like night and day. She forgot a dose once but never has since!

I hope you get some answers from those with direct experience soon and also hope the new pain meds work for you.

All the best, TC

Ps glad the cat is alright! 😊

BenHall1 profile image
BenHall1 in reply to Threecats

Thank you for your comments Threecats ... we'll see how it all goes. I must say I don't think any of us understand pain until it mugs us ... I certainly didn't. And compared to some types of pain mine is low key I suspect compared to other poor souls.

John

Desanthony profile image
Desanthony

Glad to hear the cat is OK. Sorry to hear about your pain. I know what pain is like having both chronic neck and back pain which causes me to lose a lot of sleep and rest time. I don't know if you are able to but I use a TENS machine to relieve the pain in my back before I go to bed so I can manage to get a few hours of sleep at the start of the night. Exercise, of course is important as you must move the ensure that you can continue to be able to move the shoulder - if you get what I mean - otherwise you are not going to be able to move it after any damage is hopefully repaired and you will continue with painful movement until you get through that again - making it a long painful haul. As for the amityptyline I was on that and it just made me feel like a zombie for most of the morning - even when I tried taking it earlier and earlier in the evening as a friend who was also on it suggested I try to do. My next stop was gabapentin but decided to miss out on that. I have done a pain management course which helped a little and gave me some pointers in how to avoid the worst of the pain - it may be worth checking if a hospital in your area does these.

In the meantime all the best and try and keep moving your shoulder just a little now and again trying to get a little more movement every time if you can.

BenHall1 profile image
BenHall1 in reply to Desanthony

Hi Desanthony,

Thanks for your comments. Yes I have a TENS machine which is the WiFi version and I have found it of use, but for me it doesn't bring any sort of lasting relief. My Physio has got me to do exercises with huge rubber bands (Therabands), at the moment I'm using the yellow. The point that I keep making to her is the amount of pain I go through just putting on a shirt or a jacket puts me off .... that said I do well understand what you say about keep exercising the shoulder and work up to and where possible through the pain threshold. I do do this but it is quite challenging, nevertheless I take your point about keeping mobility in the shoulder joint itself.

May I ask why you missed out on the gabapentin ? I began to think of a pain management course but haven't followed through on that, yet ! I really feel until I have the Ultrasound and the report it will generate it's all guess work at the moment. All I know so far is that nothing is broken. I am finding that if I use a blue gel type Ice Pack ( wrapped in a tea towel ) I get quite a bit of relief from that - again though - nothing lasting, but it does take the edge of the pain.

John

Hashihilary profile image
Hashihilary in reply to BenHall1

Hello John, before my AF journey started, I was experiencing assorted inflammatory and/or autoimmune conditions, treated symptomatically. One was excruciatingly painful carpal tunnel syndrome, for which I had surgery. Then I developed post-operatively Complex Regional Pain Syndrome (CRPS) where the brain continues to react to a problem which is no longer there. I was put on Gabapentin, which I took for nearly a year before discovering that it is an opioid and highly addictive!! I stopped it immediately (it wasn't working for me anyway). I saw the hospital physios for a course of treatment which involved retraining the brain. That was truly amazing for pain relief. I now have (years later) ongoing tingling and some numbness in the tips of two fingers from nerve damage, but otherwise I'm fine on that front. (My AF has stopped now too, but that's unrelated).

BenHall1 profile image
BenHall1 in reply to Hashihilary

Hi Hashihilary,

I must say when I put on my post " Crossover" I was unsure if it would be allowed and unsure what sort of response it would attract. The reality is I am blown away by the collective wisdom that has emerged. I am really interested in the name of the process you refer to "hospital physios for a course of treatment which involved retraining the brain". Mind over matter ???? Does this process have a name / a label ??

My shoulder injury journey started 20 to 30 years ago in Australia when I fell off a bungalow roof onto a raised timber deck. I hit the deck with my right shoulder spearing into the timber. Attended hospital who confirmed nothing broken but the collar bone had been shifted upward slightly. Also advised that in later life it would become arthritic. So, true, both right and left shoulders have osteoarthritis. On 1/4/2022 my GP, acting off Xrays only gave me a cortisone injection into right shoulder and no problem at all, ever since....... until just lately when I too experience down the right arm, hand and first two fingers - tingling and some numbness in the tips of two fingers ... but I can live with that.

