Ok, and an excuse to post this photo of my local. The beer sanctuary is even more flooded now.
I've seen posts about how difficult it is to get satisfactory pain control. I've always had problems, even in hospital long before diagnosis. Conversations go like this
Me: The morphine's not working.
Them: give it time
Me: It's had an hour
Them Give it a bit longer
Me It's had another half hour, no change
later
Me: The morphine's not working.
Them: give it time
Me: It's had an hour
Them Give it a bit longer
Me It's had another half hour, no change
Do you see where this is going? I'm on 40 mg Amitriptyline at the moment. It's only doing a bit to the pain but at least I'm sleeping.
Paracetamol/codeine mixes tend not to work unless I'm really tired and my body HAS to sleep.
So the question is, Does anyone have similar experience? I'd just be interested.
I only know a couple of non fibros with this. My pain nurse agreeed with me that the safe dose (the one on the packet) is ok for my 90 year old 6 stone gran, but nowhere near enough for me, more than twice her size and twice as active.
I wonder if there's a link to littlewelshy's question.
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Hi Paul , I am lucky enough to have a doctor who understands fibro and he allows me to adjust my morphine according to what I need, I have oramorph which I use to find the level to use MST, I then reduce it back to what I call my "maintenance level". I would really push your GP and ask for referral to a pain management team. Unless I'm still speaking gibberish from last night, I think this may be a way forward for you if your GP insists on being uncooperative.
Whoops meant to mention, ask your GP to increase your amitriptyline if it is helping you sleep and you can cope with it, 40mg is a low dose, I'm taking double that, and I do find for me it did help with the pain as well as the sleep as we increased the dosage, but maybe it was in my mind, I don't know, but it may be worthwhile. My doctor says it is very useful in fibro for some people. Hoping that may help a bit too.
Yeah, antidepressants are working for lower back pain too. I'm worried if the dose goes up much more I'll be even more useless at work. I see their physician next week and I plan to mention Nortriptyline to my GP next time. I still need to give 40mg time to settle. Yoicks.
I had Ami for depression some years ago and it was ok. I was off work at the time (6 months)so I didn't really record any adverse effects on my ability to function.
Yep it a vicious cycle Paul sadly
You mention you have a pain nurse but have you seen a pain consultant at all? If not ask to be referred, if yes ask to go back, it could be beneficial as he/she can change your medications to suit your needs. Will probably also refer you to pain management which I found incredibly useful. Not everyone does but its worth a shot!!
Also, go and have a chat with your GP about the Amytriptyline again and state clearly its not working for you and ask for an alternative.
Codeine isn't too good anyway I was on that for years the only thing it ever subdued was dental pain and headaches.
On the subject of them saying give it more time I think they mean that it can take a while for it to get into your system before working properly and not give it another hour unless I'm misunderstanding you ?
Hope you get someone to listen to your needs soon and keep at them it is the only way forward sending you extra strength healing and pain busting fluffies and sorry your beer sanctuary is flooded. I'd be upset if mine was flooded and I don't get there much anymore
Ta, yes to all that. The dosages were not even working by the time it was time for the next
I don't have a regular pain nurse, only when an inmate and last time only saw her 20 minutes before discharge - really helpful. she said she'd have a word with staff but it was a bit late by then.
We're still at the experimental stage with GP and so far he's ok. I suppose I'm just having a bit of a moan through frustration at the time it's taking.
It raises the question of putting caffeine into the mix, but not for me. It doesn't help and only keeps me awake, negating Amitriptyline
caffeine............... I slowly started to drink less caffeine. The de-caf products don't tend to taste as nice either but they're like anything you get used to them eventually.
I stick to my 2 coffees in the morning strong decent stuff and then its green tea in the afternoon sometimes decaf sometimes not!
Its okay to have a moan too, it is frustrating and if we bottle it up we make ourselves worse At least here you know we're listening and understand too
I would have a chat with your GP Paul because getting your mix of meds right isn't necessarily going to be right first time!! You need to try something else to see if it's better or not as you have nothing to compare what you're taking at present with....... no marker!
