CHRONIC PAIN- things that help.

[picklemewalnuts]

This is a 'no comment' thread, so we can list what has helped us, ask each other questions about it, but not argue or disagree about whether it's a 'valid' treatment or not.

!!Buyer beware!! We aren't medics, don't buy anything or take anything off the back of this thread, these are simply 'things that have helped'!

Me first:

1. Exercising in warm water really helps my tired stiff achey body. I joined a local health club that had a warm pool and jacuzzi, with steam rooms and saunas. I miss it so much now it's closed! It helped with relaxation, and also with flexibility. I could exercise without hurting myself.

1. Amitriptyline. This helps me sleep and is pretty good on nerve pain- the shooting pains in my limbs, and neck pain. I vary my dose up and down by 10 mg, trying to keep it as low as I can manage.

@akire these people

@Akire I get the tank on prescription by recommendation of the neurologist and is delivered by the local pharmacy. I have no breathing problems or chest related but the oxygen is to help with the pain of migraine as hi flow in short bursts with a rebreather mask takes the pain down, I had tried a lot of things before trying this (various medications, Botox, physio) as when migraine pain is too much my body trips over onto functional paralysis so if I can avoid that, it's all the better. When needed i use it every 3-4 hours.

Can I ask those of you who are taking magnesium, have you low magnesium/
I was given a drip of magnesium about 5 days ago after ending up in A&E with pain and other symptoms such as fainting and vomiting. I presume my magnesium was low if it required a drip in hospital. Have you had your magnesium levels measured?

Medfit ultrasound machine. Best thing ever for tight muscles and muscle pain.

Far infared heat blanket.

Pilates.

@sleveen I take two powder sachet each morning of magnesium mixed up with water, my levels have been low for a number of years, each time I try stopping it drops and so I end up with the sachets again, at times have had to increase sachets above the recommended dose as per my specialist. I accept that I don't process magnesium well, Epsom salts bath leaves me in a rash for about a week afterwards no matter how well I rinse. Magnesium infusions hardly raise my levels (we tried those to help with my migraines, 10mg iv across 5 days while in hospital to try and get migraine under control) my levels remained low but I had awful track marks from my veins. The sachets seems to help but I often have spasms, that's normal for me now.

Baths with Epsom salt
Weighted blanket
Heated packs
Knee brace!

@PerkingFaintly

The antihistamines have helped significantly with the brain fog, too.

That's really interesting, my brain fog is beyond ridiculous at the moment. May try this. Thankyou ! Warm water for me. Diazepam and amitryptiline too. Cut down on meat but I don't think it's having any effect. Plenty of sleep, firm mattress, swimming and less stress.

Elevation where relevant, above heart.
Instead of ice, Picnic packs of gel and plastic marbles. they mould to shape better and are not so hard as ice
For back pain, some times it helped to use the weight of my head to stretch my spine, by kneeling/not kneeling one side of a kitchen chair with head and shoulders drooped over the other side. Alternatively, hanging over the back of the sofa.
Gel for lots of things. Shoe insoles, better than foam. Making softeners for leaning the hand on a crutch handle (Best of all is a sheet of what looks like oxo cubes on a roll)
Always get shock absorbing ferrules for crutches.
Use arm crutches and arm walkers/rollators if possible, so as to avoid wrist injuries
BE OBEDIENT. Decades of chronic pain habituate into ignoring the messages from your body.

Fine, if the message is telling you something not worth knowing. But, often, you are ignoring a perfectly valid alarm bell going off.
Experiment with the novelty of listening to the information you get, because permitting yourself to pay some attention to the pain may give clues on avoiding doing what makes it worse, which may not be instant, so it needs a considered thought process and analysing what could be a connection.
e.g. Oddly, my back is willing to let me put a damp mop round the floor, but absolutely will not stand for something in the movement of using a vacuum. There must be something similar, in the twist of leaning down to the bottom of a supermarket trolley, and unloading onto the belt. These two things are totally forbidden, by my spine, though the physical movement is possible to make. If I stupidly try to make an exception, then hours later or for the whole of the next day, I will regret it. Merely ignoring pain would never have given me that
pain-avoiding tip.