Now left shoulder is an even bigger problem but despite Xrays GP will not repeat injection. Don't know why. So the damn pain continues, searching for a suitable pain control drug continues and so does the wait for an Ultrasound. So it comes back to the name of the process of brain retraining ... I'll give anything a go 😱😱

John

Hashihilary profile image
Hashihilary in reply to BenHall1

Hi Ben, I can't for the life of me remember what the treatment was called, but if you google Chronic regional pain syndrome (CRPS), I think something will come up as an alternative to pharmaceutical treatments. Of course, I don't know if that's what you're experiencing, but I do know there is increasing awareness of the problem, and strong meds don't touch it. The numbness you speak of suggests that one of the nerves to the hand is being irritated in the shoulder or neck. I recommend an osteopath or chiropractor who can look at the mechanics. The cortisone treatment is anti-inflammatory, but won't deal with anything underlying. This is great as long as it goes, but my experience with steroids is that once it stops, the pain comes back. You need to get it sorted!

BenHall1 profile image
BenHall1 in reply to Hashihilary

Hashihilary ....... thank you for your comments. I don't think my GP is going to contribute much very quickly .... I'll have to await for the Ultrasound to see if I can get any more accurate diagnosis.

Desanthony profile image
Desanthony in reply to BenHall1

My wife had a colleague in work who took gabapentin and he had to stop work because of the gabapentin as he just couldn't concentrate and found the effect it had on his mind and awareness was not worth it. He went from being a relatively active sailor on his good days to pretty much sitting or laying down all the time and put on loads of weight - he didn't experience as much of the pain but he also didn't have any life so eventually came off it - which took a long while and put up with the pain but the pain eventually also made it impossible for him to work.

You can alternate hot and cold compresses which have some effect again nothing will be long lasting until the reason for the pain has been found and can be treated effectively.

Get your name on the waiting list for the pain management course - I wated 3 years for mind back in the late 90's and had even moved to a different area by the time I got it and travelled back to the original area to do it.

Good Luck.

Jalia profile image
Jalia

This sounds awful for you John. I'm on Warfarin and was given Gabapentin for neuropathic pain following my hip replacement operation early last year. No mention of switching to a DOAC.

I do hope you get sorted very soon. Puts AF into the shade doesn't it ?

Staffsgirl profile image
Staffsgirl in reply to Jalia

How did you find gabapentin? I’ve been offered it for neuropathic pain, but don’t like the sound of it.

Jalia profile image
Jalia in reply to Staffsgirl

It did work for me initially but then I stopped it and went back to cocodamol. I can't for the life if me remember why but there was obviously something going on for me to stop taking it!!!

Worth giving it a go though. I know that it can be very beneficial.

BenHall1 profile image
BenHall1 in reply to Jalia

Hello Jalia,

I have to say, this stuff DOES REALLY put AF into the shade ... really and truly ! I'm currently reading through all the kind replies to my latest post. My GP has tried to shift me off Warfarin before and I have gracefully declined. As I said, she has asked me again - and she may well have conned me on this occasion yesterday afternoon, BUT TBH, I'm so wrecked with all this pain along with a lack of sleep I'd do anything, anything !

She tells me she is concerned that I get the bleed risk as low as possible. She said, if I go onto Gabapentin and stay on Warfarin then the bleed risk is still high ... UNLIKE AT THE MOMENT when I'm on CoCodomol and Warfarin with a low bleed risk. In her view the best bleed risk is of Gabapentin and Edoxaban.

Meanwhile I told my GP that I have asked the Surgery Secretarys to approach my local Private Hospital to carry out the Ultrasound on the understanding I will pay for it myself. It is currently in my GP's 'In Box' awaiting her signature then it goes to the hospital and they will contact me for a date and discuss payment stuff. The sooner the Ultrasound is done and we identify the precise problem the sooner we can get rid of the pain and I can get on with my life. Hey Ho ! 😀

John

Jalia profile image
Jalia in reply to BenHall1

I would agree with you John. Do anything to get rid of the terrible pain . Being unable to sleep compounds it all.

Hopefully you will now get your Ultra sound in double quick time ! Keep us informed .

BenHall1 profile image
BenHall1 in reply to Jalia

Yes, I will Jalia .... thank you.

John

Desanthony profile image
Desanthony in reply to BenHall1

Hope it comes through soon.

Nerja2012 profile image
Nerja2012

Tried all of the above Ben over an 8 year period of chronic nerve pain, gabapentin, pregabalin and amitriptyline but they all affected my AF, I found out this year it was an undetected nerve sheath tumour in my arm pit, I has surgery 3 months ago and at last I am pain free, prescription strength co codamol was my saviour, hard on the stomach but you have to take something when pain is really bad. I feel for you, good like and get well soon .