Are you still practising PMR?
pain busting fluffies heading your way infused with strength and healing xx
Yep. Caffeine before lunch. Decaf after. (As much to do with cost as anything - decaf is dearer and as you say, not as tasty). PMR sometimes 2x a day. Lie down in a darkened room, banana just before bed, lavender oil on pillow. Sleep centre based wind down. 40mg Ami just before bed time. It's all up for adjustment and seems to be beginning to work.
I'll probably go quiet the next few days. Water getting alarmingly close. We have the Royal Navy in town putting out sandbags.
Fatigue too.
Flooded badger sett not a pretty sight. Besides earthworms (our main food) getting rare.
We're still here on site though and not going any where if you decide to check in!!
And I agree, how expensive is decaf coffee please???
You know you're doing everything you can for yourself it's time they listened to you. Emma's right you remind me of when they kept shrugging me off too, be confident and persist xxx
WOW Navy huh!! Are you marooned?
OH and I are feeling really sad for you all down there wishing we could help, but sadly we can't do much apart from keep you company and offer an ear of support
Aww Thanks for that Sian. It's really good to know I have friends who support me even though we've never met and you don't know how horrible I am.
Tesco cheap instant 49p, decaf £1.49 same size Even though a Pot of coffee lasts 3 weeks or so I still watch expenses. (couldn't resist that one)
ever so glad I get free scripts, which is unfair. It's not for fibro but diabetes which means all my meds are free. Now 9 items on the repeat script. that would be over £20 per month ouch again. Oh, and I have to go to hospital for my next tooth extraction. ouch again.
zeb I find that green tea makes me pee so avoid it at night. Do you find the same?
• in reply to
heheheh sometimes and its green too
Honestly though, I'm awake by 4am most mornings but I don't drink tea or coffee as a rule after 5/6pm I stick to juices, water and squashes or herbal teas/ fruit infusions.
Green tea is full of anti-oxidants which is why it makes you pee I think and also added to the fact that tea is a natural diuretic as well so we will pee more often. my understanding anyhow, but I could be wrong!
I am exactly the same, Oramorph etc opioids apart from Tramadol do nothing to relieve the pain experience. As per the recent research has suggested that opioid medications do not work as efficiently in Fibro patients as in healthy people because of a lack of available opioid receptors in the brain of Fibro patients. According to the EULAR Guidelines for the Management of Fibro, strong opioids - e.g. morphine - are not recommended for Fibro. If a doctor is unwilling to prescribe strong opioids for a Fibro patient, it is not necessarily because they do not believe that the patient is in pain: probably more that they are unsure that the side effects and risk of addiction with strong opioids are worth it when they do not work very efficiently and other forms of medication may work better (Lindsey Middlemiss 2009)
I have also found Amitriptyline ineffective and also Diazepam. There is research to suggest that Amitriptyline can be effective in small doses and when a patient feels the dosage is not as effective after time and a GP may suggest an increase that will not necessarily provide any more relief than the smaller dose did, please see below;
I have personally looked into Diazepam and without any FibroAction hat on whatsoever and have my own theories as to why it does seem to have any effect, reading up on it's pharmacological action. However, I am not Fibro Specialist and just reading between the lines.
However, my personal opinion in general about this resistance in Fibro appears to be associated to the pharmacological action on parts of the brain which abnormalities have been reported. Please see the link below about key findings in Fibro;
OOh. Ta. that will keep me quiet for ages. (Who said hurray). I remember Simon Weston's comment (he's the guy who lost his face to burns when HMS Sheffield was bombed in the Falklands) the nurses changing his dressings told him not to be such a big baby little realising they were removing partly healed skin, too. OUCH. Interesting point about opioid receptors. I'll mention that.
Hi Emma I only find Tramadol works for me too have tried umpteen pain meds over the years and its the only one that's been effective for me to any extent.
My Neuro doc told my GP to put me on Diazapam to help with sleep because sleep depravation was why I was experiencing the pins and needles, paraethesia and spasms also stating I had no neurological disorder and didn't want to see me in neurology again!!. That was 6 months before the neuro team put me on pregabalin because of the massive whole body spasms I was having after surgery and then they admitted I probably had Fibro and 6 weeks later my Rheumy diagnosed me Strange world of medicine we have to live in
Okay breathe sian......................... sorry about that
Very interesting what you have written and the links too, thank you
Incidently, by the way, my GP agreed with me not to put me on Diazepam stating it wouldn't be of any good to me. I have tried other meds from the same family when younger.......... nortryptyline for example.