My electric heat pad. Couldn't live without it.

A nice sunny day.

Wine.

These are all things which have made my life easier and some help with pain/ fatigue/ cog fog which I am counting under this as all helps with pain overall

For a bit of context I have been in a care home before I was 40, full paralysis for months at a time, been fully bedbound, learned to walk 3 times, learned to write twice, lost my swallow for 4 months.

I'm now in better times and living independently with some bouts of temporary paralysis. 😀. So here is a random selection of tips. I've tried to put them in groups. Hth

Keysafe at front door - so others can access my home if needed and I can't answer the door (e.g. If paralysed):

Alexa - I have it linked up so that I can make phone calls so if I wake up in paralysis, I can get it to call x or y as numbers I have got it to remember

Grabbers - useful for picking stuff off the floor or chasing my cats with

Lifeline system - I have a button around my neck in case of emergency, they will call my nominated numbers or emergency services

Nasal dilalator clip - helps keep my airway open at night

Terry waterproof mattress protector / kylie sheets - helps to keep my bed dry and the mattress from getting wet due to incontinence

Silicone laces - I change all my footwear to these as it means I am less likely to trip and its put them in once and it's done for future

Personalized self adhesive address labels / ink stamp pads - if posting anything I add a label as to who it's from - if it's a card I ink stamp it with my ink pad and my stamp that says "from frogs" - obviously my real name.

Compression socks / sleeves / gloves - helps to stop pooling

Bed bath wipes / Cleansing foam / Shampoo caps / Towel off shampoo
These are all very useful for when unable to have a shower, the wipes and shampoo caps can be heated in the microwave. (The shampoo caps feel orgasmic to me)

Writing bird - this was very useful when I was learning how to write again

Radar key - this allows access to disabled toilets across the UK

3d sleep mask - this helped improve my sleep by keeping it fully dark but without touching my eyelids

Pain gone pen - this works on a similar basis to a tens machine but is best used on a small localised area

Soda stream coca cola syrup - a shot glass of the syrup cold and neat which gives a caffeine hit

Dental finger wipes / Dr Barmans super brush / Dental chewable toothbrush - rollybrush - helps when struggling to brush teeth

Chewigem necklace - looks like a "normal" necklace but is good to chew if that helps to feel more grounded but doesn't show any wear and tear
Fidget toys -assorted - helps as a distraction technique

Crutch pod - this is useful to attach for crutches (I had 4 year's on crutches) and is a holder for phone, bottle of water and keys and doesn't knock out the ergonomics of the crutches and balance

Knork (knife and fork weighted) - this has helped when I was learning to feed myself again as it's is combined and the weight makes it easier for me to hold onto

Headphones - this can be used to block sounds or to play music or podcast
Musicians earplugs - this helps block out sounds but without blocking out all speech

Orajel dental gel - this is useful when I have chewed my inner mouth or lips to much

Egg cooker - as makes it easier to do a few at a time and means I eat better

Video door bell - helps me to feel more secure which helps my C-ptsd

Tub of urinalysis strips - this is useful to self test when I have the first symptoms of a uti / kidney infection so I dip and if it shows that I need antibiotics, I take a photo and email it to GP who prescribes as needed

Dossette pack - this is done up by the chemist and I get one week supply at a time due to past unsafe times. All my meds are packaged into the time slots.