BenHall1 profile image
BenHall1 in reply to Nerja2012

Thank you Nerja. Well of those three that you have named I've tried the Amitriptyline - the side effects were unacceptable ( diahorrea ) so thats off the list. So its Gabapentin next and see how we go. Yes, I've used the prescription grade CoCodomol since my lead up to Knee Replacement surgery back in 2015. It was fine, but not strong enough now. Thank you for your good wishes.

John

Rainfern profile image
Rainfern

That sounds awful. I hope you get quick relief from a change in medication. When my husband suffered severe back pain he was unable to get to the pain clinic but found John Cabot Zinn’s book “Full Catastrophe Living” very helpful. Zinn pioneered pain clinics, maybe worth checking out though clearly get those painkillers sorted asap. I’ve taken both Edoxaban and Apixaban anticoagulants. No side effects and very easy to manage.

BenHall1 profile image
BenHall1 in reply to Rainfern

Hi Rainfern,

😂Thank you for your tips, and for the book reference. At the moment I have an abundance of time on my hands to explore things ..... beats the hell out of daytime Tv ... that's a short cut to insanity ! 😂😂

John

Popepaul profile image
Popepaul

Hi Ben. Sorry to hear about your recent experience. About 5 years ago I had a torn rotator cuff and it was indeed very painful and somewhat debiting. I could not lift my hand above my head nor put my arm behind my back. It affected my sleep. I looked it up on YouTube, all the physios gave the same advice re exercise and rehabilitation. I followed the advice the exercises were painful but I gradually extended the range of movement. I made a full recovery within about 6 weeks. The exercises where however very painful but the pain gradually diminished.I guess many people would urge caution using YouTube to improve your health, which is fair enough. It did however work for me.

I believe that you are still working and I assume that this is an important part of your life.In your position I would pay privately for a scan and then pay to see a Physio. You want clarity and you want to resolve the issue.

I personally would always be wary of drifting into the long term use of analgesia.

As an aside, I recently paid to see a Physio for a torn calf muscle. He told me that the current waiting time for Physio treatment here in Dorset is 58 weeks.

Finally I take Edoxaban without any side effects or bleeding issues.

Good luck with your treatment.

BenHall1 profile image
BenHall1 in reply to Popepaul

Hi Popepaul,

Thanks for your comments. With your exercises did you use these large rubber bands, marketed as Therabands I think. My Physio has recommended I start with the yellow, supposedly the weakest of the colours. I don't have a problem with YouTube I used them quite effectively following the exercises I was allocated after knee replacement surgery.

Yes, you are correct I am still working ( although off the road at the moment ). I have already spoken to my surgery and they are arranging the Ultrasound and I will pay for it myself. Currently waiting for the private hospital to contact me and make arrangements and also sort out fees and payment.

I found the problem with exercises advocated by Physios was that they tended to resort to little matchstick men pictures whereas with videos there was not only the video itself but an account of why you were doing the exercises and what you were trying to achieve.

Wow ! 58 weeks treatment wait for Physios in Dorset. Where I am in Cornwall I was about 2 weeks to see mine (NHS), although I must say she was a staff member of my Surgery.

Thanks very much for your input.

John

Popepaul profile image
Popepaul in reply to BenHall1

I did use bands, but also static objects, doorways etc to increase the movement range for my arm.

jeanjeannie50 profile image
jeanjeannie50

Oh John, I'm so sorry to hear this. Life likes to throw things like this at us when we least expect it.

I hope you weren't rushing after getting out of bed? It's never worth it as my dear dad age 88 discovered when he had a stroke and lay on the bathroom floor of his house for 3 days, before my brother broke in and found him. As I've said to you in the past, sit on the side of the bed for a while and don't rush when you make those comfort visits in the night. Didn't you see the cat?

Pain is dreadful isn't it, I used to think we'd never have to suffer that as we grow older - however we do. You would really think that scientists would have found something by now that really dulls pain. I have a friend who is often in great pain and no meds she takes will dull it. Another still wears morphine patches years after having shingles. I wonder if morphine patches could help you with your pain?

I really hope you haven't done too much damage and will make a speedy recovery.

Jean

BenHall1 profile image
BenHall1 in reply to jeanjeannie50

Jean ... do you know I do/did/always remember your advice about sitting on the edge of the bed - I followed through and always do this, I might sit there for a minute or so to let my HR readjust from lying to when I am vertical. Armed with my torch type night light I proceeded out the door into a hallway also with a night light. That particular night the cat was sleeping in the middle of the hall area, got startled by my presence, chucked a hissy fit, I lost the plot until I hit the door jamb. Carpets in the hallway are similar colours to the cat. 😢

I had asked my GP about Butec Patches but she thought not a good idea. What amazes me is how the pain can totally disappear for an hour or so and then return with such ferocity, like I'm stabbed with a stiletto, deep inside the shoulder and last for an hour or so.

