Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

Welcome all new friends. @Iklboo I feel I know you from other threads. Maybe Christmas / Preppers or the Neuro Diverse threads. Nor sure which. Actually it may be Coronavirus thread. Anyhow... hope everyone is safe and well tonight. We have snow here.

@RainbowZebraWarrior - I think it might be the Christmas threads? Nice to see you again.

Hi everyone, been feeling tired and not very social after being a bit busier. Still waiting the results of a liver scan I had in September, called in at the surgery this week for a couple of appointments and couldn’t make the asthma check up one as the letter could have been from one of 3 places

I have also discovered I had my second episode of hemiplegic migraine after my first dose of COVID vaccine (I had to wait to be unblinded on the vaccine trial I was on to find that out), the first one was after a suspected COVID infection last February. They said I should speak to my GP about getting the booster and possibly get a neurologist’s opinion. I have settled for writing to the GP and as my neurology referral was refused before am not holding out much hope.

I had to fill out a form for the optician the other day which asked for your hobbies, I was tempted to put attempting to communicate with the NHS!

In more good news my eyesight has got slightly worse in one eye and my eyes are not working properly together so I will need to wear my contact lenses less and new glasses with a corrective prism more. I also have early signs of cataracts which will need monitoring. I am only 57 😩

@Akire

Hi of course you are welcome we have group regulars but also people who pop in now and again just to scream when gets to much!

We only had these boards since mid August so still getting to know everyone. What sort pain gives you most trouble? Or is it combination of conditions?

Thanks! I have suspected functional neurological disorder (in the wrong country to get it officially diagnosed atm) which for me means muscle pain due to spasms/ motor tics, joint pain because I'm using my limbs wrong as they no longer do what they're told, and nerve pain which is my least favourite. Also regular stomach pain because my body can't tolerate much food at a time and I forget this until it's too late.

Thanks @Akire

Very apt name as I'm always frazzled!

I have a tens machine which is great but it suddenly stopped working yesterday I got new pads for it and they worked fine to start with but now don't...

Oh no do you think its the wires? Have you pushed them into the pads properly? Did you buy proper replacements? I get generic ones on Amazon which are great and like 10% price of the originals

@bicyclesaredeathtraps sounds like pretty much everything hurts then

Yep pretty much everything hurts... I'm not sure, the connections seem solid enough, like they snap on and everything (it's the popper kind). I need to do some proper testing and/or order some new pads to see if it helps but I don't have the energy

@HerRoyalHappiness

My date went well. Hes so lovely. I offered to pay half of the meal and he told me not to be silly. We're meeting again next Saturday. He said he can't do the Saturday after as he's out with work for their Christmas do. I laughed and told him that's fine, he doesn't have to explain himself!

Excellent news!

@iklboo

May I please join? Two protruding discs at L3/L4. One is impinging my sciatic nerve on the left hand side. Also osteoarthritis in my left hip.

Currently on tramadol and I take an amitriptyline as well at night to help me sleep. CBD oil didn't help me at all but the Voltarol (Voldemort) gel takes the edge off a bit.

Laughing at Voldemort gel.

I felt really weird on CBD oil. I know it's not supposed to be psychoactive, so maybe it was a nocebo but I really hated it.

@sweetkitty

Thanks for the new thread *@Akire*

The neurologist I saw for my migraines wasn’t very helpful at all, he said I was taking too many sumatriptans too but I can go weeks without taking one then I need maybe 4-5 in a week it just depends. He said I’ve to go cold turkey and have a migraine without them. Sorry but no I’m not spending 2 days in bed unable to function, eat, drink or talk when there’s something that may help. I’ve toyed with Botox too even paying private. Speaking of which I’m getting my new mouthguard to stop me grinding my teeth at night to help with TMJD. What the specialist did say is try and wear it as much as possible during the day too erm no 1) I have a job where I speak all the time and 2) my life is hard enough, my body already feels heave and sore without having a mouthguard in my mouth too

Sorry to rant but it just does seem like one thing after another doesn’t it? I’m interested in a TENS machine now some of you are using them for pain I’ve never used one before? Wondering if it would help? You know what it’s like you’ll try anything.

I find TENS hit and miss, but have tried and continue to try it for pretty much everything. I'm trying out my new TENS pen when I get home

I fixed my tens machine issue! It turns out with these pads I need four connected at once to the same outlet instead of two (I was using six so couldn't work out why two of them weren't working).
I would definitely recommend them, mine was only 19 euros and works fine, but I know they don't work for everyone. A cheap one is worth a shot though. Mine can be battery operated or hooked up to the mains to save battery life, which is convenient.

