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

@TinselTitsAndGlitteryBits

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 goodness I need up my game on the name! Welcome to the thread. Wow £200 for CBD oil is defo expect magic cure for that much. As someone said I wish they would lose rules on medical cannabis. They only option left is to grow yourself if have space and actually know a dealer or risk buying goodness knows what. I wouldn’t have clue where to start.

Also up early swigging the gaviscon was on PPI for years that worked great then all my for no reason at all stomach issues and now make pain far worse.

Morning all. Jeez it's a cold one!

@toodizzyizzy I've heard of Thoracic Outlet Syndrome. In on a few facebook groups for similar medical conditions and it's been mentioned by a couple of members.

@TinselTitsAndGlitteryBits Same! I have one hip constantly popping out and severe back pain for months. I've not had any imaging on my spine for 25 years when I had a car crash, and feel sure there's probably some degenerative issues. I've also asked about Ankylosing spondylitis. Waiting to hear back from Rheumy. Was diagnosed with hEDS 6 days shy of turning 50, so yeah, major damage already done!

@HerRoyalHappiness EDS really is a bastard isn't it. I have acid reflux and feel permanently nauseous. I follow a really strict FODMAP and low histamine diet. As well as lactose free. It sort of keeps a lid on the more severe gastro issues. Such fun eh?

Re: CBD oil. Tried it. Revolting and didn't work on me. Everyone I know who's tried it (including the really expensive stuff) says it either didn't work, or worked initially then the benefits wore off with continued use. Which I think is always going to be an issue with that type of thing pain wise. It's just a bloody expensive scam in many cases I think.

Morning everyone!

Sorry some of you had such a bad night.

I am up, sitting outside a swimming pool as usual. It's so uncomfortable, I have to keep getting up and moving around.

I tried the CBD oil last night. It really does taste disgusting. No idea if it did anything but I still woke up with excruciating pain in my hip/leg so it can't be that good. I definitely didn't spend £200 on it though!

The gabapentin I'm on doesn't seem to be making any difference either. In fact nothing bloody works. Feeling very fed up with it tbh. Fed up with falling asleep in inappropriate places because I'm so tired. Fed up of getting irritable with everyone because of the pain. Fed up of not being able to live as normal. 😕

Sorry. I know that some of you have far worse issues than mine, but am just feeling super crap right now.

Sigh.....

I’m feeling fed up to up at 730 on Sunday I mean come on! Not like have kids to get up for. I really hate weekends, I’m on my own all time but least week days have radio shows in the day and decent TV evenings. Weekends one long slog of nothings.

Debating head under cover and go back sleep or get up do half hour tidying up tip off flat.

Morning all. Another good nights sleep for me which was lovely.

Ankle pains are bad this morning so I've popped a couple of codeine. It's freezing here today and the cold definitely exacerbated pain levels.

Re CBD oil - I buy from a lady on FB, it's £100 a bottle and very high strength. It doesn't have that awful muddy grass taste either.I don't want to put her details on here but if anyone wants to know send me a PM and I can put you in touch with her.

(Conscious I sound a bit like a drug dealer 😂)

@toodizzyizzy

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?

Nerve pain is horrendous isn't it. I have motor and sensory neuropathy in my lower legs, ankles, feet and hands. I have a constant drilling pain in my ankles and feet are being stung by a million angry bees. It literally came on in about a week after a nasty virus attacked my nerves. The neurologist and neuro rehab think the pain will always be there but they are hopeful I may get some movement back and be able to walk again.

I'm on 40mg amitryptaline on a night which eases it enough for me to sleep but then as soon as I wake up it's back. Finally managed to get my cocodamol reinstated but am desperate to see pain clinic and discuss what else is out there to try.

I allowed myself one Cocodamol at 4.30 am as I had been awake on and off since 1.30 am with pain in my calf ☹️, finding it very difficult to turn over in bed too so hard to get comfortable.

I tried CBD for a long time and it seemed to help at first then honestly felt at around £40 a month it wasn’t making enough difference.

Managed get up washed some dishes and make massive pan pasta. Well emptied pack pasta and jar of sauce hardly cooking. So one for tea and 5 in freezer. Result. Least if I don’t get out bed rest of the day I’ve done something make my life easier in the future.

Took meds earlier as well just so could do stuff and back on ice packs. Did anyone else read the Addiction/dependence thread? Think it was one of our regulars but I know some of us use different names for here and on other boards.

I've not read it @Akire but have seen it in active. I keep meaning to give it a read.

I'm making pasta for tea. Gluten free pasta is surprisingly nice, so a cheese and bacon pasta bake with cauliflower and broccoli for tea tonight.
Luckily DS1 is now 13 and loves to help out in the kitchen so even if I'm in too much pain, he'll help me.

@HerRoyalHappiness

I've not read it *@Akire* but have seen it in active. I keep meaning to give it a read.

I'm making pasta for tea. Gluten free pasta is surprisingly nice, so a cheese and bacon pasta bake with cauliflower and broccoli for tea tonight.
Luckily DS1 is now 13 and loves to help out in the kitchen so even if I'm in too much pain, he'll help me.

It's so helpful when youve got someone there who enjoys cooking isn't it!

I can't stand for long enough to prep and cook properly and even 10 minutes on the perching stool leaves me in so much pain from my bulging flipping discs.

DH was doing all the cooking but his new job means he isn't back until 8.30 most days.
DD(12) likes to cook simple stuff, pasta bakes, pitta pizzas etc.