Thanks for your comments.

John

Dotty in courtyard surrounded with green shrubs
Rainfern profile image
Rainfern in reply to BenHall1

What a beautiful cat!

jeanjeannie50 profile image
jeanjeannie50 in reply to BenHall1

Gorgeous cat.

I'm giving you a gold star for heeding my 'not getting out of bed too quickly' remark.

BenHall1 profile image
BenHall1 in reply to jeanjeannie50

Jean, I always do as I'm told ........ well sometimes 😂😂😂

Teresa156 profile image
Teresa156

Hi John,

I’m so sorry to read about all the pain you’re in, it sounds awful and I really hope that you get some relief soon. I’m also glad the cat is ok 😊

I haven’t got any experience of coming off warfarin and onto a DOAC, however, is it worth asking your GP why you can’t take warfarin with gabapentin or pregbalin? I have taken a medication for years now, which actually is contraindicated to all the new DOACs and the only anti coagulant I can take, is warfarin, which I’ll be going onto next year in preperation for an ablation. I’m not on any anticoagulant at the moment as 57 and my CHADs Vasc is 1 for being female.

I have looked at the NHS NICE guidelines which show interactions between meds and I can’t find any interactions between warfarin and those medicines they are suggesting, that’s not to say the interactions aren’t there, as obviously I’m not medically qualified and there might be something I’m not seeing, but I do wonder if cost is a predominant feature here ( not that I’m cynical!) as I do know that within the NHS there was a drive to put people on DOACs.

I just wondered if it was worth asking or challenging that was all. I also notice Jalia, above, wasn’t told to stop warfarin, when it was offered to her, so there must be something in it?

All the best to you and I hope you’re pain free soon.

Cavalierrubie profile image
Cavalierrubie

Your pain sounds excruciating. Having to jiggle your meds is a difficult one. I am on Warfarin. I have tried all the new anticoagulants and cannot tolerate any of them. I wish you better luck and hope you soon feel better.

Mrsvemb profile image
Mrsvemb

Sorry to hear that you are still in a lot of pain John.

I seem to remember that your GP has been trying to get you off Warfarin for a long time. Personally, I suspect that she is using the pain meds to achieve this. Having had a quick check, I cannot find any contraindications between warfarin and gabapentin, but what do I know?

Why don’t you speak to a pharmacist and double check this.

I have had all of the DOAC’s and Warfarin. The only one that I can tolerate is dabigatran, but that comes at a cost of hair loss. Edoxaban, was an immediate intolerance for me because it contains a filler that I cannot tolerate.

If I remember rightly, the switch from Warfarin back to a DOAC was simple. This is the NICE guidelines for making the switch:

‘Stop warfarin, and measure the international normalized ratio (INR): If the INR is less than 2, start edoxaban. If the INR is between 2 and 2.5, start edoxaban the next day. If the INR is greater than 2.5, wait until the person's INR has dropped to less than 2 before starting edoxaban.’

Hope this helps John and I hope that you get some relief from your pain very soon.

Val

BenHall1 profile image
BenHall1 in reply to Mrsvemb

Val,

Your comments about my GP having her wicked way with me and getting me off Warfarin ....... I have to totally agree with you, I was conned for sure. But, TBH, the pain has been so much that I just do not have the will to fight with her. Mind you - prescribing it, getting it from the pharmacy, shoving it down the neck and seeing what my reaction to Edoxaban is may well be 4 different things. At least, if push comes to shove I can always go back on Warfarin. Checking with a pharmacist is the way to go.

Re the switch back to a DOAC, yep pretty much what my GP said ... she said get my INR to less than 1.9 then switch.

Thank you for your good wishes Val.

John

mav7 profile image
mav7

BenHall1

If your pain/movement does not subside, recommend a visit to A&E and ask to evaluate MRI vs Ultrasound.

MRI is a much better diagnostic tool. Also, they may determine if a cortisone shot is appropriate for the pain. Best to You !

bassets profile image
bassets

I hope you can sort out this horrible pain you are having. I have been changed to Edoxaban and haven't had many problems with it if this helps? Best wishes.

KMRobbo profile image
KMRobbo

JohnAmytriptiline is bad for AF:

"Is amitriptyline contraindicated in atrial fibrillation?

Amitriptyline should not be used if there is a history of QTc prolongation, arrhythmias, recent myocardial infarction, or heart failure, as per the FDA product labeling. Amitriptyline toxicity may cause acute myocardial infarction. [29]18 Jul 2023"

ncbi.nlm.nih.gov › NB...