Just a quick note of interest to you both a that there has been suggestion that Tramadol works in Fibro due to it's pharmacological pathway where it is said to increase Serotonin which we know has been reported to be low in Fibro.
Tramadol is stronger than codeine and enhances serotonergic and adrenergic pathways as well as having an opioid effect (Dr Gurvinder Rull, patient.co.uk)
I find the Sustained Release best and I think I remember you have these too, unless I am being foggy brain !
Thank You for your kind words we are OK here so far, feeling for the ones who have been really affected by floods. The storms are not helping Fibro at all, so I suppose (excuse the pun) we are all in the same boat there.
I have read other members before discussing weather and it does affect our symptoms but I think it may be the air pressure change rather than the change in the actual weather. Again only my personal opinion
Thankyou shall give them a read sounds interesting and reminds me of my last appointment with the pain consultant.
I take Sertraline for anxiety and depression, which is to increase seretonin levels and now what he said makes sense. He recommended that it was futile to change my meds because it would be difficult to come off everything.
I am on sustained release for managing day to day and regular for top up. Taking the regular wears off leaving me in agony and feeling like I have the flu so I like the sustained release better.
He suggested something regarding what is basically seretonin toxicity which can occur if levels aren't balanced properly I'm taking a lot of seretonergenic meds so am looking forward to reading the articles as they may explain it further. I didn't really understand what he was was talking about at the time, curiously concerned now!
Atmospheric changes/air pressure are a nightmare as well as temperature for me, I have found anyway!
Its a difficult one because draughts and windy weather crucify me and make me feel like I have the flu and I end up with loads of layers on in bed under the duvets shivering until I fall asleep after taking top-up tramadol and then wake up sweating and drenched as a result
Humidity increases my pain levels and I overheat and end up constantly running my pulse points under the cold tap so
I agree that I don't think it is actually the weather either but couldn't explain it
I've just finished battening down the hatches so hopefully will keep warm We're safe the wind hasn't got too high yet had torrential rain today, snow yesterday, tomorrow who know's?
OH's birthday tomorrow and supposed to be going out somewhere, nothing planned as usual just winging it
It can be very serious condition and your GP is right to be wary.
However with no FibroAction hat on and this is only my personally opinion, if we are low on Serotonin I am assuming it would need a large increase in Serotonin possibly I'm guessing over and above that of healthy people to cause this condition.
Of course, I am not a Specialist so there may be more complexities to this condition than I know about which in conjunction with higher levels of Serotonin cause this condition.
The reason GP's are careful I would imagine is due to the possible high numbers of misdiagnosis of Fibro and therefore I would assume that the possibility & risks of this condition increases.
Interesting discussion and it reminds us how complex the Central Nervous System really is !
Well that makes scary reading, how on earth would you know?
It was an interesting discussion Emma and thank you very much for the links too.
Your opinion of the seretonin dosages is probably not far from the truth, I was taking maximum dosage of 200mg of sertraline up until October, I think, when I asked my GP if I could come off it because of the syndrome but couldn't explain why very well :o.
I now take 150mg and to be honest forgot that I was trying to come off it, this discussion has reminded me!!
I've not really had much luck with anti-depressants but I do think my seretonin levels are low which is why the low dosage of sertraline didn't affect me.
Like you its my own experience and thoughts on the subject but again, yes, very interesting discussion
Ta again and I agree with the pressure thing, not the humidity or SAD. Still ok - just. Council already put portaloos in place. River levels rocketing to the point we've made the news. Nessie sighted in Winchester. Perhaps she ate the sharks
hello ther im new on here finding my way around glad iv found this site ther seems to b a lot of nice people on here I really hope to make friends on here myself I hv fibro really bad hd it ov 2 years now its in my legs arms hands u name it im on paras dyrocodine which I take 4 times aday plus antripriline 50mg but stil only sleepin f 2 hrs then awake alnite I hv to keep goin docs al the time sm times u think they aren't listenin to u its so frustrating when yr in pain hope to here from u soon for a chat id like to make friends on here bye f now glo100 x
FibroAction is a UK charity who are raising awareness & making up-to-date, reputable and evidence-based information about Fibro more readily accessible and this is at the heart of what it we do.
