"Pain Fog" and medication: Hi for the past 1... - Pain Concern

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"Pain Fog" and medication

hosbay profile image
21 Replies

Hi for the past 10 years I have suffered from acute and chronic pain, mainly due to sciatica. I have had cortisone injections and caudal infusions plus decompression operation, etc and I have tried all kinds of medication but, generally, nothing has really had much benefit and I have generally relied on a strategy of self-management techniques to mitigate the symptoms.

I think I have always had a tendency to be a bit nervous and, as a consequence, I have found that this can tend to make me over- apprehensive and anxious and this leads to an escalation of my pain resulting in what I call severely debilitating "pain fog". The pain increases my nervousness and anxiety which in turn increases the pain intensity which in turn increases the nervousness and anxiety and this positive feedback loop can only be controlled by lying down and trying to sleep. I have tried medication like gabapentin, duloxetine and pregabalin but they had very bad side effects with minimum benefit. In my first episode of acute sciatica 10 years ago I was also given various pain killers and amitriptylene and diazepam but because of my condition I was unable to assess the benefit of these two drugs.

In the past 18 months I have had another failed procedure (spinal chord stimulator) and another 2 months of acute sciatica last summer. I tried Duloxetine 16 months ago and pregabalin 2 months ago and they did not really help and left me extremely low, tired and demotivated, etc and I now find it is much harder to self-manage my condition. I would like to know if anyone has experience of taking amitrypteline and/or diazepam to control the mental aspect of "pain fog"

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hosbay
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21 Replies
PainConcernProjects profile image
PainConcernProjectsPartnerCommunity ChampionPain Concern

Hi Hosbay,

I am sorry you are struggling with brain fog. Unfortunately, it is common for people living with pain to feel anxious and for this to effect pain levels. It's great to hear you have put self-management strategies in to place as there's increasing evidence for the effectiveness of these managing pain.

Here are some tips for managing brain fog, which you may like to consider implementing if you haven't already: wiltshirehealthandcare.nhs....

You may also like to see our leaflets, particularly 'managing pain', 'stress, pain and relaxation', 'managing emotions with chronic pain' and 'neuropathic pain' - painconcern.org.uk/product-... or book on to one of our online Pain Education sessions, which covers emotions and pain etc ow.ly/bz3450SZb7g

I don't have any experience of those medicines for brain fog, but will leave your post up in case someone else does.

I do hope the above information is useful and you find something to help ease your symptoms soon.

-Pain Concern Admin

hosbay profile image
hosbay in reply toPainConcernProjects

Thanks for your reply and links to information. There is quite a lot said about "brain fog" but I call mine "pain fog" because there is a positive feedback between the physical pain and the mental symptoms causing both to escalate quickly to a very high, intolerable level.

PainConcernProjects profile image
PainConcernProjectsPartnerCommunity ChampionPain Concern in reply tohosbay

Thank you for confirming what you meant. From what you've said, our leaflets and pain education session may still be useful for you as those topics (the link between physical and mental health) are covered. I hope that helps.

-Pain Concern Admin

Konagirl60 profile image
Konagirl60

I’m not exactly sure what you’re asking. Can you explain further after reading what I’ve asked you? Thank you.

I’ve taken Amytriptyline at bedtime for years. It’s a nerve pain modulator and it’s quite effective. I’ve tried to wean off of it but I get increased pain ( my right pudendal nerve is permanently damaged in some spots ) so I continue to use it with nerve pain relief.

Prior to getting the three surgeries I needed, I was left ‘poly drugged’ on seven different sedative like meds. None of them helped my severe neuralgia ( burning pain from Pudendal nerve entrapment ) but they did eventually cause me to lose normal cognitive functions. I couldn’t sleep and no medication helped.

I used two 10 mg Compounded Valium and 1% Lidocaine vaginal suppositories at bedtime for over 15 years and they saved my life….they completely rid me of the acute muscle spasms I was having when I lay down. Could you benefit from a dose that might calm your anxiety?

The medicine that did work for my neuralgia was fentanyl duragesic patches. They come in different strengths. I was given the weakest one…12mcg. Can you access them? Have you been offered them?

Praying you find answers and help asap. Good luck.

hosbay profile image
hosbay in reply toKonagirl60

Basically what I am trying to find is some medication to control the mental aspect of my "pain fog" to try to prevent the escalation of pain and anxiety/nervousness which quicly happens with one feeding off the other. In other words once my pain starts to build up my anxiety and nervousness builds up which increases the pain and so on. The same build up happens if I have little pain and then become anxious/nervous which makes the pain build up and so on. As I have said the gabanoids (gabapentin and pregabalin) and Re-uptake inhibitor Duloxetine gave me pretty severe mental side effects like depression, demotivation, lethargy and breathing issues for none or very little pain reduction.

Konagirl60 profile image
Konagirl60 in reply toKonagirl60

I understand what you’re saying now.

There are passionflower tablets you can buy at reputable health food stores and in some pharmacies. They are a natural anti anxiety. Passionflower calms anxiety, nervousness, pain and it assists in sleep. There are also calming teas of passionflower, chamomile and ginger tea which calm the nervous system.

Supplement
hosbay profile image
hosbay in reply toKonagirl60

Have you tried any of them and do you think they would have enough effect to overcome a nevous system which has become extremely sensitive causing it and pain to escalate extremely quickly?

Konagirl60 profile image
Konagirl60 in reply tohosbay

Absolutely! I was left in life threatening pain from a crushed nerve athletic injury. These passionflower tablets are the best. You can take them throughout the day and you’ll be fine.

I live with Central Sensitization having been left in utter agony for 13 years. I couldn’t live without passionflower.