Amitriptyline - StatPearls - NCBI Bookshelf

They tried to give it to me with my bad neck! I declined!

I was 2 years post ablation with no AF so I did not want it back! My GP agreed but proposed Duloxetine another anti depressent used for nerve damage / neuropathy which he advised was less likely to promote arrhythmia and I got a prescription but never took them!

Fortunately I found another way to manage the pain.

Not medically trained

Best wishes

BenHall1 profile image
BenHall1 in reply to KMRobbo

Hi KMRobbo,

Thanks for your comments. Yes, I read that in the bit of paper in the packet about Amitriptyline and couldn't believe that my GP had prescribed it, but, that wasn't the reason for binning it - it gave me violent diahorrea. I have to say that I'm very dissatisfied with this GP.

This time with the new set of drugs we are going to try I have downloaded the NHS 'job description' of these new drugs and they don't seem too bad. We'll see. Generally speaking, in the last 3 decades I have not suffered ill side effects of any drugs I been put on - short or long term. Amitriptyline is really the first I've had a problem with.

The only happy outcome of this unfortunate "pain" process, over the last 4 to 6 weeks, is that my AF hasn't even raised its jolly head ... the only thing I'd observe is that my BP has increased progressively and at times dramatically and so has my HR. The only pain relief I've got so far ( pending a new one ) is CoCodomol 30/500 and that seems to be keeping things fairly stable. For how long I don't know.

Cheers.

John

Outtheresinger profile image
Outtheresinger

Hi John I am in a similar position to you but with hip pain. It is virtually impossible to get an appointment with the GP - the only way is to phone at 8:00 but on two occasions I dialled the surgery number over 150 times but never got through to them. I paid to see a physio who said I needed an ultrasound but the NHS waiting list was 9-12 months so now I am having the scan done privately but I have still had to wait 7 weeks to get a scan. As NHS so overstretched more and more people paying to go privately thus lengthening the wait for private treatment. I was prescribed Pregabalin for previous pain issues but I would not take it again. It was impossible to get off it. In the end I had to have the prescription changed from tablets to liquid and then weaned myself off by reducing the dose by a few mls every couple of weeks. My ultra sound scan is today so maybe I will get a proper diagnosis and some targeted treatment. 🤞

Good luck John I hope you can get your shoulder sorted but to avoid further incidents with the cat you will have to make him wear a light up collar overnight 🤣

BenHall1 profile image
BenHall1 in reply to Outtheresinger

Hi Outtheresinger,

Thanks for your very interesting comments. The cat - NOT JUST A LIGHT UP COLLAR BUT ONE WITH TWINKLY COLOURED XMAS LIGHTS TOO....😂😂😂😂😂😂

Gosh ! I am soooooo surprised at those waiting times. I certainly hope I don't have to face that sort of time ..... unbelieveable ! Thanks also for your tips on changing from tabelt form medication to liquid ..... and that has got me seriously thinking about the Gabapentin that I've now been prescribed. I'll try the tablet form first and if no good I'll ask for the liquid. Had never thought of that approach.

The way things are with the NHS and Private Care I might be better off flying to Sydney and getting my old GP ( from when I lived there ) to get me sorted in their private healthcare system. 😱😱😂😂

So, good luck with your scan today .... I hope it's a great experience. How long do you have to wait for the results and an interpretation of them .... and of course any action that the results recommend ???

Thanks again.

John

Tapanac profile image
Tapanac

I seem to have lost the post I just wrote back to you

I just wanted to say how sorry I am that you are in so much pain and hope you recover very soon

You say about edoxaban being the least bleed problem, but my EP said apixaban was the kindest doac to the brain and stomach

Good luck and happy Christmas to all

Tenshun profile image
Tenshun

Hi Ben l can sympathise with your situation as l fractured my right arm in January which had not healed and l am waiting to hear from my orthopaedic surgeon as to whether they will operate on my arm. I also have rotary cuff damage on my left shoulder.I am on Edoxaban for my paroxysmal Afib and Pregabalin 300mg per day and Dihydrocodeine 20/500 8 times per day for my arm pain, sleeping is a real problem even after all this time. I was on Amitriptyline but couldn't handle the side effects of drowsiness and being constantly tired. The main side effect of Edoxaban is blood in my urine and possible tiredness. The Pregabalin and Dihydrocodeine causes bad constipation for which l take a laxative but otherwise no other issues.