Totally appreciating DD(17) at the moment as she is at college doing professional cookery and loves trying out new recipes on us. She made a chicken consommé thing last week, a big batch of creamy mushroom soup, fresh bread, fresh pasta. I could definitely get used to this!

I've not seen that thread either @Akire but I'll go have a look for it now. I've done similar to you. Had meds, was able to get up and do few dishes. Back to lie down. So filling cold and really can't be arsed yet to deal with fallen garden fence. To bloody icy to step outside atm anyway.

HerRoyal Your pasta sounds nice. I agree, gluten free pasta is pretty good. I tried fresh lentil pasta a while ago though and it's bloody awful! It just sort of times to gritty mush in your mouth!

Wow mine was literal pasta and jar sauce. Impressed with all added bits. I may do spoon full frozen seeetcorn later if I feel like going extra mile. I used have carers into cook but most generally hopeless or go so slow it was beyond. 20min chop an onion I was a lot worse then at least now I can cook big pan now and again then throw something in the oven from the freezer.

Can't find that thread. Going to try and do a little bit tidying up instead.

Hi @TinselTitsAndGlitteryBits, also have EDS. It can be such a nasty one. I also get that feeling from CBD oil. I have cam deformities and a right labral tear.

@toodizzyizzy did they identify a cause for the ToS (like a cervical rib). I don't have any advice, but I do know of people who had it and had procedures that didn't solve the actual cause.

@HerRoyalHappiness also prone to awful reflux. I was diagnosed with h pylori week before last last and hoped the antibiotics might help, but had a negative clo test before and bad reflux so I'm not holding out too much hope.

My TENS pen arrived and while it's not giving me relief as such, I have identified 2 trapped nerves and exactly where they're trapped so I'll see if my physio can help with that.

My back is still good today following the Racz Procedure, face isn't as flushed from the steroid as it was yesterday. Might even manage a short walk with baby in buggy today.

@toodizzyizzy my tens machine works a bit for nerve pain, doesn't make it go away but reduces it enough to think straight for a while and sometimes sleep. Also very hot heat bag things help some. I'm not on any meds for it except ibuprofen (which I try to reduce using too much hence the other methods, plus it's fairly useless) though, so might not be as effective in your case.

Sorry so many of you were up in the night, hope you can get a bit of rest today. I was up sick until 4am so that was fun. Cancelled plans today and I'm resting in bed with small meals and hoping I feel more with it by tomorrow for work. Thankfully only two days a week at the moment.

@bicyclesaredeathtraps 4am blimey you must be shattered. Hope you managed a nap today.

Thank you for welcoming me to the group. Tens machine seems like a good suggestion, so I'll definitely explore that. The CBD oil seems unreliable, so I'll leave that for now. Hi @Akire I agree that medicinal cannabis seems the best hope for many of us, but I just don't see that happening any time soon sadly.

@TinselTitsAndGlitteryBits Do you have a helpful physio at least? That really is a big obstacle if only physio can refer, as if there isn't enough delays and hurdles!

Hi @RainbowZebraWarrior It's good to connect with someone who has at least heard of my condition. Are you on any chronic pain FB groups that you would recommend?

Hi @SpookyScarySkeletons It's scary how a virus can can cause so much nerve damage. From what I understand nerves do repair themselves, but at a very slow rate so hopefully there is some end to this for us. I think I need a referral to a pain clinic too, though I don't know what they could do to help...

Hi @BackinBits My ToS is from an accident. It's a very brutal operation, I wasn't prepared for how hard it would be. It seems I have to wait 2 years to know if the operation was a success - and I need the other side doing 😟

Hi @bicyclesaredeathtraps I love my heat bags, the hotter the better - though now family insist they check how hot they are after I accidentally burnt my neck! Sorry to hear you were sick in the night, that's tough. I hope you feel better by work tomorrow.

That's a long message for me, apologies for typos and any replies missed

@toodizzyizzy awful to have a repeat of something you found so tough hanging over you. And 2 years is a long time to wait for relief.

@toodizzyizzy I'm on a few, mostly specific for my conditions. But the Neuropathy Support UK facebook group could be a good one for you. There seems to be people there with a range of different nerve pain conditions. Someone on here recommended it on the last thread.

Sorry, it's this one if you want to look for it.

@RainbowZebraWarrior Thank you, I have put in a request to join. I'm on a FB support group for ToS but it's a small group and I think there could be much to learn from similar conditions

@BackInBits It's been a really shock, but at least there is some hope the operations will work. It's going to take too long to save my job and I need to keep hold of my sanity in the meantime 😅

I was up at a quarter to 6 today in pain but at least it was snowing and pretty it’s mostly gone now though. I’ve been so tired and achey today keep thinking today will be the day my sinuses get better but no luck so far. Chest feels heave and sore too. If only i could have about 2 weeks complete rest from work.

Put my Christmas trees up today that was my energy for the day spent though. DC are happy though.

It’s still Sunday how can this be?! Sympathy for those off to work and who want this to last forever but I’m sooooo bored.

Also hating my last weeks haircut, it looked great while there but of course I’m lucky if I brush it never mine wash blow dry and straighten it so looks a tight mess. My fault for letting him go overboard but do I look like person faffs with their hair?? Sigh

My hair always looks a mess @Akire. My default is a top messy bun with a stretchy headband to catch the wispy bits!

Snow is here to stay in Yorkshire. Got about 3 inches and it's -3 outside so it's fully frozen over. Am at hospital tomorrow to review the orthotics that I can't even get on on my own and squish my toes so I need DH to dig a patch to the car and grit it. I'm really scared I might fall as I'm almost topping just walking on carpet!