Cpsp1 profile image
Cpsp1 in reply toKonagirl60

Can I ask have you tried anything that helped to reduce the sensitisation ?

hosbay profile image
hosbay in reply toCpsp1

Just the 3 I mentioned

Cpsp1 profile image
Cpsp1 in reply tohosbay

No physical things placed on the skin ?Mirror therapy ?

Konagirl60 profile image
Konagirl60 in reply toCpsp1

Yes, if my nerve is in a flare I apply icy pain patches to my right anus and lower right buttock. This brand is the best. They replace ice.

Pain patch
Konagirl60 profile image
Konagirl60 in reply toCpsp1

I take 50mg Amytriptyline and a sleeping pill along with passion flower at 7 pm every night and I have for over 15 years.

OSTEOARTHRITISRA profile image
OSTEOARTHRITISRA

Hi i have tryed them The

Amitriptyline was not for me

Is for lots though early evening best to take increasing dose to wot suits under doc guidance.

The

Diazepam does work wonders

Only had a couple times most emergency

It is highly addictive though and usually not given long term

If doc offering worth ago

Sometimes it takes years for right meds

And deffenetly worth trying

Everyone different though I have tryed the ones you have already took

Pregablin Now my main one

Max dose 600mg

With other pain meds low dose

Another imput

Lots of of combined meds low doses helps

If can take long term

Paracetamol works wonders

It helps all your other pain meds work better

(Apart likes Co.codamal)

The brain fog as above reply

Good luck with meds to help you

Cpsp1 profile image
Cpsp1

Hi, please check with someone qualified as I am just some random bloke who suffers with chronic pain.

For some chronic pain, the medics often prescribe the anti epileptics you mention in conjunction with the anti depressants you have also stated. As I understand it, it's because they try to reduce different types of pain.

I have also seen suggestions to combine with paracetamol. Although that has little to any help on its own.

Each medication has a NNT score which doesn't seem to be widely published. This is the number of people who need to take it before 1 person benefits.

Unfortunately some of the medications you have mentioned have a score of 7. You might find posts along the lines of, rubbish, didn't work for me. That unfortunately isn't "news", it's totally expected.

I believe even paracetamol has score of 2.

They also have another score which relates to number of people who will take it before 1 suffers a side effect.

Unfortunately someone has to be that 1. There is also that the more you read about side effects, the more likely you are to develop them. Known as Nocebo.

If you convince yourself a medicine will definitely work, it's more likely to. Always wondered why they don't write, it will definitely work on the side of the capsule.....

If you have access to a NHS pain clinic (referral from GP ?) they might be able to come up with ideas to minimise it. I believe that the psychology angle within the pain clinic would be to create capacity within your central nervous system "bucket" so that adverse feelings/sensations don't take up all the space. Without it, any single additional perceived adverse event causes the bucket to be full and unable to cope.

A learned behaviour/response can also be unlearned. Your basic caveman, last time this event happened, I responded with this to the "threat" and we didn't die, so it must be the right response for next time. Fine to respond in the same way if it was a lion chasing you, not so good here.

It's possible quality of sleep impacts and if you snore, a sleep apnea test might help.

Hope this helps.

hosbay profile image
hosbay in reply toCpsp1

Thanks. Are you a fellow pain fog sufferer?

Cpsp1 profile image
Cpsp1 in reply tohosbay

Yes I am. It has improved of late though, quite considerably so. It feels like I am more awake and can undertake more intensive tasks before it kicks in, if it does at all.It feels very much like an overload situation where my brain is either receiving too much sensation info or just cannot process normally what it once could.I have sleep apnea, 2 types. It has taken me quite a while, a number of different masks using a cpap machine and my apneas (each time I stop breathing) have been falling week by week.

Nothing else has changed for me. Same, possible not that effective medication so I am thinking it's better quality sleep which has given my brain a proper rest at night. That I think has lead to it being more able to cope and less fog.

hosbay profile image
hosbay in reply toCpsp1

Hi again

What you say makes a lot of sense and, at long last, someone who understands and has by the sound of it, like me left no stone unturned to try to find a cure or, at least, things to alleviate it.

Cpsp1 profile image
Cpsp1

Yeh, in truth, it hasn't been my primary focus, my pain is severe and at times excruciating and is my number 1 issue to resolve.I wondered if it was related to that, it perhaps is partly but it seems it's not the only driver.

It was your post that made me think about my brain fog. When it's not so bad, it's like a weight has been lifted, and its easy to forget it ever existed. It's not gone but its like the dial has been turned down a bit.

The only other thing I can think of is I have deliberately lifted my fluid intake.

Have you noticed any patterns with yours ? Time of day, or after some activity ?

Ok first thing in the morning?

hosbay profile image
hosbay in reply toCpsp1

Never really noticed a difference in fluid intake an d I don't expect there has been as I have to be careful with fluids due to prostrate problem.

hosbay profile image
hosbay in reply toCpsp1

Sometimes physical defects cannot be resolved and, in some cases, may get worse with time, Chronic pain tends to leave long - lasting changes in our anatomy and behaviour. I believe neural systems change (some say it becomes "over-sensitised"), In my case it did not just become over-sensitised it fundamentally changed such that a scs implant procedure was terminated during insertion because the surgeon said "my nerves were too damaged" probably as a result of several years chronic pain. Nerve damage does not just affect perception of pain it also affects movement and tissue condition (motor and autonomic nerves) which, combined with restricted movement due to pain, often results in body condition, strength and mobility. I think that you are correct in saying that "little things" can perhaps make a difference to pain and "pain fog". In your case possibly better quality sleep has made a difference. Also changes to thinking processes, relaxation techniques, etc all help.

I searched long and hard for a "silver bullet" but I never found one so onward and upward trying to change things which hopefully will make a difference.

Good Luck in your journey.

.

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