lizzieloo2 profile image
lizzieloo2

Hi. My husband suffers with a bad back which plays up every now and then. A couple of years ago, he started getting pains around his kidney area and the GP treated him for a water infection. When it did not resolve, she saw him face-to-face and made him bend down to touch his toes and then get on the couch while she raised his legs. She then said all was fine and told him to get up which caused his back to spasm so she immediately diagnosed a slipped disc. She sent him for an urgent MRI (which never materialised) and prescribed Diazepam and Pregabalin. He hobbled home and collapsed in bed in agony and couldn't move an inch - I even had to fetch a pot so he could wee! He took the meds but nothing happened except he was seeing crocodiles coming out of the ceiling (the Diazepam apparently) and I kept ringing the GP who kept saying the Pregabalin takes time to work. After 12 hours of agony and being unable to move, I rang an ambulance in the middle of the night because he was crying with pain. They gave him gas and air which did nothing and then morphine. They took him to hospital for monitoring because of the morphine and he came home the next morning pain free. He waited 2 months for an MRI and eventually paid to have it done privately. It showed no slipped disc but degenerative arthritis of the spine. He then spent 2 months weaning himself off the Pregabalin as if you stop it too quickly, you can become suicidal and it can cause all sorts of problems. He would never touch it again but it does seem to block pain signals. I do hope you can get your pain under control

ozziebob profile image
ozziebob

I don't know the reason why your GP believes Edoxaban has "the lowest bleed risks of all DOACs and Warfarin", but you will get reassurance about Edoxaban in this German research ... pubmed.ncbi.nlm.nih.gov/347...

Lowest risk results for strokes, and equal lowest risk results (with Apixaban) for major bleeding. Assuming the results are not biased, what's not to like!

BenHall1 profile image
BenHall1 in reply to ozziebob

G'day ozziebob,

Many thanks for your words ... you haven't met my GP 😱😱 !! Basically we don't get on at the best of times ... apart from which I am in that much pain I take the least line of resistence and focus on controlling the pain . Whatever it takes. She doesn't realise I intend when all my pain stuff is controlled and I'm back at work, I'll go back on Warfarin ! As soon as I get the Ultrasound done and we can identify the problem and get it treated .... that's it.

Qualipop profile image
Qualipop

ALl I can say is you have my sympathy. My left shoulder started up 10 years ago. I've got used to the pain and restrictions but about 2 months ago my right shoulder suddenly went; absolute screaming agony. Can't put arm into jumper sleeves or dressing gown, can't reach up, can't use it at all unless I hold my arm close to my body. Pain is right on the front outside point of my shoulder. I actually do scream if I move that arm without thinking. Physio also gave me exercises but I couldn't do them. I'm already on high doses of opiates for a crumbling spine so there's nothing else I can take. I do have two herniated discs in my neck too so wearing a soft collar at night has helped a bit. Unfortunately because of my spine,the only position I can sleep in is lying on that right shoulder but I also have to keep my arm straight ie elbow not bent or the ulnar nerve traps in my elbow. GPs are absolutely useless at treating pain as are pain clinics. I've had 30 years of trying them. They only ever offer amitrip and gabapentin . As for coming off blood thinners to take gaba; that's the first I've ever heard that. YOu need a scan of yoru shoulder and to see orthopaedics. My own experience with gabapentin was 1 it didn't work and 2 it made me seriously suicidal. I know it does work for some but i t's only given for nerve pain.

BenHall1 profile image
BenHall1 in reply to Qualipop

Hi Qualipop,

Thanks for your comments - the first third of your comments is me too. I'm not coming off anticoagulants to take gaba .... I'm coming off Warfarin in favour of Edoxaban then I switch over to Gaba. I have to get my Warfarin INR bloods down below 1.9 before I move away from Warfarin. I do all my INR blood tests at home as I have my own testing device, a Roche Coaguchek XS device.

I have told my GP that I want the Ultrasound down pronto and I will pay for it myself rather than waiting an indefinate amount of time for it to be done on NHS. I'm just waiting for an appointment from the Private hospital now.

May I ask how long you were on the Gabapentin before you realised it didn't work and you ditched it ?

Qualipop profile image
Qualipop in reply to BenHall1

I suffered Gaba for around 2 months. MY son was doing his GCSEs at the time and I scared him witless just begging to die; partly because of the pain (That was in my spine and Gaba didn't help at all) but mainly because Gaba depressed my mood so much that I just couldn't cope. I'm normally an upbeat person who just learns to deal with things. I've had c hronic pain for 30 years but after maybe 3 weeks on Gaba the depression started and I genuinely wanted to end it all. My GP now has in big red letters on my record, "DO NOT PRESCRIBE whatever they call Gaba and Lyrica". I've never met anyone else who reacted so badly to it but I certainly did and I believe at the time there were lots of suicides in Americawhere it was originally developed for epilepsy until they discovered it helped some people with nerve pain and now it's the "go to" treatment for chronic pain. My GP told me it doesn't work if the pain is caused by inflammation like rheumatism or arthritis. What I will suggest to you is, keep it moving; don't let it seize up.