Sheewee / bedpan / Bottom wiper - for helping clean up / when was confined to bed

Shower chair / bath seat / Toilet surround / commode - to raise up and support around me when needed

Tube squeezers - to help get stuff out of tubes when my hands weren't working

Shower foot scrubbers - goes on the floor of the shower and rub feet through them

Long handled sponge or pouffe - I use separate ones to apply cream and for washing

Back scratcher / Scalp massager

Dermol lotion / Cavilion cream/spray - this has helped stop my skin breaking down due to urinary incontinence

Tiger balm rub neck and shoulder /
Tiger balm rub red - helps with the pain at times

Grocery delivery pass / saver

Jar opener boa / Ring pull opener - for opening jars and ring pulls

Leg lifter - for moving my legs when I physically couldn't

Pill cutter / crusher / pill glide - the glide is for helping swallow pills when my swallow was Dodgy.

Therapy putty / Pedal excisers / Exercise ball - for strengthening the core and improving strength in hands and legs/arms

Squatty potty - to raise my feet up on the toilet

Bed wedge / Overbed table / Bed rails to support getting out / Bed ladder to support sitting up / Bed cradle

Heel protects / Sock aid - the heel protects help prevent pressure sores and the sock aid is useful for getting compression socks on when needed

Donot cushion - to help relieve pressure on my tailbone / nether regions

Communication book - for when my speech is kaput as no one can understand me so I try and say what I mean and other person points to what they think it could be on the book and I make one sound for yes and 2 for no

Dictation software / Audio book / voice reader - for letting me dictate rather than typing and reading back to me

Great thread and advice, thank you everyone.

@NotanotherboxofFrogs I have a progressive neurological condition as well as my multiple pain conditions and diagnoses.You have given me several great tips in there, so thank you for taking the time to write all of that.

Correction: That was meant to say that it helps with my migraines of I take my rescue meds with it.

Soda stream coca cola syrup - a shot glass of the syrup cold and neat which gives a caffeine hit, The caffeine opens up the blood vessels.

No problem @BensonStabler, glad to be able to help, I have another list in the pipeline. I was only adding for context why it covers such a range of abilities as not everyone will be at extreme ends.

You've made me remember another tip AnotherboxofFrogs.
I use a silicone spatula to apply cream to parts of my body I can't reach.
It's really handy and cheap.

Excellent tips @NotanotherboxofFrogs. Really helpful. We use some of those but I'm going to cut and paste it for DD to look at

Downloaded an app called Curable, which includes various strategies like meditation, visualisation, brain training techniques.
The mind-body connection is strong.

I realised my pain was connected to stress/emotions and that a lot of chronic pain is.
Absolutely life-changing for me.
90% reduction in pain level within weeks and had never return the level it was before (after 15 years of chronic pain).

I also read various books on the mind-body connection and still use meditation and journaling to keep the pain at bay and prevent flare-ups.

Hot water bottle
Gin
Walking stick
Big fluffy feather pillows
Wine
Small dogs who love to cuddle, living hot water bottles.
Must get a new mattress, ours is old & getting lumpy.
Not overdoing the walking
Hot showers, struggle getting out of the bath.

Hello everyone - we'll move this over to the new Chronic Pain topic now.

Amitriptyline worked wonders for me. I wasn't keen but was desperate and stuck through the first week which was difficult and surprisingly it worked.

My pain is in my lower legs, ankles and feet. Things that have helped so far:

Amitryptaline
Codeine
Wine
Sweet sleep magnesium butter on my feet and legs at bed time
Warm bath (this is a new one for me. I've spent the last year unable to get in and out of the bath as my legs are so weak and unsteady but I splashed out on a bath lift and OMFG it's amazing)

Bought myself a tens machine to try and help sciatic pain due to nerve damage from a horrendous prolapsed and burst disc (onset last June).

It's helping 😊

Also had a steroid injection into my Piriformis muscle (which was misbehaving due to less exercise etc) and that helped too 😊 (done privately mind)

Have started Pregabalin. 75mg morning, 75 evening. Been on it ten days and it’s not doing a great deal. Bearing in mind that I also take Tramadol and Paracetamol, I’m a tad disappointed. Those who are experienced, should I ask to increase the dose. I have PsA, osteoarthritis and EDS.
Thank you.

Hello, would it be okay to ask who you neurologist is please? at my wits end with pain. thank you