Thanks for the TENS info I’ll put it on my Santa list lol I can just imagine all of us with the pass all over our bodies lol

Earlyish bed tonight as I don’t know what time the pain will wake me tomorrow morning and I have heavy periods and cramp I am on the mini pill and didn’t have periods for years on it but the past 6 months I’ve been having them again heavy and lasting over a week. Don’t don’t if it’s some peri-menopausal thing (I’m 46) or what’s going on? Maybe if I ever get to talk to a GP I’ll ask them

Hello, I'm happy to see there is a new thread to join. I have a chronic pain condition called Thoracic Outlet Syndrome, it's an usual one so I don't expect anyone to know about it. Though I do recall @Akire being very friendly in a past thread and @fairycakesandtea7 and I had operations at a similar time over the summer. I've had some complications since the op, so I'm not in a great place either. I have limited use of my arms so using a forum is a bit of a challenge 😅

Does anyone have any advice for nerve pain? I'm maxed out on tramadol, pregabalin and nortriptyline. I'm really.sorry to hear your nerve pain has got worse @fairycakesandtea7. My consultant said to allow up to two years for the nerves to recover, have you been told similar?

@toodizzyizzy sorry I've no advice. But im up at half one in the morning because I'm in too much pain to sleep.

@HerRoyalHappiness Sorry you are too. I'm often awake at this time. There's little to distract from the pain when you're led in bed in the night.

Yeah, its difficult. I have really bad acid reflux tonight too. Part of the joys of having EDS.

Hey all, new here.

Have hEDS, which is manifesting (at the moment) as severe back pain and a very loose, unpredictable hip joint that has subluxations on a regular basis.

I'm currently taking ER morphine, with top up oramorph as needed.

Nice to meet you all!

Hi @TinselTitsAndGlitteryBits EDS is a bastard (fellow zebra)

Hello @TinselTitsAndGlitteryBits Love the name Wow that sounds incredibly painful, have you got surgery booked in, or anything on the horizon that can offer relief?

Hi @HerRoyalHappiness hope you get some relief from the reflux soon. I've been having to sleep with my head elevated since my op 4 months. I'm really sick of it, I just want to lie down! I really best try to get to sleep. Nice to have met you both. I'm glad I posted a message this night

@toodizzyizzy yeah, I'd love to be led down right now! I think I could sleep if I could just lie down!

@Akire

I’ve tried it high strength 6000mg boots sell high strength that’s about 1500mg so names mens nothing. Can’t say it’s a miracle but took it am and on for about 6 weeks and didn’t really notice a change. Will use the rest of the bottom up though. Think others have had more success with the THC but I’ve been to chicken try!

To much Tv so ready for bed now

I've tried CBD oil.

I spent nearly £200 on the strongest bottle the company (Supreme CBD) had - and that was in the sale!!
It was rubbish - did nothing for the pain and had me waking up the next day with cotton mouth and a thick head; almost a hangover.

The reviews on the stuff is almost cult like. People love it and if anyone gives a negative review, they're jumped all over.

Never again.

Hi @HerRoyalHappiness- it really is. I was late diagnosed too so my body had already suffered damage before I got any results. I'm sorry you have to suffer the disease too!

@toodizzyizzy Hey and thank you I need a hip arthroscopy and eventually a replacement, but they're reluctant to do it as of yet due to my age, as the replacements don't last long and I'd need 3 in my lifetime if I was to have it done now.

I'm still waiting to see a surgeon properly too. In my area you have to go through physio to see a surgeon, GPs can't refer directly - more bloody hoops!

Morning sorry some of you were up in the night. Hope you got back to sleep.

Glad you fixed your tens @bicyclesaredeathtraps
Fab news.

@sweetkitty I’m same age as you mine also bad although finally agree I can have Mini pill after bleeding for 2y (long story constant pain not any closer just been referred!) it’s hard for women just when body is falling apart along come menopause and kicks your ass. Hello body really can’t cope now without all extra pelvic and body issues.

Hi @toodizzyizzy can’t remember your name but that doesn’t count for much the only thing found helps nerve pain I get fingers and toes is tens machine. But you are zapping pain with tens zappy pain. But slightly better to cope with.