BenHall1 profile image
BenHall1 in reply to Qualipop

Oh my gosh Qualipop ...... goodness. Thank you for telling me. I think I need to do more research into Gaba before I start it. I may not be doing the Physio exercises I've been told BUT I do maintain movement and motion in the joint. As I say, may not be text book but I do it even with the pain.

Qualipop profile image
Qualipop in reply to BenHall1

Please remember I don't know if others react like I did . I do know many people swear by it. It just didn't work for me. Good that you are keeping the joint moving. My osteopath says the longer it's immobile the longer it takes to recover. Have you considered an osteopath? YOu may prefer to know exactly what's wrong first. Just don't choose a bone cruncher.

Cookie24 profile image
Cookie24

I take Gabapentin and Eliquis.

BenHall1 profile image
BenHall1 in reply to Cookie24

Hi Cookie24,

Did you have any problems with Gabapentin ? Is it effective for you ? Have you been on it long ? Thank you.

Dollcollector profile image
Dollcollector

I feel for you Ben. I have osteoarthritis in every joint including neck and slipped discs. It is not a good combination with afib as there are so many painkillers that cannot be taken. I find that paracetamol which l am allowed to take has no effect at all on the pain. It is too mild . Good luck.

BenHall1 profile image
BenHall1 in reply to Dollcollector

Hi Dollcollector,

I'm on Warfarin and so my pain relief is limited. I'm currently on CoCodomol 30/500 and it is too mild. Actually I had a right knee replacement in Nov. 2015 and the pain from this damn shoulder is worse than any pain I had from the knee both pre op ( even though in the end I could hardly walk ) or post op.

Thank you for your comments.

Ducky2003 profile image
Ducky2003

Sorry you're in so much pain. Hopefully they'll give you a med combo that covers all bases.Reminds me of a card I received some years ago, with a cartoon of a red faced guy sprawled on the floor, with a cat sat nearby. His wife was in the kitchen shouting "What do you mean you tripped over the cooking fat?" 😊

On that note, rest up and hope you can still enjoy Christmas.

Best wishes

Ang x

BenHall1 profile image
BenHall1 in reply to Ducky2003

Hiya Ang,

Nice to see ya around again. Hope you're well. I love that quote of yours .......... love it ........ can't stop laughing ... hilarious 🐱🐱🐱

I don't do resting very well but I got no choice this time ... meanwhile best wishes for Christmas to you too. Stay safe.

John

Ducky2003 profile image
Ducky2003 in reply to BenHall1

I dip in and out but must do a proper update when I get time. Still waiting for the valve repair op but very fortunate that the AF has been quiet since my last cardioversion 18 months ago.You'll have to do as you're told this time. At least you'll get a bit of a reprieve as those pesky kids won't need chauffeuring in the school break.😊.

BenHall1 profile image
BenHall1 in reply to Ducky2003

🙂🙂 .... actually I miss them. For the most part they are guys and gals around 16 to 19 but I am required to carry adult or other non student passengers travelling over my route. Its an education for me .... the girls are real proper young ladies. The guys are a total pain by and large and I often have to pull off the main road into a truck layby and read the riot act. I'm not a miserable old git - but I will only drive a 'safe bus' .... anybody doesn't like that can get off and walk. The 'Jack the Lads' now understand me. I can still remember what I was like at around 16 to 19 😂😂😂😂. Interestingly the girls are much more confident and self assurred and polite. The guys are very unsure of themselves, a bit immature on not very self assurred. A bit surly and always testing me. I don't have to do much except stop the bus, walk down to them and remind them that the CCTV cameras in the bus are working !

John

Ducky2003 profile image
Ducky2003 in reply to BenHall1

🤣🤣🤣. Unfortunately, they don't get any better when they get older, present company excepted. 😁😁😁.

BenHall1 profile image
BenHall1 in reply to Ducky2003

😂😂😂😂😂

mrgwair567 profile image
mrgwair567 in reply to Ducky2003

🤣😂🤣😂! That made me laugh ou loud !!