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Welcome in Glo100. You seem to be going through a lot. This is one of the saner threads. The site works a lot like other social sites. Please don't hold anything back. If you need a rant, moan a question answered or a virtual hug, it's all here. There's usually someone else awake too, whatever time you log in. We can be a bit zany at times. It looks like laughter deserves its title of the best medicine. Emma's a mine of information
i'm still fairly new to fibro i suppose so haven't tried any really strong meds. the amytriptaline has helped a little but ordinary painkillers (paracetamol etc) have no effect whatsoever on me and never have done, even pre-fibro. i was recently given codeine which helped with a toothache but had no effect on fibro pain.
i had a bad experience with local anestetic a few yrs ago, i wonder if that was linked to pending fibro. basically i went to have a lump removed from my armpit and after many painful injections the anestetic didn't work and i had it cut out with full sensation, it was pretty bad!
Just wanted to say how sorry I am that you are suffering in this way at the present time. It never ceases to amaze me how some GPs behave towards their patients!
All the best my friend and if I were you I would seriously think about seeing another GP.
Thanks my friend. I think sometimes it's a matter of experience and we patients need to work at it too. We'll get there. I plan to be an "expert patient" as the NHS calls it. Take charge of my own treatment under the tutelage of a medical expert. I just hope the FOG doesn't make that impossible.
I have always had a hard time convincing GP's about this, I'm even resistant to anaesthetics, it takes an awful lot to knock me out for an op!
I remember last time the anaesthetist said count to ten, you'll be out by five..... When I reached 15 she believed ...
Thing is, I have awful low blood pressure, so they have to be careful, when I was five I had an op on my eyes, and had to be resuscitated. I woke alone , terrified, with dried blood on my face, in an oxygen tent.
All I can say to that is WOW. I've had extra doses at the dentist for instance and even then we had to say "get on with it we all want to go home today".
that must have been an awful experience as a little kid. Bad enough as an adult.
I cant' work out if that first letter in your name is a capital "i" or small "L". Either way it seems appropriate.
I am on a great deal more pain meds than you which at the moment makes my pain levels manageable most of the time. this is my current daily intake of analgesia 50mg amitriptyline, 100mg tramadol+1000mg paracetamol 4x daily - taken together makes tramadol more effective, 700mg gabapentin 3xdaily. This looks like a huge amount but i have learnt that i need to get a balance between pain and side effects of meds and at this minute this is working occasionally if my pain is bad i up the gabapentin staying within 3600 daily maximum. Hope this is helpful
Wow you are aren't you? Do you get a hangover or dopiness from that lot? It looks like a good mix
It's ok the packet/GP warning about using heavy machinery but stumbling into the path of a moving vehicle usually hurts. I use paracetamol and codeine together but not caffeine because it stops me sleeping despite all the doziness from the others. Every couple of weeks I go cold turkey on Para and codeine because my body ignores them. TBH I only use those 2 when things get bad but by then it's usually too late. It's only on the second or 3rd dose I get some relief - like 8 hours after the pain.
You're right, it's a balance between control and side effects. I've been lucky so far with those. I don't even hallucinate on morphine
I'm guilty of impatience. It takes time to find the right levels and I've done enough experiments on myself as it is, which is why the apparently quick diagnosis so I should know. I'm a good observer and reporter.
Sorry, don't mean to whinge on but when I find useful info I mine it to the max
i have been taking pain relief for 17yrs now so whether i get a hang over or not is difficult to say but i don't feel out of it in any way unless i have not slept well. I also have CFS so do get very fatigued at times but this is not like every morning. I suppose for me the drugs enable me to have a life i think without them i really would not be able to function at all. I am wheelchair bound due to fibro so perhaps do not have same physical needs as others. there is a benefit in relation to take a variety of pain relief in that i can stagger them throughout day which works well as never get to point when last lot has run out before next ones kick in just taking all of them at night and all-ami in morning - i have never been on morphine GP says that will be the next step!!
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