Cha275rL profile image
Cha275rL

I broke my shoulder 3 years ago, falling on the ice. Never felt pain like it. Went to hospital and the nurse pulled my jumper over my head! Thought I was going to faint, then it was X-rayed, she told me I had broken it and told me to take paracetamol, which didn’t even look at it. I do understand how you’re feeling, but was never on those drugs. Just regular co codamol, and stayed on the Edoxaban. Good luck with it, you have my sympathy ❤️‍🩹

mrgwair567 profile image
mrgwair567

Hi I was prescribed Gabapentin after months of headaches and neck problems! Takes time to kick in but it worked for me. I had the runs for the first few days but after that tummy settled down. Hope it works for you! My anticoagulant is Apixaban

Auriculaire profile image
Auriculaire

Sorry to hear about your shoulder. I had rotator cuff tendinitis 10 years ago and it was very painful especially getting dressed and undressed. I had to get my husband to do my bun. Despite physio- acupuncture and ultra sound '-it lasted 9 months! I had it in the other shoulder later but not as badly. I could not sleep on the affected shoulders. How about putting the cat out at night? You could always get it a cat igloo for cold nights. A friend of ours has custom built cat kennels for her cats and they look very cosy. I suspect your GP is trying to pull a fast one and if you are happy on Warfarin and have no side effects I can understand changing is a dilemma. Hope the new drugs provide some relief .

BenHall1 profile image
BenHall1 in reply to Auriculaire

Hi Auriculaire,

Yes, indeed getting dressed undressed is so damn painful ….. unbelieveable ! I have to get Mrs BenHall1 to help me with putting on a shirt and/or jacket. That’s harder than taking them off, even so I still need help.

Yes, both shoulders, the right was bad and my GP gave me a steriod injection on 1 April 2022 ….. much to my surprise, sorted, even now 18 months later. Now it is the lefts turn. Oddly, GP won’t inject it instead is referring me for Ultrasound. Its a stepping stone. So right, I can only sleep on my good shoulder now….. that is when I can sleep at all. Our cat is a natural born nocturnal hunter killer. That’s where she spends her nights, however, on this particular occasion it was a howling gale and pouring with rain. She refused to go out just curled up waiting for me 😱

I am sure my GP is pulling a swiftie too, she has asked me some time ago if I would switch to a NOAC, I declined. TBH, so much pain I just can’t be fighting her at the moment. Instead, I’ll go with the flow for now and use the new Post CoVid NHS and play her at her own game in the New Year ………. I’ll tell her I get side effects and tell her I wanna go back to Warfarin. I mean, I never see her these days anyway, it’s all about telephone discussions so she’s never gonna know !! The last time I saw her was 1 April 2022. Good innit ?? 😂

John

Auriculaire profile image
Auriculaire in reply to BenHall1

You might even get side effects. I do from Apixaban. Not everybody tolerates the DOACs as well as most people here.

BenHall1 profile image
BenHall1 in reply to Auriculaire

Thanks. Yes I've been following the comments of those AF'ers who are on these DOAC's and I must say I have been surprised at the number of folk who state that they have or are having problems.

Auriculaire profile image
Auriculaire in reply to BenHall1

Well I certainly hope you don't get my worst side effect which is pain amplification . Given your current state that would be the worst outcome! We always found that a pretty good way of forcing the cat out when horrible weather made him want to stay in was to pick him up and shove him out the balcony door . He could go down his ladder and come back in through his catdoor but only into the part of the house which used to be the old bakery. From there we never put in any more catdoors partly to stop access to other cats but also to keep him out as well. Sometimes when we went out in winter we would leave the door into the hall from that part of the house open so he could go out when he needed to but strangely he never ever came back in that way- it was like he was waiting for us to call him and invite him back into the house. We still miss him a lot . Cats are wonderful creatures and give endless pleasure . Yours is beautiful.

JPLivin profile image
JPLivin

Hey John,

Sorry to hear about you accident with the Shoulder... I was put on Gabapentin about 4 years ago and the problem I had was that it only works for pain in extremely high doses.

I stayed on the drug for about 6 months for Nerve pain, but even at the high doses just could not get relief, as it is a seizure medication. I am not one to buy into "well if you take 10 a day it also relives pain" non-sense...

So, I got off of it and went back to Opioids, in particular Hydrocodone 10/325. Listen I am sure everyone will disagree, but if taken as prescribed it does the trick with low risk taking 1 every 4-6 hours... With ZERO feeling of addiction or wanting the drug unless I was in pain...

My personal thoughts are that this was the far better route for me and now years later with a Pacemaker, I would not touch Gabapentin or Lyrica as it messes with your body's electrical system.

Just my experience and thoughts...

Feel better my friend!

Johnny

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